Another Thursday gone by and Karine and I made another visit to Haematology Clinic. I've had a really good week since the glitch ten days ago, weight and energy levels back to how they were. Clinic resulted in several positive changes. Some of my preventative antimicrobial prophylaxis has been reduced. I'm now only taking two antiviral tablets per day as opposed to eight.
More importantly we are going to try reducing the prednisolone (steroid) again. The steroids are causing increasing side effects especially thinning of the skin below the knees. Every time I brush against something or knock myself I get a bruise or a graze so am really pleased to be trying to reduce it. I went to the optician the other day and have very early signs of cataracts which may just be age related but are a well known steroid side effect as well. Prednisolone is one of three steroids I'm taking but it is the one causing the majority of the problems.
So, a lower dose of Pred and no clinic appointment for a fortnight - brilliant! It feels like a gradual release from the hospital. The hospital has done an incredible job of caring over the past thirteen months. It's hard to think how it could have been better - oh, apart from the hospital food (provided by a private company - does the fact that it is outsourced make a difference? - hospital food was never great when I was a junior doctor thirty-five years ago but it seems worse than ever - perhaps I'm just more fussy).
Anyway, reducing the frequency of hospital visits brings a strong sense of relief, a feeling of independence, a feeling of freedom from the hospital and from leukaemia, a return to (normal) life. Life is no longer measured out in hospital appointments in quite the way it has been since the transplant last July. Nevertheless follow up is for life and some of the medication is lifelong too, a small price to pay for having a life.
Another step along the road to normality is permission to socialise more (such as going to the cinema, using public transport etc) and a relaxation of many of the dietary restrictions, so soft boiled eggs and some soft cheeses are back on the menu. All in all a very positive visit - no more 'glitches please!'
A reminder:- the walk in September on the 17th & 18th is going ahead. Karine & I with Lucy & Mike are going to have great fun doing a recce of the whole route over the next couple of months.
*Donovan - from the album "What's been Did and What's Been Hid" - track 6
Friday 27 May 2016
Thursday 19 May 2016
D+300 - "Hand Me Down My Old Walking Stick" *
Goodness, three hundred days already - "Who Knows Where The Time Goes?" **
The last three weeks have been great, feeling really well and enjoying life more than at anytime in the past twelve months - until three days ago! I'm still nowhere near back to my pre-leukaemia state but can start to believe that whatever 'new normal' I eventually reach it will be ok, more than merely 'good enough'.
Then a reminder, as if I needed one, that the country road leading to recovery winds around and around and is prone to flooding and subsidence! My insides decided it was time for a flare up, slight temperature, headache etc etc, not a lot of fun.
Three days later and it has largely settled, Karine and I are sitting in haematology clinic and the verdict is pretty good. Platelets are slowly rising, haemoglobin is normal, ECP is to be held in reserve for the moment - phew! I am to give the steroid foam treatment a further six weeks trial to see if it will work, unless the septicaemia keeps recurring.
Karine's neck and shoulder is still playing up and this doesn't help her cope with the stress of me playing ducks and drakes in such an unpredictable fashion.
Last week we had a wonderful walk with Lucy and Mike and were treated to lunch as well. It was a beautiful sunny day and the northern end of the Derbyshire Dales looks fresh and new with the pale green of the trees that have just come into leaf and the vivid colours of the blossom everywhere - spring and autumn are both such wonderful times of year.
Dates: we decided to do the walk (see previous blog entry) over the weekend of the 17th and 18th of September. We'll sort out details about start times, transport back to Great Longstone and food etc shortly. We'll cover about 10 miles each day. There are no big hills although being Derbyshire there is some up and down. With my current level of fitness I should imagine we'll be walking pretty slowly and how much of it I'll complete is anybody's guess - to paraphrase Harold Wilson, four months is a long time in Leukaemia. The idea is for everyone to do as much or as little of the walk as they wish.
At this stage please just note the dates if you're interested in joining us. Providing the weather doesn't let us down it should be lots of fun and a glorious weekend.
* "Hand Me Down My Old Walking Stick" - Big Joe Williams - Delta Blues guitarist who played a nine string guitar and who is perhaps most famous for "Baby Please Don't Go" which has been recorded by many other musicians over the years.
**Fairport Convention - "Unhalfbricking" - track 6
The last three weeks have been great, feeling really well and enjoying life more than at anytime in the past twelve months - until three days ago! I'm still nowhere near back to my pre-leukaemia state but can start to believe that whatever 'new normal' I eventually reach it will be ok, more than merely 'good enough'.
Then a reminder, as if I needed one, that the country road leading to recovery winds around and around and is prone to flooding and subsidence! My insides decided it was time for a flare up, slight temperature, headache etc etc, not a lot of fun.
Three days later and it has largely settled, Karine and I are sitting in haematology clinic and the verdict is pretty good. Platelets are slowly rising, haemoglobin is normal, ECP is to be held in reserve for the moment - phew! I am to give the steroid foam treatment a further six weeks trial to see if it will work, unless the septicaemia keeps recurring.
Karine's neck and shoulder is still playing up and this doesn't help her cope with the stress of me playing ducks and drakes in such an unpredictable fashion.
Last week we had a wonderful walk with Lucy and Mike and were treated to lunch as well. It was a beautiful sunny day and the northern end of the Derbyshire Dales looks fresh and new with the pale green of the trees that have just come into leaf and the vivid colours of the blossom everywhere - spring and autumn are both such wonderful times of year.
Dates: we decided to do the walk (see previous blog entry) over the weekend of the 17th and 18th of September. We'll sort out details about start times, transport back to Great Longstone and food etc shortly. We'll cover about 10 miles each day. There are no big hills although being Derbyshire there is some up and down. With my current level of fitness I should imagine we'll be walking pretty slowly and how much of it I'll complete is anybody's guess - to paraphrase Harold Wilson, four months is a long time in Leukaemia. The idea is for everyone to do as much or as little of the walk as they wish.
At this stage please just note the dates if you're interested in joining us. Providing the weather doesn't let us down it should be lots of fun and a glorious weekend.
* "Hand Me Down My Old Walking Stick" - Big Joe Williams - Delta Blues guitarist who played a nine string guitar and who is perhaps most famous for "Baby Please Don't Go" which has been recorded by many other musicians over the years.
**Fairport Convention - "Unhalfbricking" - track 6
Thursday 12 May 2016
D+293 - "Good times, bad times, you know I've had my share* "
Perhaps the title of this piece should be "let the good times roll" - the last 10-14 days have been the best spell I've had since the transplant last July - the anaemia has definitely gone - the erythropoietin injections have worked a treat, I can definitely recommend them! The recurrent septicaemia is in abeyance presumably because of the change of prophylactic antibiotics and my weight has been creeping up.
The new foam treatment is easy to administer and is not causing any problems. Compared to ECP it's a doddle. It is hard to know if it is helping since I was already feeling quite a lot better before starting. It certainly isn't hindering my progress.
Karine and I had a lovely time last week. It was our 35th wedding anniversary and we managed to celebrate it properly with a meal in a bar/brasserie in Gunthorpe just outside Nottingham. This was rather different to last year when we 'celebrated' in a tiny dark isolation room in hospital - dark because of the scaffolding and plastic covering outside the window.
Unfortunately later in the week I had a birthday - just what I needed! - something to remind me that I'm getting older! The Beatles even wrote a song about this particular birthday just to rub the point in! We had a barbecue at home with friends and neighbours and the sun shone on us. During the afternoon we played petanque on the lawn and Karine managed to step backwards and end up sitting in Eden's paddling pool - which was funny at the time but the next day her neck and shoulder started playing up.
We have managed several walks recently most notably a walk around the village of Epperstone east of Nottingham.
At the beginning of this week we were taken by some good friends to Lea gardens in south Derbyshire. The garden is huge and is full of Azaleas and Rhododendrons which have just started to come into full bloom. We then walked down the hillside through some lovely bluebell woods into the Derwent valley and finished off having a pub lunch - perfect.
Today we are off up to Derbyshire to meet my sister (and donor!) and brother-in-law, Mike, to do a walk from a little village called Sheldon back to Great Longstone. This is part of a circular twenty mile walk which starts at Longstone and heads down through Chatsworth to Rowsley and Birchover and then back north again past Robin Hood's Stride and to the west of Bakewell to Sheldon and Longstone. Lucy and Mike are proposing that we do this as a two day walk over a weekend in mid-September which would allow other people to dip in and out as they wished. More details of that anon.
* Led Zeppelin - The opening line of the first track on their first album
The new foam treatment is easy to administer and is not causing any problems. Compared to ECP it's a doddle. It is hard to know if it is helping since I was already feeling quite a lot better before starting. It certainly isn't hindering my progress.
Karine and I had a lovely time last week. It was our 35th wedding anniversary and we managed to celebrate it properly with a meal in a bar/brasserie in Gunthorpe just outside Nottingham. This was rather different to last year when we 'celebrated' in a tiny dark isolation room in hospital - dark because of the scaffolding and plastic covering outside the window.
Unfortunately later in the week I had a birthday - just what I needed! - something to remind me that I'm getting older! The Beatles even wrote a song about this particular birthday just to rub the point in! We had a barbecue at home with friends and neighbours and the sun shone on us. During the afternoon we played petanque on the lawn and Karine managed to step backwards and end up sitting in Eden's paddling pool - which was funny at the time but the next day her neck and shoulder started playing up.
We have managed several walks recently most notably a walk around the village of Epperstone east of Nottingham.
At the beginning of this week we were taken by some good friends to Lea gardens in south Derbyshire. The garden is huge and is full of Azaleas and Rhododendrons which have just started to come into full bloom. We then walked down the hillside through some lovely bluebell woods into the Derwent valley and finished off having a pub lunch - perfect.
Today we are off up to Derbyshire to meet my sister (and donor!) and brother-in-law, Mike, to do a walk from a little village called Sheldon back to Great Longstone. This is part of a circular twenty mile walk which starts at Longstone and heads down through Chatsworth to Rowsley and Birchover and then back north again past Robin Hood's Stride and to the west of Bakewell to Sheldon and Longstone. Lucy and Mike are proposing that we do this as a two day walk over a weekend in mid-September which would allow other people to dip in and out as they wished. More details of that anon.
* Led Zeppelin - The opening line of the first track on their first album
Tuesday 3 May 2016
D+285 - "The Reluctant Fundamentalist* "
Another change of plan! - Had a telephone call today from haematology. They've had a confab and decided that the sigmoidoscopy showed a better than expected result so the ECP is off the agenda - at least for the moment. Great news as it means no central line and no having to hide from the sun for three days a week.
However, there is a catch! They want me to have a steroid foam treatment up the fundament every evening (for a month to begin with), self administered at home of course - nice! I think that's enough details of what that treatment entails.
* The Reluctant Fundamentalist - a novel by Mohsin Hamid
However, there is a catch! They want me to have a steroid foam treatment up the fundament every evening (for a month to begin with), self administered at home of course - nice! I think that's enough details of what that treatment entails.
* The Reluctant Fundamentalist - a novel by Mohsin Hamid
Monday 2 May 2016
D+284 - "Home again, home again, jiggety jog"
Help, I'm being attacked by my sister!!
To be more precise, I'm being attacked by her T lymphocytes - (they are produced in the bone marrow and then processed in a little gland called the thymus, hence "T cells").
Karine collected me from the ward on Tuesday 26th after 5 days as an inpatient. In clinic on Thursday it was decided I should have a baseline sigmoidoscopy prior to starting ECP in a week or two. This was arranged extraordinarily quickly and took place the following day - a wonderful experience - please leave your dignity at the door and collect what is left of it on the way out! This time the GvHD was described as mild and mainly in the lower end of the bowel so better than six months ago when it was much more florid.
Karine is finding it tough with the uncertainty of it all, having me in and out of hospital, being unable to go anywhere, the absence of warmth and sunshine and finding herself alone at home. We are hoping to have a week's break in Norfolk in the school summer holidays with our granddaughter Eden. Not exactly an exotic holiday but the change of scene and some sea air will do us good.
Next week it is two visits to haematology for routine follow up and also to see if I need platelets before a visit to X-ray for insertion of a central line (into the jugular vein)! After that I'm all set to start ECP - the photopheresis treatment to try and sort out my T cell problem and the GvHD it causes.
Two of the people attending the weekly rehab sessions have had ECP and found it very helpful although not completely curative so I'm hopeful that it will be worth the trouble.
* Nursery Rhyme - First recorded in the sixteenth century
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