Posted by: glenswatman | October 1, 2012

20120921-30 In hospital ready for the transplant

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FRIDAY 21 SEPTEMBER – Today Steve has an 11.30am appointment at Leeds for a pre op check up. By 12.30pm we ask the receptionist if they are running late and she says “they always are”. We see registrar Marketa Wilson who confirms that the donor has now signed up agreeing to give his stem cells and these will be taken the 2 day before the transplant, in theory he could opt out before that but she says it has never happened. Steve is given a check up and pronounced fit and well so signs up for various forms of torture over the coming weeks! I’m thinking that all my visits to Leeds are going to be by train ad Tom-tom finds us yet another bad route back, completely different to the almost good one we came on and using the same criteria for the route plan! David phones and says he will come up next Saturday to see Steve in hospital then go back on Sunday so we are off to a good start.

SATURDAY 22 SEPTEMBER – It’s a nicer day but still not enough to motivate Steve. His back is aching from the bone marrow extraction and he is feeling very morose. I crack on with the washing then set out for town and decide to job between lampposts. It’s all downhill and I end up jogging the whole way to Wetherspoons (about ¾ mile), not bad going in jeans, shoes and with big coat and bag round my neck. I manage to get Steve to sit out a little in the afternoon and it’s nice to have Claire pop round in the evening. Other than that the best I can do is to keep putting on movies to stop him crawling back to bed.

SUNDAY 23 SEPTEMBER – Today I sort out the clothing Steve needs in hospital and get them all washed at 60C. We’ve been asked to wash all laundry at 60C, iron then store in a clean sealed plastic bag. The forecast for the week is lousy so we make the most of the morning and drive over to Kildwick to walk along the canal. It is not the best of towpaths, narrow and muddy in places but does lead us to the spot where 5 WW11 Polish airmen died when the wing fell off their plane and it crashed. There’s a sign and a memorial and a couple of ladies arrive with a wreath. Today is the anniversary of the crash and the elderly lady’s husband organised the memorial. There are many boats on the canal and it is probably quite cosy on board as we see the smoke from the fire chimneys, we’re a bit chilly although Steve is rugged up in big coat, hat and gloves. In the lay by is a canteen van so Steve tucks into bacon butty and I warm up with a cup of coffee. I’m glad to have done the walk myself as my thighs are really aching after yesterdays jog, maybe downhill jogs have their downsides or is it just my complete lack of fitness? We talk about his upcoming hospital visit and I have realised this is so much harder than before as we have know about it for so long. In the past his initial admission was the same day as diagnosis, when he got seriously ill he was taken in when we called in to hospital with concerns about a back ache and the rest have been for routine chemo. In the afternoon the rain arrives with strong winds so we settle in to watch the last episodes of “The Shadow Line” and the girl who kicked the hornets’ nest movie. So much better than the rubbish on TV or programmes with adverts.

MONDAY 24 SEPTEMBER – It’s rainy and windy and takes until dinner time for Steve to crawl out of the pit. He says he is in training for hospital don’t feel like going out shopping so make some scones for tea and realise my oven thermostat has gone.

TUESDAY 25 SEPTEMBER – Whilst Steve has his ultrasound in the afternoon I pick up a few things at Morissons. I’m buying things for Steve to take to hospital where he will have a fridge and kettle in his room. Anything he opens must be consumed immediately or taken away so I buy small individual packs of most things except chocolate that I am happy to take away!

WEDNESDAY 26 SEPTEMBER – |I manage to get the back log of washing out and dried. Ray surprises us with a visit at lunch time and Claire pops round at tea time which breaks up our boring monotonous life.

THURSDAY 27 SEPTEMBER – Today I was all the stuff Steve is taking into hospital at 60C, iron it and seal it in a plastic bag. I cook a roast beef “Sunday dinner” style lunch as there is an outside chance there will be a bed free and Steve will be called in tonight. We make the most of the dry weather and walk left along the canal at Riddlesden again viewing many lovely properties.

FRIDAY 28 SEPTEMBER – We both get up early shower with the special gel and put on clean freshly ironed clothes. When Steve calls the hospital at 10am they say there isn’t a bed as yet so they will call us later when one is ready. Between downpours we manage a couple of laps of the tarn and I jog for a small part of it. We get the call for him to go in for 4pm. It’s another bad journey with lots of traffic and stupid routing from Tom-tom and takes 1 ½ hours. Not a problem as the room has to be cleaned so we are put in a waiting room. Pharmacist Helen has a long talk with us about the 101 chemo and other drugs that will be used. Basically they have done this transplant enough times to anticipate side effects and cover them with drugs but if Steve has any problems he must speak up sooner rather than later so they can deal with it. The room is pleasant and modern and luckily we are in an end wing on the corner so have lovely views. He has an en suite shower room complete with sign describing a scale of types of poo. There’s a pay TV system, we take the basic package, £45 for 30 days of 5 TV channels, 4 radio stations and free landline calls. After checking Steve’s vitals they start his first chemo of Fludarabine and he will have this every day until Wednesday. Today is classed as -7 and we will count back to 0 which will be transplant day next Friday and from then on the next 100 days are really crucial. The Doctor still hasn’t arrived after 8pm so I head off home in the rain and by luck, as Tom-tom wasn’t working at first, find a much better way home. Have a bit of a dull brain moment leaving ASDA. I’m sat in car with lights on, wipers on for the rain that is hammering down and in first gear but the car won’t move. Try reverse and still no success, suddenly I realise I haven’t turned on the ignition!

SATURDAY 29 SEPTEMBER – With my family day rover (2 adults and kids £10.40) I catch the bus from home to the bus station. The connections with the train are bad so I opt for the 1 hour 40 minute scenic bus journey. It’s a double decker and I have lovely views and enjoy the journey but wouldn’t want to be doing it every day for the next 6 weeks. David has caught a bus in from Manchester and we meet at Leeds bus station. He surprises me with 2 cheques totalling almost £200 for Anthony Nolan trust and Penny Brohn cancer centre. He spent 3 days last weekend with his stepson Daryl doing a charity car wash to raise the money. People paid whatever they wanted with donations ranging from £2 to £20. Feel quite a lump in my throat when he tells me all about it. With time to spare we wander round and I fuel him up with a big (2 of everything including drinks) breakfast in a market cafe. We walk to the hospital and it’s not too far at all. Steve is looking well and sat out of bed watching TV. He had a rude awakening at 5am when they came to take his blood and has had more tablets but won’t have the chemo until later. He’s really pleased when David shows him the cheques. The set up here is a bit different. Tablets are served in bun cases and when the bed is changed the mattress and framework are all cleaned with anti bacterial wipes. So far Steve reckons the food is even worse than at Bradford Royal Infirmary so David and I walk to the nearby Costcutter to buy him a load of snacks. When we get back Sister tells us that Steve’s blood counts are all good so he is not in isolation and can wander the hospital and even go outside. The minute the football finishes on TV we head off for a wander around but stepping outside find there is a change in the weather and an icy wind. Newspapers headlines say that within the next week we should get an arctic blast from Iceland including snow. Steve encourages us to leave before 6pm. We take a bus to the train station then wait almost half an hour for the train. Back in Keighley we have 45 minutes to spare for the bus so pop into ASDA for some things for tea. When we get to the bus station there is no bus. I’ve been given an out of date timetable and now the buses to where we live stop running at 6.30pm. We hop in a taxi and arrive home around 8.15pm. Got to get a better plan going or I am going to spend half my days on public transport. David takes command of the remote control whilst I cook up the pizza and garlic bread followed by cheesecake and then I leave him to it watching match of the day. He’s ensconced on the sofa bed puffing away at his new toy – a very realistic electric cigarette.

SUNDAY 30 SEPTEMBER – David asked if he could have a lie in as he is working tonight. We call in to Claire’s and see the kids and then Mom & Dads before finding a well lit safe parking place near the train station. In future I will drive to this place and then catch the train. Steve is still doing really well although he has already lost almost ½ kilo due to the small meals they are serving. He only had a small bowl of cereal this morning and asked if he could have toast as well, was told yes but it never came. He also doesn’t have me around shoving food and drink into his face every hour! He and David have a good chat about football and other things then we walk down to the entrance ready for David to leave and his second lot of visitors to arrive. Netty & Mark have driven up from the Midlands and arrive along with Lisa & Mick. They are very impressed by the modern hospital and say it doesn’t look or smell like one. We take it in turns to sit in with Steve as he is only allowed 3 visitors at a time. Steve is feeling well but I have noticed that his knees and ankles are swollen, bright red and burning up. The Doctor checks him over and says it is probably caused by one of the new tablets he is on. The drugs are necessary so unless it gets worse the best thing is for Steve to tolerate it. We all leave together to go back to Lisa & Mick’s house. Netty & Mark head off first and I stay chatting until Lisa & Mick run me home.




    Interesting to read your Blog Glen as always.
    Just to wish you well- and to say that we are thinking of you and will be on FRIDAY especially!Lots of positive vibes heading your way from sunny (at the moment)Spain.
    We had ALOT of rain last Friday as you will have read in the media..and I thought the pool was going to overflow into our garden!
    We have some temporary neighbours from STOKE- so we bought them some oat cakes from the market on Saturday for ‘old times sake’.Very good they were too!
    We were in Uk a few weeks ago for my mother’s 90 th Birthday celebration in the Cotwolds- and then we headed up to Eccleshall to Bob’s sister for a couple of days- all those lovely parts of late summer- GREEN everywhere (due to the excess rain i know!) and BLACKBERRIES etc! Can’t get those things here!
    The apartment has rented well this summer- we have Poles in there at the moment.Inbetween whiles we have spent some great times there ourselves, managing a few kayak trips and some diving/snorkelling amongst the ENORMOUS jellyfish!Bob even managed to get stung by one!

    Anyway, all the very very best.
    Will hope to read in the next blog that you are well on the road to recovery- and planning your next trip to SPAIN!!
    Alison and Bob

    • What a lot of your messages I have missed, probably best to Email future ones to as I always pick those up and would have liked to have read these out to Steve at the time. Thanks

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