Posted by: glenswatman | January 11, 2014

20140101-10 Could have had a better start to the New Year

201401
WEDNESDAY 1 JANUARY 2014 – Well if you had asked us where we thought we would have been spending New Year we would have been way off. We had expected to be in Spain and would still like to think we will be for the next one. Steve does his best bringing things in for me but I do look a bit silly in his Liverpool shirt and big baggy hospital shorts. Luckily the phlebotomist is a Liverpool fan so is extra gentle taking blood. I’m still in pain and feeling pretty grotty but press on doing my best to eat a little even though it makes me really queasy. Steve goes to Keith and Sandra’s for lunch before his visit. Sadly he is also feeling no better. This is not a good start to the New Year, maybe my resolution should be to not write about illness – wouldn’t that save me a lot of time! My pain gets worse in the evening so I phone Sandra and ask her not to visit. In fact I only manage to get through the night with a lot of morphine.
AIREDALE HOSPITAL 4

THURSDAY 2 JANUARY – I’m really washed out and fuzzy headed from all the drugs. The Doctor tells me I really need to get off the heavy pain killers and keep eating if I want to get myself home. In time the antibiotics will work and I should be able to tolerate food. They will keep me in overnight and probably longer but will let me out to go to St James for my appointment tomorrow. Steve pops to Sandra & Keith’s to have a soak in their bath in the hope of easing his pain. He’s only been with me about 10 minutes when David and Donna arrive. I enjoy their visit but feel weary after. I’m still having 3 types of anti biotics, on medication for thrush to counteract the effects of them and now getting constipated so they offer laxative to get ahead of that problem, what a circus. If only they had done my keyhole operation weeks ago I would only have needed to be in hospital for ½ day, now the NHS is paying out for at least 5 nights, plus all the medication and I still need the operation – sounds a bit like false economy to me. I improve as the day goes on and get through the night with just paracetamol and “Buscopan”.
AIREDALE HOSPITAL 5

FRIDAY 3 JANUARY – I enjoy a wonderful soak in a deep bath, probably the best medicine for many ailments. The registrar tells me I can go home and report back after going to St James hospital. He says it will still be 6 – 8 weeks before they can do my gall bladder removal if Leeds won’t. I do challenge this so the main Doctor comes to see me and says they will give me priority and it could be done sooner but she really thinks Leeds will be taking over. Essentially now I just have to get by on basic pain killers and figuring out what I can eat that doesn’t make matters worse. Steve picks me up and we call back to our “student digs” for an hour before going to Leeds. Steve puts on a brave face but I can tell he is in agony driving but less so that I would be. Whilst I am waiting for my appointment he goes to see Suzanne who tells Steve the drugs he has been put on are a mild anti-depressant to suppress the pain but can take 4 weeks to kick in, meanwhile you have to figure how many between 1 and 4 tablets you need but without knowing the outcome. Dr Andy Smith is a really nice man and sits us both down and talks through my recent medical history and problems. He says the mass inside my spleen should not be disturbed so they will remove the whole spleen intact, all being well by keyhole and he will throw in the gall bladder for free at the same time. We’re at the Bexley Wing where Steve has his treatment and Dr Smith is another cancer surgeon so understands our predicament in terms of caring for each other. With that in mind he says he will operate in about 3 weeks time (but just needs to double check with haematology about the tumour) and sends me off for my pre op assessment. A few weeks ago during a 5 year asthma check the nurse thought I had an irregular pulse but did nothing about it. On admission to Airedale they found the same but then had a heart monitor on me and said all was fine. It must be an intermittent problem as today it shows up on the heart monitor. The cardiologist says it should not be a problem as it is occasional missing bits as opposed to a rapid beat. I’m absolutely whacked so Steve drops me at home before calling back to Airedale for my discharge papers and medicines. We both manage a bit of sleep, probably due to sheer exhaustion.
KEIGHLEY

SATURDAY 4 JANUARY – David and Donna call to say Good-bye but I’m in the shower and Steve doesn’t hear them. I really struggle to eat or drink anything and have lost a good half a stone since Christmas. Claire arrives early afternoon and takes all the Christmas decorations down, cleans the whole bungalow, does washing, ironing and takes me to the shops. I only spend a short time picking out the special things that my gall bladder should be able to tolerate and then leave Claire to finish off. She’s been a massive help as I really don’t think we could have got the place sorted ourselves but now it is done we can keep up. She leaves around 3pm and I head to bed and sleep until 6pm. Steve ends up getting up in the night as the shingles is driving him crazy.
KEIGHLEY

SUNDAY 5 JANUARY – I’m having slightly less pain so can help a bit to give Steve a break as he is in a bad way. I feel really weak so have to do things in fits and starts. At least we both really enjoy the pepper, tomato and onion soup I’ve made.
KEIGHLEY

MONDAY 6 JANUARY – Isn’t it funny how you can have a terrible night’s sleep then get off early morning. Steve’s spent the night on the sofa and after breakfast we both return to bed together and have a good snooze. Steve is convinced my reiki is helping so I’m happy to give it a whirl. I’m feeling a little better again although still weak and with a nagging ache. Doing research on line about my spleen removal confirms that I will have a weak immune system for life and be ill advised to visit any malaria infected countries, basically ruling out everything between the two tropics. Quite a blow but realistically these would all have been places that could have been dangerous for Steve too. Still we’ve got the Caribbean, North America, Australia and Europe to go at. I also learn that I should wear a Medic Alert bracelet so reckon we will treat ourselves to his and hers versions as a belated Christmas present.
KEIGHLEY

TUESDAY 7 JANUARY – Steve has chemo and lumbar puncture in Leeds and as I am not feeling that well our friends Keith and Sandra offer to take him. He’s out a long time from 10am until 6pm but it has all gone well. As usual he now needs to lie flat out for a day or two to prevent the bad headache, looks like we are going to be sleeping apart a little longer.
KEIGHELY

WEDNESDAY 8 JANUARY – Goosemoor organics deliver organic fruit and veg so I arrange for a drop of a large veggie box £20 and a fruit box £15. There’s a great range of produce and it’s like Christmas as I unpack it all. By evening we are both feeling a bit ropey. Steve’s in a lot of pain, mainly from shingles and I am getting pain again even though I have eaten nothing fatty just little and often.
KEIGHLEY

THURSDAY 9 JANUARY – Early hours and I am in agony. After an hour of vomiting I phone 999 in desperation. Steve’s isn’t well enough to take me to hospital and that is where I need to be. They give me morphine and settle me down enough to go to Airedale in the ambulance. Once there the opinion is that the infection has flared up again so they start antibiotic drips and give me morphine for the pain. There’s a bed shortage on ward 13 so by luck I am sent to the private ward 19. In the afternoon they do an ultra sound scan which shows sludge in the bile duck and my gall bladder about ¾ full of sludge and stones. Unfortunately it takes until evening to get me out of pain. Thank goodness we learnt the art of imagery and relaxation at Penny Brohn otherwise I don’t know how I would have go through it all. Steve’s really too poorly to come out and I don’t feel up to visitors in the evening so settle in for an early sleepless night.
AIREDALE 1

FRIDAY 10 JANUARY – I’m feeling considerably better in the morning. They decide that I can now start having sips of drink and will probably send me home later on. As is usual in hospital the goal posts change with each different Doctor’s visit. I end up going for an MR CP scan later afternoon. This reveals that I have a large gall stone and sludge. Unfortunately this will require a separate operation to remove the blockage before they can go ahead with the double op but they can’t do it until next Thursday. I must stay in hospital until then as they need to keep putting anti biotics into me to prevent a problem with my liver and pain killers to keep me stable. I now have the problem of balancing the horrible side effect of tramadol (an opiate) which messes with my head versus the pain which screws up my body! Steve’s still pretty poorly so I opt to spend the evening alone. I explore the ward and find the lounge has a wonderful leather sofa. A plaque tells me it was in memory of John Barker whose wife set out to raise funds for it by creating the nude WI calendar of “Calendar Girls” fame. This ward is partly used by haematology and is where Steve would have been treated if he had chronic rather than acute leukaemia.
AIREDALE 2

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Responses

  1. You are both having such a tough time- things can only get better- and you are an inspiration in positivity! Our thoughts are with you both for an improved 2014! A and B


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