Wednesday 26 August - Feeling a great deal better but still not 100% right. So for the first time in many months I have cancelled my golf game today. I am simply going to fuddle about, read and rest.
When I got up yesterday I was worried because I still felt ghastly but as I was scheduled to be an observer referee at the Southern Regions Girls Amateur Championships, and I knew they were desperately short of people, I forced myself to get in the car and drive to Worplesdon. By the time I got there I actually felt OK and the gentle walk around the course wasn’t a problem. A few undemanding rulings and I was beginning to feel we were back on track.
But I am tired. So today I give in……Only temporarily mind you!
One thing this has highlighted is that Dr S and I are going to have words next time I see him. I am not prepared to go through this again especially as we are due to fly to Spain four days after the next chemo and I have every intention of enjoying my holiday. Somehow we will have to come up with a solution – whether that be ditching the Neulasta injection or finding something whizzy in the pain relief cupboard.
Wednesday 26 August 2009
Monday 24 August 2009
24 August - I spoke too soon.
Monday 24 August. I feel like s**t. And am having to work from home again because there is no way I could stand the commute. I thought I would get away with the worst of the Taxotere side effects but I haven't. I have 'Bone Pain'. This means simply that all my bones ache like hell. It is a common side effect of the chemo and the Neulasta, the drug they give you to boost white blood cell count. As a result I haven't been able to sleep much, am swallowing Ibruprofen and Paracetamol as quickly as I can and wanting to sleep. It will pass and I probably over did it at the weekend by playing two rounds of golf. I've learned. Next time I will only play one round - with a buggy - at the LGC mixed open.
Saturday 22 August 2009
22 August -The tasteless diet
Saturday 22 August. Reaction to this new bit of chemo isn't too bad except that it seems to have affected my sense of taste...I really can't taste much at all. The result of this is that I am simply not hungry. I have found the ultimate diet! Sadly it won't last. The Dr S, the oncologist, says it is a very short term effect.
As an aside - my surgeon Mr P rather neatly defined his friend Dr S as a physician when he was dealing with the seroma issue just after the second round of surgery - Mr P said I should ask Dr S to drain the seroma if it needed it while I was seeing him for the first consultation. I suggested this to Dr S but he declined and said he would rather leave it to Mr P. When I told Mr P about this he laughed and said that in his experience physicians didn't like getting their hands dirty and only admitted people to hospitals to 'think' about them.
The Wig's facebook site is proving popular.
As an aside - my surgeon Mr P rather neatly defined his friend Dr S as a physician when he was dealing with the seroma issue just after the second round of surgery - Mr P said I should ask Dr S to drain the seroma if it needed it while I was seeing him for the first consultation. I suggested this to Dr S but he declined and said he would rather leave it to Mr P. When I told Mr P about this he laughed and said that in his experience physicians didn't like getting their hands dirty and only admitted people to hospitals to 'think' about them.
The Wig's facebook site is proving popular.
Thursday 20 August 2009
19 August - 4th Chemo
Wednesday 19 August – 4th Chemo session. Arrived in good time and convinced the path lab to get the senior Phlebotomist to take the bloods. No problems this time.
Everything goes well and as a bonus I don’t have to have the steroid injection so no feeling as though I am sitting on a hedgehog!
As a new twist I have to have an injection of another drug at my local GP surgery 24 hours after the chemo to boost my white blood count. Apparently this is normal, not anything particular to me. So I am given a hypo to take home and keep in the fridge overnight.
BUT THE BIG NEWS IS….. we finally have the result of the HER2 test and it is negative so I don’t have to have another year’s worth of 3 weekly infusions. This is fantastic news for me from a logistical point of view and for getting back to normal.
I confirm with Dr S that we can start radiotherapy in November when I am back from a scheduled long weekend break in Venice with a friend and that I will start Hormone therapy in the form of Arimidex a couple of weeks after chemo finishes.
I am starting to see the light at the end of the tunnel.
Everything goes well and as a bonus I don’t have to have the steroid injection so no feeling as though I am sitting on a hedgehog!
As a new twist I have to have an injection of another drug at my local GP surgery 24 hours after the chemo to boost my white blood count. Apparently this is normal, not anything particular to me. So I am given a hypo to take home and keep in the fridge overnight.
BUT THE BIG NEWS IS….. we finally have the result of the HER2 test and it is negative so I don’t have to have another year’s worth of 3 weekly infusions. This is fantastic news for me from a logistical point of view and for getting back to normal.
I confirm with Dr S that we can start radiotherapy in November when I am back from a scheduled long weekend break in Venice with a friend and that I will start Hormone therapy in the form of Arimidex a couple of weeks after chemo finishes.
I am starting to see the light at the end of the tunnel.
Early August- getting on with things
Wednesday 5 August. Starting to feel OK again but this one really hit me much harder. Manage to play golf but not well.
Sat & Sunday Now feeling quite normal again. Garden is producing stuff…. Runner beans are coming in and the tomatoes might actually make a crop this year. Had neighbours around for drinks on Sunday evening
Wednesday 12 August. Much better. Played the 36 hole Ladies Challenge Cup and was allowed to use a buggy as a special dispensation…what luxury! Still played crap golf but it got me out and about.
Monday 17 August. Played the LGC Open and came second. Finally starting to play a bit better. Won a Callaway Golf Bag and some good balls.
Tuesday 18 August. Started the pre meds for the 4th Chemo. Mega doses of steroids and despite taking then early enough I was wide awake at 2.30 am having the most wonderful creative ideas for all sorts of stuff. Sadly most of it had faded by morning.
Sat & Sunday Now feeling quite normal again. Garden is producing stuff…. Runner beans are coming in and the tomatoes might actually make a crop this year. Had neighbours around for drinks on Sunday evening
Wednesday 12 August. Much better. Played the 36 hole Ladies Challenge Cup and was allowed to use a buggy as a special dispensation…what luxury! Still played crap golf but it got me out and about.
Monday 17 August. Played the LGC Open and came second. Finally starting to play a bit better. Won a Callaway Golf Bag and some good balls.
Tuesday 18 August. Started the pre meds for the 4th Chemo. Mega doses of steroids and despite taking then early enough I was wide awake at 2.30 am having the most wonderful creative ideas for all sorts of stuff. Sadly most of it had faded by morning.
3 August - Chemo reaction
Monday 3 August. This last round of chemo has affected me much more than before. I haven’t been sick but the ‘blurgh’ feeling is still with me and I am very, very tired. I could sleep for Britain. I am hoping the fatigue will go in the next couple of days, as I have to work from home. If I had to do the hour forty commute I think I would be asleep at my desk by midday.
29 July - 3rd Chemo
Wednesday 29 July. 3rd Chemo day. After this I will be half way through and this is the last of the FEC treatments. The chemo nurses say these are the worst ones and that the next three are not normally so bad. Hooray!
Today I drive myself as my partner has another engagement and I know I am OK afterwards. I get there at 10.00 thinking that things will be quicker this time….but they aren’t. The vampires in the path lab have trouble getting a vein to take the blood samples from and have to call for superior help. SO I end up with two plasters from that.
Then the chemo nurse finds the lovely vein we have used the last two times for the canula is not in good shape either. Apparently this is usual as the chemo damages the veins. Great. She eventually finds a deeper one elsewhere and we start the process.
They all like the wig. More fans!
It is all becoming so normal now. I have lunch, I read, I listen to my iPod and I do Sudoku. Eventually we finish and I get my anti sickness drugs. The only thing different is that I am given additional steroids, which I will have to start taking before the next chemo session as part of the protocol for the Taxotere drug. No Dr S this time as he is on holiday.
My head hair is very patchy now – more and more comes out each day. It won’t be long until it is all gone but so far, touch wood; I still have my eyebrows and eyelashes. The up side is I don’t have to wax or shave my pits and bits!
So on we go.
Today I drive myself as my partner has another engagement and I know I am OK afterwards. I get there at 10.00 thinking that things will be quicker this time….but they aren’t. The vampires in the path lab have trouble getting a vein to take the blood samples from and have to call for superior help. SO I end up with two plasters from that.
Then the chemo nurse finds the lovely vein we have used the last two times for the canula is not in good shape either. Apparently this is usual as the chemo damages the veins. Great. She eventually finds a deeper one elsewhere and we start the process.
They all like the wig. More fans!
It is all becoming so normal now. I have lunch, I read, I listen to my iPod and I do Sudoku. Eventually we finish and I get my anti sickness drugs. The only thing different is that I am given additional steroids, which I will have to start taking before the next chemo session as part of the protocol for the Taxotere drug. No Dr S this time as he is on holiday.
My head hair is very patchy now – more and more comes out each day. It won’t be long until it is all gone but so far, touch wood; I still have my eyebrows and eyelashes. The up side is I don’t have to wax or shave my pits and bits!
So on we go.
25 July - a bit of a worry
Saturday 25 July. It is the evening and I have played a friendly round of golf with the girls and taken the money so to speak. But I am now a bit concerned as I have a sniffle and a bit of a sore throat. When I get to bed I am a bit croaky.
Sunday 26 July. Definitely getting something. It feels like a head cold so I take some cold and flu stuff and head off the to match I am playing in against another club. I manage to get around feeling a bit rough but we win so that’s OK.
Monday 27 July. Wake up as snotty as hell. Real head cold stuff but the good news is I am not running a temperature so it isn’t swine flu. The big concern now is that I won’t be well enough for chemo on Wednesday. This would be a disaster as my entire schedule for the next few months is set around these chemo dates. Any delay would mess up holidays, golf, work …you name it. I call the office and work from home. That night I take am antihistamine to make sure I get a good night’s sleep as I have to be at a farewell lunch I am hosting at the RAC the next day.
Tuesday 28 July. The antihistamine did its job and I feel a great deal better. Still a bit snotty but it is under control and getting better. I go in a bit late to avoid the rush hour and manage to host the lunch OK.
Sunday 26 July. Definitely getting something. It feels like a head cold so I take some cold and flu stuff and head off the to match I am playing in against another club. I manage to get around feeling a bit rough but we win so that’s OK.
Monday 27 July. Wake up as snotty as hell. Real head cold stuff but the good news is I am not running a temperature so it isn’t swine flu. The big concern now is that I won’t be well enough for chemo on Wednesday. This would be a disaster as my entire schedule for the next few months is set around these chemo dates. Any delay would mess up holidays, golf, work …you name it. I call the office and work from home. That night I take am antihistamine to make sure I get a good night’s sleep as I have to be at a farewell lunch I am hosting at the RAC the next day.
Tuesday 28 July. The antihistamine did its job and I feel a great deal better. Still a bit snotty but it is under control and getting better. I go in a bit late to avoid the rush hour and manage to host the lunch OK.
July scrapbook - normalcy, friends and birthdays
11 July. Saturday. This is the day of the big Open competition my partner and I were so keen to play. We know we probably won’t play wonderfully but you need to show up to have a chance of getting into next year’s comp (when I should be more on form).
It is 36 holes around two different courses. I am walking as we hadn’t thought to order a buggy and it is too late now. Our friends who we are playing with have a buggy so the option is there for me to ride if I get too tired.
The wig performs well although it gets a bit hot. I glad to get home and get it off.
As predicted we don’t play well but it is a great day out including a lunch that started with as much lobster as one could eat. I am exhausted and know I will crash the next day….which I do.
Tuesday 14 July. I am pretty well back to normal and am able to do my stint in refereeing at the Regional Ladies Amateur Championships. All went well so no problem there and it keeps my hand in, as I have to ‘swot’ the rules and decisions before I go.
My hair continues to slowly fall out.
Wednesday 15 July. It is the invitation day at my club and I have a friend and colleague from work attending. S has arrived the previous night from Manchester via Sweden dragging her clubs with her. The wig has its first real outing among people I know and gets a great response. Once again it performs well even staying on in the strong winds of the day. We play reasonably although not well enough to get into the main prizes. My Guest wins the longest drive by a mile and is very pleased with herself.
Thursday 16 July. My son and his girlfriend come for supper. She and I share a birthday the next day. My partner is taking me out and she and my son will be with friends so we have an early present swap. We have bought her some crystal earrings on the advice of our son. My partner has been in cahoots with the family and to my complete surprise, I am presented with a Wii system including the Wii fitness board etc. My son and his girlfriend have bought me the Tiger Woods game to go with it. My partner has also bought me the latest iPod shuffle. So tiny I am scared I will lose it but it will be great on the train and during chemo. It was a lovely lot of presents and I feel very spoiled.
Friday 17 July. Aaaaargh, I am 58 years old. I don’t feel it - does one ever feel one’s age? It is still a working day for me so we don’t celebrate until the evening. We have booked to have dinner at a lovely old Elizabethan hotel. The one we visited after we got the news about needing the second operation. One of the reasons we wanted to go back there is that during the weeks after the diagnosis we had both come to the conclusion that after living together for over 15 years, we might like to get married and this hotel ‘did’ weddings. It was a good opportunity to check it out again.
Tuesday 21 July. I’m in town at work and am meeting an old colleague at the RAC in Pall Mall for lunch. He has never been there so I am treating him.
The wig performs well and he doesn’t even realize until I tell him.
Wednesday 22 July. More golf. This time at a very prestigious club of one of my partner’s friends. I play with the guys….not too badly. The wig performs well.
Thursday 23 July. Friends from Poland who we haven’t seen for months arrive for supper and a stay over. They are amazed by the kitchen, which they have followed via facebook photos. They are gratifyingly awed by the kitchen and the wig.
We have a great supper and we play with the Wii. Very good fun!
Friday 24 July. Working from home but I find time to have lunch with some girls from my old club. Its good to catch up and introduce them to the wig. They become great fans. I will have to set up a special facebook page for the wig at this rate.
It is 36 holes around two different courses. I am walking as we hadn’t thought to order a buggy and it is too late now. Our friends who we are playing with have a buggy so the option is there for me to ride if I get too tired.
The wig performs well although it gets a bit hot. I glad to get home and get it off.
As predicted we don’t play well but it is a great day out including a lunch that started with as much lobster as one could eat. I am exhausted and know I will crash the next day….which I do.
Tuesday 14 July. I am pretty well back to normal and am able to do my stint in refereeing at the Regional Ladies Amateur Championships. All went well so no problem there and it keeps my hand in, as I have to ‘swot’ the rules and decisions before I go.
My hair continues to slowly fall out.
Wednesday 15 July. It is the invitation day at my club and I have a friend and colleague from work attending. S has arrived the previous night from Manchester via Sweden dragging her clubs with her. The wig has its first real outing among people I know and gets a great response. Once again it performs well even staying on in the strong winds of the day. We play reasonably although not well enough to get into the main prizes. My Guest wins the longest drive by a mile and is very pleased with herself.
Thursday 16 July. My son and his girlfriend come for supper. She and I share a birthday the next day. My partner is taking me out and she and my son will be with friends so we have an early present swap. We have bought her some crystal earrings on the advice of our son. My partner has been in cahoots with the family and to my complete surprise, I am presented with a Wii system including the Wii fitness board etc. My son and his girlfriend have bought me the Tiger Woods game to go with it. My partner has also bought me the latest iPod shuffle. So tiny I am scared I will lose it but it will be great on the train and during chemo. It was a lovely lot of presents and I feel very spoiled.
Friday 17 July. Aaaaargh, I am 58 years old. I don’t feel it - does one ever feel one’s age? It is still a working day for me so we don’t celebrate until the evening. We have booked to have dinner at a lovely old Elizabethan hotel. The one we visited after we got the news about needing the second operation. One of the reasons we wanted to go back there is that during the weeks after the diagnosis we had both come to the conclusion that after living together for over 15 years, we might like to get married and this hotel ‘did’ weddings. It was a good opportunity to check it out again.
Tuesday 21 July. I’m in town at work and am meeting an old colleague at the RAC in Pall Mall for lunch. He has never been there so I am treating him.
The wig performs well and he doesn’t even realize until I tell him.
Wednesday 22 July. More golf. This time at a very prestigious club of one of my partner’s friends. I play with the guys….not too badly. The wig performs well.
Thursday 23 July. Friends from Poland who we haven’t seen for months arrive for supper and a stay over. They are amazed by the kitchen, which they have followed via facebook photos. They are gratifyingly awed by the kitchen and the wig.
We have a great supper and we play with the Wii. Very good fun!
Friday 24 July. Working from home but I find time to have lunch with some girls from my old club. Its good to catch up and introduce them to the wig. They become great fans. I will have to set up a special facebook page for the wig at this rate.
9 July - Hair goes!
9 July. No queasiness and I feel well enough to go to a Pilates class in the morning. The afternoon is scheduled for the hair cut. I walk into my hairdressers carrying the wig. G comes up and I demonstrate the problem by pulling a couple of handfuls of hair out. She gets the message. We agree that she won’t shave it but cut what is left down to about half an inch. That done I put the wig on. She is amazed. It does look good. She even gives it a few snips to even up the back and the fringe. The receptionist, who wasn’t around when I came, in is in raptures thinking it is a new style from G. She can’t get over the fact it is a wig. I feel really good as I walk back to the car. I stop at a retro clothes chop that sell really fabulous old clothes and buy a couple of hats and scarves to treat myself.
I have a big week next week.
I have a big week next week.
5 July - Hair today, gone tomorrow
Sunday 5 July.
I am running my hands through my hair to get it out of my face and shock, horror….I have loose hairs in my fingers. Damn. During the afternoon I keep getting more loose hair. Not great chunks of it, just a few strands each time but it is definitely coming out. The question is will it all drop out or is it just going to get thinner? Either way something needs to be done so I book a session with my hairdresser to cut it shorter. This will be on the day after my next chemo in 3 days time. I will try the cold cap again in case this is just a thinning rather than complete alopecia but I am not holding out too much hope. Still, I have the wig waiting in the wings and have decided just to use a baseball cap for golf if it is too hot.
I am running my hands through my hair to get it out of my face and shock, horror….I have loose hairs in my fingers. Damn. During the afternoon I keep getting more loose hair. Not great chunks of it, just a few strands each time but it is definitely coming out. The question is will it all drop out or is it just going to get thinner? Either way something needs to be done so I book a session with my hairdresser to cut it shorter. This will be on the day after my next chemo in 3 days time. I will try the cold cap again in case this is just a thinning rather than complete alopecia but I am not holding out too much hope. Still, I have the wig waiting in the wings and have decided just to use a baseball cap for golf if it is too hot.
8 July - second chemo
Wednesday 8 July. Second Chemo session. Much like the first only I decide to follow the advice given to me by one of the first chemo nurses and get canulated before getting my blood taken. Big mistake. It takes them about an hour and a half to get around to putting the canula in and then I have to wait another 45 minutes for the blood test results etc. etc. So the time we thought this would save turns out to be a waste. During this time the pastoral care chap comes around and is sent away to find out when my canula and bloods are going to be done and to find the catering person so I can order lunch. I am not in the best of moods and he beats a hasty retreat. I am not sure his idea of pastoral care and mine are quite in alignment.
I opt to forgo the cold cap as my hair is dropping out in handfuls and I have already made an appointment to have it cut short the next day.
I do get to have a good chat with my oncologist as we discuss swine flu…avoid crowds but remember that the effect on my immune system is to depress my ability to fight bacteria and swine flu is a virus….good point. It is the complications of swine flu in terms of bacterial infection that would be a problem.
I raise the issue of the lightheaded effect and he suggests that this is a result of the anti sickness drugs rather than the chemo. As I am not getting sick after chemo he suggests cutting down on the anti sickness drugs. I like this.
I opt to forgo the cold cap as my hair is dropping out in handfuls and I have already made an appointment to have it cut short the next day.
I do get to have a good chat with my oncologist as we discuss swine flu…avoid crowds but remember that the effect on my immune system is to depress my ability to fight bacteria and swine flu is a virus….good point. It is the complications of swine flu in terms of bacterial infection that would be a problem.
I raise the issue of the lightheaded effect and he suggests that this is a result of the anti sickness drugs rather than the chemo. As I am not getting sick after chemo he suggests cutting down on the anti sickness drugs. I like this.
It is amazing how quickly things become ‘normal’ the IV is up and the chemo nurse starts the treatment. My lunch arrives closely followed by the oncology liaison nurse who had been on holiday the last time I came in. She gives me loads of leaflets about support groups etc…something I am not terribly interested in but she also says I am entitled to some free alternative therapy treatments and a nearby center. It turns out I can have reflexology, head massage, etc. I will follow this up if I can find the time.
All goes well and I collect my load of follow up drugs and my partner picks me up.
All goes well and I collect my load of follow up drugs and my partner picks me up.
17 June - Chemo starts
It is 17 June 2009.
I’ve had blood tests, been measured, weighed, tagged, had the usual observations done, and had my medical details recorded yet again. I have a canula in my wrist attached to a collection of tubing linked to a saline drip.
My list of allergies hasn’t grown any more – I’m pleased to say.
The Chemotherapy nurses are great…. its not a job for the faint hearted, pumping assorted coloured fluids into an IV Line. The most spectacular is the RED one. Epirubicin. The nurse comments ‘this is the baddie…the one that makes you lose your hair. Terrific. There are four – yes, four - huge syringes of this stuff. The nurse also warns me that I will have red pee for twenty-four hours from it.
Before she starts filling me with all the nasty stuff, I don the ‘cold cap. This is a frozen gel filled cap about the size of a riding helmet that covers the scalp and is covered with a tight insulating top cap. This stays on for about 30 minutes before any drugs are administered. Hopefully this will prevent hair loss although it doesn’t work for everyone. Fingers crossed. I also have a large horse pill – ‘Emend’ which is the name for Aprepitant, to control sickness and nausea.
After about 30 minutes I get a new cold cap and the nurse injects a steroid into the IV line – again to prevent sickness and nausea. This causes a weird feeling in ..yes I know this sounds odd …… my genital area. A sudden tingling. The sensation only lasts about a minute but it is a bit eye watering.
Then we get onto the heavy stuff. The Epirubicin takes about 15 minutes to inject into the IV – they call this method a ‘bolus’ injection. It is an indication of how toxic these drugs are in that the nurses wear heavy-duty rubber gloves and one who is pregnant is no longer allowed to give the drugs at all.
Next comes a much smaller bolus injection of Fluorouracil. All the while they are looking to see how I am reacting as this is my first time so it all takes a bit longer than it normally would. Finally it is Cyclophosphamide which is administered by an IV pump which will take about 45 minutes or so.
During all of this the cold cap is replaced every 45 minutes.
More coffee arrives and I am left to read my book…until a ‘pastoral’ adviser comes to visit. He assures me he can me a prayer mat if I need it or find a priest if I prefer. He seems a little disappointed when I tell him I am a deliriously happy, committed atheist and ask him if he would like to borrow my copy of Richard Dawkin’s ‘The God Delusion’.
The alarm on the pump signals that I am now full of horrible drugs.
I spend a final 45 minutes with the last cold cap. The pharmacist visits with a wheelie bin full of medication for me to take home. Basically most of it is to prevent sickness but because those meds make you constipated you also get a good supply of Senokot. Lovely.
Free at last of canulas and caps, and feeling a little odd, I camp in the reception area until my partner picks me up.
I actually don’t feel too bad. I was expecting to feel grim but in fact I am only a bit light headed and later that evening I feel tired quite early so go to bed at about 9.30 pm. At about 1.30am I wake up feeling a bit queasy but realise it is my chronic reflux kicking in so a Zantac tablet does the trick and I sleep through the night. The next three days are measured by the meds routine. The light-headedness and early bedtimes wear off after about day four and I play nine holes of golf on the Sunday and go back to work on the following Monday feeling pretty normal. BUT there is one big change……I have lost a lot of my sense of taste – in fact I have a metallic taste in my mouth...so I don’t want to eat as much as usual. Great because I need to lose the weight I have put on through forced inactivity since the operation. And even better, I find that I cannot drink red wine any more…it tastes horrible. I find I can enjoy a very weak gin and slim line tonic. Again perfect for losing some weight. The only other thing is that my mouth is a bit sore on one side. This wears off over the next week or so.
I have become somewhat obsessive about people sneezing and coughing near me when I am traveling to work in the rush hour, washing my hands all the time and being very careful about insect bites, scratches and people who might have swine flu…This is going to be a difficult one. During the three weeks after the first dose the media start to report that Swine flu, although mild in most cases, is now out of control in the population at large. I make a mental note to speak to my oncologist about this. Apart from shutting my partner and myself up in the house – as well as shunning all my nearest and dearest - I cannot see any real way of avoiding it. I could invest in one of those isolation suits I suppose but I doubt I would be able to get my golf shoes on over the top of it and the club are a bit stuffy on their dress regulations.
The big unknown is whether the cold cap system will stop my hair falling out. Only time will tell.
I’ve had blood tests, been measured, weighed, tagged, had the usual observations done, and had my medical details recorded yet again. I have a canula in my wrist attached to a collection of tubing linked to a saline drip.
My list of allergies hasn’t grown any more – I’m pleased to say.
The Chemotherapy nurses are great…. its not a job for the faint hearted, pumping assorted coloured fluids into an IV Line. The most spectacular is the RED one. Epirubicin. The nurse comments ‘this is the baddie…the one that makes you lose your hair. Terrific. There are four – yes, four - huge syringes of this stuff. The nurse also warns me that I will have red pee for twenty-four hours from it.
Before she starts filling me with all the nasty stuff, I don the ‘cold cap. This is a frozen gel filled cap about the size of a riding helmet that covers the scalp and is covered with a tight insulating top cap. This stays on for about 30 minutes before any drugs are administered. Hopefully this will prevent hair loss although it doesn’t work for everyone. Fingers crossed. I also have a large horse pill – ‘Emend’ which is the name for Aprepitant, to control sickness and nausea.
After about 30 minutes I get a new cold cap and the nurse injects a steroid into the IV line – again to prevent sickness and nausea. This causes a weird feeling in ..yes I know this sounds odd …… my genital area. A sudden tingling. The sensation only lasts about a minute but it is a bit eye watering.
Then we get onto the heavy stuff. The Epirubicin takes about 15 minutes to inject into the IV – they call this method a ‘bolus’ injection. It is an indication of how toxic these drugs are in that the nurses wear heavy-duty rubber gloves and one who is pregnant is no longer allowed to give the drugs at all.
Next comes a much smaller bolus injection of Fluorouracil. All the while they are looking to see how I am reacting as this is my first time so it all takes a bit longer than it normally would. Finally it is Cyclophosphamide which is administered by an IV pump which will take about 45 minutes or so.
During all of this the cold cap is replaced every 45 minutes.
More coffee arrives and I am left to read my book…until a ‘pastoral’ adviser comes to visit. He assures me he can me a prayer mat if I need it or find a priest if I prefer. He seems a little disappointed when I tell him I am a deliriously happy, committed atheist and ask him if he would like to borrow my copy of Richard Dawkin’s ‘The God Delusion’.
The alarm on the pump signals that I am now full of horrible drugs.
I spend a final 45 minutes with the last cold cap. The pharmacist visits with a wheelie bin full of medication for me to take home. Basically most of it is to prevent sickness but because those meds make you constipated you also get a good supply of Senokot. Lovely.
Free at last of canulas and caps, and feeling a little odd, I camp in the reception area until my partner picks me up.
I actually don’t feel too bad. I was expecting to feel grim but in fact I am only a bit light headed and later that evening I feel tired quite early so go to bed at about 9.30 pm. At about 1.30am I wake up feeling a bit queasy but realise it is my chronic reflux kicking in so a Zantac tablet does the trick and I sleep through the night. The next three days are measured by the meds routine. The light-headedness and early bedtimes wear off after about day four and I play nine holes of golf on the Sunday and go back to work on the following Monday feeling pretty normal. BUT there is one big change……I have lost a lot of my sense of taste – in fact I have a metallic taste in my mouth...so I don’t want to eat as much as usual. Great because I need to lose the weight I have put on through forced inactivity since the operation. And even better, I find that I cannot drink red wine any more…it tastes horrible. I find I can enjoy a very weak gin and slim line tonic. Again perfect for losing some weight. The only other thing is that my mouth is a bit sore on one side. This wears off over the next week or so.
I have become somewhat obsessive about people sneezing and coughing near me when I am traveling to work in the rush hour, washing my hands all the time and being very careful about insect bites, scratches and people who might have swine flu…This is going to be a difficult one. During the three weeks after the first dose the media start to report that Swine flu, although mild in most cases, is now out of control in the population at large. I make a mental note to speak to my oncologist about this. Apart from shutting my partner and myself up in the house – as well as shunning all my nearest and dearest - I cannot see any real way of avoiding it. I could invest in one of those isolation suits I suppose but I doubt I would be able to get my golf shoes on over the top of it and the club are a bit stuffy on their dress regulations.
The big unknown is whether the cold cap system will stop my hair falling out. Only time will tell.
12 June -Tennis balls and wigs
Friday 12 June. The tennis ball was back so I made another quick trip to see Mr P for a repeat performance with his big syringe. Once again the relief was terrific. The seroma was a nuisance but nothing compared to the previous wound infection. This proved to be the last time it would need draining.
The other research I did was into wigs and headwear. I discovered a great sounding wig boutique in a nearby town and booked a consultation. I took my sister-in-law, as I am not very good at knowing what suits me most of the time. We had a great time. The consultant was terrific, the price was right, the whole deal came with free make over, manicure and facial as part of nurturing package – and we rounded the trip off with a really good lunch.
With the wig on order and everything lined up I was feeling pretty much in control by the time arrived for the first chemo session.
The other research I did was into wigs and headwear. I discovered a great sounding wig boutique in a nearby town and booked a consultation. I took my sister-in-law, as I am not very good at knowing what suits me most of the time. We had a great time. The consultant was terrific, the price was right, the whole deal came with free make over, manicure and facial as part of nurturing package – and we rounded the trip off with a really good lunch.
With the wig on order and everything lined up I was feeling pretty much in control by the time arrived for the first chemo session.
10 June - The oncologist and learning about Chemotherapy
Wednesday 10 June. We drive to the new hospital. Dr S is very straightforward and explains the survival rates from my type of cancer, which we are now defining as Stage IIa (T1, N1, M0). This means that the tumor measures 2 centimeters or less, has spread to the axillary lymph nodes on the same side of the body as the breast cancer but that they can be moved around (they aren't matted together by the cancer), and the cancer hasn't spread to another part of the body. In addition my cancer has proved to be estrogen receptive so I will be able to benefit from hormone therapy as well. We are still waiting to hear if it is HER2 positive. This is another factor, which can indicate the need for additional therapy in the form of a drug called Herceptin – more on this once we know.
Basically chemotherapy moves my chances of not dying from this cancer in the next ten years from 80% to 90%. With additional hormone therapy and radiotherapy the chances go even higher. It is a no-brainer. We go for chemotherapy despite the side effects. The discussion now revolves around what those side effects are, how debilitating they may be and therefore what the timing of the therapy should be…this is important to me as I have a number of things I want to do in the next few weeks and months. I know it sounds a bit strange but I want to live my life as normally as possible despite this sword of Damocles hanging over my head. My partner and I are due to play in a prestigious open golf event in July..and I really want to be able to do this. I am also refereeing an amateur championship and again, I want to be able to do this. So before we set the date for the chemotherapy to begin, we take a couple of days to get the calendar straight.
Basically the chemotherapy will be in six cycles, three weeks apart. The possible side effects are severe sickness, reduced immunity and subsequent risk of infections, mouth ulcers, hair loss, fatigue, and many others. But I decide to take a positive view that I will be reasonably OK and so agree to start the first cycle the next week. The date set is 17 June, which will allow me to do much of my planned activity. An additional bonus is that the chemotherapy will always occur on a Wednesday which fits beautifully with my working pattern of Monday and Tuesday in the office, Wednesday and Thursday off and Friday working from home. This means I can go back to work pretty much as normal. It all helps to put the beastly disease in perspective.
During the discussion with Dr S I ask about something I read about to prevent hair loss from chemotherapy – a cold cap system. Dr S says it is worth trying but that it doesn’t work for everyone and when it does it is not 100 % effective. I decide to give it a go but also to explore the alternative headwear route as well. Best to have all the bases covered.
Having made the decision to start the chemotherapy fairly quickly, I needed to get moving on some more research. Firstly I needed to understand exactly what the chemo was, how it was administered and the timing of side effects etc. The regime I would be having is called FEC –T in shorthand.
FEC–T is named after the initials of the chemotherapy drugs used, which are:
Fluorouracil, which is also called 5FU
Epirubicin
Cyclophosphamide
Docetaxel, which is commonly known as Taxotere®
FEC–T treatment is usually given as a day patient and you are given a number of other drugs to stop the major side effect of sickness and nausea
The side effects kick in at different times. If you are going to get sick, this usually happens within a few hours of having the chemo and can last for several days. Things like mouth ulcers, and a metallic taste in a couple of days, fatigue at any time, and increased risk of infection after between 7 and 14 days after the dose. I would just have to hope for the best.
Basically chemotherapy moves my chances of not dying from this cancer in the next ten years from 80% to 90%. With additional hormone therapy and radiotherapy the chances go even higher. It is a no-brainer. We go for chemotherapy despite the side effects. The discussion now revolves around what those side effects are, how debilitating they may be and therefore what the timing of the therapy should be…this is important to me as I have a number of things I want to do in the next few weeks and months. I know it sounds a bit strange but I want to live my life as normally as possible despite this sword of Damocles hanging over my head. My partner and I are due to play in a prestigious open golf event in July..and I really want to be able to do this. I am also refereeing an amateur championship and again, I want to be able to do this. So before we set the date for the chemotherapy to begin, we take a couple of days to get the calendar straight.
Basically the chemotherapy will be in six cycles, three weeks apart. The possible side effects are severe sickness, reduced immunity and subsequent risk of infections, mouth ulcers, hair loss, fatigue, and many others. But I decide to take a positive view that I will be reasonably OK and so agree to start the first cycle the next week. The date set is 17 June, which will allow me to do much of my planned activity. An additional bonus is that the chemotherapy will always occur on a Wednesday which fits beautifully with my working pattern of Monday and Tuesday in the office, Wednesday and Thursday off and Friday working from home. This means I can go back to work pretty much as normal. It all helps to put the beastly disease in perspective.
During the discussion with Dr S I ask about something I read about to prevent hair loss from chemotherapy – a cold cap system. Dr S says it is worth trying but that it doesn’t work for everyone and when it does it is not 100 % effective. I decide to give it a go but also to explore the alternative headwear route as well. Best to have all the bases covered.
Having made the decision to start the chemotherapy fairly quickly, I needed to get moving on some more research. Firstly I needed to understand exactly what the chemo was, how it was administered and the timing of side effects etc. The regime I would be having is called FEC –T in shorthand.
FEC–T is named after the initials of the chemotherapy drugs used, which are:
Fluorouracil, which is also called 5FU
Epirubicin
Cyclophosphamide
Docetaxel, which is commonly known as Taxotere®
FEC–T treatment is usually given as a day patient and you are given a number of other drugs to stop the major side effect of sickness and nausea
The side effects kick in at different times. If you are going to get sick, this usually happens within a few hours of having the chemo and can last for several days. Things like mouth ulcers, and a metallic taste in a couple of days, fatigue at any time, and increased risk of infection after between 7 and 14 days after the dose. I would just have to hope for the best.
8 June - tennis balls in armpits
Monday 8 June. My armpit feels as thought I have a large tennis ball stuck in it so I call the hospital and ask to speak to the house doctor as instructed in my discharge notes. I think have developed a seroma. This is a build up of serous fluid in the wound. In itself it is not serious but it is very uncomfortable I arrange to see him in an hour and drive to the hospital. The House doctor looks at it and decides it isn’t a seroma but he wants Mr P to have a look at it later that day. Can I come back in the afternoon? Mmmm..Yes I suppose so. Later that afternoon Mr P pronounces that I have a large seroma and drains about 200ml off with a large syringe. Oh the relief.
The less said about his view of the house doctor the better.
The less said about his view of the house doctor the better.
Late May - Good news and not so good news
Friday 29 May. It is the evening when Mr P calls. Good news and not so good news he says. Of the six additional lymph nodes one more is definitely involved by tumour and another is suspect but the rest are clear. He will see me in a week’s time at the hospital to discuss next steps. This time I do succumb to tears – just for a while. My partner is there to just hold me. When will we start to get the good news?
Sunday 31 May. We reach the 40 ml mark and the district nurse takes out the drain. Freedom at last. I feel like dancing around the house.
Friday 5 June. We see Mr P. Good news for a change. The second lymph node that was suspect is clear. There were only 2 baddies in all. Mr P is satisfied that from a surgical point of view he has got all the primary cancer. A nurse removes the dressing, checks the wound and makes an appointment for me to see Mr P in four months.
But…and it is a big ‘but’, once a cancer is invasive and has metastasised to the lymph nodes, it is highly likely that cells have moved into the bloodstream and lodged in other parts of the body. These can develop into further metastases – secondary cancers in the bones, liver, lungs, or brain. The only way these can be bought to book is through chemotherapy. Mr P arranges for me to see Dr S the following week– a very good oncologist at another private hospital.
My partner and I go out to lunch on the way home at a lovely Elizabethan Manor. There is one thing about all this….I have been eating very well.
When we get home I get a call from Dr S’s secretary. Can I see him next Wednesday? Of course. It is wonderful to get appointments so quickly.
Sunday 31 May. We reach the 40 ml mark and the district nurse takes out the drain. Freedom at last. I feel like dancing around the house.
Friday 5 June. We see Mr P. Good news for a change. The second lymph node that was suspect is clear. There were only 2 baddies in all. Mr P is satisfied that from a surgical point of view he has got all the primary cancer. A nurse removes the dressing, checks the wound and makes an appointment for me to see Mr P in four months.
But…and it is a big ‘but’, once a cancer is invasive and has metastasised to the lymph nodes, it is highly likely that cells have moved into the bloodstream and lodged in other parts of the body. These can develop into further metastases – secondary cancers in the bones, liver, lungs, or brain. The only way these can be bought to book is through chemotherapy. Mr P arranges for me to see Dr S the following week– a very good oncologist at another private hospital.
My partner and I go out to lunch on the way home at a lovely Elizabethan Manor. There is one thing about all this….I have been eating very well.
When we get home I get a call from Dr S’s secretary. Can I see him next Wednesday? Of course. It is wonderful to get appointments so quickly.
May - Surgery again
14 May. Back in the UK. I go to a Pilates class and manage fine. The wound in the armpit has healed well. It is just a pity that Mr P will have to open it up again for the next operation.
18 May. I see Mr P and he expresses himself satisfied with the way the breast wound has now healed and confirm he will carry out the next operation on 27th.
27 May. Much more civilised. No food or drink since about 7.30 this morning. I arrive at the private hospital at 11.00am and we are shown to a very nice room. I am admitted. I answer all the questions I have answered before – several times over. It seems this is one area where the private sector is just the same as the NHS. They cannot get their data lined up.
This time I add to my allergies – Nickel, tetracycline, steri-strips, metronidozole and ciprofloxacin. I wonder how long this list will grow by the time we are finished.
I am visited by Mr P, various nurses and orderlies - all men, catering staff, a nice lady anaesthetist, a man with an electric drill, and a lady who thought I was her sister. Mr P is amused when I hand him a scientific paper on the use of topical silver dressings in wound infections.
I am told I am about seventh on the list so won’t be going to theatre until 5.00pm. I am allowed some water – lucky me. I am thirsty and starving hungry.
5.00pm comes and goes as does 6.00 pm. I call my partner and let him know I will not be compos mentis until late in the evening so he may as well wait until next morning to come and see me. Finally at just before 7.00pm the male nurse and a porter come and wheel me to theatre. I am so hungry I am light headed.
The nice lady anaesthetist I had met earlier has gone home and a new one has taken her place. He isn’t as skilled at getting a canula into my tricky veins and I have several sets of swabs and tapes on my hands and arms from failed attempts by the time he and the interestingly tattooed male theatre nurse finally get a line in and administer the anaesthetic. As I drift off I wonder about the theatre nurse – was he a military nurse? – How did he end up at a high-end private hospital? Funny the things you think of.
I wake up to see another nurse. Once again a man…interesting that all the nurses I have had in the private hospital have been men. I don’t mind but I can imagine some women wouldn’t like it. Soon I am back on the ward, IV line and vacuum wound drain in place. Now this is a horrid thing. I have a tube coming out of a small incision below the main incision, which is draining serous fluid into a clear plastic vacuum bulb. The bulb is also attached to a bag, which will be used to measure how much fluid is draining. I am stuck with this thing until there is less than 40 mls draining in a 24-hour period. Still when I get back to the ward I am not too concerned. All I want is water and food. To my delight my partner has made the journey back to the hospital to see me. We have some time together while I rest. The nurses attach some inflatable cuffs to my legs, which regularly put out a gentle pressure to keep things moving and prevent blood clots. They are strangely soporific and I fall asleep quite quickly after eating my post op sandwich.
This time I sleep well and wake up feeling surprisingly good….apart from the dreaded drain. Mr P visits and tells me I can go home but the drain has to stay in until the 40 ml mark is reached. The local district nurses will visit each day to check everything out.
Mr P will call me on Friday to let me know what the lab results are on the 6 additional lymph nodes he has removed. The physiotherapist arrives to take me through a series of exercises to get mobility back in the arm.
I walk out of the hospital with the cumbersome drain and tubes concealed in a pillowcase.
18 May. I see Mr P and he expresses himself satisfied with the way the breast wound has now healed and confirm he will carry out the next operation on 27th.
27 May. Much more civilised. No food or drink since about 7.30 this morning. I arrive at the private hospital at 11.00am and we are shown to a very nice room. I am admitted. I answer all the questions I have answered before – several times over. It seems this is one area where the private sector is just the same as the NHS. They cannot get their data lined up.
This time I add to my allergies – Nickel, tetracycline, steri-strips, metronidozole and ciprofloxacin. I wonder how long this list will grow by the time we are finished.
I am visited by Mr P, various nurses and orderlies - all men, catering staff, a nice lady anaesthetist, a man with an electric drill, and a lady who thought I was her sister. Mr P is amused when I hand him a scientific paper on the use of topical silver dressings in wound infections.
I am told I am about seventh on the list so won’t be going to theatre until 5.00pm. I am allowed some water – lucky me. I am thirsty and starving hungry.
5.00pm comes and goes as does 6.00 pm. I call my partner and let him know I will not be compos mentis until late in the evening so he may as well wait until next morning to come and see me. Finally at just before 7.00pm the male nurse and a porter come and wheel me to theatre. I am so hungry I am light headed.
The nice lady anaesthetist I had met earlier has gone home and a new one has taken her place. He isn’t as skilled at getting a canula into my tricky veins and I have several sets of swabs and tapes on my hands and arms from failed attempts by the time he and the interestingly tattooed male theatre nurse finally get a line in and administer the anaesthetic. As I drift off I wonder about the theatre nurse – was he a military nurse? – How did he end up at a high-end private hospital? Funny the things you think of.
I wake up to see another nurse. Once again a man…interesting that all the nurses I have had in the private hospital have been men. I don’t mind but I can imagine some women wouldn’t like it. Soon I am back on the ward, IV line and vacuum wound drain in place. Now this is a horrid thing. I have a tube coming out of a small incision below the main incision, which is draining serous fluid into a clear plastic vacuum bulb. The bulb is also attached to a bag, which will be used to measure how much fluid is draining. I am stuck with this thing until there is less than 40 mls draining in a 24-hour period. Still when I get back to the ward I am not too concerned. All I want is water and food. To my delight my partner has made the journey back to the hospital to see me. We have some time together while I rest. The nurses attach some inflatable cuffs to my legs, which regularly put out a gentle pressure to keep things moving and prevent blood clots. They are strangely soporific and I fall asleep quite quickly after eating my post op sandwich.
This time I sleep well and wake up feeling surprisingly good….apart from the dreaded drain. Mr P visits and tells me I can go home but the drain has to stay in until the 40 ml mark is reached. The local district nurses will visit each day to check everything out.
Mr P will call me on Friday to let me know what the lab results are on the 6 additional lymph nodes he has removed. The physiotherapist arrives to take me through a series of exercises to get mobility back in the arm.
I walk out of the hospital with the cumbersome drain and tubes concealed in a pillowcase.
22 & 23 April - Allergies!
Wednesday 22 April. I am back at work and I have been taking the heavy-duty antibiotics for a week. I can’t say I have seen much progress on the wound. It isn’t getting any worse but I am starting to feel odd and have come out in a very bad itchy rash. The blurb with the medications indicates this is a severe side effect so I have to stop taking them.
Thursday 23 April. I see Mr P on the NHS for the last time. Hallelujah - I don’t have to go the outpatient route but see him in the elective surgery centre. Much more civilised. We sort out the paper work for the health insurance and the new arrangements. We have to change the date of my operation to 27 May but that is OK.
Strangely or perhaps not so strangely he spends more time with me. Probably because we have the problem of the wound and the allergy. He agrees I cannot take the medication any more and calls the microbiology lab to find out what else we can do. Unfortunately pseudomonas and anaerobes are a bit tricky and there are not a lot of options other than an antibiotic that has to be injected and requires a hospital stay. We both agree that we don’t want to go there. The microbiologist suggests silver dressings. I perk up. In my researches I have come across these and they have good results. I nod and indicate I think this is a good idea. Mr P puts the phone down and asks me if I would like to sit in his seat. He tracks down some available dressings at my GPs surgery and I pick them up that afternoon. These prove to be the answer. It takes nearly a month for the wound to finally heal over but every day it gets smaller and shallower. I end up with a red patch – not pretty but it will fade along with the incision scars.
With the wound getting better and my switch to private health we go on holiday feeling a lot better.
The holiday was great 10 days of nearly perfect weather and some nice if not spectacularly well-played golf. It did us a world of good.
Thursday 23 April. I see Mr P on the NHS for the last time. Hallelujah - I don’t have to go the outpatient route but see him in the elective surgery centre. Much more civilised. We sort out the paper work for the health insurance and the new arrangements. We have to change the date of my operation to 27 May but that is OK.
Strangely or perhaps not so strangely he spends more time with me. Probably because we have the problem of the wound and the allergy. He agrees I cannot take the medication any more and calls the microbiology lab to find out what else we can do. Unfortunately pseudomonas and anaerobes are a bit tricky and there are not a lot of options other than an antibiotic that has to be injected and requires a hospital stay. We both agree that we don’t want to go there. The microbiologist suggests silver dressings. I perk up. In my researches I have come across these and they have good results. I nod and indicate I think this is a good idea. Mr P puts the phone down and asks me if I would like to sit in his seat. He tracks down some available dressings at my GPs surgery and I pick them up that afternoon. These prove to be the answer. It takes nearly a month for the wound to finally heal over but every day it gets smaller and shallower. I end up with a red patch – not pretty but it will fade along with the incision scars.
With the wound getting better and my switch to private health we go on holiday feeling a lot better.
The holiday was great 10 days of nearly perfect weather and some nice if not spectacularly well-played golf. It did us a world of good.
15 April - The wound infection and thoughts on the NHS
Wednesday 15 April I return to the hospital to see Mr P’s registrar. The wound is bigger and deeper. She has the results from the swabs taken last week. Pseudomonas and anaerobic bacteria have colonised the wound in quite large numbers. This needs a heavy hit and flucloxicillin doesn’t have any effect on these little b****rs. The registrar prescribes Metronidozol and Ciprofloxacin for fourteen days. The pharmacist at the hospital tells me I can’t drink while I am taking this and also have to watch when I eat any dairy products. Great. Hopefully I will have finished the course by the time we go to Spain.
The wound infection is getting me down. I have resisted using private medical health insurance for this up to now in the firm belief that the NHS cannot be beaten in treating cancer in this country. They fast track cancer patients and try their very best to treat you well. But I decide I cannot face another stay in the NHS hospital and the possibility of more infections – let alone the ward set up and lack of sleep. So I decide to use my company health insurance scheme. I do more research. I find out that Mr P and his team also work out of a local private hospital. I call the insurance company and yes I can have the full course of any treatment required. Mr P and the private hospital are acceptable. The insurance company e-mails all the forms and assigns me a one contact case manager so I don’t have to go round the houses each time I call. Very impressive. I call Mr P’s secretary. I will keep my next meeting with Mr P, who wants to see me on 23 April, at the NHS hospital and from there I will move with him to the private sector. Job done.
The wound infection is getting me down. I have resisted using private medical health insurance for this up to now in the firm belief that the NHS cannot be beaten in treating cancer in this country. They fast track cancer patients and try their very best to treat you well. But I decide I cannot face another stay in the NHS hospital and the possibility of more infections – let alone the ward set up and lack of sleep. So I decide to use my company health insurance scheme. I do more research. I find out that Mr P and his team also work out of a local private hospital. I call the insurance company and yes I can have the full course of any treatment required. Mr P and the private hospital are acceptable. The insurance company e-mails all the forms and assigns me a one contact case manager so I don’t have to go round the houses each time I call. Very impressive. I call Mr P’s secretary. I will keep my next meeting with Mr P, who wants to see me on 23 April, at the NHS hospital and from there I will move with him to the private sector. Job done.
9 April - More bad news
Thursday 9 April. My left boob now has a hole the size of a one-pound coin, which is not getting any better. It doesn’t hurt but it has me worried.
My partner and I arrive to see Mr P. Once again we join the crowd of patients waiting to check in at the outpatients desk. This time is worse. One of the people behind the desk is in a strop and makes a point of eating a sandwich while people wait. Yes you guessed it. We got her. English is not her first language and she uses this to make life difficult. No eye contact. Lots of sighing as if the patients are only there to cause her trouble and when she finally finds my file it is thrown into the appropriate basket. She then sends us to the wrong waiting area. I have to physically prevent my partner from grabbing her and slapping her face. Eventually we get to see Mr P. First we get the results from the biopsy. Once again Mr P is charming but the news is mixed. He has removed all the cancer in the breast with clear margins so no need to do any more surgery there but he removed two lymph nodes and one of them has cancer cells in it. This means another operation to do what is known as a Level II axillary dissection – taking a pad of fat and anything up to 20 more lymph nodes from the armpit with the associated risks of lymphodema. He does commiserate saying that I am very unlucky for the cancer to have spread from such a small tumour…but it is the beastly ‘invasive’ bit.
OK - strangely this was not a shock. I seem to have a premonition about what these results will be so I feel I can handle them.
We discuss dates for the next operation. My partner and I want to take our booked holiday to Spain. Mr P agrees and we plump for 15 May - two days after we get back from Spain.
Next he has a look at the wound. I can tell he is not happy. This reflects on him. The flucloxicillin doesn’t seem to be working. The nurse takes a swab to find out what the bug is and I will come back in a few days time to see where we go with this.
One thing I have been determined to do is not let the cancer define me – who I am. I want to carry on as normally as I can. The cancer is a side issue. But just at the moment the infection is getting to me…much more than the cancer. I need to get this sorted.
I start working from home on 13 April – a fairly gentle way in but part of getting some normality back. I will go into the office next week.
My partner and I arrive to see Mr P. Once again we join the crowd of patients waiting to check in at the outpatients desk. This time is worse. One of the people behind the desk is in a strop and makes a point of eating a sandwich while people wait. Yes you guessed it. We got her. English is not her first language and she uses this to make life difficult. No eye contact. Lots of sighing as if the patients are only there to cause her trouble and when she finally finds my file it is thrown into the appropriate basket. She then sends us to the wrong waiting area. I have to physically prevent my partner from grabbing her and slapping her face. Eventually we get to see Mr P. First we get the results from the biopsy. Once again Mr P is charming but the news is mixed. He has removed all the cancer in the breast with clear margins so no need to do any more surgery there but he removed two lymph nodes and one of them has cancer cells in it. This means another operation to do what is known as a Level II axillary dissection – taking a pad of fat and anything up to 20 more lymph nodes from the armpit with the associated risks of lymphodema. He does commiserate saying that I am very unlucky for the cancer to have spread from such a small tumour…but it is the beastly ‘invasive’ bit.
OK - strangely this was not a shock. I seem to have a premonition about what these results will be so I feel I can handle them.
We discuss dates for the next operation. My partner and I want to take our booked holiday to Spain. Mr P agrees and we plump for 15 May - two days after we get back from Spain.
Next he has a look at the wound. I can tell he is not happy. This reflects on him. The flucloxicillin doesn’t seem to be working. The nurse takes a swab to find out what the bug is and I will come back in a few days time to see where we go with this.
One thing I have been determined to do is not let the cancer define me – who I am. I want to carry on as normally as I can. The cancer is a side issue. But just at the moment the infection is getting to me…much more than the cancer. I need to get this sorted.
I start working from home on 13 April – a fairly gentle way in but part of getting some normality back. I will go into the office next week.
April - Things go a bit wrong
Early April -However, over the next few days I realise something is not quite right. The breast wound is still leaking and the place at the bottom of the incision has developed a small white lump and has reddened edges. I call the key worker as instructed. It switches to voicemail. She is away. I call the ward – the next point of contact on the list. Eventually I get through and explain the situation and am told to see my GP. My heart sinks..it can take days to get a GP appointment. I manage to get a fill in appointment with the practice nurse by stressing this is an emergency.
The practice nurse agrees it is infected and gets a doctor to prescribe flucloxicillin – an antibiotic I have had before for soft tissue infections so I know I can take it.
They give me more dressings and I start the antibiotic. I am due to see Mr P at the end of the week for my follow up appointment so hopefully the antibiotic will have started working by then.
Not a chance - the day after the visit to the practice nurse, I remove the dressing and a great blob of stuff comes with it leaving a hole at the end of the incision. I am not normally squeamish but this was a bit nasty. I managed to get my partner to find some sterile swabs in the first aid kit and cleaned and redressed it hoping that the next time I looked at it the antibiotic would have started working.
The practice nurse agrees it is infected and gets a doctor to prescribe flucloxicillin – an antibiotic I have had before for soft tissue infections so I know I can take it.
They give me more dressings and I start the antibiotic. I am due to see Mr P at the end of the week for my follow up appointment so hopefully the antibiotic will have started working by then.
Not a chance - the day after the visit to the practice nurse, I remove the dressing and a great blob of stuff comes with it leaving a hole at the end of the incision. I am not normally squeamish but this was a bit nasty. I managed to get my partner to find some sterile swabs in the first aid kit and cleaned and redressed it hoping that the next time I looked at it the antibiotic would have started working.
30 March - Surgey
Monday 30 March. We arrive at the hospital. In my bag I have the most horrible selection of bras I have ever owned. They were all I could find in the local M&S and quite frankly you could grow potatoes in them. Still needs must. I will throw them away as soon as I can. First stop is the X- ray department for the Breast Wire Localisation. Check in OK and we find a seat…but not in the right place. There are never enough seats in the waiting areas and despite the early time the place is full. Some shuffling around eventually gets us to the right place and my partner, my overnight bag and I camp out for the requisite half hour wait until I am called. A nurse takes me into a darkened treatment room. Mr P is looking at x-rays on light panels and discussing them with another doctor. The nurse apologises for the delay and gets me set up on a couch propped up with pillows. I listen to the conversation between Mr P and the other doctor. It isn’t about me but some other poor soul who seems to be in a somewhat worse situation than me. Mr P doesn’t even notice I am there. Eventually, he leaves and Dr H comes over and gets started. She uses ultrasound to locate the cancer, then attempts – several times - to get a local anaesthetic to take. Not much success there so I feel the scalpel nick and the wire insertion a bit more than I should. Parting words from her were. I see you have an invasive lobular cancer. The type shouldn’t make any difference to achieving a cure but you need to be aware that the chance of this cancer recurring in the other breast is about 20% as opposed to 7 % for other types. How reassuring. Back to the waiting room sans bra to wait for a confirming mammogram to be taken. That done it is off to the admissions ward at the other end of the hospital – carefully clutching my x-rays. Apparently they trust the patients more than the staff and filing system to make sure things get where they are supposed to be. More long unkempt, grotty corridors filled with too many people who look too ill. It is so sad and depressing. The admissions office area is chaos. I check in and they sort of realise I am expected but again we end up waiting while harried nursing staff try to cope. Eventually someone gets my file and moves us to another seat. I can see that this is going to be painfully slow and suggest to my partner that he should go home. He accepts the suggestion with a marked degree of gratitude and takes off with a promise to return later in the day once I know what is happening. Finally I have my blood pressure, temperature and pulse taken and am measured up for anti-embolism stockings – a most bizarre pair of tight long white socks – you could probably get a fortune for them selling them to Japanese school girls on e-bay. I am a bit concerned about the number of people wandering around in dressing gowns and slippers. I have no intention of spending the rest of the day in night attire and hope this isn’t compulsory. More waiting and then someone arrives to take me to the actual ward. Now call me a bit over optimistic but I did think that as the ward I was being admitted to was referred to as an elective surgery ward and was originally part of the private part of the hospital I might get a room of my own. No such luck. I am shown to a four-bed room where the beds can be screened by curtains. Four beds, four quite comfy chairs beside them, the usual bedside cabinets and medical paraphernalia on the wall behind. No bathroom, no television. I have my Sudoku and books. Lots of them. Thank goodness.
I am the first there so go off to explore to find a bathroom. It’s down the corridor past other wards – male and female. At least I get to put my bra back on.
Back on the ward, other women start arriving. We barely make eye contact at first but then some of them start to chat to each other. I am not feeling very sociable. They are nice ladies but not really my type. I will make conversation but not just yet. I bury my head in a book. One of the women is wearing her nightie, dressing gown and slippers. I ask if she is having her operation today but she says no. Like the rest of us it is tomorrow, the admissions people got it wrong and asked her to get changed. She even has her anti-embolism stockings on. Poor lady sits there all day like that.
I am finding the inane chatter in the background a bit trying so I put on my coat and go to the nurses’ station to say I am going for a walk. That’s fine. Lunch is being served in an hour but I can disappear until then. I get outside and make some calls while I watch some patients in wheelchairs sitting outside smoking. This whole place is depressing and it really brings it home to me how stretched the NHS is. They are trying to do a good job and in my case – indeed in the case of anyone with cancer – they pull out all the stops but they can only do what their resources allow them.
The less said about lunch or any of the food the better.
The rest of day passes – my partner comes and visits. Nurses come and ask interminable questions, - What am I allergic to? – Nickel, tetracycline and now steri -strips I reply. They fill out endless forms and fix labels to my wrist. They demand a urine sample – just in case I am pregnant? I don’t think so. Every time they come to speak to one of us you can hear the whole conversation. No privacy….but I don’t suppose any of us really care. Every 3 hours or so they repeat the observations – Blood Pressure, Pulse and Temperature. I make several more trips outside.
The night was a horror. From 11.00 pm we were not allowed any food or drink. I stayed awake as long as I could with a view to being so tired I would have to sleep. But the gods of repose were not in our area that night. The breast wire was uncomfortable and although I knew it couldn’t move there was always a horrible suspicion that somehow it would. Then there were the emergencies on the ward during the night. People falling down in the toilets, bells being rung, staff running up and down the corridor, lights on and to crown it all the lady in the next bed to me was a diabetic and a nurse took it into her head that her insulin levels were not right so she was put on a infusion pump. Fine except that it was faulty and the alarm kept going off every ten minutes. By four in the morning I had had it and sat up in bed with a demand to turn the F****** thing off. They did. Unfortunately at 5.30 it was time for the next set of observations. At six it was time to get up and wash and change into hospital gowns and put the elegant stockings on. Then we waited until we were visited by nurses, anaesthetists, registrars, Uncle Tom Cobbley and all. Every one of whom asked the same questions over and over again. I wonder if they just want to catch you out. Name, Date of birth, alleges, past medical history etc. Every time they write it down and you wonder where all of these different forms go. Why don’t they just take one set of data and all access it? Too efficient I expect.
Eventually the nurse came along with ‘The List’ - the order in which we were to go to surgery. I was third so I had a bit of time on my hands. The registrar was the last to visit, he came with a black felt tip marker and asked me which side we were doing. Left I said. Good. He drew a large black arrow on my chest pointing to my left boob. I made a mental note to ask the surgeon if he had trouble with maps.
I was so tired I was looking forward to the anaesthetic and having a good sleep so when they wheeled me into the little room before the theatre I was happy to drift off and get the whole thing over with.
Waking up isn’t hard to do – just a bit painful. I am conscious of the oxygen mask and the fact I have a pressure garment strapped around my chest. The nurse asks if I have pain and when I say a bit she injects something into the IV line and the pain goes. I drift a bit but slowly start to become more awake. The oxygen mask goes. I can hear sawing and banging noises. Apparently it is the orthopaedic surgeon in the next theatre doing a hip replacement. They take me back to the ward and bliss – I get some water and a cup of coffee. My partner arrives, as does the chicken sandwich I ordered the previous day. Horrible but needed. I am hungry. It is about 1.00 pm and I have some time to just rest and recover. The registrar and anaesthetist will decide if I can go home this evening or if I have to spend another night on the ward. I will walk on coals to get out of here so plan on being the most recovered person you have ever seen. I am allowed up to go to the loo with escort. This I manage and they take down the IV line. More rest. Observations are good and the anaesthetist gives the OK for me to go home this evening. I get dressed in the bathroom – good thing too as I throw up. I knew that chicken sandwich was horrible. There is no way I am telling anyone about this so brace myself to walk back into the ward looking 100%. Nurses arrive with advice, discharge forms and medication and dressings. I am to change the dressings myself and get back in touch if anything looks dodgy. There are lists of symptoms to look out for. My partner arrives and I make my careful way down to the car. I am feeling like shit.
In the car I ask him to drive very carefully around corners and over bumpy bits.
The journey home seems to take ages. As soon as I am in the house it is back into the loo for another throw up. Then I stagger into bed with barely a word and sleep for twelve hours.
Next day I feel surprisingly better. I lie around in bed for most of the morning. The thing around my chest is comforting but not comfortable so I bite the bullet and remove it. There are pads and dressings and I get down to the main one, which is showing a lot of discharge and blue dye. I think it needs changing so use one of the dressings supplied. The wound looks OK. About three and a half inches long. A bit leaky at the bottom end but not bad. The under arm one from the sentinel lymph node removal is fine.
I put on one of the horrible bras and get dressed. Time to get back to normal.
This was the day the flowers started arriving. Soon the house looked like a florists shop and I ran out of vases. One of my colleagues had the foresight to know I would have too many flowers and sent me a welcome bottle of red wine instead.
I am the first there so go off to explore to find a bathroom. It’s down the corridor past other wards – male and female. At least I get to put my bra back on.
Back on the ward, other women start arriving. We barely make eye contact at first but then some of them start to chat to each other. I am not feeling very sociable. They are nice ladies but not really my type. I will make conversation but not just yet. I bury my head in a book. One of the women is wearing her nightie, dressing gown and slippers. I ask if she is having her operation today but she says no. Like the rest of us it is tomorrow, the admissions people got it wrong and asked her to get changed. She even has her anti-embolism stockings on. Poor lady sits there all day like that.
I am finding the inane chatter in the background a bit trying so I put on my coat and go to the nurses’ station to say I am going for a walk. That’s fine. Lunch is being served in an hour but I can disappear until then. I get outside and make some calls while I watch some patients in wheelchairs sitting outside smoking. This whole place is depressing and it really brings it home to me how stretched the NHS is. They are trying to do a good job and in my case – indeed in the case of anyone with cancer – they pull out all the stops but they can only do what their resources allow them.
The less said about lunch or any of the food the better.
The rest of day passes – my partner comes and visits. Nurses come and ask interminable questions, - What am I allergic to? – Nickel, tetracycline and now steri -strips I reply. They fill out endless forms and fix labels to my wrist. They demand a urine sample – just in case I am pregnant? I don’t think so. Every time they come to speak to one of us you can hear the whole conversation. No privacy….but I don’t suppose any of us really care. Every 3 hours or so they repeat the observations – Blood Pressure, Pulse and Temperature. I make several more trips outside.
The night was a horror. From 11.00 pm we were not allowed any food or drink. I stayed awake as long as I could with a view to being so tired I would have to sleep. But the gods of repose were not in our area that night. The breast wire was uncomfortable and although I knew it couldn’t move there was always a horrible suspicion that somehow it would. Then there were the emergencies on the ward during the night. People falling down in the toilets, bells being rung, staff running up and down the corridor, lights on and to crown it all the lady in the next bed to me was a diabetic and a nurse took it into her head that her insulin levels were not right so she was put on a infusion pump. Fine except that it was faulty and the alarm kept going off every ten minutes. By four in the morning I had had it and sat up in bed with a demand to turn the F****** thing off. They did. Unfortunately at 5.30 it was time for the next set of observations. At six it was time to get up and wash and change into hospital gowns and put the elegant stockings on. Then we waited until we were visited by nurses, anaesthetists, registrars, Uncle Tom Cobbley and all. Every one of whom asked the same questions over and over again. I wonder if they just want to catch you out. Name, Date of birth, alleges, past medical history etc. Every time they write it down and you wonder where all of these different forms go. Why don’t they just take one set of data and all access it? Too efficient I expect.
Eventually the nurse came along with ‘The List’ - the order in which we were to go to surgery. I was third so I had a bit of time on my hands. The registrar was the last to visit, he came with a black felt tip marker and asked me which side we were doing. Left I said. Good. He drew a large black arrow on my chest pointing to my left boob. I made a mental note to ask the surgeon if he had trouble with maps.
I was so tired I was looking forward to the anaesthetic and having a good sleep so when they wheeled me into the little room before the theatre I was happy to drift off and get the whole thing over with.
Waking up isn’t hard to do – just a bit painful. I am conscious of the oxygen mask and the fact I have a pressure garment strapped around my chest. The nurse asks if I have pain and when I say a bit she injects something into the IV line and the pain goes. I drift a bit but slowly start to become more awake. The oxygen mask goes. I can hear sawing and banging noises. Apparently it is the orthopaedic surgeon in the next theatre doing a hip replacement. They take me back to the ward and bliss – I get some water and a cup of coffee. My partner arrives, as does the chicken sandwich I ordered the previous day. Horrible but needed. I am hungry. It is about 1.00 pm and I have some time to just rest and recover. The registrar and anaesthetist will decide if I can go home this evening or if I have to spend another night on the ward. I will walk on coals to get out of here so plan on being the most recovered person you have ever seen. I am allowed up to go to the loo with escort. This I manage and they take down the IV line. More rest. Observations are good and the anaesthetist gives the OK for me to go home this evening. I get dressed in the bathroom – good thing too as I throw up. I knew that chicken sandwich was horrible. There is no way I am telling anyone about this so brace myself to walk back into the ward looking 100%. Nurses arrive with advice, discharge forms and medication and dressings. I am to change the dressings myself and get back in touch if anything looks dodgy. There are lists of symptoms to look out for. My partner arrives and I make my careful way down to the car. I am feeling like shit.
In the car I ask him to drive very carefully around corners and over bumpy bits.
The journey home seems to take ages. As soon as I am in the house it is back into the loo for another throw up. Then I stagger into bed with barely a word and sleep for twelve hours.
Next day I feel surprisingly better. I lie around in bed for most of the morning. The thing around my chest is comforting but not comfortable so I bite the bullet and remove it. There are pads and dressings and I get down to the main one, which is showing a lot of discharge and blue dye. I think it needs changing so use one of the dressings supplied. The wound looks OK. About three and a half inches long. A bit leaky at the bottom end but not bad. The under arm one from the sentinel lymph node removal is fine.
I put on one of the horrible bras and get dressed. Time to get back to normal.
This was the day the flowers started arriving. Soon the house looked like a florists shop and I ran out of vases. One of my colleagues had the foresight to know I would have too many flowers and sent me a welcome bottle of red wine instead.
16 March - Facing up to the next steps
Monday 16 March. The local NHS hospital. I had been here once before to drop my son off for some minor surgery but hadn’t been inside. It wasn’t an inspiring first impression. Old buildings, too many sick looking people, old people, overweight people, scruffy environment, overcrowded waiting rooms and long lines just to check in at outpatients. Check in was indescribable. The receptionists talked to each other rather than the patients. When they did deign to call you forward it was with a ‘Next’ and a grim dose of minimal eye contact. And they took forever to find the appointment. Once they had, the instruction was find a seat somewhere in this general area and someone will call you. Right - we had an appointment for 11.45. In my world that means 11.45 not 12.45 which was when we eventually got in to see Mr P. Fortunately we were both forearmed with books and Sudoku puzzles – something I was going to become increasingly reliant on during the next weeks and months.
Mr P was charming and was accompanied by a very nice key worker breast nurse – M D. Refreshingly he didn’t ask me to take my top and bra off as he had enough information from the doctor at the breast clinic. Basically he outlined the next steps. He would carry out a lumpectomy and sentinel node biopsy to see if the cancer had progressed to the lymph nodes. His assessment was that as the cancer was so small this was unlikely to have happened. We agreed a date - 30 March when I would come in to have a Breast Wire Localisation – more on this later, and then have the operation on 31 March. My questions to him were mainly around logistics and how long recovery would take etc. I was worried that we had to bring my mother out of the nursing home on 6 April, which was only a few days after the operation and we also had holiday booked to our place in Spain for some golf in the sun in early May. Mr P suggested I discuss all this with M D and before we knew it we were out of his consulting room and following MD to another office. She spent some time explaining the operation – especially how the sentinel node biopsy is done using a blue dye which completely permeates your system and causes you to pee blue, poo blue and gives you a blue boob for a few weeks…..lovely. One downside to all this is that she tells me I will have to wear a support/sports bra for a while after the operation instead of my rather fetching black under wired ones. Oh well – off to M&S. She also provided a comprehensive handbook and loads of information and contact points. I am not a joiner of groups and had no intention of getting involved in support groups – not my scene but good for those who need it. Overall I was impressed by the care and support available despite the ghastly hospital. We parted with appointments being made for a pre-op visit and tests, and for the admittance on the day. The only downside was that it seemed that I had to have the breast wire localisation at 0930 on the 30 March and then hang around all day and overnight until the operation sometime on 31 March. But at least I knew what was happening and when – I was back in control. Back home I had some more information to research – Breast Wire Localisation and Sentinel Node Biopsy. The Breast Wire Localisation is needed because of the surgeon’s difficulty in locating the area that needs to be removed when it is not very obvious as a lump. Because my cancer was so small they needed to insert a very thin flexible wire with a hook in the end of into the cancer site. This is done in radiography using ultrasound and local anaesthetic. The hook means the wire can’t move and the end of it is coiled around and taped to your skin until the surgeon removes it along with the cancer. The sentinel node biopsy is a relatively new procedure and can only be done by surgeons who have been properly trained in the technique– fortunately Mr P was one. This procedure avoids removing a lot of lymph nodes in the first instance and therefore means less risk of unnecessary side effects and complication such as lymphodema (swelling of the arm due to lymph fluid building up and not being able to drain out of the arm because of scar tissue in the excised area of the lymph system). The recovery time seemed OK and as long as may partner drove I reckoned we could get my mother back into her home without letting on that I had just had surgery. I still didn’t want to tell her if there was no need to.
So on we went. I decided that I would still not tell my mother anything but my partner and I did decide we would tell friends and family without making a big thing of it. I didn’t want this to be seen as a tragedy. OK it wasn’t good but I could deal with it and wanted things to be as normal as possible. Needless to say friends and family were and are still fantastically supportive.
The pre admission visit was as expected apart from having to be swabbed for potential MRSA susceptibility…. didn’t show anything up so we seemed OK there.
Mr P was charming and was accompanied by a very nice key worker breast nurse – M D. Refreshingly he didn’t ask me to take my top and bra off as he had enough information from the doctor at the breast clinic. Basically he outlined the next steps. He would carry out a lumpectomy and sentinel node biopsy to see if the cancer had progressed to the lymph nodes. His assessment was that as the cancer was so small this was unlikely to have happened. We agreed a date - 30 March when I would come in to have a Breast Wire Localisation – more on this later, and then have the operation on 31 March. My questions to him were mainly around logistics and how long recovery would take etc. I was worried that we had to bring my mother out of the nursing home on 6 April, which was only a few days after the operation and we also had holiday booked to our place in Spain for some golf in the sun in early May. Mr P suggested I discuss all this with M D and before we knew it we were out of his consulting room and following MD to another office. She spent some time explaining the operation – especially how the sentinel node biopsy is done using a blue dye which completely permeates your system and causes you to pee blue, poo blue and gives you a blue boob for a few weeks…..lovely. One downside to all this is that she tells me I will have to wear a support/sports bra for a while after the operation instead of my rather fetching black under wired ones. Oh well – off to M&S. She also provided a comprehensive handbook and loads of information and contact points. I am not a joiner of groups and had no intention of getting involved in support groups – not my scene but good for those who need it. Overall I was impressed by the care and support available despite the ghastly hospital. We parted with appointments being made for a pre-op visit and tests, and for the admittance on the day. The only downside was that it seemed that I had to have the breast wire localisation at 0930 on the 30 March and then hang around all day and overnight until the operation sometime on 31 March. But at least I knew what was happening and when – I was back in control. Back home I had some more information to research – Breast Wire Localisation and Sentinel Node Biopsy. The Breast Wire Localisation is needed because of the surgeon’s difficulty in locating the area that needs to be removed when it is not very obvious as a lump. Because my cancer was so small they needed to insert a very thin flexible wire with a hook in the end of into the cancer site. This is done in radiography using ultrasound and local anaesthetic. The hook means the wire can’t move and the end of it is coiled around and taped to your skin until the surgeon removes it along with the cancer. The sentinel node biopsy is a relatively new procedure and can only be done by surgeons who have been properly trained in the technique– fortunately Mr P was one. This procedure avoids removing a lot of lymph nodes in the first instance and therefore means less risk of unnecessary side effects and complication such as lymphodema (swelling of the arm due to lymph fluid building up and not being able to drain out of the arm because of scar tissue in the excised area of the lymph system). The recovery time seemed OK and as long as may partner drove I reckoned we could get my mother back into her home without letting on that I had just had surgery. I still didn’t want to tell her if there was no need to.
So on we went. I decided that I would still not tell my mother anything but my partner and I did decide we would tell friends and family without making a big thing of it. I didn’t want this to be seen as a tragedy. OK it wasn’t good but I could deal with it and wanted things to be as normal as possible. Needless to say friends and family were and are still fantastically supportive.
The pre admission visit was as expected apart from having to be swabbed for potential MRSA susceptibility…. didn’t show anything up so we seemed OK there.
13 March - a bad news day
Friday 13 March. This last week has been difficult. Despite my research and my need to understand what I might be facing, the fear is still with me. Logically I know that this is because of how we as a society view cancer – it is the big ‘C’ and initial reaction is always that is a death sentence even though we know that so many are curable.
My partner is with me as we step into the doctor’s office at the breast clinic. The doctor is sympathetic but straightforward and doesn’t waste any time. “I’m afraid that the biopsy has come back positive. The small lump we found is a cancer but the good news is we have caught it very early and it is quite tiny. 7mm is very small and I would expect a complete cure from a well-planned treatment programme. You will be seeing Mr P on Monday and he will talk you through the next steps in detail but I expect he will carry out a lumpectomy and take some lymph nodes from the armpit to ensure that the cancer hasn’t spread. That will probably be followed by radiotherapy.
Do you have any questions?” Yes, loads but I can’t think of them right now. My partner sits quietly not knowing what to say. Like me he hasn’t had time to think of the questions we will have as soon as we leave. The doctor’s parting comment was small but important. “By the way you may like to know that the type of cancer you have is Invasive Lobular. This shouldn’t make any difference to the overall outcome of your treatment in terms of achieving a complete cure.” The nurse takes us to another room and gives us some booklets to read about having breast cancer and then we are back in the sunshine. Rather than go home we head for a restaurant to give us a place to sit and talk it over quietly. During the drive I keep saying to myself in my head ‘I have breast cancer’. It sounds so strange, so unlike me – I am the one who never gets anything. There is no incidence of it my family. My mother is 92 and apart from some age related problems and physical frailty, is doing very well. My maternal grandmother died at 92. My father at 93 albeit with, not of, prostate cancer but he didn’t get that until he was in his mid eighties. So where did this come from? Chance, lifestyle, environment, HRT – who knows? There is no point on dwelling on it. We will never know.
My biggest issues are now practical. I need to know what is happening and when, how it will affect my life, what arrangements I have to make about work, golf (my abiding passion and I had just been accepted for membership at a new club on 1 March after a year on the waiting list) – so the meeting with Mr P on Monday is critical for me to begin to feel in control of my life again.
I also have to decide how and who to tell, and when. We decide to wait until after Monday to tell any family and friends but I keep work in the loop for obvious reasons.
In the process my boss proves to be a great source of information and help as his wife has just finished a year’s treatment for breast cancer and he is very well informed and hugely sympathetic. My ultimate boss is also terrifically helpful as her mother has been through the whole thing as well. This support, and the fact that I work for a major pharmaceutical company with world class information resources on oncology, will prove to be one of the biggest factors in helping me deal with this ‘beastly disease’.
You can see from the use of terminology that I am starting to get underneath the simplistic explanations and learn about what I am facing. As I do so I become interested in the subject. Fear is replaced more by curiosity and the satisfaction of learning about something different.
On Saturday we travel up north to see my mother who is staying in a nursing home outside Crosby in Lancashire for a few weeks while my brother, who lives close to her, is away on a cruise. We don’t tell her anything as I she is inclined to panic and worry herself sick about this sort of thing and I want to work out if she needs to know at all. Similarly when we stay over with friends on the Saturday night in Manchester we keep it to ourselves and try and enjoy an early St Patrick’s Day party and a round of golf on Sunday. Not unexpectedly I play like a Muppet.
My partner is with me as we step into the doctor’s office at the breast clinic. The doctor is sympathetic but straightforward and doesn’t waste any time. “I’m afraid that the biopsy has come back positive. The small lump we found is a cancer but the good news is we have caught it very early and it is quite tiny. 7mm is very small and I would expect a complete cure from a well-planned treatment programme. You will be seeing Mr P on Monday and he will talk you through the next steps in detail but I expect he will carry out a lumpectomy and take some lymph nodes from the armpit to ensure that the cancer hasn’t spread. That will probably be followed by radiotherapy.
Do you have any questions?” Yes, loads but I can’t think of them right now. My partner sits quietly not knowing what to say. Like me he hasn’t had time to think of the questions we will have as soon as we leave. The doctor’s parting comment was small but important. “By the way you may like to know that the type of cancer you have is Invasive Lobular. This shouldn’t make any difference to the overall outcome of your treatment in terms of achieving a complete cure.” The nurse takes us to another room and gives us some booklets to read about having breast cancer and then we are back in the sunshine. Rather than go home we head for a restaurant to give us a place to sit and talk it over quietly. During the drive I keep saying to myself in my head ‘I have breast cancer’. It sounds so strange, so unlike me – I am the one who never gets anything. There is no incidence of it my family. My mother is 92 and apart from some age related problems and physical frailty, is doing very well. My maternal grandmother died at 92. My father at 93 albeit with, not of, prostate cancer but he didn’t get that until he was in his mid eighties. So where did this come from? Chance, lifestyle, environment, HRT – who knows? There is no point on dwelling on it. We will never know.
My biggest issues are now practical. I need to know what is happening and when, how it will affect my life, what arrangements I have to make about work, golf (my abiding passion and I had just been accepted for membership at a new club on 1 March after a year on the waiting list) – so the meeting with Mr P on Monday is critical for me to begin to feel in control of my life again.
I also have to decide how and who to tell, and when. We decide to wait until after Monday to tell any family and friends but I keep work in the loop for obvious reasons.
In the process my boss proves to be a great source of information and help as his wife has just finished a year’s treatment for breast cancer and he is very well informed and hugely sympathetic. My ultimate boss is also terrifically helpful as her mother has been through the whole thing as well. This support, and the fact that I work for a major pharmaceutical company with world class information resources on oncology, will prove to be one of the biggest factors in helping me deal with this ‘beastly disease’.
You can see from the use of terminology that I am starting to get underneath the simplistic explanations and learn about what I am facing. As I do so I become interested in the subject. Fear is replaced more by curiosity and the satisfaction of learning about something different.
On Saturday we travel up north to see my mother who is staying in a nursing home outside Crosby in Lancashire for a few weeks while my brother, who lives close to her, is away on a cruise. We don’t tell her anything as I she is inclined to panic and worry herself sick about this sort of thing and I want to work out if she needs to know at all. Similarly when we stay over with friends on the Saturday night in Manchester we keep it to ourselves and try and enjoy an early St Patrick’s Day party and a round of golf on Sunday. Not unexpectedly I play like a Muppet.
March 2009 - Back to the beginning
Early 2009 was an exciting time for us. We had made the big decision to embark on some major building and improvement work on our house. Months of consultations with the architect and the builder, the kitchen suppliers and not least the unbelievably difficult electricity supply people has culminated in a start date of 12 January. It was a cold winter and we were having to camp in the hall and the downstairs cloakroom for 6 to 8 weeks without a kitchen or cooking facilities so there was something of the blitz spirit about the place as the builders swung into action and covered our three story house with a thick layer of dust. The tale of the building works can be left for another time because it was during the first couple of weeks that I received a routine letter telling me I had a mammogram booked for 19 February. I go to these religiously every three years. In fact I had been on a national trial between the ages of 40 and 50 to go every year to see if this would increase early detection and cure rates for breast cancer. During that trial I had a couple of recalls, which turned out to be nothing so when I had a recall letter this time I wasn’t unduly worried.
I went to the breast clinic on 6 March and it was off with the top and bra as I had another mammogram done before meeting with a doctor. I had met her before during the earlier trial so was comfortable that she knew what she was about. Her opening words were carefully phrased. “ Mrs Staples, we have spotted a change in the tissue of your left breast since your last mammogram which we need to explore a little more closely. It isn’t a lump as such, but more a drawing together of the tissue in a way that may indicate a problem.” She proceeded to show me the x-rays and pointed out the area of concern. I have to admit my mind was racing and I was having trouble grasping what she was saying so it was a bit difficult to see what she was showing me. I’ve never been very good at reading x-rays. She went on. “I’d like to do an ultrasound check and see if we can pin this down as the x-ray isn’t giving us sufficient information.” I try to look composed and nod my consent. Off with the top and bra again and a nurse comes in as well. The doctor is quick and efficient with the ultrasound and hovers over a small dark mark on the screen clicking the computer mouse. She takes pictures, which are printed out immediately. Back on with the bra and the top.
“Well,” she says, “there is definitely something there. She shows me the pictures with the dark mark and a small white line indicating the size of the ‘problem’. “It is tiny, what ever it is. I have it measured as only 7mm, which is why it isn’t showing up very clearly on the mammograms. But I’d like another mammogram done. This one will be a little more uncomfortable than usual, as we will just squeeze the area around the end of the breast quite tightly to see if we can get a better picture.”
Back to the radiographers and off with the top and bra again. The doctor was right. This was eye-watering stuff. But all things pass. Another 20 minutes in the waiting room and I am called back.“The mammogram hasn’t given us any more information I’m afraid. However, there is definitely something there and it will have to come out, what ever it is.”
I gulp. This is getting serious. I have a horrible feeling in my stomach which it takes me a few moments to recognise as fear.
The doctor is very experienced at having this conversation. She moves into what is obviously a well-rehearsed explanation of what happens now and requests my consent to carry out a core needle biopsy under local anaesthetic. I ask when. She says now.
The nurse is called back. Off comes the top and bra again and I lie down on the couch. The ultrasound is pressed back into service. Latex gloves are snapped on. The local is administered and the doctor goes through a demonstration of the core biopsy need and warns me about the noise it makes. Off we go. The process isn’t that bad. A bit uncomfortable with some shoving and pushing and the nasty little snapping sounds but is over quite quickly. The nurse put pressure on the wound to ‘prevent bruising’. She asks if I am allergic to plasters. Not as far as I am aware I respond so it is on with some steri-stips. Some last words from the doctor. “Mrs Staples, I would be giving you false hope if I didn’t say that I think this could be a very small cancer. It may not be and the biopsy will confirm this. In any event you will need to see a breast surgeon to have it removed so we will make an appointment for you before you go. You need to sit for about 20 minutes and have a cup of tea or coffee and we will sort the appointment out for you. You may have a bit of bruising from the biopsy for a few days. I will see you in a week’s time for the biopsy results. The nurse will make that appointment for you. Please try not to worry too much and I caution against getting on the Internet and reading too much about breast cancer at this stage. It will only make you more worried.” Cobblers – it is the first thing I will do. I come from the school of thought that say the less you know the more you fear – the more you understand the less you fear and the better you can deal with it.
All in all my top and bra have been on and off four times in this visit.
Twenty minutes later I’m walking back to my car. In my bag I have an appointment with the doctor for the following Friday for the biopsy results – Friday 13th – great!
I also have an appointment at a nearby NHS hospital to see a breast surgeon on Monday 16th. As I get to the car I feel that horrible gut-wrenching stab of fear again. It is not that this can’t be happening to me, or even ‘why me?’ – it is the certainty that the biopsy will prove positive. The nurse’s parting words to me were. “Obviously we have to wait for the results but please be prepared. You might want to bring someone with you next Friday. The doctor is very good at diagnosis and she is pretty sure that this is a cancer.”
I sit in the car for a while before driving back home. I am actually working from home this day so spend the drive trying to get my head back around what I have to do for the rest of the day but I can’t do it. I keep replaying the conversation over and over in my head trying to see if I can put another meaning to the words.
Back home I call my partner and tell him what has happened. He is very quiet and shocked and he finds it hard to take in as well. I call the office and explain to my boss that I am bit shaken up and while I will be on line this afternoon I might not be the sharpest knife in the drawer.
During the next 24 hours I discover I am allergic to steri-strips as I come out in blisters wherever one has touched my skin. And in terms of a small amount of bruising, I also have a left boob that could be used as the colour palate for the sky at Golgotha.
I went to the breast clinic on 6 March and it was off with the top and bra as I had another mammogram done before meeting with a doctor. I had met her before during the earlier trial so was comfortable that she knew what she was about. Her opening words were carefully phrased. “ Mrs Staples, we have spotted a change in the tissue of your left breast since your last mammogram which we need to explore a little more closely. It isn’t a lump as such, but more a drawing together of the tissue in a way that may indicate a problem.” She proceeded to show me the x-rays and pointed out the area of concern. I have to admit my mind was racing and I was having trouble grasping what she was saying so it was a bit difficult to see what she was showing me. I’ve never been very good at reading x-rays. She went on. “I’d like to do an ultrasound check and see if we can pin this down as the x-ray isn’t giving us sufficient information.” I try to look composed and nod my consent. Off with the top and bra again and a nurse comes in as well. The doctor is quick and efficient with the ultrasound and hovers over a small dark mark on the screen clicking the computer mouse. She takes pictures, which are printed out immediately. Back on with the bra and the top.
“Well,” she says, “there is definitely something there. She shows me the pictures with the dark mark and a small white line indicating the size of the ‘problem’. “It is tiny, what ever it is. I have it measured as only 7mm, which is why it isn’t showing up very clearly on the mammograms. But I’d like another mammogram done. This one will be a little more uncomfortable than usual, as we will just squeeze the area around the end of the breast quite tightly to see if we can get a better picture.”
Back to the radiographers and off with the top and bra again. The doctor was right. This was eye-watering stuff. But all things pass. Another 20 minutes in the waiting room and I am called back.“The mammogram hasn’t given us any more information I’m afraid. However, there is definitely something there and it will have to come out, what ever it is.”
I gulp. This is getting serious. I have a horrible feeling in my stomach which it takes me a few moments to recognise as fear.
The doctor is very experienced at having this conversation. She moves into what is obviously a well-rehearsed explanation of what happens now and requests my consent to carry out a core needle biopsy under local anaesthetic. I ask when. She says now.
The nurse is called back. Off comes the top and bra again and I lie down on the couch. The ultrasound is pressed back into service. Latex gloves are snapped on. The local is administered and the doctor goes through a demonstration of the core biopsy need and warns me about the noise it makes. Off we go. The process isn’t that bad. A bit uncomfortable with some shoving and pushing and the nasty little snapping sounds but is over quite quickly. The nurse put pressure on the wound to ‘prevent bruising’. She asks if I am allergic to plasters. Not as far as I am aware I respond so it is on with some steri-stips. Some last words from the doctor. “Mrs Staples, I would be giving you false hope if I didn’t say that I think this could be a very small cancer. It may not be and the biopsy will confirm this. In any event you will need to see a breast surgeon to have it removed so we will make an appointment for you before you go. You need to sit for about 20 minutes and have a cup of tea or coffee and we will sort the appointment out for you. You may have a bit of bruising from the biopsy for a few days. I will see you in a week’s time for the biopsy results. The nurse will make that appointment for you. Please try not to worry too much and I caution against getting on the Internet and reading too much about breast cancer at this stage. It will only make you more worried.” Cobblers – it is the first thing I will do. I come from the school of thought that say the less you know the more you fear – the more you understand the less you fear and the better you can deal with it.
All in all my top and bra have been on and off four times in this visit.
Twenty minutes later I’m walking back to my car. In my bag I have an appointment with the doctor for the following Friday for the biopsy results – Friday 13th – great!
I also have an appointment at a nearby NHS hospital to see a breast surgeon on Monday 16th. As I get to the car I feel that horrible gut-wrenching stab of fear again. It is not that this can’t be happening to me, or even ‘why me?’ – it is the certainty that the biopsy will prove positive. The nurse’s parting words to me were. “Obviously we have to wait for the results but please be prepared. You might want to bring someone with you next Friday. The doctor is very good at diagnosis and she is pretty sure that this is a cancer.”
I sit in the car for a while before driving back home. I am actually working from home this day so spend the drive trying to get my head back around what I have to do for the rest of the day but I can’t do it. I keep replaying the conversation over and over in my head trying to see if I can put another meaning to the words.
Back home I call my partner and tell him what has happened. He is very quiet and shocked and he finds it hard to take in as well. I call the office and explain to my boss that I am bit shaken up and while I will be on line this afternoon I might not be the sharpest knife in the drawer.
During the next 24 hours I discover I am allergic to steri-strips as I come out in blisters wherever one has touched my skin. And in terms of a small amount of bruising, I also have a left boob that could be used as the colour palate for the sky at Golgotha.
17 June 2009 The big 'C' - Reality sets in.
17 June 2009 - So here I sit with a freezing cold helmet on my head, an IV line in a vein in my wrist into which a very nice ward sister is pumping syringes of dark red liquid. There are four of these huge syringes and she is only on the first one. Up to this point in the day I have had blood tests, been weighed, measured, had my temperature, pulse and blood pressure taken, have been given an extremely nice and very healthy lunch, given tea and coffee when ever I want it, seen my consultant and signed a consent form, had a long talk about the process I am going through from a pregnant staff nurse, had a canula inserted in my arm, been given anti sickness drugs and steroids and now here we go with the serious stuff.
Perhaps I should back track and explain how I got here. This is the tale of my left boob.
Perhaps I should back track and explain how I got here. This is the tale of my left boob.
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