Posted by: glenswatman | November 1, 2012

20121021-31 Coming out of hospital

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SUNDAY 21 OCTOBER – Nancy comes down and I do us a full cooked breakfast after which we attempt to walk it off. I’ve got a leaflet on a walk around Parkwood and up by the quarries. We walk up the hill by Parkwood flats then find the track is too muddy to get through. Doubling back we walk to the end of the walk and manage to do most of it in reverse as this section is on cobblestones. The trees are looking lovely in their autumnal colours and the views are really good. It’s very steep so we really know we have had some exercise. Arriving a little early in Leeds I explore the area down but the river and have yet to do the “owl trail”. Steve is now managing to eat hot food without being sick. He’s allowed out of his room so we venture down the corridor and into a waiting room where he puts in 0.5km on the exercise bike, a good start but it’s not going to get him back to Keighley. His blood counts are going up nicely which is reassuring so overall all looking good. I join Claire and family for a wonderful Sunday roast beef dinner before returning home.

MONDAY 22 OCTOBER – It’s a miserable drizzly day as I head off to Leeds. At the MacMillan centre I really enjoy the full body massage done by Joanne. It’s still early so I complete my visit to the Thackray Museum. Today Steve’s white blood counts are up to 1.10 and neutrofils 0.89 so we are pretty close to him coming home and Dr Gilleece is pleased with how things are going. I get a phone call from Mystery Shoppers asking if I would like an assignment to go to a restaurant in Ilkley. It must be done this week and they will pay up to £60 for a 3 course meal for 2 plus £25 for doing the job – now let me think about this for a second! Steve manages a bit of a walk around but feels light headed when he attempts the exercise bike. In the evening I head to Wakefield where Cousin Karen meets me at the train station. She cooks us spaghetti bolognaise and tells me about her recent encounter through one of the internet dating sites. She’s having trouble using the computer so I help to speed it up and get her set up on MSN so she can chat to Brett who is serving in Afghanistan.

TUESDAY 23 OCTOBER – Karen is off work as the Sky TV people are coming but she has time to drop me at the station before they arrive. The Wakefield trains are really nice, last night’s was on its way to Plymouth and this morning one has come from Stevenage. They have free Wi-Fi and plusher wider seats than the local trains. Back at the Dental Clinic they try to deal with the recently filled tooth that feels high and is making the ones above it ache. They gradually file it down and I can now shut my mouth properly and it should be easier for eating but still feels somewhat strange and I am now concerned that it is the tooth in front (the one I had the root canal work done on last year) that is stopping my mouth closing properly. It’s only 11.30am when I’m finished so call the hospital who say I can make an early visit. Steve is doing well and has been eating proper meals. A nurse comes in to remove his anti sickness syringe driver. She tells us at the morning meeting they discussed Steve going home as his counts are over 1.0 but the feeling was it would be better to take the syringe driver out and let him stay overnight to be sure his sickness is under control and we both agree. To add to that I have not come in the car, the house is not ready and I was planning on doing my assignment tonight. Half an hour later Dr Marketa comes in, checks Steve’s heart and lungs and says “right you can go home now”. We explain what has already been said and she agrees tomorrow would be better all round. I leave early, pick up the special delivery card at home and head to the sorting office to pick up my spy camera. Oops the sorting office closes early on Tuesday so that’s the end of tonight’s plan. Spend the evening disinfecting and cleaning as much as possible at home.

WEDNESDAY 24 OCTOBER – I’m up early changing the bedding, giving the house a final dust and vacuum. There’s a hold up en route to Leeds at Armley Park. Something serious has obviously happened as there the park is cordoned off and there are numerous Police vehicles, Ambulance and press. Inside the park many areas are being dug up and people are standing around where the white protective suits. On the ward Steve is dressed and his bags are packed but we must wait for his medication, instructions and his line to be cleaned. Luke talks us through the 2 carrier backs full of tablets and liquids, in all 25 things to be taken throughout the day. As soon as we get home Steve is up for an egg and chip dinner which he really enjoys. Whilst he has a nap I unpack the bags and crack on with sorting out laundry. From now on Steve will go to Bradford Royal Infirmary on Mondays and Fridays and St James each Wednesday. We both sleep badly; Steve has a frozen shoulder on one side and an inflamed arm on the other where he got an infection from his syringe driver so ends up on his back snoring. No wonder the discharge chapter of the help book suggested making up a bed in the spare room – that’s assuming you have a spare room.
KEIGHLEY – (+19)

THURSDAY 25 OCTOBER – Steve is very sleepy so I leave him in bed whilst I do an ASDA shop for food that is on his “clean diet”. I’m due to go out on my restaurant spy job tonight but notice on line it is only open on Friday evenings and a phone call confirms this. I contact the company and let Claire know she won’t be going out for dinner. Later the Mystery Shopper company call back and say that they phoned the restaurant and initially were told it was closed tonight but then someone else came on the line and said it was open. I explain it is really too late for me to rearrange so they say I can do it tomorrow. Although we attempt to sleep together I give up in the early hours and move onto the sofa bed in the lounge, deciding pretty quickly that a memory foam mattress topper needs buying.
KEIGHLEY – (+20)

FRIDAY 26 OCTOBER – It’s really helpful that we awake to a sunny day as Steve has to go out. We call in to visit his Mum who is having problems with her leg and food. Whilst there I make some phone calls. Turns out my yahoo account has been infiltrated and also I have had my credit card fraudulently used (don’t know if there is a connection or not). After a couple of calls the credit card is cancelled and a new one will be sent out and the dodgy transactions cancelled. At Bradford Royal Infirmary they are amazed how well Steve is and that he is out so soon. They do his bloods and say they will call if there are any problems so it’s a very quick visit. It’s such a nice day that Steve agrees to a walk around Myrtle Park in Bingley and he does really well and walks at a reasonable pace. He even volunteers to walk up to the post box when we get home. Seems that once I can get him out he is much better as back home he crawls into the sofa bed and ends up restless and doing lots of involuntary moaning and groaning. In the evening I pick up Sandra to join me for my assignment. The restaurant is within a retirement complex in Ilkley and looks really posh. Unfortunately the service is not up to scratch and after arriving at 5.30pm it is 8.20pm when we leave. Even then Sandra had to go into the kitchens to find someone to ask for the bill. Sadly my write up will not be all that favourable and I am sure the company who requested the survey will not be pleased with what they see on the video however Sandra and I have enjoyed our free 3 course dinner for which I had £60 to spend and then get £25 wage – how good is that.
KEIGHLEY – (+21)

SATURDAY 27 OCTOBER – I leave Steve in bed whilst I take the bus to town to try and buy a mattress topper. Research indicates that for on top of a mattress the 2” depth is best but the ones I can buy are either much thinner or 4” and very expensive. Back home I order one from E-bay but it won’t be delivered until the end of next week. Making the most of the pleasant day I do some gardening and trim back the bushes for winter, and then read in the Daily Mail that this is better done in February! Steve spends the day shuffling from bedroom to lounge and walking around restlessly although I do manage to get him out for a brief walk up the street in the afternoon but the cold wind makes it unpleasant. In the evening he lies in bed whilst I watch “Strictly come dancing” then I retire to bed whilst he commandeers the TV for the football.

SUNDAY 28 OCTOBER – The clocks went back last night so we now have slightly lighter mornings but it will be dark by about 5pm which is not nice. Steve can’t seem to get his act together in the morning and aborts an attempted shower in favour of climbing back in bed. We are supposed to be going for a drive out and lunch with Keith & Sandra but this is amended in favour of a drive out for coffee. Even this fails as leaving Keighley Steve begins to look unwell. We opt for picking up some nice bread, meats and cakes from Sainsbury and heading home for sandwiches and cream cakes. Steve can’t really explain how he feels but says it’s like he is in a strange body and this makes him feel claustrophobic. Keith and Sandra stay until 4pm and we have a good chat but the minute they leave Steve heads to bed.

MONDAY 29 OCTOBER – We call in at Moms and find out more about the DVT in her leg. A district nurse is giving her daily injections and on Thursday she will go to Airedale to start warfarin. At BRI Steve is welcomed back and chats to clinical specialist nurse Sally and Dr Ackroyd. They both say how well he looks and that he can now cut out one of the two sickness tablets as he has not been or felt sick since coming home. The do his blood pressure and temperature and take blood for testing and will call if there are any problems. On the way home Steve agrees to lunch at the Toby Grill carvery. The restaurant is busy but there is a bar room where you can also dine and it is completely empty. Unfortunately by the time we come back with our meal it is full of families with noisy kids and potentially dangerous kids for Steve. If he contracts a childhood illness like measles it could kill him. We eat quickly and leave.
KEIGHLYE – (+24)

TUESDAY 30 OCTOBER – So day 25 which means Steve is a quarter of the way through his crucial period. I leave him in bed when Sandra picks me up. She is a member of the Stumblers walking group and I am joining them. Chris is in the car and we pick up Mary before heading off to Hardcastle Crags. I will be the baby of the group with Mary, mother of 11, the eldest. In the car park we meet the rest of the group and head off along the river bank. It is a delightful walk with stunning autumn foliage, luckily this group amble along giving you plenty of time to enjoy the scenery and take photos. The Stompers sister group walk much faster but to an extent you almost don’t have time to take in the area you are walking through. Suspect I would like something in the middle but for now this is lovely. We picnic by the mill before heading further but have to turn back as one of the bridges has been washed away during the recent floods. Overall we walk just over 5 miles in 3 ½ hours so no rushing but it was really nice to chat to people and still good exercise. Steve is still in bed when I get back and hasn’t even got himself lunch having declined my offer to make him sandwiches. He reluctantly gets showered and dressed so we can go to Keith & Sandra’s for a meal. She has cooked one of his favourites gammon, pineapple, egg and chips but he struggles to get through much of it and retires to the sofa, emerging again for the rice pudding. It’s obvious he is not well so we head home. Lesson learnt in that it is not good to try to get him out on a cold evening. When we get home “Pride of Britain” is on and features a 16 year old girl called Alice Pyne who 4 years ago was diagnosed with Hodgkins Lymphoma. She was too ill to have a bone marrow transplant but saw others who couldn’t find a donor so on her bucket list she set out to attract more donors. As the Anthony Nolan trust has reduced the age to 16 her first challenge was to recruit pupils at her school. Since then she has encourage 40,000 new people to sign up, could easily be that one of those was Steve’s donor. Just wish there was a way that we could encourage more 16 – 30 year olds to sign up as I am sure if they understood the procedure was much like blood donating they would not be afraid.
KEIGHLEY – (+25)

WEDNESDAY 31 OCTOBER – We have an afternoon appointment at St James and Steve goes straight through to the day unit for bloods whilst I go back to the ward to drop off a gift and card. The nurse who takes his blood was on the ward and remembers him when he was very sick so can see quite an improvement and says it is nice to see him smiling. Within 10 minute of having his blood taken Dr Krishnan calls to say he has the results and is ready to see Steve, amazingly quick. Steve’s blood counts are up a bit which is good. The ciclosporin immunosuppressant drug is moderating some counts but also making him feel so lethargic and giving him other side effects like trembles, restless legs etc. Basically it is a case of get used to it as he will be on this drug at least for the 100 days. Overall they are very pleased with him and say he can cut out the other sickness drug and also drop to twice weekly visits and the other one can be arranged for Airedale. The one thing we still have to be wary of is him getting CMV (cyclomegalovirus) as his lymphocytes are still only 0.03 and until they reach 1.0 he is vulnerable. This count can only come up naturally. As usual we catch the rush hour traffic and it takes over 1 ½ hours to get back but as it is not recommended for Steve to use public transport we have no choice. Unfortunately he is losing his appetite for proper meals and after beans on toast for lunch he just wants soup for tea. I continue to sleep on the sofa bed in the lounge but it should be more comfy after my delivery of a memory foam topper tomorrow.
KEIGHLEY – (+26)



  1. So glad to hear that things seem to be progressing well! Keep up the good work both of you- must be a struggle but now there is a light at the end of your dark tunnel! If only the clocks were going forward soon- this clocks ‘back’ bit is so depressing!
    Thought of you today when we were at the apartment- and wishing we could do a ‘BEWITCHED nose wiggle’ and bring you both over for a couple of days! The sun was shining and it was warm- but the surf was phenomenal- and then Bob decided to take a trip out in the kayak!!SURFING BACKWARDS was the order of the day!
    Anyway- continue to ‘keep us posted’…;
    Love A and B

    • Have only just found all these messages on the blog so apologies for not commenting on previous ones.

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