Posted by: glenswatman | December 13, 2012

20121201-10 The great escape and a few treats

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SATURDAY 1 DECEMBER 2012 – I call up to visit Claire at work as she has printed out documents for my next mystery shopper assignment – a visit to ten pin bowling for a family of 4 with £50 to spend and £15 fee, how good is that? I’ve also been in touch, through the Facebook bone marrow transplant survivors group, with Bob in USA who is in his 50’s, had ALL and a transplant 2 years ago. He’s now fitter than ever and cycling hundreds of miles for charity – very inspiring. This has led me to the American bone marrow group who have a great post transplant book that Claire has also printed for me to take in to Steve. It’s another cold day but Steve is ready to go walking and this time we discover “Oriental City” Chinese restaurant, only a 10 minute walk from the hospital. We explore more of the area before heading back to watch a movie. This morning Steve had a rash on his body and after his massage it has appeared again. Nurse Joy checks it out and prescribes an antihistamine “piriton” which is put into his Hickman line. Just hope this is not an early indicator of graft versus host disease.
KEIGHLEY – ST JAMES 23 (+57)

SUNDAY 2 DECEMBER – Keith & Sandra pick me up and head to Leeds to pick up Steve. In Harewood we have a Sunday lunch at the Harewood Arms before heading to Harewood House. Winter admission is £10 for a combined ticket, the house, below stairs and the gardens. The house is magnificent with fantastic ceilings but unfortunately you only get to see about half a dozen rooms and can’t take any photos. Below stairs tells the story of the servants and their roles. Finally we take a walk through the gardens including an aviary, lakeside walk and Himalaya gardens. Steve is happy to be dropped off outside the hospital as we head home, think I can trust him to go back in!
KEIGHLEY – ST JAMES 24 (+58)

MONDAY 3 DECEMBER – We head out to explore a different area near the hospital. Admiring a perfect rainbow ahead of us we turn around to see a black sky and rain heading our way. It’s not far to the Thackray museum where Steve completes his tour. At the Robert Ogden centre we have drinks and book Steve a hand and foot massage for tomorrow and cranial therapy on Thursday. Back at the hospital it is about 4.30pm when the Aussie family arrive. Jeff, Jen, Will and Kel bought Eddie our motorhome and have just sold it in Spain and after visiting friends in Glasgow have detoured to see us. It’s so nice to catch up with them again and over a Chinese meal at Oriental City we hear more about their adventures. After putting Steve back in his kennel for his evening drip we head back to Keighley where I show them the studio they will be staying in tonight. Get chance to quickly introduce them to Mom then head to the bungalow to pick up some bedding for the kids to use on the sofa bed. Jeff & Jen, who are in the medical profession, makes lots of comments about how well Steve is doing and this is very reassuring.
KEIGHLEY – ST JAMES 25 (+59)

TUESDAY 4 DECEMBER – The Aussie family come round for breakfast and we chat more about their trip and possible future plans that they have. Before visiting Steve I call in for a hand and foot massage. Today we walk the Harehills area of Leeds; it seems Steve can cope with really long walks now without showing any signs or tiredness. Back in Keighley I drive up to Claries for a meal and entertainment provided by Daniel who shows Natasha and me how to do zumba. Back home there has been a delivery of cards and a luxury box of chocolates. I’m feeling a little sorry for myself thinking about being alone tomorrow night so console myself with half a dozen chocolates and a new plan to get myself a hotel in Leeds tomorrow.
KEIGHLEY – ST JAMES 26 (+60)

WEDNESDAY 5 DECEMBER – My 56th birthday and what a year it has been since this day last year when Steve was diagnosed. It’s quite an emotional day as I am really happy that Steve is doing so well but I still feel quite churned up and the many cards and presents serve to bring me to tears whilst I laugh at myself at the same time. Sandra joins me for the journey to the hospital where we get the good news that Steve’s CMV count is down below 500. They have taken another sample today and if it comes back below 200 he can come home. We walk into Leeds to have lunch at Po’s Chinese on Vicar Lane, the place we went with Claire and Natasha. After walking Sandra to the bus station she heads home whilst we walk back to the hospital. I’ve applied for a room at the Patient Hotel within the hospital but they can’t release rooms to non patients until after 2pm. I get a call to say we can have a twin room and because the ward have said Steve can stay with me in it overnight they will waiver the £25 fee and charge us the patient rate of nothing. The room is huge with twin beds, sofa, TV, tea and coffee and en suite. Much like a regular hotel although with hospital bedding etc it doesn’t work out to feel like one. Steve returns to the ward for his evening drip and medication then back to me to spend the night which is a real treat
St JAMES PATIENT HOTEL LEEDS – ST JAMES27 (+61)

THURSDAY 6 DECEMBER – Steve returns to the ward for his medication and breakfast then I join him at 10am. Shortly after the nurse tells us they need to do some room changes to accommodate someone who needs Steve’s positive air room as they have an infection. It involves 3 people swapping and as Steve is allowed out of his room we are evicted to the visiting room until the thorough cleaning and changes can take place. Nick arrives to give Steve some craniosacral therapy. This seems to be a mixture of drawing energy in and having someone press on pressure points and Nick teaches me how to do some of it. In the other waiting room we meet Malcolm who is 53 and also has ALL. However he has a stomach infection, that led to his diagnosis, and they can’t treat that and the leukaemia so have only given him a 20% chance of survival. He’s a Buddhist and has spent lots of time in India and living in a bus type campervan so it makes for an interesting talk. With Steve’s blood tests unlikely to be back before tomorrow morning I head off early and arrive home just before 5pm. 10 minutes later I get a call from Steve to say they are discharging him as his count is 444. This contradicts the information Dr Suresh gave us yesterday so I suggest Steve speaks to him to confirm this and Suresh says the new guidelines are 2 counts under 500 even though it was he that told us differently. I suspect that the fact they have another patient needing a bed is also factored in. I figure that if Claire can pick up Steve I have time to get the bungalow ready and by the time he arrives just before 8pm everything is thoroughly cleaned. It’s lovely to have him home again especially as he seems so well. He must go back on Monday and Wednesday next week so we have 3 days without hospital appointments. Surprisingly we both sleep badly in the same bed, must be out of practice.
KEIGHLEY (+62)

FRIDAY 7 DECEMBER – At Keighley College I have an electronic facial. For 1 hour I lie back to be pampered with gel on my face that is activated by an electric roller. I do have a slight concern when the therapist insists I hold on to a rod covered in a damp sponge to complete the circuit. It reminds me of a movie where they put someone in the electric chair and one of the prison officers deliberately forgot to put the damp sponge on his head causing a terribly slow painful death. I cling on the rod like grim death. Unfortunately this was the last day of this particular course and with the college closing for Christmas I won’t be able to book anything else until January, reckon at £11 a time I could handle something like that each week. Steve has walked down from home and meets me in ASDA where he copes well with doing a bit of shopping, a far cry from a few weeks ago when he would have not been able to handle it. I’m trying to create more of an alkaline diet and after shopping for predominantly alkaline foods I return and make an Italian style vegetable soup for dinner. In the evening Steve drives, first time since transplant, to Sandra & Keith’s. We notice lots of good Christmas decoration displays including a garden with a Santa ski-ing. Sandra spoils us with a lovely roast pork dinner and apple crumble and custard. Having seen all the Christmas cards at Sandra’s I am spurred into action and begin by returning home and ordering some on line with “funky pigeon”.
KEIGHLEY – (+64)

SATURDAY 8 DECEMBER – I want to buy a few Christmas things so Steve walks downtown with me and other than needing a bit of a push walking back up the hill he does really well. I’ve bought 10 Christmas items from Poundland and proceed to decorate the lounge and all things considered it doesn’t look too bad, even though we do have a motorhome sized Christmas tree. Claire ends her long run at our house and I drive her home but first detour to see the house she will be renting in Oakworth. In the afternoon it is the Christmas Party at Farish House. Steve’s sisters are there but Netty has a cold so it is just David & Donna that I pick up afterwards. After taking them to visit Claire we return to the bungalow for a bite to eat and a chat. I’ve booked them the studio for the night so Steve drops them there.
KEIGHLEY – (+65)

SUNDAY 9 DECEMBER – We attempt a walk round the local area stating off uphill. It’s really cold and Steve needs too much pushing for me so we cut it short. In the afternoon our friends Stan & Judy call round. They recently did a trek in the Himalayas and we are eager to hear all about it. They’ve not long left when we get a call to pick up David and Donna. I’ve cooked us all a roast beef dinner and they have bought me a couple of granite trivets as a present, maybe they were not impressed with the telephone directory on the table yesterday.
KEIGHLEY – (+65)

MONDAY 10 DECEMBER – Steve has an afternoon visit to Leeds hospital but it is only for blood testing so doesn’t take long and we are reassured to hear that the basic test results are all good. In the evening Claire and the kids come round for tea, her house is almost totally packed up but with a delay in the contract signing she won’t be moving tomorrow, poor lass.
KEIGHLEY – (+66)

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