Woke up quite late to a sunny cloudless sky - quite a change for New Year's Day. I had my anti-sickness tablet in the hope of avoiding nausea when I took the handful of pick and mix morning tablets. It worked!
When I showered and washed my hair, I once again thought back to my admission to hospital, thinking it would be a long time before I would need shampoo again. Now I would have to make an appointment to have another haircut!
I set about doing a bit of dusting and cleaning and beginning to put away the things that had been brought back from hospital and felt the usual sense of achievement you get when work produces a visible impovement.
A couple of Happy New Year phonecalls then we felt we couldn't ignore the beautiful weather and so set out for a coastal walk. Assuming that all cafes would be closed I made up some hot chocolate, packed some Christmas cake and some fruit and headed out. We could not believe the number of people at our chosen destination - there must have been several hundred people within a 500m radius of the cafe which was open.
We headed off for a quieter stretch of coast and I nipped out to the boot to get the hot chocolate etc only to find that I must have left the basket in the kitchen at home! And of course there was no cafe in sight.
After helping out with a family who had a puncture and problems removing the wheelnuts, we set off uphill. I fairly quickly realised that I wasn't quite back to full fitness but I did pretty well and the wonderful views gave me a good excuse to stop and look around. After half an hour we headed back to the car and headed home where we drank the hot chocolate and lit the fire. I cooked the ham I'd prepared earlier and after the meal we settled down to a bit more television viewing. I updated the blog and realised that now that daily changes were less likely, I could probably reduce the blog posts to two per week, especially now that I have more to do with my time!
Jan 2nd – Jan7th DAYS 30/35
Son number 1 and his wife along with son number 2 and his girlfriend were coming for the day on Saturday. For a short time the whole family would be together. However son number 2’s girlfriend had now caught the cold he had got rid of which meant she could not come into the house. I chatted briefly to her across the road and then she went into town to shop. It felt dreadful to see her excluded and I had suggested that perhaps we could both wear masks. However she has inside knowledge in the spread of diseases as that is her area of study and she said that would not be a good enough barrier.
Once the decision was made I set to a bit of home cooking – a real pleasure after my restricted diet in hospital. Some other friends arrived with their new baby and later on we played the usual Christmas board games so went some way to make up for Christmas Day.
The next day we went into town avoiding crowded areas to buy a few things we needed. Afterwards we went for a walk beside the harbour and up on to the cliffs above the sea. The wind was from the north east and was bitterly cold but it was still good to be out watching the waves.
January 4th DAY32
An early start for our first outpatients appointment at Hospital S Thankfully the traffic was free flowing and we arrived with a few minutes to spare. However we waited for an hour past the appointment time before a nurse approached us about taking blood. She would have to find a vacant room and then the bloods would be sent off to the lab. In the end I had my appointment with the consultant before the bloods came back. It was now nearly 2 hrs after the appointment time!
Although everything seemed to be fine with me physically, I did get a ticking off about going into a supermarket – Nick was told that shopping was his responsibility! And there were more restrictions. I had thought that now my neutrophils were rising towards a normal level that I could ease back into a normal life. However I was told that neutrophils were only part of the story and that my immune system would be vulnerable for some time to come. I would have to maintain a neutropenic diet although I was no longer technically neutropenic. There was to be absolutely no contact with anyone with a cold, cough, headache etc as I would be straight back into hospital if I contracted a cold. I was not allowed in crowded places and to be very mindful of touching handles and handrails when I was out. Some exercise was allowed – it’s a pity it was too cold yet to do much outside other than walk. I was still not allowed to drive yet but short trips may be possible soon. Certainly when we left I still felt as though I must continue to see myself as being in quarantine.
There were to be minor adjustments to my medication which meant a visit to the pharmacy. There was a further 45minute minimum wait so we went off for coffee and a bite to eat. By the time we left the hospital it was 4 hrs since we had arrived. Perhaps next time the system could be streamlined a bit.
The next morning I found that there was a message on the answer phone to say I needed to phone the hospital urgently as my cyclosporin level was rather too high and so the dose had to be reduced. I was told that this communication by telephone might also happen in the future as some of the blood results take a while to come through and adjustments might need to be made
On the 6th January I received another call from Hospital S to say that due to the very poor road conditions around S, they would see if, instead, I could go to my local hospital for my Thursday check-up on the 7th. Not only that but a further blood test had come back showing a higher than acceptable reading for EBV - Epstein Barr Virus which can cause glandular fever and at its most extreme, cancer. It can also be present without showing any major symptoms.
This new development meant that I would need 4 weekly treatments of an antibody called rituximab. Thankfully these treatments could be administered at my local hospital.
January 8th DAY36 – Jan13th DAY 41
Jan 9th Had an outing to Lyme Regis to swap a Christmas present. Lyme is always beautiful at any time of the year and a pleasure to visit. We had lunch out and a wander around the town which was fairly empty because of the low temperature. The intention was to have a walk along the esplanade but a combination of parking time running out and the cold meant that we merely drove along the esplanade and looked out at the Cobb from the car then headed home with the sun setting over the sea.
The next day we did a few minor chores around the house and had a bacon sandwich. I still don’t quite understand how or why the nausea appears in the morning. Whether it is to do with the mix of tablets I have to take I’m not sure but it always seems to improve if I have something to eat. This is probably a good thing as I don’t tend to have much of an appetite in the morning and would otherwise quite happily go on until lunchtime.
We set off before lunch for a 3 mile walk along the cliffs. This time I did remember to take the hot chocolate with me! The wind was from the north east and I was absolutely frozen. I had been out in the garden before we left and was not cold at all, prising the poor terrapin from his ice filled pond to relocate him to the shed. However once we got on top of the cliffs the wind was positively Arctic. By the time we reached our destination the hot chocolate was very welcome. I’m not sure whether I felt the cold more because of my condition but was very glad to get back home and into a hot bath.
Monday 11th started early with a trip to Hospital S though I have to say that the one and a half hours seems to shrink the more often the journey is travelled. It was slightly annoying to find that we arrived on time but had to wait for an hour and a quarter before we were seen. It seems strange that I am not allowed to go into a supermarket but that I’m expected to sit in a busy waiting room for over an hour! Anyway, eventually we were in and the bloods taken. I had the usual checks, heart and lungs sounded, abdomen palpated, ankles checked for oedema, asked about rashes and skin on hands checked for any signs of problems. All was fine with the only problem being the continuing diarrhoea which was just to be monitored. The consultant looked in and said that one of the antifungal medicines posaconazole could be stopped (Woop! Woop! – nasty tasting liquid) and the cyclosporin adjusted because of this.
My blood levels were HB 10.4 WBC 2.6 Neut 1.7 Platelets 167.
Further details regarding my quarantine were given out – no vacuuming, no dusting, no turning over earth (in this weather – you must be joking!) as well as a reiteration of the restrictions regarding public transport, supermarkets etc There was a slight indication that it might not be too long before we were down to one trip to Hosp S per week which was good news. I asked about the Epstein-Barr virus reading and it turned out that it was only just above the acceptable limit and that even the first treatment I had had at Hosp D would probably have decreased the level. This trip to the hospital lasted just over 2 hours so an improvement on last week.
Made an appointment for a hair cut - didn't think I'd be doing that at this time!
Jan 14th DAY 42 – Jan 18th DAY 46
Just as well the appointment times are flexible as the trip took us 2 ½ hours instead of the usual 1 ½ hours, mainly due to traffic delays just after setting off from home – an hour to go 10 miles. This appointment to see the same group of docs and specialist nurses was at a different hospital but in the same city as Hospital S due, I think, to lack of space at Hospital S on a Thursday However the hospital was easy to find and eventually we managed to find a parking space in a still very icy car park.
I had my bloods taken and the levels showed platelets at an amazing 212! – well within the normal adult range of 140 – 450. Neutrophils were 2.6, also within the normal range of 1.5 – 8.0 and haemoglobin was 10.7 so just below the normal range of 11.8 – 14.8 so all in all showing very good improvement.
During the routine examination it was discovered that I had a rash on my torso so was prescribed some Betnovate cream and Hydrocortisone cream to be used instead, should the rash appear above my neck line. We got these items from Pharmacy on the way out and paid £14.40 for them. I had applied for a medical exemption certificate but this had not yet come through. This is a grey area regarding a Bone Marrow Transplant for Aplastic Anaemia but I qualify because I have received a cancer treatment though of course the condition is not cancerous. I was told that when the certificate arrived I could have the cost of the prescription refunded as long as the certificate covered 14th Jan. The certificate actually arrived a couple of days later with the rather random starting date of 11th Dec 2009. (The application had actually been sent off around the 27th Dec 2009.) As it turned out, the rash had disappeared before we got home so the creams remain unused.
It was lunch time by the time we had finished and I suggested having something to eat at the hospital cafeteria but was not allowed to. My driver (a friend who had worked in laboratories dealing with bacteria) said it was too high a risk. It is definitely difficult to be so mindful of restrictions like this when I feel perfectly well.
The weekend passed very pleasantly with number 1 son and daughter-in-law coming to visit. On the Sunday we went out for a walk and I felt absolutely fine. I am itching to get out on my bike which will be a better test of stamina.
Jan 18th
Apart from the long drive, a much more efficient turnaround at the hospital – in and out in 45 mins meant that we were back home at the start of the afternoon. Everything was very satisfactory (slight improvement in bowel function) though the blood results had not come back before we left. Any changes which needed to be made to the cyclosporin dose would be phoned home if necessary.
An appointment for a nebuliser was made for 21st Jan after my check-up. Somewhere along the way I had missed out on the session I should have had before discharge. As far as I can make out it involves sitting in a cupboard breathing in antibiotics which will protect my lungs. Should be a novel experience!
Jan 19th DAY47 – Jan26th DAY54
I had a bit of a shock this week when I heard from my AAT (Aplastic Anaemia Trust) friend.
The AAT prints a contact list where people who are happy to be contacted by other AA sufferers write a paragraph about themselves giving details of age and severity of their condition. It is very useful because AA is such a rare condition (3 in a million of the population) that it is unlikely that you will by chance meet a fellow sufferer. When I wrote my paragraph I was contacted by J because she had, 2 years in advance of me, had the same treatments ie ATG (animal serum) which had been unsuccessful and subsequently a BMT. We are also around the same age. We have been e-mailing each other with advice and queries for some months now.
There are a couple of booklets available from the AAT on the treatments for AA outlining procedures and likely side effects but they give little idea of how it FEELS to be going through the process.
I had asked J how well she had been at the time of her discharge and how well she felt in the weeks afterwards. At this point I had nothing to compare my experience with and assumed that I was reasonably typical though I was aware that all the health professionals I came in contact with kept telling me how well I was doing.
J’s e-mail really took me aback. Her blood levels at time of discharge were very low with platelets at 15 and neutrophils at 0.2 I was amazed she was allowed home! She felt very weak and needed a handrail fitted to help her climb the stairs. She also had constant sickness and diarrhoea. Over the next 4 months she suffered viruses and infections with unpleasant and painful treatments which left her weaker than before. During this period she also had to be readmitted to hospital. It took 6 months for her platelets to reach 50 and now – 2 years on - her platelet count is still only 120. (My platelet count is over 200)
It just shows how different each person’s experience of the disease can be and how reactions vary. Having read J’s account I now feel extremely lucky that I have got off so lightly and I have a greater understanding of why the consultants think long and hard about subjecting patients to a BMT. I had a bit of a shock this week when I heard from my AAT (Aplastic Anaemia Trust) friend.
The AAT prints a contact list where people who are happy to be contacted by other AA sufferers write a paragraph about themselves giving details of age and severity of their condition. It is very useful because AA is such a rare condition (3 in a million of the population) that it is unlikely that you will by chance meet a fellow sufferer. When I wrote my paragraph I was contacted by J because she had, 2 years in advance of me, had the same treatments ie ATG (animal serum) which had been unsuccessful and subsequently a BMT.We are also around the same age. We have been e-mailing each other with advice and queries for some months now.
There are a couple of booklets available from the AAT on the treatments for AA outlining procedures and likely side effects but they give little idea of how it FEELS to be going through the process.
I had asked J how well she had been at the time of her discharge and how well she felt in the weeks afterwards. At this point I had nothing to compare my experience with and assumed that I was reasonably typical though I was aware that all the health professionals I came in contact with kept telling me how well I was doing.
J’s e-mail really took me aback. Her blood levels at time of discharge were very low with platelets at 15 and neutrophils at 0.2 I was amazed she was allowed home! She felt very weak and needed a handrail fitted to help her climb the stairs. She also had constant sickness and diarrheoa. Over the next 4 months she suffered viruses and infections with unpleasant and painful treatments which left her weaker than before. During this period she also had to be readmitted to hospital. It took 6 months for her platelets to reach 50 and now – 2 years on - her platelet count is still only 120. (My platelet count has been over 200 and is now around 180).
It just shows how different each person’s experience of the disease can be and how reactions vary. Having read J’s account I now feel extremely lucky that I have got off so lightly and I have a greater understanding of why the consultants think long and hard about subjecting patients to a BMT.
Jan 21 Hospital visit went well in that the examination showed no problems and the blood results were good with haemoglobin 10.6 and platelets 190. We arrived in good time but somehow my notes drifted to the bottom of the pile so that I was last to be seen, finishing around 12.20pm. This meant there wasn’t a huge amount of time to jump in the car and nip across to the hospital where I was to have my session with the nebulizer in the cupboard, scheduled for 1pm. But all was fine as that department had the same relaxed approach to appointment times. Only one person can use the nebulizer, morning or afternoon so there was no hurry. I assume this restricted use is because otherwisethere would be a build-up of the antibiotic (pentamidine) in the small space. It is given prophylactically to prevent pneumocystis pneumonia. It must be strong magic because once the nebulizer is going the nurses are not allowed to come in.
The “cupboard” turned out to be a sizeable room probably about 2 ½ m x 1 ½m with a window in the door so not at all scary. An arrangement of tubing, mouthpiece etc was fitted together and the medication introduced into it. You know that it is working by checking whether vapour issues from the mouthpiece, which is a rigid rectangular piece of plastic about 3cm x 2cm, not particularly suited to the average mouth shape or not mine anyway! Next time I shall use a paper towel as a bib as I seemed to dribble all the time. It took about twenty minutes, more awkward than unpleasant – it is quite difficult to read while using it because part of the book is always obscured by the tubing.
Later on that evening I got a phone call to let me know to alter my cyclosporine dose. (The cyclosporine levels take longer to come back from the lab so are not available before leaving the hospital.) Cyclosporin works to prevent graft versus host disease but at the same time is an immunosuppressant which means that the body is more vulnerable to infection.
The next day saw me back at hospital D having the third dose of retuximab to counter the Epstein-Barr virus which had been reactivated three weeks previously. Although it was now showing as negative the course had to be completed – no problem really as it involves having the antibody through my line while reading and relaxing on the reclining chair, perhaps dozing a little with the effects of the pre-med (piriton) while the staff bring me hot drinks and sandwiches. There are worse ways of spending a Friday morning!
I spent Saturday (Jan23rd) wandering around an antiques market with a friend – (avoiding very dusty places and people with colds obviously) and bought all manner of unmissable bargains from a couple of easels to a large copper container which I will use for plants in the garden.
The next day was sunny with a cold breeze but sufficiently enticing to make me want to get out on the bike. So, after a few chores Nick and I set out on a level bike ride, down to the sea, along the esplanade and round the harbour and bird reserve. We worked out it was probably about 6 miles in total. I didn’t have any problem on the flat and managed the gentle rises fairly easily. I will have to make the next trip out a little more challenging so that I can find my level. Apart from when I was on the exercise cycle in the hospital it is a long time since I was on a bike and fully expected to feel stiff next day. However I felt absolutely fine.
Jan 25th Birthday of Robert Burns. Usually we host a Burns Night on the Saturday nearest Burns’ birthday with up to 22 people feasting on cock-a-leekie soup, haggis etc and reciting verse in Scots dialect or singing Burns’ songs. I do think we could have done it this year too but the invitations go out around the 5th of January and I wasn’t sure at that time how I would be feeling now so Burns may have to have his birthday shifted to a little later in the year.
Jan 26th
Went to hospital S for the usual check up. Everything was fine though my neutrophil count had dropped a little to 1.2. I had a bit of a chat with the doc with reference to holidays. Nick and I were hoping to go to the Scilly Isles in May or June. The doc asked if it would be just a cottage holiday but I said we intended to take the kayaks and do a fair bit of paddling. He said that he didn’t think I’d be up to kayaking by then. (I didn’t tell him that I feel up to kayaking now if the weather - and the sea – were a bit warmer.) I also asked whether, for reasons of insurance, I still had aplastic anaemia and he said that he didn’t think I would get an insurance to cover me as it would be only 6 mths down the line from a bone marrow transplant. He suggested a holiday on the British mainland for this year. I thought it wise not to ask him just yet about trying a spot of rock climbing once the weather heated up a bit.
All this was a little disappointing but the doc did put it into perspective when he explained that there was still significant risk from infections particularly virus infections and that graft versus host disease was still very much a threat – that these were still early days – the stem cells were transfused in the hospital but the really tricky stuff was happening now under an outward appearance of wellbeing. The donor’s immune system merging with mine could still throw up some problems. He said that being able to say I was cured was a long way off yet and that it was possible for the graft to fail up to a year post transplant even though there had been initial success
Already knowing the answer, I asked if there was any let up in the restrictions but no – I still need to keep to a neutropenic diet i.e. no shellfish, pate, soft cheeses, unpeeled fruit etc and still no cinema, supermarket, dusting, vacuuming etc – well I suppose it’s not all bad!
January 27th DAY 55 – January 31st DAY 59
The weather was too poor to be outside much and I was not allowed to mingle at close quarters with the general public but my energy levels were fine so I set about doing a few of those outstanding chores around the house. Unfortunately most of those involved stirring up a bit of dust. However I began to sort out the numerous boxes and tea chests stored in our loft room. This was probably not on the hospital’s list of suitable tasks but I did wear a mask when it became too dusty. My thinking was that if I tidied up the loft then I would have earned myself the right to indulge in some watercolour painting. There was quite a bit of heavy lifting – moving boxes of books etc but I managed fairly well with only an hour or so of being sidetracked by old photographs – lucky we didn’t run into the fashion police back in the eighties!
I had my last dose of retuximab (for the Epstein – Barr virus problem) at my local hospital and also had a blood test at the same time just to keep an eye on the drop in neutrophils. Everything was fine and the good news was that i only had to attend Hospital S once a week.
I spent the weekend without Nick as it was his brother’s 60th birthday and he flew off to Ireland for the party. I of course could neither go in an aeroplane with the proximity to other people and the risks from recycled air nor attend a social gathering where other guests might have colds.
Instead I went out with a friend on the Saturday to Dartmoor – a journey of around 2 hours. I did the driving so that I could gauge how I would cope with a similar length of journey to Hospital S in the future. There was no problem and we had a good day out with a walk on the moor – there was even a fine covering of snow – a visit to a specialist yarn shop and a visit to an Art Gallery.The reason for the yarn shop visit was to choose wool and a pattern for a knitting project. I think the last time I knitted something significant was when the boys were very small. Usually of course in my other life I was busy most nights of the week with schoolwork, the gym, climbing etc and didn’t have time for knitting. I eventually got home about 8 o’clock in the evening and was glad to relax but certainly wasn’t exhausted.
The Sunday was a continuation of the loft work – still hadn’t got round to painting – I went out in the afternoon to the tip with all the rubbish I had collected and as the weather was bright, set out on a level bike ride of about 6 miles. Next time I’m going to try some small hills even if it does mean I have to get off and push.
