Dr. Bruce Banner was the Incredible Hulk in case you didn't know; not that I'm being glib about it but every time I think about radiotherapy I can't help but think of the the opening sequence of The Incredible Hulk TV series from the late 70s. The consultant told me I was showing my age but it made light of the situation at any rate.
Next Tuesday (16th) I will have a radiation test dose, this will allow the medical team to extrapolate and determine what dosage they need to apply during the transplant procedure - the key thing of concern are the lungs and not "over-cooking" them, things like the brain and heart are apparently very resilient to radiation and the risk there isn't so bad.
The test dose will also get me used to the procedure - the radiation is only applied for 20 minutes or so but the set-up takes a long time as I need to be positioned "just right" within a perspex box before the dose is administered, the reason for the box is that it helps disperse the radiation more evenly apparently over the body.
Because of my age and they think I can take it, my proper treatment will be in 5 doses (as opposed to 7 or 8), the point of the radiotherapy isn't so much to kill remaining cancer cells (although that may happen but the chemo is meant to take care of that) but more to "sterilise" the bone marrow to reduce transplant rejection (Graft versus Host Disease).
Although the procedure is painless, side-effects will be tiredness, sensitive skin (not as bad as sunburn but more like 'sunblush'), nausea/vomiting, diarrhoea, sore mouth (ulcers and dried up salivary glands) and hair loss (I've been guaranteed that I will lose my hair with this...)
Turning green and getting really tall and muscular when I'm angry isn't on the list of side effects.
Thursday, 11 June 2009
Time flies when you're not in hospital
Well if you didn't know already, I was discharged from hospital last Saturday (6th) - hooray! - and can't believe how quickly the time has flown.
Despite being ready to go in the morning, logistics at hospital and home meant that it wasn't until early evening that I got home, it was fantastic though to sit and watch Robin Hood as a family and make a "pizza night" of it!
Sunday was a quiet day for us all and was just an opportunity to catch up with things in general and for me to start helping out around the house some; it gave me an opportunity to get to grips with some tasks I needed to get on with at home, breaking 2 computers wasn't on that list of things to do but somehow I accomplished it...
Monday a lot more hectic with school of course and Luke's swimming. I stayed in and didn't see much of Sarah but did get one of the computers working again better than before, but I think that's more luck and perseverance than anything else.
Tuesday was busy as it was a hospital visit to the Churchill for a discussion with the consultant about the radiotherapy treatment (more on that separately) and a follow-up on the discharge - no problems on that front but they did see that although my blood count is coming up, it's not coming up as quick as they would like for the harvest (more on that separately too!) so they have altered my tablet medication slightly to hopefully help.
Wednesday, morbid but necessary, we reviewed our wills and actually had quite a few amendments to make since they were drawn up in 2000 that took most of the morning and the rest of the day was more household tasks and an opportunity to drive Sarah around for a change. Also a trip to the dentist to ensure no infections there (which might jeopardise the transplant - yes you've guessed, more on that later too) and an unfortunate parking ticket as I didn't realise that they had changed the parking rules since February :-(
Today (Thursday) - PAPERWORK!!! Blimey, I don't know how Sarah's been able to cope with me generating all this additional medical & governmental paperwork! Anyway, I was able to help out a bit with that and with both of us on the phone in the study it was like we were running a little business! Oh, and we're having our boiler replaced too because otherwise we wouldn't be hectic enough...
Also today, my GCSF injections started - I'll cover this in the blog about harvesting - so having moved from a week of practically being bed-ridden and nothing to do it's all gone manic (and very tiring)!
Despite being ready to go in the morning, logistics at hospital and home meant that it wasn't until early evening that I got home, it was fantastic though to sit and watch Robin Hood as a family and make a "pizza night" of it!
Sunday was a quiet day for us all and was just an opportunity to catch up with things in general and for me to start helping out around the house some; it gave me an opportunity to get to grips with some tasks I needed to get on with at home, breaking 2 computers wasn't on that list of things to do but somehow I accomplished it...
Monday a lot more hectic with school of course and Luke's swimming. I stayed in and didn't see much of Sarah but did get one of the computers working again better than before, but I think that's more luck and perseverance than anything else.
Tuesday was busy as it was a hospital visit to the Churchill for a discussion with the consultant about the radiotherapy treatment (more on that separately) and a follow-up on the discharge - no problems on that front but they did see that although my blood count is coming up, it's not coming up as quick as they would like for the harvest (more on that separately too!) so they have altered my tablet medication slightly to hopefully help.
Wednesday, morbid but necessary, we reviewed our wills and actually had quite a few amendments to make since they were drawn up in 2000 that took most of the morning and the rest of the day was more household tasks and an opportunity to drive Sarah around for a change. Also a trip to the dentist to ensure no infections there (which might jeopardise the transplant - yes you've guessed, more on that later too) and an unfortunate parking ticket as I didn't realise that they had changed the parking rules since February :-(
Today (Thursday) - PAPERWORK!!! Blimey, I don't know how Sarah's been able to cope with me generating all this additional medical & governmental paperwork! Anyway, I was able to help out a bit with that and with both of us on the phone in the study it was like we were running a little business! Oh, and we're having our boiler replaced too because otherwise we wouldn't be hectic enough...
Also today, my GCSF injections started - I'll cover this in the blog about harvesting - so having moved from a week of practically being bed-ridden and nothing to do it's all gone manic (and very tiring)!
Thursday, 4 June 2009
Heart & Lungs...
As mentioned yesterday, there is some work to be completed pre-transplant and some of that happened today.
This morning I popped downstairs to the Cardiac Unit and had an echo test of my heart done. This is like an ultrasound but for the heart and bar some electrodes attached to me the principle seemed exactly the same.
I didn't get to see anything as I had to lay on my side, but with my track record of things medical that was probably a good thing! Anyway, my heart showed up fine with a very very minor observation about my Mitral Valve but certainly nothing out of the ordinary or causing concern to the medical team.
Next up was an ECG - loads of electrodes attached all over legs, arms and chest that took several minutes to set up. All for a 15 second trace and then they were whipped off! No problems on that front either.
Had a long chat with the Transplant Co-ordinator (she is absolutely brilliant) and got more details about dates and other stuff which I shall capture in another blog later (still waiting on some more details).
In the afternoon headed over to the Churchill for my lung test - it was a breeze (ho ho), all fine there too. In fact the only problem as I understood it that with my low blood count, I didn't have enough haemoglobin to absorb all the oxygen I was able to inhale!!
Didn't rush back to the JR, beautiful afternoon here so Sarah (she was with me all day) and I managed to spend some time in a lovely garden over at the Churchill which was wonderful.
Pretty tired after all of this and hooked up with IVs for the night that should take me through to 3am :-(
Oh well, the garden was nice!
This morning I popped downstairs to the Cardiac Unit and had an echo test of my heart done. This is like an ultrasound but for the heart and bar some electrodes attached to me the principle seemed exactly the same.
I didn't get to see anything as I had to lay on my side, but with my track record of things medical that was probably a good thing! Anyway, my heart showed up fine with a very very minor observation about my Mitral Valve but certainly nothing out of the ordinary or causing concern to the medical team.
Next up was an ECG - loads of electrodes attached all over legs, arms and chest that took several minutes to set up. All for a 15 second trace and then they were whipped off! No problems on that front either.
Had a long chat with the Transplant Co-ordinator (she is absolutely brilliant) and got more details about dates and other stuff which I shall capture in another blog later (still waiting on some more details).
In the afternoon headed over to the Churchill for my lung test - it was a breeze (ho ho), all fine there too. In fact the only problem as I understood it that with my low blood count, I didn't have enough haemoglobin to absorb all the oxygen I was able to inhale!!
Didn't rush back to the JR, beautiful afternoon here so Sarah (she was with me all day) and I managed to spend some time in a lovely garden over at the Churchill which was wonderful.
Pretty tired after all of this and hooked up with IVs for the night that should take me through to 3am :-(
Oh well, the garden was nice!
Wednesday, 3 June 2009
What happened to May???
May for me simply fell off the calendar thanks to numerous hospital trips both planned and unplanned totally knocking me out.
Thanks again particularly to Sarah and my Dad for standing by me so much through this with countless trips and visits but also thanks to Sarah's parents and the many wonderful friends back in Maidenhead who've helped look after the boys at a moment's notice.
I’ve provided some updates as to what’s happened since the last blog update back at the end of April and will provide a view of what's coming up when things have solidified a bit more.
Thanks again particularly to Sarah and my Dad for standing by me so much through this with countless trips and visits but also thanks to Sarah's parents and the many wonderful friends back in Maidenhead who've helped look after the boys at a moment's notice.
I’ve provided some updates as to what’s happened since the last blog update back at the end of April and will provide a view of what's coming up when things have solidified a bit more.
Pre-Transplant
Coinciding with my current stay at the “Hotel Radcliffe” is my ‘Work Up’ day – I am due for transplant in July but before that tomorrow (Thursday 4th June) I need to do some ECG tests, lung tests etc. to ensure I’m physically fit enough for the procedure.
There is talk too of doing a bone marrow sample but I don’t think my blood counts are enough currently to warrant that and that will probably happen next week now.
Other joys coming up will be a test radiation dose ahead the transplant procedure.
There is talk too of doing a bone marrow sample but I don’t think my blood counts are enough currently to warrant that and that will probably happen next week now.
Other joys coming up will be a test radiation dose ahead the transplant procedure.
Infection
You may recall from earlier postings that infection is one of the critical things to guard against during treatment due to low-to-zero immune system. Remarkably I seemed to have protected myself against it since March but in May it all came crashing down…
• 4th-11th May
• 20th-26th May
• And now, 31st May – still here, trying to get my temperature stabilised…
All in all quite frustrating and in some instances alarming when my temperature kept climbing and I couldn’t stop shivering and shaking, but one thing that came out of it – for ages I’ve been (through my old doctor) under the misapprehension that I was allergic to Penicillin. I never used to be and it turns out that I never was! That at least makes things more manageable!
• 4th-11th May
• 20th-26th May
• And now, 31st May – still here, trying to get my temperature stabilised…
All in all quite frustrating and in some instances alarming when my temperature kept climbing and I couldn’t stop shivering and shaking, but one thing that came out of it – for ages I’ve been (through my old doctor) under the misapprehension that I was allergic to Penicillin. I never used to be and it turns out that I never was! That at least makes things more manageable!
Phase 2 complete, sort of…
So where I left off was 27th April (Sarah’s birthday for which I was able to organise a present and card – thank-you Internet!!) when I was 2 weeks into Phase 2.
Basically Phase 2 seemed relatively uneventful and I seemed to be able to tolerate the awful Cyclophosphamide better for the last 2 doses. In so saying, the constant driving (and I was just the passenger!), chemo, blood & platelet transfusions really took it out of me and even the days where I didn’t feel too bad, by the time I got home I’d had enough and just wanted to spend time with Sarah and then the boys when they got home.
The last full week of treatment was 12th-15th May (just after Jake’s birthday) but the last dose of Cyclophosphamide was 18th May and that wrapped up Phase 2, the only thing is that I’ve missed a couple of lumbar punctures mainly down to unfortunately hospital problems.
I don’t get away that easily though, it’s likely they’ll give me the intra-thecals during the transplant window.
Basically Phase 2 seemed relatively uneventful and I seemed to be able to tolerate the awful Cyclophosphamide better for the last 2 doses. In so saying, the constant driving (and I was just the passenger!), chemo, blood & platelet transfusions really took it out of me and even the days where I didn’t feel too bad, by the time I got home I’d had enough and just wanted to spend time with Sarah and then the boys when they got home.
The last full week of treatment was 12th-15th May (just after Jake’s birthday) but the last dose of Cyclophosphamide was 18th May and that wrapped up Phase 2, the only thing is that I’ve missed a couple of lumbar punctures mainly down to unfortunately hospital problems.
I don’t get away that easily though, it’s likely they’ll give me the intra-thecals during the transplant window.
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