Saturday - Golf is cancelled because of gale force winds and driving rain. Probably the worst storm we have had this year. Sitting in my study I can watch the leaves being stripped off the trees. It’s a good time to catch up on the blog.
Over half way through the zapping. It seems to have gone very quickly and so far, compared to chemo, it is very straightforward. The biggest hassle is having to drive and hour each way for a 10-minute process. As advised, I diligently anoint MLB with aqueous cream morning and night and it seems to have the desired effect in that my skin hasn’t really shown much sign of being affected. I was warned that it would probably go red and start to become quite sore after about seven to ten days but this hasn’t happened. I do know that the effect is cumulative though and continues to get worse for a couple of weeks after the therapy has finished so I am expecting to get some reaction over the next few days.
More info on radiotherapy at St Luke’s Cancer Centre here for those who are interested http://www.royalsurrey.nhs.uk/External-beam-radiotherapy
The other good news is that I have also now had four sessions of MLD and the results are quite amazing. The therapist measured both arms before she started to see how badly swollen the left one was. There was a difference of about 3 cms in some places and her whizzy computer calculated that the arm was carrying 390mls of extra fluid…that’s around ¾ of a pint. Those of you who recall Tony Hancock might remember him going to give blood and coming out with the immortal words along the lines of...”A pint! That’s an armful.” How true.
Anyway, the MLD has reduced a lot of the swelling and the overall process has kick started my lymph system working properly again so that I have lost something like 8 lbs in less than a week. My ankles are back to normal and I am just much less bloated overall. Even my face and neck look thinner. I must have been carrying a massive amount of extra fluid around. All thanks to the b***** chemo.
This afternoon I will pick up a compression sleeve from the therapist. I will wear this for golf, working on the computer, flying and anything that may cause the arm to swell again. Hopefully this plus the exercises and simple massage I can do myself, along with some top up trips to the therapist will keep things under control. The bad news is that I will have this problem for life. I just have to learn to live with it.
It could be worse…I have a permanent excuse to ask people to carry things for me!
Still no real sign of any hair growing back. I have had a faint, thin fuzz for a few weeks but it hasn’t developed into anything. It’s got to happen soon!!
The wig is going out this evening. It is the night of the golf ball at the RAC. It will be the first (and probably the last) time it gets to go to a posh do.
Saturday, 14 November 2009
Tuesday, 3 November 2009
November 3 - Zapped
Today was the first day of Radiotherapy. Now call me old fashioned but as a private patient, when I have an appointment for 10.40, I expect it to be kept within 10 minutes or so. Especially as I am still working and have arranged meetings and teleconferences around the scheduled radiotherapy times.
I didn’t get in to be zapped until 50 minutes after my scheduled time. Needless to say, I explained which way was up to the people concerned. I don’t think it will happen again!
Early days but the actual zapping bit was straightforward. Large machine is positioned by two radiographers who mutter strange numbers at each other for a few minutes and move you around in the dark with light beams being lined up on the tattoos etc. Then a minute or two of actual zapping – only noticeable by the noise the Linear Accelerator makes, and then it is off to put the bra and top back on and home we go. The biggest problem is that it takes me at least 40 mins to drive each way, which is a complete drag.
Apparently I am very likely to get a sore boob after a week to 10 days, which will last for 2-3 weeks after the therapy is complete. C’est la Guerre.
My biggest concern at the moment is getting the lymphedema in my left arm treated. My medical insurance won’t cover Manual Lymphatic Drainage Massage by any one who is not a registered nurse or certified by the HPC. As there is no category for MLD specialists in the HPC that only leaves RNs who are also MLD specialists and there aren’t any within about 25 miles of where I live. There is however a highly recommended therapist where I live so I am working on trying to get the Insurance Company to agree to use her. If not I will have to pay for treatment myself or use the NHS (many weeks of waiting and a 50 mile round trip). In the meantime, my left arm is swollen and aches when I stretch it. I spend a lot of time waving it in the air and clenching and unclenching my fist. (Something that is supposed to help.) I’ve tried doing it in public and while I am driving but people think I am making black power salutes at them and give me some very odd looks. I need to be a bit circumspect about this. It could lead to some nasty situations.
Side effects from the chemo are also still in evidence – swollen ankles and feet and fingernails that are becoming detached from the nail bed. No sign of hair regrowth yet.
On the positive side I had a fantastic few days in Venice. It was wonderful and I am definitely going back – soon. The wig behaved reasonably well - It got overexcited on a breezy vaporetto trip and tried to take a quick dip in a canal but I managed to stop it.
NEWS…NEWS…NEWS… I just had an e-mail from the insurance company agreeing to let me use the local therapist for MLD. Brilliant.
I didn’t get in to be zapped until 50 minutes after my scheduled time. Needless to say, I explained which way was up to the people concerned. I don’t think it will happen again!
Early days but the actual zapping bit was straightforward. Large machine is positioned by two radiographers who mutter strange numbers at each other for a few minutes and move you around in the dark with light beams being lined up on the tattoos etc. Then a minute or two of actual zapping – only noticeable by the noise the Linear Accelerator makes, and then it is off to put the bra and top back on and home we go. The biggest problem is that it takes me at least 40 mins to drive each way, which is a complete drag.
Apparently I am very likely to get a sore boob after a week to 10 days, which will last for 2-3 weeks after the therapy is complete. C’est la Guerre.
My biggest concern at the moment is getting the lymphedema in my left arm treated. My medical insurance won’t cover Manual Lymphatic Drainage Massage by any one who is not a registered nurse or certified by the HPC. As there is no category for MLD specialists in the HPC that only leaves RNs who are also MLD specialists and there aren’t any within about 25 miles of where I live. There is however a highly recommended therapist where I live so I am working on trying to get the Insurance Company to agree to use her. If not I will have to pay for treatment myself or use the NHS (many weeks of waiting and a 50 mile round trip). In the meantime, my left arm is swollen and aches when I stretch it. I spend a lot of time waving it in the air and clenching and unclenching my fist. (Something that is supposed to help.) I’ve tried doing it in public and while I am driving but people think I am making black power salutes at them and give me some very odd looks. I need to be a bit circumspect about this. It could lead to some nasty situations.
Side effects from the chemo are also still in evidence – swollen ankles and feet and fingernails that are becoming detached from the nail bed. No sign of hair regrowth yet.
On the positive side I had a fantastic few days in Venice. It was wonderful and I am definitely going back – soon. The wig behaved reasonably well - It got overexcited on a breezy vaporetto trip and tried to take a quick dip in a canal but I managed to stop it.
NEWS…NEWS…NEWS… I just had an e-mail from the insurance company agreeing to let me use the local therapist for MLD. Brilliant.
Monday, 19 October 2009
October 19 - A word or two about side effects.
Having rejoiced greatly at the end of chemo, I am now becoming somewhat fed up with the ongoing physical side effects of the whole chemo process but more specifically the Taxotere treatments.
At the moment the fingernails on my left hand are starting to part company with the nail bed and I am hoping that the process stops before I actually lose the nails. On top of that, I have put on nearly a stone over the course of the chemo sessions and the Taxotere has made this even worse because of the fluid retention effect so I feel fat and have swollen ankles and feet, not to mention my left arm which is developing lymphedema. Aaaargh! I look like a Michelin woman.
On top of that, my eyes are streaming with tears most of the time – especially outside. Makes playing golf very tricky. The medical folks all say not to worry it – the effects will go and the weight will come off in time. Typically they won’t be pinned down as to how long all this will take.
I will just have to be patient.
I had a CT scan last week to get set up for radiotherapy. Very straightforward and I now have the two tiny tattoos. You can hardly see them – definitely no street cred to be had there.
Will start checking for hair regrowth when I get back from Venice.
At the moment the fingernails on my left hand are starting to part company with the nail bed and I am hoping that the process stops before I actually lose the nails. On top of that, I have put on nearly a stone over the course of the chemo sessions and the Taxotere has made this even worse because of the fluid retention effect so I feel fat and have swollen ankles and feet, not to mention my left arm which is developing lymphedema. Aaaargh! I look like a Michelin woman.
On top of that, my eyes are streaming with tears most of the time – especially outside. Makes playing golf very tricky. The medical folks all say not to worry it – the effects will go and the weight will come off in time. Typically they won’t be pinned down as to how long all this will take.
I will just have to be patient.
I had a CT scan last week to get set up for radiotherapy. Very straightforward and I now have the two tiny tattoos. You can hardly see them – definitely no street cred to be had there.
Will start checking for hair regrowth when I get back from Venice.
Tuesday, 6 October 2009
October 6 - That's it...no more chemo
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.
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.
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!
Tuesday, 1 September 2009
1 September - Feeling Fine
Tuesday 1 September - Feeling fine again. I think chemo is a bit like childbirth…you forget the horrible bits very quickly. That said I am still going to ask Dr S what we can do to make the side effects from the next one a bit more bearable for going on hols.
It’s been a busy few days. From about Wednesday last week I started to recover quite quickly even to the extent that I could taste a glass of wine on Friday…..those who know me well will take this an excellent indicator of my state of health!
I had a bit more time on my hands that day than I expected as my laptop crashed in a rather spectacular manner and as I was working from home there was little I could do. ….our IT team were very good and did eventually get me access to my e-mail via my home PC. In the meantime I caught up with some friends for lunch and managed to see Mr P for a quick consultation about another little ‘complication’ from the surgery. A few weeks after surgery I noticed a tightening in my upper left arm. This became quite painful and thin cords started to appear just under the skin running from my armpit to my wrist. This is called axillary web syndrome (AWS) and occurs quite often after the type of surgery I’ve had. The ‘cords’ are part of the lymph system that seem to harden after surgery. In my case it has improved a great deal and I now only have a few ‘cords’ and a funny lump on the underside my upper arm, which is getting smaller but Mr P wanted to check it out. The upshot is that it is fine. I wanted to mention it because it is quite common but little is known about it and some people apparently find it very distressing. They shouldn’t. I did some research into it and the acute phase when there is some discomfort or pain is very short and specialists agree that it does resolve in nearly every case after about 3 months.
One of the rather odd things that happens with AWS is that if you stretch your arm, as I do in Pilates classes, some of the cords will snap. This is a very weird feeling but also brings significant relief.
The rest of the bank holiday weekend was busy with golf, an eighteenth birthday bash and the first anniversary of a bookshop owned by a friend - Barton's Bookshop in Leatherhead. He had invited Prue Leith to cut the birthday cake and sign some copies of her recent book. The cake was fantastic…even Prue agreed. She is a delightful lady and I really like her book - called Choral Society. I recommend it.
The wig continues to thrive.
It’s been a busy few days. From about Wednesday last week I started to recover quite quickly even to the extent that I could taste a glass of wine on Friday…..those who know me well will take this an excellent indicator of my state of health!
I had a bit more time on my hands that day than I expected as my laptop crashed in a rather spectacular manner and as I was working from home there was little I could do. ….our IT team were very good and did eventually get me access to my e-mail via my home PC. In the meantime I caught up with some friends for lunch and managed to see Mr P for a quick consultation about another little ‘complication’ from the surgery. A few weeks after surgery I noticed a tightening in my upper left arm. This became quite painful and thin cords started to appear just under the skin running from my armpit to my wrist. This is called axillary web syndrome (AWS) and occurs quite often after the type of surgery I’ve had. The ‘cords’ are part of the lymph system that seem to harden after surgery. In my case it has improved a great deal and I now only have a few ‘cords’ and a funny lump on the underside my upper arm, which is getting smaller but Mr P wanted to check it out. The upshot is that it is fine. I wanted to mention it because it is quite common but little is known about it and some people apparently find it very distressing. They shouldn’t. I did some research into it and the acute phase when there is some discomfort or pain is very short and specialists agree that it does resolve in nearly every case after about 3 months.
One of the rather odd things that happens with AWS is that if you stretch your arm, as I do in Pilates classes, some of the cords will snap. This is a very weird feeling but also brings significant relief.
The rest of the bank holiday weekend was busy with golf, an eighteenth birthday bash and the first anniversary of a bookshop owned by a friend - Barton's Bookshop in Leatherhead. He had invited Prue Leith to cut the birthday cake and sign some copies of her recent book. The cake was fantastic…even Prue agreed. She is a delightful lady and I really like her book - called Choral Society. I recommend it.
The wig continues to thrive.
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