Posted by: glenswatman | October 11, 2012

20121001 ENGLAND Time for a transplant

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201210
MONDAY 1 OCTOBER – I have a bad night pondering yet another letter about the unjust Spanish motorhome fine and in fact end up getting up at 2am and composing a reply. I still get up early and by 8.30am have male stripper in the bathroom. We’ve had damp problems and the painted over contour wallpaper needs removing to see what is going on underneath. Fortunately it was only surface damp so he only has to create a smooth surface and put mould resistant paint on rather than having it re plastered. The leaking roof ridge tiles will be done later in the week, a bit back to front but at least with a rental house we don’t have to pay anything. It’s after 3pm when the bathroom is finished and I call Steve to say I can visit. He says he would rather I stayed home as he is doing fine. A dietician has been and ordered him extra things like cup a soup and upped the size of his meals. Dr Gilleece is pleased with how things are going so I will wait until tomorrow afternoon and go in with Claire. The day has gone quickly as it took me a couple of hours to type up and then Google translate the Police letter. Bottom line is they don’t believe we moved from the beach and say we were seen there at 11pm. We have a photograph with date and time showing we moved onto a car park and I now have something called a “Instrucción 08/V-74” that states that in Spain a motorhome may “park” anywhere that is legal for a car to do so – as in you do not camp and put out chairs etc so that covers us for the place we moved to.
KEIGHLEY – JIMMYS 4 (DAY – 4)

TUESDAY 2 OCTOBER – I intend starting jogging so this morning seems as good a time as any. I drive up to the tarn, walk the first stretch and then begin to jog. Major problems, the leggings I am wearing will not stay up and pull my knickers down with them and as the cold wind bites into my – wait for it – chest I remember I have come out so quickly that I haven’t taken my morning asthma medication. It’s starting to rain as well so I make do with 2 laps of fast walking and intermittent short jogs – pretty pathetic really. Claire picks me up after work and using instinct and a map I manage to navigate us the correct way to hospital for the first time. There is a white board in the room and they are now logging daily figures for weight and blood counts. Steve has already started to put the weight back on that he lost since going in. The dietician has arranged for supplements including scone and cream. We take a walk around the hospital and sit down in the atrium on the sofas. Travelling back after 8pm we do the journey in 45 minutes but I still think I will use public transport when I am alone.
KEIGHLEY – JIMMYS 5 (DAY – 3)

WEDNESDAY 3 OCTOBER – Donor day, somewhere down in London Steve’s donor will be visiting a hospital to donate his stem calls. We know it is a man in his 20’s and he will spend about 4 hours having blood taken out of one arm (much like a blood donation) then this will go through a machine to extract the stem cells before putting the blood back into his other arm and saving the stem cells for the transplant patient. Sandra and Keith are back from their motorhome trip to Wales and I meet Sandra at the station. I buy my 1 month bus & train pass (£112) whilst Sandra gets the over 60’s privilege of free buses in England and half price train travel. Arriving in Leeds we walk to the area to check out the hotel I will be staying in tomorrow night. Good job we did as I booked an Etap hotel but they have just changed to Ibis and this is how the hotel signed. On The Headrow we visit The Red Hot World Buffet for lunch, £8.95. The restaurant is underground and to enter you walk through part of an aircraft cabin. The food is amazing with chefs stood at different stations serving Japanese, Indian, Mexican, Chinese, Thai, Italian, food and also English roasts. There are other counters with starters, more mains and desserts including a dessert bar. Reckon I manage 1 starter, 2 mains and 5 platefuls of dessert before my stomach calls it a day. I must go back as there are still many more things to be sampled. We’ve spent so long eating that it is 3pm before we arrive for the 2pm hospital visiting time. Fortunately the reflexologists is busy giving Steve a foot massage. This morning he has had Melplan chemo which went only took 5 minutes. He is now on Alemtuzumbab (aka Campath) which is a nasty one and in the past has killed people. Now they take precautions and for the first hour it only goes in at 10ml an hour accompanied by other fluids. They keep checking and Steve is fine so increase it to 15ml for the next 2 hours then assuming Steve is OK it will be 30ml for the last 2 hours completing the 100ml dose. He seems OK with it and we enjoy hearing about Sandra’s trip to Spain and then motorhome visit to Wales. Steve’s gaining weight again but the snacks that were ordered have not been delivered today. I speak to one of the nurses who takes me to a huge fridge and tells me to take what I want and put it in Steve’s fridge and come back for more when he needs it. I arm up with yoghurt, fruit tubs, cake, cheese and biscuits and other goodies – should keep me going nicely through visiting hours! My car parking plan failed as it seems on weekdays the workers have taken all the spots so I have ended up on the back streets and luckily have Sandra to walk back with me. After dropping her off I settle in for the night listening to the rain pounding down outside.
KEIGHLEY – JIMMYS 6 (DAY – 2)

THURSDAY 4 OCTOBER – It’s a strange morning with heavy mist and a real nip in the air. When I call Steve I hear that after the 30ml doses of Campath last night he got quite sick with hot and cold sweats, headache, sickness and itchy skin. Consequently he had a bad night and is very tired. The Dr is going in to see him before they give him the next dose this afternoon. Early afternoon get my flu jab, having been offered it as I am a carer. It’s a non live virus so shouldn’t cause any problems, in fact they say if I get flu symptoms I have almost certainly caught flu from somewhere else. I arrive at the hospital at 4pm and Steve is on the Campath (short for Cambridge Pathology where it was concocted). Again the 30ml dose gives him a terrific visible rash which drives him crazy. He’s pretty weary so I spend a lot of time just sitting close to him before leaving at 8pm. I’ve booked into the Ibis Budget Hotel (£25) nearby thinking I would be on hand for the morning transplant but in fact it is not going to take place until the afternoon. So double room to myself (very basic not even a kettle) I settle down to watch TV.
LEEDS IBIS BUDGET HOTEL – JIMMYS 7 (DAY -1)

FRIDAY 5 OCTOBER – When I phone Steve he is not feeling well as he now has diarrhoea to add to the side effects and he’s sounds a bit stressed. I have a stressful time once I leave the hotel at 11am as I need to buy a pair of winter books and just hate shopping. 2-hours later I am back at the first shop I visited. I refresh myself with a Subway lunch then set about finding a smart winter coat but Primark gets the better of me. I’m a little early but they let me see Steve. His door has a yellow sign for source isolation and Nurse Luke tells me it is because of the diarrhoea and I must done a yellow plastic apron and gloves before entering the room then remove them within the room and wash my hands before leaving. Steve’s really weary having not really slept for a week now. He’s had mail, a rude joke magazine from John & Shirley in Spain and a rude postcard from my sister. Nurse Luke says the Doctors had a good chuckle at the card before bringing it in as it has 3 barely covered nude girls on it. Down to business and they inject a load of drugs through Steve’s drip and then the special bag arrives. It looks much like tomato juice and feels thinner than blood. Luke hooks it up and the transplant begins and takes about 30 minutes. During this time Luke stays by the bed and keeps checking Steve’s vital signs. Steve gets quite restless and feels very flushed and sickly – I think a little is the psychological aspect of it all and we constantly think about the donor with real gratitude. From now on Steve should not need any further chemo just whatever drugs or drips are needed to counteract the graft versus host and other diseases induced by the stem cells. Once it’s all over he seems to settle down and I nip to the loo for a quick sob of relief. I stay with Steve until 7pm then reluctantly head home. This has to be a turning point, it was 5th December when Steve was diagnosed, so it is exactly 10 months since Steve was diagnosed, 5 is my lucky number so having the transplant on 5th of the 10th has to be lucky.
KEIGHLEY – ST JAMES 6 (DAY 0)

SATURDAY 6 OCTOBER – Steve sounds in better spirits when I call and with the assistance of a sleeping tablet slept through until 5am. Having not had a proper sleep since he went into hospital this has got to make him feel better. The only left over side effect is now the diarrhoea so now it is a waiting game whilst the 100 crucial days pass. I get myself set up with the “Enodomondo” track app and head up to the tarn fully prepared after having my medication and wearing pants that don’t fall down and 2 tops. I manage 3 laps (a mile) alternating jogging and fast walking. Unfortunately I failed to get the “Endomondo” working so have no idea of my base pace. Arriving at hospital Steve is dozing, wakes to speak to be but then I let him go back to sleep and sit and watch him. It’s frustrating that the nurses can’t just come in and take his blood pressure and temperature without waking him to ask if it is OK to do it. He’s not feeling well but can’t explain to me what is wrong. I encourage him to eat a few snacks and drink a lot more as he just can’t be bothered and is not taking on board enough fluid. A bit of a depressing visit from my point of view but in reality everything is going according to plan and this kind of thing is to be expected. Back home Nancy arrives with a rescue pack. She’s treated me with an Indian take away and a bottle of white wine. The food goes down a treat as I haven’t fitted in a proper meal since Wednesday lunch time and the time passes quickly as we chat. Just what I needed.
KEIGHLEY – ST JAMES 7 (+1)

SUNDAY 7 OCTOBER – In the afternoon Claire drives us to the hospital. Steve is still very low, medically good but mentally not and says his body feels really strange. They take another stool sample to check on progress. I give him a back massage and coax him to drink more and Claire chats a bit but he isn’t much interested in anything. On the way back we call in at the hand car wash in Shipley. For £5 they do a brilliant job and even open doors and boots to wipe the rims and use special cleaner on the windows, reckon I will be taking Mums car there next time. I check on the Internet and see that Claire’s friend Catherine complete the Chester marathon after a difficult time at 21 miles, she has raised £600 on our behalf for the Penny Brohn cancer centre which is brilliant.
KEIGHLEY – ST JAMES 8 (+2)

MONDAY 8 OCTOBER – I call down to the Docs to get my blood test results, all normal which is strange! Next stop is Moms where we go out shopping to get her some winter curtains for the lounge and bedroom and at Yorkshire Linens find some lovely deep red lined ones reduced from £80 to £20. Before catching the train there is time for a carvery dinner at The Beeches. Steve seems a little better and responds well to a back massage. The nurse explains that now his neutrofils and immunity are down he will feel like he has flu, no doubt the man variety, and this will explain much of how he feels. A train gets me to Guiseley station where Mick picks me up. Lisa cooks up a tasty Thai curry which goes well with a nice glass of wine. They normally stay up until about midnight but by 11 I am whacked and retire to bed after a nice relaxing evening.
YEADON – ST JAMES 9 (+3)

TUESDAY 9 OCTOBER – When I get up there is only Lisa home as she has Tuesdays off from work. Today they are supposed to be delivering a new panel to front her washing machine and she is first on the list. After numerous phone calls it still hasn’t arrive when I leave just before 12. Near the hospital I am sat on the bus and see a “Google” camera car come down the road, it has to stop right at the side of the bus so I press my face towards the window to study the camera system then realise I could end up looking a right wally if it my squashed face ends up on Google street maps. Today feels is also feeling sickly and not eating much. The nurse wants him to get out of a bed a bit more and I coax him into a chair and begin to give him a foot massage. Bad move as the stink to high heaven turns out that since he nearly fainted in the shower a few days ago he hasn’t attempted to wash them. I mention to the nurse that I am going to get him into the shower and if they can begin changing his bedding whilst he is in there he will have to go back to the chair! I give him a real good scrub and although he sits back in the chair he is quick to return to bed once the nurse has finished. By taking him different drinks and small snacks I manage to get him to eat and drink a bit but the clincher is when sister says he has lost 2 kg since yesterday and if he keeps losing at this rate they will have to put a tube in to feed him. Mom picks me up at the station and I check out the curtains which will look nice, of course now I have let myself in for the job of ironing and fitting them another day. Dad’s back from respite and has put on 2lbs (maybe I need to send Steve there) and also gained a new walking frame with a seat which seems to give him confidence to go further.
KEIGHLEY – ST JAMES 12 (+4)

WEDNESDAY 10 OCTOBER – When I call Steve he says he again vomited his tablets last night but didn’t replace them, he even showed them to the nurse as they were complete in the sick bowl but she didn’t want to give more. I phone and speak to Sister who says they are dealing with it all and will give him sickness medication in a syringe driver, may stop the particular tablet that is causing a problem if his counts are up and give him the others in smaller versions. I meet Sandra in Keighley and in her car where head to Farsley where her daughter Philippa lives. She works from home and we drive by the house but can’t stop as Phillipa has a bad cold but we wander around the village of Farsley then have lunch at The Village Inn. We’ve spotted a nice homemade cake shop in the village and pick up fudge and for me millionaires shortbread as dessert. The bus takes me directly to the hospital. Steve is much the same and initially doesn’t want a massage, shower or to eat or drink much. Needless to say by the time I leave he has been sat in the chair for a foot and lower leg massage, had a shower, back massage and eaten and drunk quite a lot. I notice that when I give him the back massage, accompanied by soothing music, he relaxes more, starts to breathe slowly and more easily and stops sighing so I am sure it is of benefit. Steve’s neutrofils are now down to 0.02 induced by the pre transplant chemo. They should flat line within the next day or so at 0.00 and then it is a case of waiting for the donated stem cells to create a new immune system which is when we will see them start to rise again. I have perfected the art of not just missing each bus and train and leaving at 5 to 6 I can be back in Keighley an hour later to pick up my car. At ASDA I buy a proper winter coat, after not doing a winter for 15 years I only have a raincoat that I wear over a fleece for warmth but need to get something smarter. I seem to have hit discount time and can’t resist cooked chickens for £1 and tomato faccacia bread at 10p. I buy 3 lots and drop one at Mom & Dads then Claire calls round for a chicken on her way home. I make myself a chicken sandwich for tea and will have the rest for lunch tomorrow.
KEIGHLEY – ST JAMES 13 (+5)

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Responses

  1. Wishing you both success with the procedure!!

    Jan & Gary

    • Many thanks, have only just found the messages that come on blog !

  2. Inspiring story. Thanks for sharing the journey and the experience with fellow readers. Donating organs or bone marrow is truly like the gift of life. Donors should step up. Nowadays the extraction is painless and has fewer complications. Both bone marrow donors and recipients usually go on to live normal and healthy lives. Source : Bone marrow transplant


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