Posted by: glenswatman | August 2, 2012

20120721-31 Big decisions about Steve and my turn in hospital

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SATURDAY 21 JULY – Summer is here so I make haste and get the washing on the line. Steve walks to the paper shop with me and is noticeably quicker and more fluid. I potter round the garden then sit out reading. Later afternoon we drive up to the tarn and are surprised to see lots of big kids there with racing boats. We chat to one man and they come every Saturday from 2 – 5pm and race each other with boats achieving speeds around 50mph. The yellow boat used to be fastest with its British £500 engine but the new £240 Korean engines are leaving it standing. We do a couple of circuits at a fair pace.

SUNDAY 22 JULY – Claire & Natasha are at a swimming gala all weekend so I pick Daniel up. He loves cooking and picks a recipe from my new Vegetarian cook book, tomato and basil soup. We call in to Morrisons to get some of the ingredients and other health foods that we hope to switch to. The soup is delicious and the ham and cheese tart that follows is also good. Claire arrives with the giddy girls (Natasha & Azura) and although they only stop for about half an hour it is like a whirlwind and my food stock takes another hammering but what are Grandparents for. We’re both feeling pretty tired at the moment so an early night is in order.

MONDAY 23 JULY – Steve’s feeling a bit fed up, doesn’t help that I stuffed up his steroid tablets yesterday and gave him 1 instead of 4. He takes 4 a day for 5 days each month so comes off them tomorrow and could have done without 2 lots of withdrawal depressions. He pops down to see Dr Ward to find out about exercise on prescription, not available to cancer patients in Yorkshire. He gives us a phone number to make an appointment with the physio about his frozen shoulder and to ask for exercise plans. Also we get a different prescription for nourishing body building drinks to try. We pick up Natasha and Azura and head to St Ives park where they enjoy the adventure playground whilst we walk around the park. After lunch at home the girls make chocolate rice crispy cakes before I drop them home.

TUESDAY 24 JULY – Azura send a text to Claire asking what time we are picking them up as she wants to be sure Natasha is ready and the house is spotless! She does a good job as they are both ready and the house is immaculate when we arrive at 10.30am. Call in to Mom and Dad, Mom is still struggling getting a balance between the sedating pain patches and the pain in her knee. Today we park up to walk along the canal at Bingley. There are loads of swans on the far bank with the signets, quite a spectacle. Many canal boats are moored up, most look to be in permanent moorings with their gardens laid out and washing on lines. We’ve bought a picnic and stop a few times to graze before arriving at the five rise locks. Steve is still feeling pretty unwell and also queasy so lies down on the grass whilst I walk down the locks with the girls. There are narrow bridges below each lock and at the bottom one Azura manages to catch her flip flop and it falls off into the water below. The water is completely still and there is no chance of retrieving it from the far side unless a boat comes through. We return for our picnic, the girls having chosen chocolate spread sandwiches. A couple of barges head into the first lock and when they finally descend to the bottom one a man kindly retrieves Azura’s flip flop with a grapple hook. Walking back the girls stop to take a closer look at the swans then come running towards us as a couple get out of the water and chase after them hissing and with wings flapping. What an eventful outing! After dropping the kids off we return for a quiet evening but get a phone call from Steve’s best man Richard who calls in to see us for an hour.

WEDNESDAY 25 JULY – Steve lingers in bed, he has nausea, headache and hospitalitis – today we go to Leeds for the bone marrow transplant consultation. St James hospital Bexley wing is very modern and well designed. We are straight in for our 2pm consultation with Dr Gillicee. After a brief chat about ourselves she hits us with the fact they have 2 matching donors and could do the transplant at the end of August. Having been led to believe there was no match we are stunned by both facts. She tells us that she hits patients with this info so they understand that everything else she tells us is a real possibility, it certainly makes our ears prick up. The operation is not without risk and using a computer quiz the answers give Steve a guesstimate of 50% chance of living 2 years after a transplant. This is all assuming his blood tests; heart echo and lungs are all up to scratch, if not the odds drop. The operation involves an initial 5 week hospital stay and many patients have to go back again with complications. The complications, side effects and rejection details are like a horror story and if Steve was feeling sick when we arrive he is positively green by now. It’s all rather upsetting and scary even though it does give us more of a choice in the long term. Dr Gillicee says she can see that the August appointment may be too soon for us and the next option would be early October. The earlier one is what may give the best chance in terms of timing but the latter may give Steve chance to build himself up more. Knowing I have my hysterectomy next Tuesday we opt to leave the decision until we know of Steve’s test results and the new odds, whether I have keyhole or the full op and after we have met with Dr Ackroyd to learn more about Steve’s chances if he stays on chemo. Steve visits the phlebotomist who takes 17 vials of blood from Steve, the most she has ever done. Whilst he is in there I get a call from Keighley Docs to say the nurse is sick and can’t do my pre op blood pressure tomorrow but they will call me back to try and rearrange. I ask at the desk if there is any chance they can do mine whilst I am there and I wish they hadn’t agreed as it is 160/102, reckoned I must be a bit stressed! We both feel like emotional wrecks when we leave so I drive back and hitting rush hour traffic and a closure on the M62 it takes us 2-hours. We are both drained and after a bit of comfort eating, homemade chips, we settle down to a restless night.

THURSDAY 26 JULY – It comes as no surprise that we both have headaches, Steve feels sickly and my knee hurts. I’d just about finished self treating myself of housemaid’s knee but had to dash back to the car yesterday and instead of waiting for the hospital lifts I used the stairs resulting in a poorly knee again. We pop down to Mom & Dads and I leave Steve there whilst I go shopping and then to the Docs for a blood pressure check. Amazingly this morning my BP is a low 110/72 just shows what a bit of retail therapy will do. Steve’s still feeling sickly so we head straight home and I make very basic pasta for his lunch. Late afternoon the sun comes out and we attempt a walk around the Tarn but the sickness gets the better of him. Claire pops round late evening complete with her new spray tan and hairdo. The hairdresser was chatting about travel and it turns out she did my hair a few years ago when she was a student at the college and gave Claire much of our travel history before Claire made the connection.

FRIDAY 27 JULY – On Keighley freecycle I spot a lawn mower, reply immediately and half an hour later am on my way to pick it up. I do a big vegetable and fruit shop at Aldi full of good intentions although I have yet to find a vegetable juice that Steve actually likes. The lawn mower doubles up as an exercise machine as it is the old fashioned hand mower and gives my upper body a real work out. At BRI Steve is waiting to have his line cleaned when I get a text to say Natasha is in A&E with a suspected broken ankle from falling off the trampoline. By the time I get down there I get another text saying she and Daz have left and it is only sprained. Steve’s second appointment is to have his eyes checked and they tell him he now only has 5 haemorrhages behind his left eye which is an improvement from the last test. It’s the opening ceremony for the Olympics and we have a late afternoon nap hoping to stay up and see it all. We fail miserably and both fall asleep just after 11pm.

SATURDAY 28 JULY – Steve is really battling the chemo and has lots of sickness, headaches and fatigue and it is not improving, all this makes him feel the transplant may well be the better option. David & Donna arrive by bus and I pick them up at lunchtime. Mid afternoon we head up for Steve to a get a little exercise walking round the Tarn but again he only manages 1 lap. We visit Mom and Dad who are pleased to see David and Donna. Donna has lots of friends in Keighley so goes off to visit one and stay the evening whilst we return via our old Post Office to show David the extension work that is going on. In the evening we drive to Yeadon to visit Lisa and Mick in their new home. It’s a lovely 3 bed detached house and they have already got it looking really nice inside. Steve is still feeling really sickly so we don’t stay too long and pick up Donna on the way back.

SUNDAY 29 JULY – David and Donna have not slept too well on the sofa bed, may have to look into buying a mattress topper or something as it seems we are getting quite a lot of visitors. David phones his best man Michael and they all go down to visit whilst I cook dinner. When they get back Steve says he was surprised to learn that Michaels Mum (also Glenys) has chronic lymphoblastic leukaemia so he is hoping to get in touch again for a chat. The whole talk whilst David and Michael were there was about football as Michael has just come back from watching Liverpool in America and Canada. After lunch we go to Richards and introduce him to Donna and David. We continue as a taxi service dropping Dave and Donna to catch their bus back and then Claire at home.

MONDAY 30 JULY – At BRI Steve visits the orthopaedic surgeon who says he will have Steve back in 3 weeks to do an injection into his frozen shoulder. We then have a long consultation with Dr Sam Ackroyd and clinical specialist nurse Helen. There is no doubt in their minds that the transplant is the best option for Steve, even if some of his tests are not perfect it is still going to offer greater chances than staying on the maintenance. Sam thinks Steve would be stronger and fitter by October but will check with Dr Gillicee at Leeds. They will change and add some things to Steve’s medication in the hope of making him feel better. By sheer coincidence he stopped a drug the day the chemo started and some of the problems may be from that so they are restarting it. Spend the afternoon at Claire’s and after making pancakes for lunch Steve retires to bed and Natasha and I watch the Olympics. I nod off and the next thing I know Daniel has returned from work, got changed, Daz has arrived and the kids are about to leave with him. We head home and Steve rests whilst I get organised for my hospital operation tomorrow and make sure things are left as simple as possible for Steve.

TUESDAY 31 JULY – It’s a 6.15am start to get me to Airedale hospital for 7am. On the admittance ward I am checked over and deemed fit for the op. There are 3 ladies on the list and my op, being the longest, is last. It’s just before noon when I walk down to theatre. There was talk of a spinal injection but Mr Porter has overruled this and it will be just the general. In the recovery room I struggle with sickness and the shivers. They confirm I have had laparoscopic (keyhole surgery) and deal with my problems so I drift off to sleep. On ward 13 I wake in a 4 bedded room. I have difficulty moving as I have an air tube on my left side, drip and syringe driver on my right, catheter and then massage boots on my feet attached to the bottom of the bed – am I in the red room of pain? Roommates Barbara, Gerry and Nicola are very considerate and talk quietly so I can nap. A registrar comes round and says “hello how are you feeling, you’ve had this operation before haven’t you” – whoa – glad she wasn’t the one performing my TOTAL hysterectomy. Surgeon Mr Porter calls later and says the operation went very well, my womb was enlarged and had fibroids but he is completely confident they have removed everything and there are no worries about cancer in the future. If I am well enough I shall be able to go home tomorrow. Claire & Steve visit in the evening, I can see that Steve is not very well but immediately relieved to see how well I am. In truth I didn’t expect to feel this well myself and rarely have to use the morphine for pain. Steve is staying with Claire overnight so I suggest they call BRI hospital to find out how to tweak Steve’s medicine for his sickness before he goes to bed. I get very little sleep, Barbara’s drip is faulty and keeps bleeping, everyone fidgets and I struggle with the oxygen mask making my face sore, they eventually change it to nose clips allowing me to nap a little. I’m pleased to find I have virtually no pain and use little morphine.


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