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.
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