November 2009

4th Nov:With less than a week to go I decide that since I now have a good number of paintings completed that I will invite friends round for a bit of a social evening - a last get together before admission - and at the same time I can quiz them about which paintings work best and which least. This will be useful information and will give guidance on where I should go from here. The evening turns out to be a great success with lots of people recognising others whom they did not expect to be there. An unexpected spin off is that I actually sell 11 paintings!

5th Nov : Woke up very thirsty with a bad headache, pain across my sinuses and aching joints. Perhaps I overdid it last night. As advised by the hospital I took my temperature and found it to be 36.9 My intention was to go to yoga so I got washed and dressed but then began to shake uncontrollably. I took my temperature again . This time it was 37.8 . The advice if the temperature reaches 37.5 is to go to A & E so I phoned the chemo unit to check whether I should go to minor injuries (about half a mile away) or go to A & E or go to the chemo unit (as they know my history so well.) There was no reply so I left a message saying that if I could get a lift I would go to A & E. Thankfully the friend I rang was able to take me straight away. She told me later that I looked absolutely ashen and she was worried I would collapse in the car.

We reached A & E (a twenty minute drive) and I was seen relatively quickly. I felt pretty rough and vomitted up the orange juice I had drunk at home. By this time chemo had caught up with me and after a heart scan and chest x-ray I was taken up to a chemo side ward. Bloods were taken for cultures to be grown to identify the source of the infection and antibiotics administered My temperature was still high and my blood pressure low. Swineflu was thought a possibility though I had no symptoms of coughing or sneezing. Nick had been summoned and he had also picked up son number 3 from the train . He was coming down anyway from London to see me for my birthday and before I started my treatment. They appeared in aprons and masks. I was still pretty much out of it, snoozing in 2 hour snatches.

The next day the haematology reg appeared without a mask to say they had discounted swineflu and identified a bug, which usually lives in the blood or urine, in my blood. As I had been neutropenic over a period of time it was possible for this to migrate to the blood.As it might be in the circulating blood or might be attached to the Hickman line, they would have to take out the line. This was a great disappointment. I'd had the line in for thirteen months with absolutely no problem.

I was taken round to a medical ward, very busy but very friendly. From the window I could see a firework display. As preparation for the line removal I was to have platelets. The first pool was put up around midnight. I have to have HLA matched platelets which therefore need to come from either Bristol or London. I also need piriton as cover because I have an allergic reaction to them. I think the delay was in part down to having to find a doctor to write up the piriton. Halfway through the transfusion my temperature shot up so the platelets were stopped and abandoned.

Next morning I felt much better and went off for a shower. When I came back it was time for the next pool of platelets and the removal of the line. This was done under local anaesthetic, curtained round in the open ward. After an hour passed I said "I'm getting the idea that things aren't exactly going according to plan." This was indeed the case as the whole procedure should be over in half an hour. At one point the surgical reg was bleeped and a second opinion sought. The anaesthetist was on standby and taking me to theatre was suggested. Just at that point the consultant appeared (on his day off - it being Saturday) and explained what was causing the problem. He gave some practical advice and once this was followed the line came out easily. 13 months is a very long time for a line to be in and it had begun to become part of me, the tissue growing round it. Then came the stitching with what looked like kite string and it was all sorted. Actually the most painful part was when the cannula was removed, the dressing taking a good few arm hairs with it. By the evening I was pretty tired and the wound was feeling stiff. I was once again put in a side ward which made it easier to sleep.

8th Nov : Birthday!

Had a grand opening of Birthday presents and cards with lots of texts from friends, a phonecall from number 2 son from Dublin and a text from number 1 son on honeymoon in Fiji so all in all a pretty good day. Lots of visitors!

9th Nov : This is the day I should be heading towards Hospital S for my treatment but am instead in Hospital D recovering from an infection. What happens now? Apparently I can go home today with oral antibiotics to take. Hosptal S knows what has taken place and will be in touch. It's back to the old routine - go for weekly blood test and wait to hear from Hospital S.

I hear nothing for two days. How soon can they put a new line in ? Have I lost my slot for the BMT? Is the donor available for another date?. On the third day I hear that I am to have a new line put in on on 16th and to be admitted to start treatment on Mon 23rd. Hurray! not too much time lost though it does seem very likely that I shall still be in hospital over Christmas. The boys are really worried about this aspect of the treatment. Christmas in our household is usually a one woman show so it's time for husband and sons to learn a few new skills! The boys also have to have flu jabs and swineflu jabs to be around me when I come home.

13th Nov After my blood test I take leave of the chemo unit I have been attending at least once, often twice a week for the past year. my treatment will now come under Hospital S and I won't be handed back to my local hospital for another 4 months or so.

16th Nov Up at the crack of dawn to get to Hosp S for a half past eight appointment for the new Hickman Line. I have to have 2 pools of platelets first of all and of course the piriton cover. This done, it is around 11.30 when I go down for the new line to be put in. The procedure is very much the same as last time. I'm glad to hear the surgeon say he has put in a thousand of these before. He has decided that it is fine to put it in the same side adjacent to the old one. Everything goes according to plan - a bit of local anaesthetic then a fair bit of tugging and pushing etc and generally just a weird feeling. A student nurse who did my observations earlier asked to come down and watch the procedure. I asked about how much blood there was and she said "very little" Of course I could not watch proceedings myself as I had my head to the side under folded drapes. Lets hope this line doesn't kick off like the first one did. It started bleeding in the evening and continued to bleed profusely for about 24 hours.

17th Nov All good with the new line and woke up feeling it less stiff. The district nurse came in to redress and flush the line. All seems fine if a little gruesome when viewed through the transparent waterproof dressing.

19th Nov Woke up quite excited by the prospect of having my hair cut short for the first time in 30 years! After talking a lot about it over the last few months and worrying over it I now feel I have completely come to terms with it. My concern was not so much being bald over the next few weeks but rather giving up my long hair.

A friend accompanied me to the hairdresser to take going...going...gone photographs.
The bulk of the hair is cut off in a pony tail and as my hair is so very thick the hairdresser was concerned at one point about damage to her scissors!. however, as soon as it was off I really liked the effect of short hair - lots of positive comments from everyone. Now of course I wish I'd done it a long time ago

Nov 20 Got word to ask me to go into hospital a day earlier. I think there are a few minor swabs etc to be done but also it is a means of ensuring I've got the bed! Now a mad rushing around trying to tie up loose ends, see people, wrap christmas presents, see the sea etc.Also a chance to go out for a last meal before I lose the pleasure of eating through chemo - and if I don't, well it's as good an excuse as any! lots of good wishes and prayers winging my way. What amazing support I've had!
Nov 22 The great adventure begins....
We set off for the hospital and I drink in the countryside and autumn colours, knowing that I won’t be seeing them again for some time.My mood is neither up nor down, I’m just glad to be starting on the final process.We arrive just on 4pm and are shown into a room which will probably be temporary. This is because it is assumed, until proven differently that I might have swineflu. To check on this I have to have a nasal flush test. This involves snorting salty water up into each nostril and then snorting it back into a little pot. I also have bloodtaken for cultures to be grown.I am also started on hydration with a saline drip being put up. This for the moment will be given 24/7
The room is about 12ft square with an ensuite shower room. There is a medium sized fridge and an exercise cycle!There is also a miniature wardrobe affair on wheels. The largish window overlooks the Blood Centre.Everyone who comes in has to be fully kitted up in long sleeved plastic apron,mask and gloves.They balso have to come through a sort of airlock.
Dropped off to sleep relatively easily but was woken at 3am by a tall man in a mask and apron who claimed to be a doctor and wanted to examine me.Some people pay a lot of money for this sort of thing! After a bit of prodding and alot of questions about my medical history he goes off leaving me a bit wakeful so i then sit up in bed and read for an hour or so before dropping off again.
Nov23rd
Woke feeling a little underslept and with a certain amount of lightheadedness – not surprising as I would have been due for a transfusion by this time and they do seem rather keen on taking blood – some for a cross match today.
Around teatime I got the all clear on swineflu so it is masks off and I get to see what people look like. It was beginning to worry me that the medical staff were totally gowned up but the domestic staff and cleaners came in without masks!
I moved rooms to just behind the nurses’ station, slightly larger than the last, with the addition of a length of worktop and a few shelves also an interesting dumb waiter arrangement about 2 ft off the floor where food trays could be slid in and out. Through the glass doors of this I have an intriguing view of nurses’feet going past. The window looks out over a corner of the Blood Centre building and a back exit from the hospital with houses sloping away from it.I have aquired a television and 3 aerials but after extensive and sometimes precarious attempts at trying to finding television a signal both Nick and I gave up and so I am resigned to using i-player on my laptop. There is of course the option of the patient line television which costs £5 per day. The screen is 5” x 4” so I won’t be making use of that...well maybe just for X-Factor – no only joking.
In these isolation rooms there is a system of air extraction and in this room it feels like you are sitting in a constant draught! must ask for an extra blanket or 2.
Regular observations are taken throughout the day and so far the only unusual thing has been low blood pressure – probably due to lack of fluids
I’ve got a bit of a rash going on over my stomach and groin – looks exciting! At last I’ve had the stitches out where my new line went in – they were driving me mad with itching.
The doctor has come in with the consent forms and to tell me the plan...I start off with an antibody called campath 1 tomorrow and have 4 doses of that. It is then followed by the chemotherapy which is a mix of fludarabine and cyclophosphamide. Transplant day is the 3rd of December.
Somewhere my donor – a 40 yr old man is getting ready for his part in all this. He has opted to give peripheral blood stem cells rather than bone marrow and will need to be given a growth factor –granulocyte-colony stimulating factor (G-CSF) - this temporarily boosts neutrophil production and encourages movement from the bonemarrow to the circulating blood. At present I am not allowed to know any more about this selfless man but can if I want write a note of thankyou to him. My consultant had stated a preference for a donation of bonemarrow but apparently there are advantages to both and the peripheral blood stem cells seem to be more successful at engrafting and do it quicker..
It has just gone 9.30pm and a nurse has been to tell me I’m to have a blood transfusion – one unit tonight and one tomorrow morning – so I was right about being low on blood. My haemoglobin is 8.00.The blood was through by about 11.30pm

Nov24 Somewhere before 7am was woken up to have observations (obs) taken and for the next unit of blood to be transfused. Had saline drip up all day. I was told that the campath would start in the afternoon and be run slowly, over 8 hrs to minimise the expected reactions which are high temperature, hot flushes and rigors
The rash is still there and I showed it to the doctor who thought it might be down to the antibacterial gel that I have been given to shower with. I now have a whole raft of tablets and some horrid liquid in a syringe which I have to squirt down my throat quickly followed by something to take the taste away. Apparently it cleans the gut Also included are two different anti-emetics
I did feel a bit light headed with a mild headache but that may have been due to me using the mobile convector heater to combat the cold air moving round the room. Have now got an extra blanket so have switched the heater off
16.20 had 2 paracetamol and iv piriton plus a half hour saline flush – 2 lots up at once! Prior tp the campath. Any reaction is expected after 4hrs ie 9pm I have been promoted to measuring my own urine output – exciting! It involves tipping the contents from a cardboard former into a plastic measure. I’m not entirely sure this is a good idea with no gloves and the problem of where to wash out the measure afterwards. Anyway I am happy to do it and fill out the fluid chart afterwards
back muscles felt rigid but no rigor. Began to get a strong headache and pain around my pelvis – a bit like sciatica. By the time the campath was finished it was 1.15

Nov 25 Was woken up at 6.30am to have platelets, preceded by piriton (as I have reacted to platelets in the past) Because of the piriton combined with the lack of sleep I don’t feel too alert today I also have a bad headache and sciatica but have been offered paracetamol and
The rash has come into its own and now looks like a child has gone mad with a red felt tipped pen. It is now on my inner arms, back and I even have spots on my tongue and the back of my throat.The thinking now is that the campath has been affecting the platelets and that this is a petechiae rash ie the red dots are broken capillaries.
Had more platelets late morning and am feeling better after the pain relief. The good news is that after fiddling with a dial on the wall and the little mobile heater that I have got the temperature in the room to a reasonably constant and comfortable level. I really wasn’t looking forward to wearing my woollen hooded jacket throughout my stay.
The campath was set up in the afternoon, this time with a pre-med of hydrocortisone – one side effect may be wakefulness which I don’t really want if it coincides with the middle of the night!
The physio came by with a couple of pages of exercises – can’t really get excited about them now but will try to give them a go. It includes the excercise bike! My BP is lowish 89/60 probably because I haven’t been drinking much.
Haven’t had adverse reactions to the campath this time so that is good news.
Nick brought in my lap top and dongle. There is wifi here but we are not allowed to connect into it. After much discussion with the nice man at vodaphone we purchased the dongle on a pay-as-you-go basis but we are astounded to find that after 15 mins or so we have used £4 worth – that is ridiculous! Not a positive experience with the laptop as I spent hours updating my blog and then went on-line to publish it only to discover that everything I had written disappeared – very frustrating and so to bed.
Nov 26th A pretty good night’s sleep broken at 5.50am for bloods to be taken and a fairly easygoing morning. Showering is interesting as there is a fixed chair in the shower which makes it a bit awkward if you don’t want to sit down. An added quirk is that I am connected to the ivac machine so my line comes in round the shower curtain.
I completed my excercise sheet and and am beginning to notice the effects of the 24/7 fluids I have put on weight and my feet and hands etc are beginning to swell and feel a bit tight . I had today’s platelets then set about redoing my blog update .
The rash is beginning to lessen, due to the hydrocortisone but it seems to be seen as unusual by the medics. In the afternoon the next campath is put up and I get a visit from the consultant and two doctors. The rash gets another airing but they seem happy with everything else.
Spent a long time rewriting the blog and becoming increasingly frustrated by the laptop pad – give me a mouse any day. This time I wrote it first as a word document then pasted it on to the blog thus avoiding the risk of losing all the text.
Poor Nick drove from work in Bridgewater to the hospital – a journey of 3 hrs after a hard day’s work.(especially with a return journey home of one and a half hours) He also brought some ice lollies in a cool bag but they had to be rushed to the freezer on arrival before they melted completely. It is really useful having the freezer available for patients’ food.
There are still teething problems with the laptop as it seems to be gobbling up obscene amounts of money but not consistently. Nick in the end took it away to see if he could work out what the problem is.
Slept really well from 10.30pm through to 6.30am. I have to say I do find the beds very comfortable. However, even with all the lights off, the room is quite light as it looks on to the nurse’s station via a large window which does have closed venetian blinds but still allows a lot of light through. The food hatch has glass doors about 2ft by 18 inches so a lot of light comes through there too. Of course the air extraction system is rather noisy too so I may start using ear plugs.
27th Nov
Bloods taken at 6.50 am. Now I have another rash coming through! This one has raised bumps and is mainly on the forearms, back of the arms and top of the thighs and is itchy.
Had a pool of platelets and felt fine. Quiet morning
Some friends came in the afternoon and it was great to hear news of the outside world and chat about non-medical subjects.
I had been told previously that I could send a Thank You card to the donor, giving it to the specialist nurse to send it on. However, later in the afternoon I had it returned. It had not passed the censor! – too much personal information – oops! Apparently all sorts of emotional complications can occur and it is for this reason that anonymity is retained for a long time after the transplant.
I had a long chat to my sister and a couple of friends on my mobile. It is great that I can use it freely.
In the afternoon,I was given hydrocortisone and campath(antibody) followed by fludarabine (chemo) and a saline drip with potassium. Apparently the two chemos cannot be given together because of unpleasant side effects. Around 11.00pm the mesna (protection for the wall of the bladder) was pushed through then another flush put up before the cyclophosphamide (chemo). After this a further flush and a final dose of mesna. This meant that I was disturbed every hour or so through the night and got very little sleep. I was quite wide awake till about 4 am which may be a side effect of hydrocortisone which is a steroid. Anyway, by the time I was woken to have bloods taken at 5.50am I wasn’t too sure which planet I was on! The good news was that I didn’t seem to have any reaction to the chemo – only a slight headache and that was probably more to do with lack of sleep.

Nov 28 I’ve now been promoted beyond merely measuring my urine output, to checking for blood (this may appear if the cyclophosphamide attacks the wall of the bladder) and even to dipping the urine and matching with a colour chart to see if there are any abnormalities which can then be pointed out to the nurses and checked. I’ll be urine checker-in-chief soon.
Felt much better after I’d had a shower and washed my hair and slapped some acqueous cream on my rash which hung around for a bit and then disappeared.
Had a pool of platelets and was told that my chemo would be delayed till the afternoon as there was no one on duty in the morning that was qualified to do it.
I spent the morning writing the first of my Christmas cards. I usually hand paint 100 watercolour Christmas cards each year and they are not usually finished till the middle of December and are often written in a great rush so it was rather a pleasure to get them done so early. Not knowing how I shall be feeling in the weeks ahead it is better to get started now.
Saw the doc and asked about the bug I had had which delayed my treatment. It turns out that it wasn’t ecoli but an obscure clostridium.
The chemo couldn’t be given till the afternoon as no one here in the morning was qualified to give it. It all went through with no problems whatsoever. I can’t believe I’m getting off this lightly!
Nick brought the laptop back so have been using that – this time with a mouse which is much faster. I’m still very wary of being online because of the cost but for simple tasks it seems cheap enough.
All the chemo’s, flushes etc were completed by 11pm so I settled down for an excellent night’s sleep. A very kind nurse kept disturbance to a minimum and I slept for 7 – 8 hrs
I snoozed a bit in the afternoon catching up on last night’s lost sleep.

NOV 29 Woke up feeling really good. I was free of the ivac machine for a little while so took the chance to have a shower. A bag of platelets were put up and my chemo started a bit earlier than usual so that it was finished in the afternoon. It was a very good day and I even did my exercises including a short “cycle” ride looking down on the comings and goings below me at the back exit to the hospital. I suppose it is slightly better than the view you often have in a gym i.e. looking at yourself in a mirror. Actually I’m looking not too bad – quite healthy in fact.
I felt fine all day and it being Sunday with most friends not at work, I had lots of texts and a couple of phone calls. It is great to actually talk to people but of course you never know when you are going to have obs taken or have a doctor’s visit. I prearranged with number 2 son to skype at a particular time. This was a great success and it was really good to see him via the video. It must be 2 or 3 months since I’ve seen him as he is at Uni in Scotland. The video call lasted 20 mins and cost £1.20 which I thought was good value.
Spurred on by this I decided to test the cost of watching a TV programme via i-player. This turned out to be a bit more expensive at £2.80 for an hour programme so I don’t think I shall be doing much of that!
When Nick arrived we had another half hour of slapstick, moving the furniture around, clambering over the exercise bike with aerial held high, in search of the elusive signal .A friend had lent me an aerial booster which did provide a half hearted analogue signal on one channel only – a bit like watching TV in the fifties. After this episode we decided to admit defeat and I have very generously given the TV to another patient in a room which actually gets a signal. So it’s back to good old radio 4 and Classic fm.
Nov 30 Had a good night’s sleep and woke at 6.30am. I did have a headache light a tight clamp across my eyes and the back of my head.
Cyclosporin was given intravenously. This is an immunosuppressant and although I have been on a tablet form of it since my ATG treatment, this was a stronger dose. I had a headache and most of the afternoon. This is an expected side effect of the drug at this dose. Painkillers reduced the headache to a background pain and it eventually disappeared towards the end of the afternoon.
I made good use of my time writing about 60 Christmas cards – a task I don’t usually finish till about the 20th December.
Lots of doctors today, the Haematology Reg and a S.H.O in the morning and three in the afternoon including the consultant. Although gone now, the rashes seem to provide interest but nothing else unusual was detected through examination.
I felt a bit more off my food and couldn’t even fancy a cup of tea. By late afternoon I felt pretty tired. I expect this is the cumulative effect of all the chemicals – and all that writing!
In the afternoon I had my final chemo but it wasn’t till 11.00pm that I had my final dose of mesna.

October 2009

Things are happening at last!

Went to see the consultant at Hospital S. We had a 2 hour consultation with him with a specialist nurse present. After establishing that there was a history of Aplastic Anaemia transplants at this hospital I was more than happy to go ahead.

The whole procedure was gone over in detail with risks and side effect possibilities clearly detailed. The possibility of 3 - 5 litre of diarrhoea per day sounds like fun!

I'm pretty good at not dwelling on the negative especially where effects are possibilities rather than inevitable. I much prefer to know the worst case scenario, which I then let slip to the back of my mind. I remember reading somewhere that whether you are a pessimist or an optimist the result is the same but that the optimist has a much pleasanter journey there. If outlook does have a bearing on the outcome though I'm sure that an optimistic one will produce better results. I'm also sure that the reaction to drugs and procedures is very individual so that you cannot know how it will be for you until you actually experience it. So with that in mind, Bring it on!

After having been in limbo for so long we now have a date! The 9th of November for the conditioning treatment (chemo) and the 19th November for the actual transplant. That's handy I get to fit in my birthday first on the 8th November.

On the way home from the hospital I went through my mobile phone address book letting friends know what is happening. I feel a mild sense of elation now that a date ia fixed and we know where it is going to happen. It is also reassuring to hear from a friend of mine, whose friend is a consultant haemotologist in a different part of the country, that he rates both our hospital and our consultant.

The main area of concern that I have had to come to terms with is losing my hair. At present my hair is very thick and curly, coming someway down past my shoulders. Nick, my husband, doesn't see what the fuss is about but since he is almost bald I suppose that is understandable. My consultant tells me that it is a virtual certainty that I shall lose my hair - given the strength and type of chemo used. With this in mind, I have made an appointment to have it cut short on the 6th Nov when my hairdresser comes back from holiday. I decided not to have it cut too early in case for whatever reason the admission date gets pushed back.

Now the question is what to do with the hair which is cut off? It can be donated to a Cancer charity to use in real hair wigs. Also I did partially investigate having a wig made of my own hair but it is hugely expensive and would also take a long time. Other possibilities include having it made into extensions - I have a friend who could do this. However my hairdresser tells me that it would be some time before my hair would grow back strong enough to take extensions. I also expect my new hair to come in grey as at present I colour my roots. Colouring hair after chemo is also a bit risky and it is better to let the chemicals fade from the system before this is attempted. Green hair is not a good look! I have been toying with trying to stitch the cut hair on to a headband that could be worn under a hat. This might be disastrous but still worth the effort. I'm sure it will provide us with a few laughs anyway!

I'm beginning to be aware of the time disappearing fast and have made October my official month of indulgence. I'm using it as an excuse to sort out my social life with lots of coffees and lunches.I am trying to fit in lots of things before I go into hospital - not least a bit of exercise.

I thought I might take out a month's subscription at the gym (for gentle exercise) but when handed the new medical details form, I muttered that I might not pass muster. On further disclosure it became clear that I would not be allowed access without a letter from my GP. On enquiring about this at my surgery I was told that there would be a cost of £20 (just less than the month's subscription) so I decided to go out for a 6 mile cycle instead - on the flat of course. I have also gone back to yoga.

I have made time for myself to do some watercolour painting and would like to take some to an Art Fair at the end of the month though that might be pushing things a bit.

I persuaded Nick to spend a weekend in Cornwall and we managed to book into an excellent hotel on a beach recommended to us by our surfing son and daughter-in-law. The weather on the Saturday was absolutely beautiful and we lay in bed in the morning watching the surfers on the beach. The Sunday started foggy and rainy but we managed a bracing coastal walk without the need for waterproofs.

I've embarked upon the raft of tests required as baseline assessment before the BMT. These will also throw up any current problems which can then be dealt with. So far I've had a kidney scan, echocardiogram and lung function test. All have been clear and I find that I have 8% higher than expected lung capacity - all those outdoor pursuits I suppose. I still have to have a bone marrow biopsy (my 4th) and a GFR test - a kidney function test where radioactive dye is injected into my vein. Apparently if you work with photographic paper you cannot return to work immediately afterwards as the dye will give off gamma rays which work like high energy light rays and will develop the film You also need a covering letter if you are going to go through airport security checks in the couple of days following. I can just imagine the mayhem you could cause!

16th Oct: Today I'm having my last blood transfusion (3 units) before I'm admitted. I'm usually here every 3 or 4 weeks - a peaceful interlude sitting quietly for 6 hours or so usually catching up on reading, letters or French homework. It's a pretty good deal with a 3 course meal thrown in !

31st Oct: About 10 days to go before admission and time is disappearing fast. Trying to fit lots in before the great adventure begins - social meetings, finishing off curtains, sorting out tiles which will hopefully be put up in the kitchen in my absence. All this between visits to hospital(s)

Yesterday I had an appointment with the wig fitter - what a laugh! I have so much hair I couldn't get it up under the wig. I was reminded of a line from a comedy show - "looks and feels like a small furry animal on the top of your head." The wig fitter said it is a long time since he has seen someone with as much hair as I have and that it would be a pity to cut it if there was any chance of me keeping it through the chemo. I don't want to go down that road now - decisions have been made. Anyway he has very kindly offered to come to hosp S with some samples once I have less hair. Apparently my colour (ie to match my own hair) is called chocolate copper - sounds tasty.

I am beginning to collect wig stories like the friend who opened the hot oven door and melted her fringe and the orthodox jewesses who shave their hair after marriage so constantly wear wigs, also the dog that ran off with the wig from the wigstand.

My sister has very kindly provided me with a "See- you- Jimmy" wig - a tartan hat with ginger "hair" sticking out all round - all part of my Scottish heritage.It is reassuring how the family members rally round with their support at times like these. Son number 1 on being told that a BMT was on the cards said "Does that mean I'll have two bald parents?" while son number 2 said "You won't be needing your climbing gear for a while Mum. Can I borrow it and take it back with me to Scotland?"


Have been into Matalan and bought up a year's supply of jammies - tops and trousers. not necessarily what I would normally choose but more suitable for lounging around in bed for 6 weeks or so. We have also been looking at laptops with a view to me having one in hospital. Sadly there is no wifi in the bonemarrow area so I will have to get a dongle.

I'm not sure at this point if Nick will take a period of time off work or how often he will visit.When I had the ATG he worked and visited daily. Although that hospital was a little nearer home, he was run ragged by the end of it all. It just shows what a toll these episodes take on the carers and families. He has 2 centres of work one of which is two and a half hours from the hospital so it will be a bit too far to travel. However, there is the chance of staying overnight at a house near the hospital for a nominal fee. Rooms cannot be booked in advance and may have to be shared but at least it offers a solution of sorts.Lots of friends have offered to come and visit but it will take them at least one and a half hours travel each way and my worry is that they will make the journey and then find that I am feeling too poorly for visitors. I suppose we shall just have to see how it works out.

I have managed to get my act together with the paintings and and am now ready to pack up after at the Art Fair - great gallery, good light, great atmosphere with live music but virtually no customers! In the 3 hours I counted about 30 people and some of them were connected to the musicians! One very small sale so not a great success.

September 2009

Wow! I have just found out that I have 5 potential donors! which is pretty good. It sometimes pays to be common.

I am finding that time is passing very slowly - I thought that once a fully matched donor had been identified that things would whizz along. However arrangements are in place for me to visit the consultant at Hospital S and more blood has been requested so things are beginning to happen.

My ferritin level is back above 2000 again - probably as a result of being topped up with blood but having the pump removed over the holiday/ wedding period.

I flew up to Scotland to attend a small college reunion, meet up with friends and to spend a few days with my sister - doing a spot of posh camping - in a (heated) wooden wigwam. I flew from Bournemouth airport where an official gave a very cursory glance at the pump from a distance. No one asked about it (though I was armed with a covering letter from my consultant). I was however, asked to remove my shoes for inspection. I am always amazed to find people who still are not aware of the restrictions though these have been in place for a few years now. The man in front of me was trying to persuade the female officials to take some very expensive body cream as a gift rather than have it consigned to the "bin". What does happen to the stuff in the bin anyway? Do they divvy it up at the end of a shift? How many scissors and penknives does one person need?

On the return journey from Edinburgh airport there seemed to be a different set of procedures in place. My pump was immediately noticed and I was taken to one side by a female official while my covering letter was read. Swabs were then taken and after a quick analysis both I and the pump were deemed safe to proceed. But hey! I didn't have to take the shoes off!

I have been feeling a bit nauseous again with no real appetite - only eating when I know I should. I often start a meal but am full within a few mouthfuls and end up throwing the rest away. It seems to be a bit better if I eat a little and often. The docs did try halving the dose but that made no difference. Also there had been a week on the full dose when I had no symtoms of that kind so it remains a mystery.

I had my usual 3 units of blood at the transfusion centre and went off home. The weather was so beautiful and I felt so energised that I got the bike out and went for a 4 mile cycle, squandering my new blood. (I'm not sure if that is how it works but certainly I feel an instant renewal of energy after a transfusion) En route I met a friend who said she was going to do a 20 mile ride on Saturday and did I want to come along. Why not? I thought. The weather on the Saturday was still holding and a group of 4 of us set off. There was a smattering of hills on the route but I managed very well, getting off to push on the very steep ones. I felt very good afterwards and had no aches in the days following.

Now that potential donors have been identified and one of them has been taken right through the matching procedure and found to be a full match, the certainty of a BMT taking place seems to be getting stronger and stronger. Typically, now I am beginning to feel contrary. With the transplant almost in the bag I begin to wonder whether it is completely necessary - my platelets have stabilised to the extent that I have had no platelet transfusions since mid August. That is not to say they are high. My levels are still hovering around 15 - 20 but they are holding their own.Does this mean that my other levels might start to creep up? I have been very healthy since recovering from the ATG experience with no problems at all My quality of life would suit most people of my age; I am in the minority, wanting to clamber up cliffs and down pot holes so should I be content with the status quo?
After a short phase of doubt I am once again in favour of the BMT. It is recommended by both consultants and is the only true chance of a cure. Remaining as I am, I may at some point in the future begin to be resistant to blood tranfusions which would make it much more difficult to manage. The PNH clone, at present sub-clinical, may become more significant and my condition flip over into myelodisplasia or leukaemia. As a repeat of the ATG treatment offers only a 35% chance of success (and is not a cure) then this is not a feasible solution. So onward with the BMT

25th Sept: I have been suffering a bit from a dull ache in my left kidney area - enough to want to put a warm hotwaterbottle on it but not enough to warrant taking painkillers. By coincidence my kidney scan, one of a set of tests to be taken before going for the bonemarrow transplant was carried out around this time but nothing showed up on the scan.

The other tests which are required, partly to give a base line assessment before beginning the treatment and also to pick up any problems are a lung function test and heart scan (echocardiogram). Appointments have been made for these and I have been weighed so that the amount of chemo required can be calculated.

August 2009

Having returned from the holiday I am now back on the pump (desferrioxamine)- you just have to remember when you wake up and your brain is still a little foggy, that you have to gather up the pump from under the pillow - or it snags! My iron level is steady at around 2200. As this is too high I may need to have the dose increased. My kidney function seems to have improved so am back on cyclosporin.

I met a lady in the chemo unit who had had a BMT in the hospital I am aiming for. I would have been keen to chat but when I got back after seeing the doctor she had disappeared. I am sure that if I really want to get in touch the chemo nurses could pass on my contact details to her.

I have had a few mouth ulcers so have begun to use the chlorhexidine gluconate mouthwash which seems to improve things. I have also been feeling a little nauseous, particularly in the mornings. When I do eat I find that after a few mouthfuls I feel as if I am eating on a full stomach. Not really a pleasant state of affairs but not a big enough problem to make a fuss about.

Went up to London to see how things are progressing. Found out that I have a fully matched unrelated donor! (MUD). It doesn't really seem right to refer to these selfless people as MUD! Both nick and I felt buoyed up with this information feeling that a cure is now within the realms of possibility.

It was very clearly pointed out that due to my age (56 years) and the fact that the donor is unrelated that the bonemarrow transplant should be carried out in a centre where there is experience of BMT's specifically for Aplastic Anaemia. Apparently there are subtle but important differences between leukaemia transplants and those for Aplastic Anaemia ad thus the need for expertise.

My choice of hospital would be Hospital S as it is closer to home so it remains for me to find out how experienced the BMT dept is with AA before making the decision. Part of the reason for the choice is ease of visiting for family but I fully understand the thinking behind having it done in London and should Hopital S be found to be wanting in experience I will have no hesitation in opting for the former.

14th Aug: My ferritin level seems to be coming down gradually with a current level of 1,852 so good news there.

The high point of this month is yet to come, with number 1 son's wedding on the 29th. We may be pushing our luck a bit though with fitting in another holiday break just before it!

This is our favourite holiday destination - a beach hut in South West Scotland where I grew up, right on the sea (you step out of the garden on to the high tide mark) and guaranteed relaxation.
The weather was a little more "Scottish" than our previous holdiday, changing every two hours or so but it still did not prevent us from doing what we wanted to. Swimming of course was not an option with the Hickman line but we did manage to do some kayaking (choosing the right conditions and my own competence gained over a geat many years meant that the danger of capsize was negligible). Hill walking was also on the agenda - nothing too extreme and a couple of six mile cycle rides kept us fit. Nick went out for a couple of runs but I am afraid that even with topped up blood I am not quite ready for sustained running.

Of course during this time I was once again without the pump. This period was also extended to cover the wedding - just as well since the pump, discreet as it was, did not co-ordinate with my other accessories!

Although August has been pretty miserable weatherwise, the wedding day was blessed with sunshine. The whole day was a great success. The venue where everything took place was an amazing house and grounds dating back to the twelfth century, once called the most beautiful house in England. The bride was beautiful, the groom handsome and the flower girls, delightful There were men in uniform, men in kilts and pretty girls.I really don't think the day could have been improved on. It was thoroughly enjoyable and I even had the energy to spend most of the evening dancing.

July 2009

A busy month ahead with the usual hospital visits - thankfully my hospital is only 20 minutes away depending on traffic and the chemo unit where I go for blood tests, change of pump and platelets is a haven of peace with a very competent, well organised and friendly team of staff. I'm always made very welcome and find the whole experience very relaxing.

I am getting out more on the bike and am feeling well in general. I have been attending an untutored portraiture class which is very reasonably priced. It does feel slightly sinful though to be going off drawing first thing on a Monday morning.

Went up to London mid-month for number 3 son's graduation - an unbelievably hot day.The usual mix of boring ceremony and slap up lunch. No one on his course has got a job - well it is graphic design and we are in the middle of a recession. Husband Nick had to drive back for work the next day but I had decided to make the most of it and stay on in the student flat for another day in London, returning in the evening by train.I spent the remainder of the afternoon and early evening visiting the Art Galleries and then returned to the flat by bendy bus - probably not a good idea with a compromised immune system to be squeezed cheek by jowl in with the random mix of humanity that makes up London transport passengers. As my son and his flat mate, were out celebrating the end of the course with the other graduates, I spent a few hours "chatting" to his flatmate's mum who was also staying in this 2 bedded flat. (Another occupant was expected back, he was "living" in a large cupboard. So all in all a pretty crowded night!The flatmate's mum being Portuguese with a smattering of English and my Portuguese being totally non-existent it made for an interesting evening but it was amazing how many subject we still managed to cover.
The next day was spent on Oxford Street checking out possibilities for the wedding outfit for number 1 son's wedding in August. Living in the backwater of Dorset you forget how demanding a trip to London can be so I was glad to collapse onto the train at 8.30pm.

As my kidney function was playing up with raised creatinine levels my cyclosporin was stopped. I think this decision was to do with the fact that we were going away on holiday. The staff very kindly let me have the pump disconnected for the duration of the holiday and as usual made sure I was topped up with blood and platelets

Having taken cognisance of the objections to our previous trip to Spain we had booked 10 days away to the west coast of Scotland. The weather was very good considering that we were in Scotland. It was never very cold and most of the rain was overnight. It certainly didn't stop us going for long hikes (13 miles one day) and the day we chose to go across to Ulva was blisteringly hot. A German walker we met took great delight in telling us that his friend had texted from England to say they were caught in a deluge. The holdiday was problem free from an AA point of view and very relaxing. On our return journey we even managed to fit in an overnight stay with some friends on a boat and go out sailing with them.

June 2009

My cyclosporin levels have been up and down. Now we are back to a dose of 75mg twice a day.As my haemoglobin level was 8.3 on the 2nd I was booked in for a transfusion. However because there were no spaces till the following week by the time I had the 3 units of blood my level had gone down to 6.9 - the lowest so far (but actually still alright).

I received a phonecall cancelling the London appointment which was a disappointment as I had been hoping to gather more information on potential donors. The reason given was that they had no new information to give us so in fact it was thoughtful of them to save us the journey from Dorset. However, I had already booked to go and see a show so we went anyway, staying overnight with our son - ah the joys of a student flat - actually it was very clean and tidy to be fair!

On the 16th I had my desferral pump fitted to allow the excess iron to be excreted. This involved a plastic bottle (like a guinea pig feeding bottle) being attached to my Hickman line. The plastic bottle is protection for the condom balloon- yes that's what it looks like - which is filled with the chemical. This chemical is pumped at a very slow rate (1.5 gm per day) into my vein. The bottle lasts 7 days and is worn 24/7 Great! It fits snuggly into a fabric bag and is clipped to a belt tag on trousers or can be attached to a belt which goes round the waist. It felt very strange at first but you do get used to it. The bottle has about 4 ft of fine tube before it goes into the line. This can be neatly wrapped round the bottle most of the time and extended for pushing under the pillow in bed or hooking up out of the way during a shower etc. The most awkward time is trying on clothes in a shop. At least since I am relatively short the tube is long enough for the bottle to stand on the ground.The chemo staff are very good and can disconnect it for short times if required.

I have continued to be infection free with my only side effect being occasional mouth ulcers and bleeding of the gums.

I have continued to take excercise through cycle runs of up to 6 miles and walks. I am itching to get back to rock climbing but that is off limits.

At the end of the month I had the rescheduled visit to London and received the results of the bonemarrow biopsy which was consistent with continuing aplastic anaemia. There was also evidence of a sub-clinical PNH clone (paroxysmal nocturnal hemoglobinuria).

The good news was that I have a number of potential donors and that more indepth matching is in progress. To be suitable a donor has to match at least 9 out of 10 markers so here's hoping.

May 2009

Now feeling pretty bright eyed and bushy tailed and feeling more inclined to do some exercise, cycling, walking etc.I have also started a small drawing group and am beginning to think of getting involved with creative projects. My energy is still of course related to where I am in the cycle of blood transfusions.Immediately after a transfusion I feel the benefit of it and am able to run for a short distance without being out of breath. However, as my blood levels sink to the low eights or sevens I feel quite breathless when climbing the stairs.I am still requiring 3 units of blood every month or so and platelets every week. My latelest platelet level is around 15 to 20.

Another visit to London to discuss the treatment options available ie

• continued supportive care with blood and platelets as required, with cyclosporin

• a second course of ATG

• unrelated donor bone marrow transplantation.

There are advantages and disadvantages with each: the carry-on-as-we-are choice is restrictive and risks a flip over into leukaemia; a second try with ATG has only a 35% chance of success and is prone to relapse; the only true chance of a cure comes with the bone marrow transplant but that has a risk of mortality through the process and also runs a slight risk of graft versus host disease. Not a straightforward choice but at present the general leaning is towards a bone marrow transplant.

Blood was taken to send to the Anthony Nolan Trust and to check on potential unrelated donor availability.Apparently if I have a common tissue type then the chance is one in a thousand. However if I have an uncommon tissue type my chances are one in several million. Let's hope I'm common - in this instance.

My iron level , after all the transfusions I've had, is rather high so it has been suggested that I have chelation therapy . Iron is not automatically removed from the body so a chemical is pumped in through my line, the iron attaches to this and is expelled with the urine. This will be an orangey red colour! The danger of leaving the iron untreated is that it deposits around the heart and liver and can cause damage.

It is now nearly 9 months since my ATG

Had another weekend in Cornwall - glorious weather. Went for a longish walk along the coastal path.Felt a real spring in my step on the flattish ground but needed to stop for a breather on the steep upward steps.

have been given the all clear regarding my tinitus. It sounds as if the azithromycin might have been contributory but a virus cannot be ruled out. The advice is to avoid azithromycin in the future if an alternative is available. Anyway it's good to be back to clear hearing and to be without the constant background noise.