Well the sun's out again and I'm feeling so much better. I expect there are bees flying again and I've just seen the nuthatch. But my Reiki session yesterday revealed that once again I'm not looking forward enough. Yes, I've got the summer sorted and can almost smell that fresh crushed grass and canvas in warm sun as we set up at a folk camp. But beyond that I have to admit I'm having a problem imagining next winter. This one has been so cold, so negative in so many ways - although I am by no means depressed - that I just don't want to contemplate shortening days, not yet anyway.
My Reiki practitioner suggested that I concentrate envisaging my granddaughter's wedding or something really far off. Hm - those who know my granddaughter will understand how difficult that one is going to be! I think what I need is some monumentally large project, something really big which stretches into the far future. Any ideas?
Tuesday, 8 March 2011
Sunday, 6 March 2011
Grot day two
It seems a terrible waste just to wish a day away but I have to admit to the terrible truth that that's what I do on the grot days. It's 11 pm now and I have to admit I'm feeling much better than I did earlier today. I reckon with a good night's sleep and Reiki tomorrow I should be well on the mend again. Night, night all.
Saturday, 5 March 2011
Grotty day
The only real downside of my chemo, apart from the hair thinning, is the three or four days of feeling strange and nauseaous. Today is the second of my most grotty days. I'm sitting in front of ITV3 watching some jolly good TV from days of yore; old British programmes with lovely sets and wonderful costumes. Tomorrow should be better and by Monday I anticipate bouncing back to normality.
Friday, 4 March 2011
Slightly strange
Not sure how I feel today, slightly strange is probably the best description. I've discovered a new drink which is nice at this time of heightened smell and odd flavour experiences: ginger tea. One of the legacies from the week away was that we came home with a whole pile of ginger. If I use a garlic press and crush a slice, I get ginger juice and squashy bits, which when added to hot water make a lovely tea.
I did have a desire to get onto the rowing machine this morning in the hope that speeding up my metabolism might make the effects of the chemo pass quicker. But common sense has grabbed hold of me. Given that various side effects are being clevery masked by steroids and anti-nausea drugs, I won't be able to read my body's signals too well. So it's probably wise to proceed with caution.
So instead I'm spending the day learning the music notation program so that I can start converting my father's recorder arrangements into digital files.
I did have a desire to get onto the rowing machine this morning in the hope that speeding up my metabolism might make the effects of the chemo pass quicker. But common sense has grabbed hold of me. Given that various side effects are being clevery masked by steroids and anti-nausea drugs, I won't be able to read my body's signals too well. So it's probably wise to proceed with caution.
So instead I'm spending the day learning the music notation program so that I can start converting my father's recorder arrangements into digital files.
Thursday, 3 March 2011
Not an unreasonable request
I have now spoken to my ANP (nurse specialising in lung cancer and attached to the team). She does not think my insistence on getting some clear answers and explanations to my questions unreasonable and will bring up the case at the next team meeting and get back to me. I was very reassured and consoled by my phone conversation. In fact I got the feeling that she felt the matter of lack of information was a little more serious than I did.
So far I've remained relatively calm and serene through all the hiccups of the process. But I realised after Tuesday's meeting that I'd gone into attack mode and of course that means storing up some new baggage which is not good for this temple of a body that I'm creating. So to be thought reasonable is a great relief.
It's strange, the chemo does appear first to affect the brain. If I ever have any 'down' feelings they are rare and usually on the first few days after chemo. Today I found I was thinking negative thoughts - it didn't last long - just a few sconds and I snapped out of it - but it does happen. I know some people who read this blog think I'm putting a gloss on having this life-threatening illness, but believe me I'm not. I really am having a lovely time at the moment in my semi-retirment and the black cloud only grabs me just occasionally.
So far I've remained relatively calm and serene through all the hiccups of the process. But I realised after Tuesday's meeting that I'd gone into attack mode and of course that means storing up some new baggage which is not good for this temple of a body that I'm creating. So to be thought reasonable is a great relief.
It's strange, the chemo does appear first to affect the brain. If I ever have any 'down' feelings they are rare and usually on the first few days after chemo. Today I found I was thinking negative thoughts - it didn't last long - just a few sconds and I snapped out of it - but it does happen. I know some people who read this blog think I'm putting a gloss on having this life-threatening illness, but believe me I'm not. I really am having a lovely time at the moment in my semi-retirment and the black cloud only grabs me just occasionally.
Wednesday, 2 March 2011
Chemo again today
We arrived slightly early at the ward today and there were no hold-ups so my chemo dose was completed by 3.15 pm and we drove home in sunshine. That makes a change.
Guess what? The chemo nurses queried that it was my last dose. They normally give six and that was what it said on their 'pink sheet'. It was important to get this right because they provide enough of the necessary drugs that I take before another dose. After querying this with the lead consultant's secretary I was told that at the next consultant appointment, after the next scan, it would be decided what the next stage in treatment would be. Hm - the letter I was given yesterday clearly states "radiotherapy".
Tomorrow I have decided I will ring my specialist Macmillan nurse. I will suggest that either she gives "a member of my staff" the list of questions which I intend to ask in three weeks (to give him plenty of opportunity to read the notes and prepare answers) or my appointment is changed so that I can meet the lead consultant who is actually making the decisions about my treatment regime. I want to know why four cycles and not six.
Guess what? The chemo nurses queried that it was my last dose. They normally give six and that was what it said on their 'pink sheet'. It was important to get this right because they provide enough of the necessary drugs that I take before another dose. After querying this with the lead consultant's secretary I was told that at the next consultant appointment, after the next scan, it would be decided what the next stage in treatment would be. Hm - the letter I was given yesterday clearly states "radiotherapy".
Tomorrow I have decided I will ring my specialist Macmillan nurse. I will suggest that either she gives "a member of my staff" the list of questions which I intend to ask in three weeks (to give him plenty of opportunity to read the notes and prepare answers) or my appointment is changed so that I can meet the lead consultant who is actually making the decisions about my treatment regime. I want to know why four cycles and not six.
Tuesday, 1 March 2011
"a member of his team" .... again
My consultant appointment was with one of the "member of his team" variety (the same one as last time). This time he got the full works. I asked all the questions that still required an answer and he actually had to read my notes in some depth before we let him off the hook.
Contrary to what is written on the Macmillan-originated Pemetrexed and Cisplatin information sheet given to me by the hospital before the start of my treatment, that normally six cycles are given, I learned I am to receive four so tomorrow is the last one - whoopee! I think that's rather good news. I've just researched and found that four is the standard in the UK so why the document I have says six I don't know.
The Macmillan nurse sat during the consultation in a pose that I can only describe, reading her body language, as "embarrassed". I too would have been embarrassed if I had been asked to witness a consultant demonstrating that he had read very few of the patient's notes.
I was trying to find out what the situation was with my thyroid. "A member of his team" looked slightly puzzled by the question. He shouldn't have done - I asked him the same question last time. Do I have thyroid cancer too as the lead oncologist led me to think was possible? He looked back in the file and eventually found the biopsy notes and told me that it was negative.
"Not so," I corrected, "it was inconclusive - you people don't give the all clear you settle for inconclusion," or words to that effect.
I couldn't help feeling he was trying to fob me off on the basis that someone with my lung condition was on too sticky a wicket to bother about my thyroid. The fact that I'm going to beat this is probably not on his agenda.For goodness sake, the multitude of lung biopsies were "inconclusive" but that didn't put me in the clear for lung cancer! He then confirmed what I had drawn from the highly technical copy letters to my GP, that the lung cancer was only confirmed by the tissue in the lymph node.
We went on to discuss why the radiographer was so insistent that he had to scan the thyroid and why that might have been. "If there had been anything untoward visible they would have said," came the reply, "but we'll ask them to clarify." I wonder if they will. "What discipline covers the thyroid?" I ask. "ENT" That maybe explains a lot. I was with the ENT guy this time last year. He looked at my voice box and gave me the all clear referring me to the speech therapist if you recall (apologies if I'm now repeating myself). Obviously thyroid cancer wasn't on his agenda either. It was agreed that at the CT scan that I will have two weeks after this next dose there will be a specific instruction to look at the thyroid. (Wasn't that what happened last time?!)
My next consultant appointment is in three weeks time and is headed "radiotherapy". That means there's a lot more different chapters to read up on and study so that, dear readers, I can inform you as accurately as possible.
Contrary to what is written on the Macmillan-originated Pemetrexed and Cisplatin information sheet given to me by the hospital before the start of my treatment, that normally six cycles are given, I learned I am to receive four so tomorrow is the last one - whoopee! I think that's rather good news. I've just researched and found that four is the standard in the UK so why the document I have says six I don't know.
The Macmillan nurse sat during the consultation in a pose that I can only describe, reading her body language, as "embarrassed". I too would have been embarrassed if I had been asked to witness a consultant demonstrating that he had read very few of the patient's notes.
I was trying to find out what the situation was with my thyroid. "A member of his team" looked slightly puzzled by the question. He shouldn't have done - I asked him the same question last time. Do I have thyroid cancer too as the lead oncologist led me to think was possible? He looked back in the file and eventually found the biopsy notes and told me that it was negative.
"Not so," I corrected, "it was inconclusive - you people don't give the all clear you settle for inconclusion," or words to that effect.
I couldn't help feeling he was trying to fob me off on the basis that someone with my lung condition was on too sticky a wicket to bother about my thyroid. The fact that I'm going to beat this is probably not on his agenda.For goodness sake, the multitude of lung biopsies were "inconclusive" but that didn't put me in the clear for lung cancer! He then confirmed what I had drawn from the highly technical copy letters to my GP, that the lung cancer was only confirmed by the tissue in the lymph node.
We went on to discuss why the radiographer was so insistent that he had to scan the thyroid and why that might have been. "If there had been anything untoward visible they would have said," came the reply, "but we'll ask them to clarify." I wonder if they will. "What discipline covers the thyroid?" I ask. "ENT" That maybe explains a lot. I was with the ENT guy this time last year. He looked at my voice box and gave me the all clear referring me to the speech therapist if you recall (apologies if I'm now repeating myself). Obviously thyroid cancer wasn't on his agenda either. It was agreed that at the CT scan that I will have two weeks after this next dose there will be a specific instruction to look at the thyroid. (Wasn't that what happened last time?!)
My next consultant appointment is in three weeks time and is headed "radiotherapy". That means there's a lot more different chapters to read up on and study so that, dear readers, I can inform you as accurately as possible.
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