Day 18 - except it isn't because you are unlikely to read this on Monday 26th September. But with that info you'll be able to work out the numbers. They said that the side effects would begin to kick in when I was through the first 14 or so days. They weren't wrong.
For a few days now I've been retiring to my bed like some frail consumptive from a Victorian novel. Ever since undertaking a ten mile walk along the Grand Union canal last Wednesday with some former work colleagues, I've been experiencing flu-like symptoms. Whether it was/is flu or not, I'm not sure but of the list of side effects I was warned to expect, fatigue, a strange chemical taste and a yellowing complexion are all now in evidence.
The odd thing is that although I know the drugs are responsible for these unpleasant changes there is absolutely no option but to continue to take the source - it seems very counter intuitive. Diana's take on this is to say that as I feel worse I can reassure myself that the drugs are working. I see her point but............
I'd like to add to my occasional list of ethereal experiences (see The Beauty in Brum, 13/7) the pleasure I derived from accessing Snow Hill Station at the end of our canal walk from Livery Street. Arriving on the elevated open platform (not the oppressive, gloomy area under the overhang) I was delighted by the opportunity it afforded to scan the city to the north and east and to watch the continual stream of traffic flowing up and down Great Charles Street/Queensway. In bright autumn sunlight I can recommend it - but it's always possible that you may need, first, to have your acuity sharpened by the onset of palliative care.
There have been other high-points. Stephen, soon to reach the age of 36 years (for those of you who remember the light-haired 3 year old in his John Lennon NHS specs) flew in from the States for a week' stay . He left yesterday. The idea had been that I would drive him to Heathrow but given my return to bed, it didn't seem like such a good idea by Saturday afternoon.
My friend Gerd, asks if my positive approach, from his reading of the blog, is a true reflection of my feelings. It's a good question. The answer is, 'not really'. I write for the person who's face I cannot see and who may not wish to read of sadness and despair.
There's one thing about which I will admit to feeling sad; the fact that my longstanding allotment buddy, Geoff, has also been diagnosed with cancer and it appears (though this awaits confirmation) that the primary tumour is in the kidney. I'm not saying I'm more upset by his experience than my own - but the one opens a tap to the other. Bear us both in your best wishes and prayers. There is still more to come before this blog is done.
Monday 26 September 2011
Monday 12 September 2011
Side effects
Well, we had the the meeting with the oncologist at the Queen Elizabeth Hospital (that's Queen Elizabeth II's mother not the current queen - only discovered this fascinating fact when I was prowling the corridors looking for a shop. It makes sense. The original buildings look to be 1930s so the naming no doubt goes back to that pre-coronation time).
As assumed, the thrust of the consultation was that I was advised to start the targeted drug therapy but I hadn't anticipated that they would suggest that I did so immediately. I had been hoping that they would tell us the findings of a detailed comparison of the pre and post op CT (soft tissue) scans as far as the lungs were concerned. That didn't happen. For the oncologists the baseline scan is the first post op and for that reason perhaps (?) they had not prioritised the comparison with the first. We were given some vague reassurances that the 'nodules' (new word) had not increased but this appeared to be contradicted by some other info they gave us which suggested they had increased in size (and quite considerably).
This is the world I get into. What are they saying? What does it mean? What are they not saying and what does that mean?
I think one thing is clear - as far as they are concerned the important comparison is between the baseline (first post-op) scan and the next which will be in a few months time when I am well into the treatment.
So far, so good, with the drugs. A 50 mg capsule of Sunitinib each morning slips down easily. Today is day 4 of 28 and then I take two weeks off before starting the cycle again and so on and so on until and unless the scans reveal that there is little or no clinical benefit from the treatment or I get a transfer to that well-stocked pharmacy in the sky..........
We were given an account of possible side effects. The list grows every time someone goes through them with us. I, of course, assume that I will have all of them; nosebleeds, diarrhoea, nausea, mouth ulcers, face rash, skin problems with palms and soles of feet, yellowing of skin, fatigue, high blood pressure etc etc etc. I may become unrecognisable!
At the moment, I'm fine but the cumulative effects are most likely to emerge in weeks 3 and 4.
Given that this therapy is very expensive (figures vary but I'll post definitive info when I get it) I was interested in what assurances I could be given that the Q E H Trust would continue to fund it indefinitely. It felt like I might have hurt their feelings from the reaction I got. There was no question - 'the drugs are NICE approved', 'as long as there were clinical benefits..................' - but I'm thinking about austerity and its side effects.
Tomorrow I join Marian in Bewdley for part 3 of our Worcestershire Way walk; from the village of Martley to Longley Green. Part 2, Shaver's End quarry to Martley, took us over a number of wooded ridges giving us some further majestic views over the English countryside. We plundered the wayside trees for damsons, apples and pears. Though we consumed our backpack victuals both of us had more weight to carry at the end that we did at the start. Neither of us felt hungry when we reached our rendezvous point.
I look forward to further adventures.................and their side effects, possibly.
As assumed, the thrust of the consultation was that I was advised to start the targeted drug therapy but I hadn't anticipated that they would suggest that I did so immediately. I had been hoping that they would tell us the findings of a detailed comparison of the pre and post op CT (soft tissue) scans as far as the lungs were concerned. That didn't happen. For the oncologists the baseline scan is the first post op and for that reason perhaps (?) they had not prioritised the comparison with the first. We were given some vague reassurances that the 'nodules' (new word) had not increased but this appeared to be contradicted by some other info they gave us which suggested they had increased in size (and quite considerably).
This is the world I get into. What are they saying? What does it mean? What are they not saying and what does that mean?
I think one thing is clear - as far as they are concerned the important comparison is between the baseline (first post-op) scan and the next which will be in a few months time when I am well into the treatment.
So far, so good, with the drugs. A 50 mg capsule of Sunitinib each morning slips down easily. Today is day 4 of 28 and then I take two weeks off before starting the cycle again and so on and so on until and unless the scans reveal that there is little or no clinical benefit from the treatment or I get a transfer to that well-stocked pharmacy in the sky..........
We were given an account of possible side effects. The list grows every time someone goes through them with us. I, of course, assume that I will have all of them; nosebleeds, diarrhoea, nausea, mouth ulcers, face rash, skin problems with palms and soles of feet, yellowing of skin, fatigue, high blood pressure etc etc etc. I may become unrecognisable!
At the moment, I'm fine but the cumulative effects are most likely to emerge in weeks 3 and 4.
Given that this therapy is very expensive (figures vary but I'll post definitive info when I get it) I was interested in what assurances I could be given that the Q E H Trust would continue to fund it indefinitely. It felt like I might have hurt their feelings from the reaction I got. There was no question - 'the drugs are NICE approved', 'as long as there were clinical benefits..................' - but I'm thinking about austerity and its side effects.
Tomorrow I join Marian in Bewdley for part 3 of our Worcestershire Way walk; from the village of Martley to Longley Green. Part 2, Shaver's End quarry to Martley, took us over a number of wooded ridges giving us some further majestic views over the English countryside. We plundered the wayside trees for damsons, apples and pears. Though we consumed our backpack victuals both of us had more weight to carry at the end that we did at the start. Neither of us felt hungry when we reached our rendezvous point.
I look forward to further adventures.................and their side effects, possibly.
Monday 5 September 2011
Those blue-remembered hills
Is there anybody still out there? I could hardly blame you for losing interest and taking up daytime television watching instead............ but do let me know if you are still reading.
So what's been happening?
Well, it's more a case of what is about to happen. On Thursday (8th September) I have another appointment with the oncologist to discuss the next steps in the treatment programme. For some reason they want to distinguish between the drug therapy that I'm due to receive and the term, chemotherapy. Mine is called targeted therapy, the generic drug treatment is Sutent and the specific drug I'm due to receive, Sunitinib. (There's an article waiting to be written on the origin of drug names).
Well that's what I was told a few weeks ago. They may change their minds because last week I went for another CT scan so they could have an up to date picture on how the disease is 'progressing'. This new info could be critical. So this is scary stuff. Wish me luck. Some have said they are praying, some are crossing their phalanges - I'm more than happy to accept all and any offers.
Meanwhile my physical recovery from the operation continues. Claire has gone home now, with Amichai and the kids, to witness the ravages of hurricane Irene. Fortunately no damage had been caused to their house in Morristown, New Jersey, but the power was out for a few days.So, though I may no longer have my personal trainer to assist me I still have her exercise and stretches programmes to follow.
In order to feel better about being less than perfect with the exercise and stretches regime, I also go walking. It seems to be the one thing that I can do to build my fitness that doesn't cause problems with the left leg. Last week I walked the first eight miles of the Worcestershire Way with my old friend Marian. The start/finish of the 33 miles route between Bewdley and Great Malvern runs past her front door.
That walk in last Friday's stunning weather was memorable. This part of Worcestershire is very hilly and scarcely-populated. We couldn't see our ultimate destination, the whale-backed Malverns, because the Abberley Hills dominated the greeny-blue horizon. I can recommend the experience to anyone.
By the time we reached Shavers End Quarry, disused but taking a large visible bite out of the forested hills, I was pretty tired. This was my most sustained period of exercise since the op. Marian and I are due to recommence the walk this Wednesday (7th September), weather permitting. If anyone else within hailing distance wants to join us they would be more than welcome - just get in touch and I'll relay the details.
I intend to post details of the meeting with the oncologist as soon as I can. And if you can't be a Deist, try to be a Phalangist.
So what's been happening?
Well, it's more a case of what is about to happen. On Thursday (8th September) I have another appointment with the oncologist to discuss the next steps in the treatment programme. For some reason they want to distinguish between the drug therapy that I'm due to receive and the term, chemotherapy. Mine is called targeted therapy, the generic drug treatment is Sutent and the specific drug I'm due to receive, Sunitinib. (There's an article waiting to be written on the origin of drug names).
Well that's what I was told a few weeks ago. They may change their minds because last week I went for another CT scan so they could have an up to date picture on how the disease is 'progressing'. This new info could be critical. So this is scary stuff. Wish me luck. Some have said they are praying, some are crossing their phalanges - I'm more than happy to accept all and any offers.
Meanwhile my physical recovery from the operation continues. Claire has gone home now, with Amichai and the kids, to witness the ravages of hurricane Irene. Fortunately no damage had been caused to their house in Morristown, New Jersey, but the power was out for a few days.So, though I may no longer have my personal trainer to assist me I still have her exercise and stretches programmes to follow.
In order to feel better about being less than perfect with the exercise and stretches regime, I also go walking. It seems to be the one thing that I can do to build my fitness that doesn't cause problems with the left leg. Last week I walked the first eight miles of the Worcestershire Way with my old friend Marian. The start/finish of the 33 miles route between Bewdley and Great Malvern runs past her front door.
That walk in last Friday's stunning weather was memorable. This part of Worcestershire is very hilly and scarcely-populated. We couldn't see our ultimate destination, the whale-backed Malverns, because the Abberley Hills dominated the greeny-blue horizon. I can recommend the experience to anyone.
By the time we reached Shavers End Quarry, disused but taking a large visible bite out of the forested hills, I was pretty tired. This was my most sustained period of exercise since the op. Marian and I are due to recommence the walk this Wednesday (7th September), weather permitting. If anyone else within hailing distance wants to join us they would be more than welcome - just get in touch and I'll relay the details.
I intend to post details of the meeting with the oncologist as soon as I can. And if you can't be a Deist, try to be a Phalangist.
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