Tuesday 6 October.
I’m up and about! Tired and prone to falling asleep at the drop of a hat but upright and dressed which is better than when I was on hols. I took my own advice after the last chemo session and simply gave in.
The actual session was fine. In fact I couldn’t wait to get it done with so I really could say ‘ no more chemo’. Good thing it was the last session. I have no more useable veins in my right hand and arm so if I needed any more IVs I would be in trouble.
During the last session Dr S arrived to discuss the next steps – Radiotherapy - and we have arranged for me to have a planning session and CT scan on 13 October followed by the first blast of mega rays on 3 Nov at St Luke’s Cancer centre in Guildford. After that it is a daily trek to the hospital for a 10 minute session until 23 Nov when we will be all done. As ever I have had to sign the inevitable consent form, including giving permission to be tattooed! Apparently they like to put some permanent ‘dots’ in place so they know where to aim the RT. And I always said I would never have a tattoo!
Saw Mr P on the Thursday after chemo while I was still OK. A five minute follow up where he expressed himself more than happy with progress and asked me to come back in January. I’ll be interested to see how much we get charged for that visit. Had the last Neulasta jab Thursday afternoon and that was it.
Worked from home on Friday but was beginning to feel a bit spaced out and by Saturday I was sleeping most of the time. Sunday and Monday were much the same with the ‘bleugh’ feeling and lack of taste kicking in. I decided not to take the co-codamol but stuck to paracetamol for the bone pain. It sort of worked but I have had a lot of bone pain at night, which has made me a bit more tired than I planned. The positive is that I have not had as much of an upset stomach. Swings and roundabouts. Now though I think I might be able to do a bit of work tomorrow and even attempt some gentle Pilates on Thursday.
The chemo nurses have been great through all of this but I have to say I am delighted not to have to see them again. I did get to have a chat with the oncology liaison nurse before I left. Not about the treatment but about the pastoral care chap who has jumped ship and gone off to be a Roman Catholic priest. I jokingly said I hoped he wasn’t married and she floored me by saying not only was he married but he has two children. How does that work then? Answers in the comments section if you know. It’s all a bit ‘Thornbirds’ if you ask me.
Next stop Venice and then I shall be looking carefully in the mirror to spot the first signs of hair re-growth. So much to look forward to!
The wig is getting a bit worried. I shall work on a retirement plan for it. But it will still be needed for a few months yet I think.
Showing posts with label chemotherapy. Show all posts
Showing posts with label chemotherapy. Show all posts
Tuesday, 6 October 2009
Thursday, 24 September 2009
24 September - Sunshine & Showers
Thursday 24 September.
Here we are just back from 11 days in Spain. Well - the best-laid plans went astray! I had the horrid Neulasta jab on the Thursday after chemo and started taking the pain relief straight away. Didn’t have any bone pain over the next few days at all. Having played (gently) in the mixed invitation at LGC and felt a bit off by the end of the day I threw stuff into a bag when I got home and called it ‘packing’.
I was very tired by about 9 pm and went to bed, as we had to be up at 3.45 am to catch our 6.25 am flight. When I woke up I felt awful. Incredibly tired and with more of the ‘bleugh’ feeling than I had experienced before. I managed to get in the taxi but was feeling even worse when we got to the airport. The flight was a nightmare – I kept falling asleep but every time the cabin crew came with food or drink I woke up feeling queasy. Suffice it to say that I really don’t remember a lot of the trip. I fell asleep on the plane, in the baggage hall, at the car rental counter, in the car on the trip to La Manga Club and finally on top of the unmade bed in the apartment. Basically I stayed in that bed for three days. I couldn’t eat much and had poor C running around finding things that I thought I wanted like crunchy nut cornflakes (not available) and apples (something I rarely eat). I slept most of the time but had a really upset stomach and I am not sure if that was the Taxotere, the Co-codamol or the Senokot. Spain was very hot that first week so we kept the air conditioning running the whole time. I’m not sure what I would have done without it. Eventually I emerged and started eating again and by Thursday was able to play a bit of golf but had to have a ride on Scooter. By Saturday I was fine and firing on all cylinders although I looked whiter than i have ever looked out there before - I was slapping factor 50 sun block on because chemo really makes you sensitive to the sun. The rest of the holiday was great with some lovely food and great wine (Yes, I could taste it).
The golf was a bit patchy but was just coming right when we got to the last competition yesterday. Sods law being what it is, we got rained off and had to go out to lunch with the friends we were playing with instead. Such hardship!
The whole thing has taught me that after the next and thankfully last chemo session, I will simply take paracetamol and give in gracefully by crashing for those crucial days – probably Sunday to Wednesday.
But I do have a little treat in store…I’m off to Venice with a girlfriend on 22 October to celebrate no more chemo!!
The wig behaved perfectly and managed the heat without any problem. I was impressed.
Here we are just back from 11 days in Spain. Well - the best-laid plans went astray! I had the horrid Neulasta jab on the Thursday after chemo and started taking the pain relief straight away. Didn’t have any bone pain over the next few days at all. Having played (gently) in the mixed invitation at LGC and felt a bit off by the end of the day I threw stuff into a bag when I got home and called it ‘packing’.
I was very tired by about 9 pm and went to bed, as we had to be up at 3.45 am to catch our 6.25 am flight. When I woke up I felt awful. Incredibly tired and with more of the ‘bleugh’ feeling than I had experienced before. I managed to get in the taxi but was feeling even worse when we got to the airport. The flight was a nightmare – I kept falling asleep but every time the cabin crew came with food or drink I woke up feeling queasy. Suffice it to say that I really don’t remember a lot of the trip. I fell asleep on the plane, in the baggage hall, at the car rental counter, in the car on the trip to La Manga Club and finally on top of the unmade bed in the apartment. Basically I stayed in that bed for three days. I couldn’t eat much and had poor C running around finding things that I thought I wanted like crunchy nut cornflakes (not available) and apples (something I rarely eat). I slept most of the time but had a really upset stomach and I am not sure if that was the Taxotere, the Co-codamol or the Senokot. Spain was very hot that first week so we kept the air conditioning running the whole time. I’m not sure what I would have done without it. Eventually I emerged and started eating again and by Thursday was able to play a bit of golf but had to have a ride on Scooter. By Saturday I was fine and firing on all cylinders although I looked whiter than i have ever looked out there before - I was slapping factor 50 sun block on because chemo really makes you sensitive to the sun. The rest of the holiday was great with some lovely food and great wine (Yes, I could taste it).
The golf was a bit patchy but was just coming right when we got to the last competition yesterday. Sods law being what it is, we got rained off and had to go out to lunch with the friends we were playing with instead. Such hardship!
The whole thing has taught me that after the next and thankfully last chemo session, I will simply take paracetamol and give in gracefully by crashing for those crucial days – probably Sunday to Wednesday.
But I do have a little treat in store…I’m off to Venice with a girlfriend on 22 October to celebrate no more chemo!!
The wig behaved perfectly and managed the heat without any problem. I was impressed.
Thursday, 10 September 2009
10 September - Fifth chemo
Thursday September 10. Yesterday was the fifth chemo session. All went OK apart from a blown vein on the first attempt to get a canula in. Thank goodness I only have one more to go…we are running out of decent veins.
I had a long chat with Dr S about side effects. He didn’t want to skip the Neulasta jab because of the risk of the White Blood Cell count being too low during our hols and also not good enough for the last Chemo session so I have agreed to have it again but with some heavy-duty pain relief starting this afternoon just after I have the injection in about 40 minutes time. Hopefully this will work although the pharmacist has warned me that I will need to take large doses of laxative to alleviate the side effects of the pain relief – so on it goes!
The other thing of note during chemo was another visit from the pastoral care chap who told me that he wouldn’t be around next time I came as he was leaving. Naturally, being a polite sort, I asked why and he confessed that he was about to become a Roman Catholic priest. Apparently, he is a Church of England priest but has become confused about C of E doctrine and isn’t sure what he is supposed to believe in. I’m not sure if the RC church is any clearer as they seem to go through as many crises of faith as any other system of organised religion. Still I wished him luck – I hope he isn’t married. I forgot to ask.
Looking forward to going to Spain on Sunday. I will try and get an update onto to blog while I am away.
The wig is looking forward to the trip and has been making some mysterious preparations!
I had a long chat with Dr S about side effects. He didn’t want to skip the Neulasta jab because of the risk of the White Blood Cell count being too low during our hols and also not good enough for the last Chemo session so I have agreed to have it again but with some heavy-duty pain relief starting this afternoon just after I have the injection in about 40 minutes time. Hopefully this will work although the pharmacist has warned me that I will need to take large doses of laxative to alleviate the side effects of the pain relief – so on it goes!
The other thing of note during chemo was another visit from the pastoral care chap who told me that he wouldn’t be around next time I came as he was leaving. Naturally, being a polite sort, I asked why and he confessed that he was about to become a Roman Catholic priest. Apparently, he is a Church of England priest but has become confused about C of E doctrine and isn’t sure what he is supposed to believe in. I’m not sure if the RC church is any clearer as they seem to go through as many crises of faith as any other system of organised religion. Still I wished him luck – I hope he isn’t married. I forgot to ask.
Looking forward to going to Spain on Sunday. I will try and get an update onto to blog while I am away.
The wig is looking forward to the trip and has been making some mysterious preparations!
Wednesday, 26 August 2009
26 August - I learn that I am not superwoman.
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.
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.
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.
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.
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.
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.
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.
Subscribe to:
Posts (Atom)
