Thanks for all the kind wishes - you'll all be pleased to know that I am feeling MUCH better, if not totally 100% yet. I had a lovely restful day at home yesterday and also a restful morning before heading into Addenbrookes for blood tests. The blood lab was apparently in turmoil today so we waited longer than usual for the results to appear on the ward, but that gave me a chance to have a happy hour's snooze.
My results were all good so I was released with no further treatment - back on Friday for the next lot.
One of the lovely things about yesterday was getting around to arranging a few social engagements: a friend coming for coffee and a chat tomorrow, relatives here for lunch on Saturday, a coffee invitation from other friends on Sunday afternoon and friends coming to lunch on Monday. Although it is important not to overdo things (and just at the moment I think large gatherings are probably not a good move in case I pick up yet another bug) it is very easy for me and more importantly for Andrew to miss out on sufficient social contact. So thanks to those who are coming and who have invited us!
Wednesday, 27 January 2016
Monday, 25 January 2016
Monday 25 January - well, where did that week go?
Sadly I have spent since Wednesday last week (20 Jan) incarcerated in a side room on ward D9 in Addenbrookes while my temperature yo-yo'd up and down between 38.5 and 35.7. They have done loads of tests, taken innumerable blood samples but the only thing they could find was the rhino virus (common cold). Anyway my temperature has been stable for over 24 hours now so they have let me out.
Actually for the first 4 days I was quite happy to be left alone to gaze out of the window at the cranes, sleep and re-read all of Harry Potter, it's only today that I felt the first twitches of boredom.
Thanks very much to the excellent staff on D9 who looked after me.
Actually for the first 4 days I was quite happy to be left alone to gaze out of the window at the cranes, sleep and re-read all of Harry Potter, it's only today that I felt the first twitches of boredom.
Thanks very much to the excellent staff on D9 who looked after me.
Monday, 18 January 2016
Monday 18 January 2016 - a tale of two rashes
I went to the hospital this morning for my blood tests. After the nurse had taken my blood I mentioned that I had a small rash and wondered if it was caused by low platelet count (can cause bruising and petechia - little red dots on the skin). The doctor came and had a look at it and after consulting with a dermatology colleague decided it was a side-effect of the last lot of chemo and prescribed some steroid cream. Job done I thought.
When my blood results came back the doctor decided to order some platelets for me because my anti-thrombin levels were low (she also gave me Kybernin). About 10 minutes after the platelet infusion started I had an itchy shoulder and then an itchy stomach. I alerted the staff, they stopped the platelets and gave me intravenous hydrocortisone and piriton. By then, 10 minutes after the itching had started, the rash was spreading really quickly - stomach, back, forearms, thighs and _so_ itchy that I had to sit on my hands to stop myself scratching. It is apparently a form of hives that you can get as a reaction to blood products - I shall always be very sympathetic in future to people who have hives!
The rash took about 2 hours to go away during which time I had had a couple of piriton-induced sleeps! And, having arrived at hospital at 09:30 I finally escaped at just before 5pm. So much for Monday. I thought it was ironic that I had been concerned about the small rash (which is still present) and then got a reaction that produced a rash 10 times as bad!
When my blood results came back the doctor decided to order some platelets for me because my anti-thrombin levels were low (she also gave me Kybernin). About 10 minutes after the platelet infusion started I had an itchy shoulder and then an itchy stomach. I alerted the staff, they stopped the platelets and gave me intravenous hydrocortisone and piriton. By then, 10 minutes after the itching had started, the rash was spreading really quickly - stomach, back, forearms, thighs and _so_ itchy that I had to sit on my hands to stop myself scratching. It is apparently a form of hives that you can get as a reaction to blood products - I shall always be very sympathetic in future to people who have hives!
The rash took about 2 hours to go away during which time I had had a couple of piriton-induced sleeps! And, having arrived at hospital at 09:30 I finally escaped at just before 5pm. So much for Monday. I thought it was ironic that I had been concerned about the small rash (which is still present) and then got a reaction that produced a rash 10 times as bad!
Thursday, 14 January 2016
Thursday 14 January - hair now tidy
Much to Andrew's pleasure I went to visit my lovely hairdresser Owen this afternoon. He has tidied up my hair (which was honestly starting to look as though someone had dropped a pink toupee on top of my head) which is now quite a lot shorter but decidedly less pink. Owen says it has hardly grown at all since August. However, he reassures me that it should recover in due course. I'll get Andrew to take a picture so that you can all see the improvement.
I was obviously far too keen in my post on Monday. For the past two days I have been feeling relentlessly queasy and today in particular I have begun to feel the cold even when the temperature is quite reasonable. One of the helpful nurses on E10 explained that the nadir (low point I believe) usually comes 7-10 days after treatment, so I have probably got another few days of this before I start to feel better.
However, since my neutrophil count was over 7 yesterday I didn't let the queasiness stand in my way and enjoyed a piece of the Christmas stilton that I have been looking forward to since December 20th. It was a piece of Cropwell Bishop stilton for the cheese lovers among you and it was delicious! There is a small piece left that I put in the freezer which we might get out for the weekend depending on my blood results tomorrow.
I was obviously far too keen in my post on Monday. For the past two days I have been feeling relentlessly queasy and today in particular I have begun to feel the cold even when the temperature is quite reasonable. One of the helpful nurses on E10 explained that the nadir (low point I believe) usually comes 7-10 days after treatment, so I have probably got another few days of this before I start to feel better.
However, since my neutrophil count was over 7 yesterday I didn't let the queasiness stand in my way and enjoyed a piece of the Christmas stilton that I have been looking forward to since December 20th. It was a piece of Cropwell Bishop stilton for the cheese lovers among you and it was delicious! There is a small piece left that I put in the freezer which we might get out for the weekend depending on my blood results tomorrow.
Monday, 11 January 2016
Monday 11 January - another lot of chemo over
Right - that has seen off Consolidation 1, 6 days straight of chemo including the intrathecal last Wednesday. Unless the side effects are about to make themselves known afterwards, the two drugs I have had this time don't seem to have affected me too badly. I am just weary. I now get 3 weeks off while we wait for all my blood counts to recover before the next lot, which is a repeat of this one.
Of course 'off' doesn't mean no hospital, it just means only visits for blood tests 3 times a week. At least at the moment I am fit enough to drive myself which makes life a lot easier.
So it is time to pay a little attention to things at home - making up the beds again after Christmas, possibly even doing a little housework and getting on with one of my larger sewing projects. Having completed the two little jobs I had to do, I have sorted out the materials and can make a start on Project 1.
Oh, the other essential activity is to have a haircut! Since I still have surprising quantities of hair (though it is barely growing and has gone rather thin) and it is still quite pink, I need to go and see my lovely hairdresser for a tidy-up.
Of course 'off' doesn't mean no hospital, it just means only visits for blood tests 3 times a week. At least at the moment I am fit enough to drive myself which makes life a lot easier.
So it is time to pay a little attention to things at home - making up the beds again after Christmas, possibly even doing a little housework and getting on with one of my larger sewing projects. Having completed the two little jobs I had to do, I have sorted out the materials and can make a start on Project 1.
Oh, the other essential activity is to have a haircut! Since I still have surprising quantities of hair (though it is barely growing and has gone rather thin) and it is still quite pink, I need to go and see my lovely hairdresser for a tidy-up.
Wednesday, 6 January 2016
Wednesday 6 January - a painfree intrathecal (chemo via lumbar puncture!
A fairly regular part of my chemo regime is intrathecal methotrexate - this is administered via lumbar puncture directly into the spinal fluid intended to protect me from the leukaemia crossing the blood/brain barrier. Before they put the chemo in they take out 6 or 7 drops of spinal fluid to test for the presence of 'bad' cells.
Intrathecals can be painful, especially if the needle catches a nerve, which has happened a couple of times (to be fair, the doctor is acting on feel alone). The last intrathecal I had was a bit of a nightmare. One doctor had 5 attempts at getting the needle in and kept hitting the bone and so called a colleague to get the needle in (first time). My back is still sore from that and that was the end of October.
So I was not really looking forward to today's intrathecal. But it was painfree! Gold star to the doctor who did it. The site is a bit sore now the local anaesthetic has worn off, but that will soon wear off.
Yesterday I saw the consultant - still pleased with my progress - and started Consolidation 1. This is 5 days of chemo and an intrathecal starting yesterday and running to Sunday. So far no ill effects other than the usual 'sandbagged' feeling that the Cytarabin gives me - I slept for 40 minutes on the ward yesterday which they were giving me the other drug. I just couldn't keep my eyes open!
In other news, we have sadly now taken down and packed away all the Christmas decorations, lights etc. I hate doing this, but I also look forward to seeing all these favourite things again at the other end of the year.
Intrathecals can be painful, especially if the needle catches a nerve, which has happened a couple of times (to be fair, the doctor is acting on feel alone). The last intrathecal I had was a bit of a nightmare. One doctor had 5 attempts at getting the needle in and kept hitting the bone and so called a colleague to get the needle in (first time). My back is still sore from that and that was the end of October.
So I was not really looking forward to today's intrathecal. But it was painfree! Gold star to the doctor who did it. The site is a bit sore now the local anaesthetic has worn off, but that will soon wear off.
Yesterday I saw the consultant - still pleased with my progress - and started Consolidation 1. This is 5 days of chemo and an intrathecal starting yesterday and running to Sunday. So far no ill effects other than the usual 'sandbagged' feeling that the Cytarabin gives me - I slept for 40 minutes on the ward yesterday which they were giving me the other drug. I just couldn't keep my eyes open!
In other news, we have sadly now taken down and packed away all the Christmas decorations, lights etc. I hate doing this, but I also look forward to seeing all these favourite things again at the other end of the year.
Monday, 4 January 2016
Monday 4 January - sleep...
I don't sleep very well since being diagnosed with leukaemia. Actually the truth is more that I don't sleep for very long. I fall asleep quite easily, but wake up frequently (since the two December treatments with methotrexate usually to use the bathroom) and so now rarely sleep for longer than 3.5 hours at a stretch and often only 2 - 3 hours. I also frequently wake at around 6am and lie awake wondering whether I should get up, since I can't easily fall asleep again in the morning much as I would love to.
The power of sleep is much underestimated. When I came home from hospital just before Christmas I was exhausted. But after a few days' even patchy sleep in my own bed I felt much more human and able to cope with the other residual side-effects.
I realise now that I didn't appreciate enough the ability to sleep for a rejuvenating 6 or 7 hours while I could do it. So, if you are still able to enjoy a long period of sleep, enjoy it!
I'm wondering what the side-effects of the new drug I am having tomorrow will be...
The power of sleep is much underestimated. When I came home from hospital just before Christmas I was exhausted. But after a few days' even patchy sleep in my own bed I felt much more human and able to cope with the other residual side-effects.
I realise now that I didn't appreciate enough the ability to sleep for a rejuvenating 6 or 7 hours while I could do it. So, if you are still able to enjoy a long period of sleep, enjoy it!
I'm wondering what the side-effects of the new drug I am having tomorrow will be...
Saturday, 2 January 2016
Saturday 2 January - Happy New Year!
Happy New Year to you all and best wishes for 2016!
We had a very quiet New Year's Eve with two of the party retiring to bed at 10:30pm and the other 3 of us lasting until just after midnight. A real pleasure on New Year's Day was listening to the bells being rung in the church - not too early of course. Here in the village they ring on the morning rather than at midnight on New Year's Eve. Our friends departed after lunch yesterday and left us pottering around. In fact both Andrew and I had an hour's nap in the afternoon - sleep simply overcame us!
I have not made any specific New Year's resolutions (in past years they have always revolved around tidying up or losing weight, both of which now seem a little trite) but I do have some small things that I would like to achieve. I'll share them with you - in no particular order - so that I can give an update through the spring!
1. Continue with my treatment in a positive frame of mind and gradually work on my fitness
2. As I feel well enough make time to see friends and family
3. Do some sewing. I have a couple of large ambitious projects in the back of my mind but also a host of little jobs that I could easily fit in and won't exhaust me
4. Continue recording Gladys' memories of her life. We really enjoyed what we heard over Christmas so I need to keep this up so that we have a record both for posterity and to help us when we start on researching that side of Andrew's family
5. Organise things as far as possible so that Andrew has time to pursue the retirement activities that have been on hold since July last year
If I manage all that lot in any measure I shall feel well pleased!
In the short term I am looking forward to a quiet weekend before the chemo onslaught next week.
We had a very quiet New Year's Eve with two of the party retiring to bed at 10:30pm and the other 3 of us lasting until just after midnight. A real pleasure on New Year's Day was listening to the bells being rung in the church - not too early of course. Here in the village they ring on the morning rather than at midnight on New Year's Eve. Our friends departed after lunch yesterday and left us pottering around. In fact both Andrew and I had an hour's nap in the afternoon - sleep simply overcame us!
I have not made any specific New Year's resolutions (in past years they have always revolved around tidying up or losing weight, both of which now seem a little trite) but I do have some small things that I would like to achieve. I'll share them with you - in no particular order - so that I can give an update through the spring!
1. Continue with my treatment in a positive frame of mind and gradually work on my fitness
2. As I feel well enough make time to see friends and family
3. Do some sewing. I have a couple of large ambitious projects in the back of my mind but also a host of little jobs that I could easily fit in and won't exhaust me
4. Continue recording Gladys' memories of her life. We really enjoyed what we heard over Christmas so I need to keep this up so that we have a record both for posterity and to help us when we start on researching that side of Andrew's family
5. Organise things as far as possible so that Andrew has time to pursue the retirement activities that have been on hold since July last year
If I manage all that lot in any measure I shall feel well pleased!
In the short term I am looking forward to a quiet weekend before the chemo onslaught next week.
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