Posted by: glenswatman | July 2, 2012

20120621-30 On the road to recovery

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THURSDAY 21 JUNE – I wake around 2.30am and realise I have the signs of a stinking cold. Phone the ward and find out that Steve has not woken at all and that his blood counts are good enough for me to return complete with cold. I arrive just before 7.30am and Steve sees me as soon as I walk in the door. His vision is back which is brilliant and they seem to have the pain properly under control with new medication in his syringe driver to the extent he has needed no extra pain injections and had no pain spikes. Either they are controlling it or his pain peaks have gone. He says he wants to eat some rice krispies and luckily the nutricionalists have just arrived to have a conference about Steve and give it the OK. He copes really well with it. Doctor Ackroyd calls in twice and on the second visit arranges for Steve’s stomach tube to come out and says within reason he can eat whatever he fancies. The illusions that are frightening Steve are due to the fluid on the brain and preventing the messages being interpreted properly, could last a few days but should sort themselves out and it is good that although he is frightened by them Steve does know they are not real. In fact some are a bit amusing such as when he says his feet have turned into luncheon meat, he stares at them and says “I’ve got plates of meat instead of feet” but I can reassure him on that one. I really feel like we have turned the corner now and I am so much more settled in myself to see Steve calmer but just battling the visions. I realise I don’t have a cold as just after arriving home last night I did a load of washing then put the radiators on to dry it, that in turn blocked my sinus’s. For lunch Steve has a small tub of ice cream, and ice lolly and a cup of coffee and keeps it all down although this does seem to activate his stomach and give him some pain. Therapist Sandra arrives and gives him some reflexology at the same time as I give him a stomach massage and then some EFT tapping treatment. This gets him through a bad patch and allows him to nap. Steve is happy for Claire to visit and she is amazed at the improvement although like me struggles to see him battling the illusions and when his eyes roll back in his head. She will try to add something to the medication to help with it. He’s still generally slow and weary and we are not out of the woods but certainly seem to have found the path. In the evening they change his syringe driver having begun to reduce one of the 3 combinations inside it. Steve is perfectly happy when I tell him I am going home for the night and Azra is going to sit with him again. I call in to ASDA and pick up basic things like cup a soup that Steve may be able to eat and the hospital can prepare as there is no ban on hot water being provided.

FRIDAY 22 JUNE – I’ve had a good night’s sleep and do a bit of dusting before returning to the hospital for 10am. I need to try to make Steve less dependent on me and will try to reduce the length of my visits each day. He’s very sleep but has little pain and the illusions that were present through the night are now subsiding. I even notice a difference when he goes to the commode and can practically do it all himself other than getting a few lines caught up. Another factor in his recovery is that he is starting to give me back chat. Claire from Oncology pain calls around and is pleased to see Steve finally out of severe pain although she feels he may be slightly over doped up but at least the illusions are lessening. With the weekend coming up she figures it is better to leave things as they are and make adjustments throughout next week with a full complement of Doctors on hand. Dr Ackroyd calls in and is pleased with Steve’s progress but says Steve will be another couple of weeks in hospital being weaned off everything and building up his strength and then more time at home for a full recovery. Steve is comfortable with the idea of me going home overnight and him not having a baby sitter but I do make sure he understands he must buzz whenever he wants things and not try to go to the toilet alone etc. I arrive home at 7.30pm full of good intentions of what to do but instead just flop on the sofa watching TV and eating junk food.

SATURDAY 23 JUNE – Yesterday I left it that Steve would phone me when he was properly awake and wanted me to visit. I crack on with a back log of paperwork and line up forms for Steve to sign. We are still dealing with address change stuff and I haven’t wanted to bother him with it until now. I do research on PRES and Vincristine and everything says it is fully recoverable so long as they keep his blood pressure low and it doesn’t happen again. The Vincristine was also responsible for the jaw, back pain and paralytic Ileus so everything is now explained. Unfortunately Vincristine is used not only in bone marrow prep but also consolidation and maintenance therapy and there is no substitute. Other people have continued with treatment but taken lower doses less frequently as it is a very important drug. All to be discussed later when Steve is over this. I call at lunch time and he has been fine through the night, eaten breakfast but is basically just sleeping unless woken for some treatment. Grandad’s girl Natasha is desperate to visit so she and Claire call in after a swimming gala in Leeds. Claire can see a big change in Steve although Natasha does query the fact that Mum says Grandad is much better as she thinks he looks very poorly. I’m hoping this will suffice as his visit for the day but he asks me to drive over. I arrive just after Claire has left and he is sleeping again. I speak to sister and find that just after she had told me on the phone everything was OK they heard a crash in the room. Steve had tried to get to the commode on his own and fallen headfirst but little damage done. I get quite cross with him about this and tell him that if he wants to get home as soon as possible he must do everything from his side to help such as calling when needs to get out of bed, just taking all the medicines when they come and trying to eat and drink. I notice his Hickman line no longer has any drips connected and see this as another step forward. Don’t know whether he wore himself out during the earlier visit but he is pretty sleep and grumpy when woken for anything. Notice his blood pressure is now down to “normal” levels 118/79 having been up over 180 / 120. The visions have gone completely and it looks like sleeps is now his best friend. I leave after 3 ½ hours and arrive home before 7pm. I get stuck into the gloss painting thinking it will be nice and calming and therapeutic. Now had the can done what it says and covered in “one coat” it just might have but I can soon see it will take 2 coats meaning twice as much time and paint.

SUNDAY 24 JUNE – My sinuses are really bunged up after all the painting. Late morning I pop down to Mom and Dad’s. The Doctor is there as Dads arm is very swollen and he has unexplained bruising on his upper arm and chest in the heart area. Doctor suggests he goes on to Airedale hospital. I meet Claire and Natasha at Richards and head down into Centenary Square in Bradford for the Olympic torch relay. City of Bradford swimmer Jamie is doing the 300 metres from the mirror pool and lots of club member have gathered with a big banner to support him. 2 weeks ago his Grandad died and Coca cola have made him a special banner in memory of his Grandad. There’s lots of excitement as parades of people follow the route, school kids, band, and other entertainers. When Jamie arrives the crowd erupts as it is good to have a local lad running in his own city. Unfortunately Jamie doesn’t manage to milk the moment and fairly runs past us all. I leave and head over the hospital whilst everyone else is going to a celebratory party. Steve is still very sleepy and I stay for 3 ½ hours but he is only awake for 1 hour at tea time. Seems that things are settling down nicely now and his diet of ice lollies and ice cream working well.

MONDAY 25 JUNE – Spoke to soon as I am rudely awoken with the phone at 7am. Steve is very distressed in pain and with the illusions back and he wants me with him. I’m there by 7.45am and can see he is in quite a state and has been since about 1am. They manage to calm him with 3 different injections and other medication and must now review everything with the Doctors. I was supposed to be meeting our Canadian friends Kevin & Ruth at the station at 10am and they don’t have a phone. Steve comes up with the idea of asking Claire to meet them and taking it from there. Dietician Louise calls in and her questioning reveals that Steve is frightened to eat much as it causes his tummy to ache and he is worried about his bowels getting blocked. She allays his fears and also offers him lots of choice of extra foods that can be ordered for in between meals. When she weighs him he is down to 65kg so really needs to deal with this. Claire from palliative care comes and is a bit cross that someone reduced one of his drugs in the syringe last night. She says they will get him back on track but change one of the pain killers for one that is just as powerful but less likely to cause constipation. The Doctor calls in and assures us things are going well and they will remove his catheter later. Mid day they come to put in the new syringe and when they remove the box I notice a damp patch underneath. Oddly enough when I arrived at 8am I noticed a damp patch in the similar area and thought Steve had been drooling. I now think that maybe the machine has been leaking and Steve has not been getting any drugs at all. The nurse tentatively agrees but says they will soon have him up and running. I say that I would still like the damp noted in case it becomes relevant in the future and the reduction in drugs was not a problem. I have a feeling they are not going to do this as it reflects on the fact that they didn’t do proper syringe driver checks through the night so catch the Doctor and mention my concerns. Kevin & Ruth, our friends from Canada, arrived this morning and Claire met them and took them to our bungalow. They have now arrived by bus and although Steve is finally resting he soon wakes up and has quite a chat. We leave after about an hour and I show them a bit of Bradford where they like the old building. Steve wants us to call back and we arrive at tea time when it is good to see him eat half a plate of corned beef hash with green beans and potatoes and also some pineapple chunks. We head home and I take Kevin & Ruth down the narrow twisted cobbles of Thwaites Brow. Call in for some groceries then settle at home. Claire calls to say Steve seemed better on her visit and also ate half a tub of Muller rice, I would say in total the most he has eaten in a day since he go to hospital over 2 weeks ago. Kevin cooks us up a pasta meal; they have selected the ingredients in store as Ruth is gluten intolerant. By the time we have eaten and Kevin & Ruth have caught up with Internet it is bedtime and they settle onto the sofa bed in the lounge.

TUESDAY 26 JUNE – I’m awake at 7am and figure I will get up, dressed and ready for my hospital visit then have another rest if Steve doesn’t call. As I open the curtains I see the bin men coming around, had complete forgotten what day it is. Quickly scurry out in my bathrobe to get our bin on the street in time. I return and have my shower the creep through the corner of the lounge to the kitchen only to find Kevin & Ruth are both up and dressed. We chat over drinks and decide that I will head to hospital when Steve calls or by 10am for the Docs round and they will leave when they are ready and visit Haworth and Saltaire before meeting me at the hospital around 4pm. I get a call from Steve at 8.30am, he’s just spilt water and coffee over the phone and wanted to confirm it is working but whilst he is on he says I may as well set off to visit. When I push the door open I am shocked to see his bed all made up and Steve is sat, or actually slumped, in the arm chair fast asleep. I can see that the only connection he now has is the syringe driver which is further progress. It’s about an hour before he wakes to talk to me and shortly after that they remove his syringe and we head off, with Steve in a wheelchair, for yet another MRI scan. It’s 12.30 when we get back and Steve does a good job of eating some quiche, rice and pears in syrup. As we seem to be on a roll we follow this with Steve taking a proper shower. At the end of the marathon activity session he is whacked and rolls into bed. After being off the syringe for over 2 hours he is in pain but I manage to control it with stomach massage and the TENS machine and get him to sleep. Shortly after they attach the new syringe driver, this time omitting the buscapan. Kevin & Ruth arrive just after 4pm and Steve has a good chat with them. A Doctor pops in and tells us the MRI scan shows that the fluid at the back of the brain is starting to disperse which is a good sign. He also tells us that Steve can try a bit of walking with support so with Ruth on one side and me on the other he walks to the end of the ward corridor and back. As we are leaving Dr Ackroyd is on his way to see Steve and confirms the MRI scan results and is pleased with Steve’s progress. We call in to see Mom and find out that Dad’s problem seems to have been down to the taking him off the warfarin when he was admitted to hospital then starting him on the same dose to send him home when in fact he needed extra. Next we visit Claire so Kevin & Ruth can meet Daniel and Natasha. I cut across the valley to get home so I can show them the hamlet of Goose Eye where they used to print bank notes. At home I cook up a Chinese prawn stir fry whilst Kevin gets his fix of Internet. There’s a bit of confusion later and a nurse calls me to say Steve is not happy about taking his pills as he thought Dr Ackroyd was stopping the paracetamol. When I finally speak to Steve he has taken them then his phone goes dead part way through our conversation.

WEDNESDAY 27 JUNE – I’m up just after 6am when Kevin & Ruth get ready. I drop them at the train station for their journey to Leeds to connect with a bus to Bristol. Back home I am wide awake so crack on with painting the white woodwork. I arrive at hospital around 11.30am and Steve is still sleeping. He wakes for lunch then we take a stroll along the corridor. Palliative nurse calls in and suggests they start reducing his 5ml pain killer by 1ml a day then get him on patches and tablets. The problem with that plan is that he won’t be finished in time to come home for the weekend so a compromise is worked out in that Steve should come home on Friday at whatever does he is on and have a district nurse come in to change the syringe each day. Then next week he will be readmitted to hospital whilst they completely wean him off and work out what pain killers are needed to keep him comfortable and how much midazolam Steve needs to keep the monsters in check. A physio calls in a takes Steve for a walk up the corridor and confirms that there is absolutely no reason he can’t come home. He says Steve’s leg muscles are wasted but with regular walking will eventually build up again and that is all that is needed. Steve is so settled that he suggests I leave straight after tea to have the evening at home. He has even started talking about what will happen next with his treatment a bit of a change from a week ago when I had to agree that he needn’t have anymore treatment if he didn’t want it.

THURSDAY 28 JUNE – I’m awake at 7am, shower then strip the bed and get the washing machine on. After breakfast I clean all the windows inside and out, hang out the washing, clean the oven, dust and vacuum the house and then clean the car. The man from Yorkshire Water arrives and fits a meter in the bathroom; this should save us quite a lot as we know that in the motorhome we only used 15 litres a day – will be very interesting to see how much we now use. Claire from palliative care phones to confirm a new plan that she has discussed with Steve and Dr Ackroyd. Today they will get him on a pain patch and withdraw the syringe driver this evening substituting the madazolan with a medicine form of a similar drug. If all this works well then Steve can come home tomorrow and will only have to go back if he feels unwell. I arrive at the hospital and Steve is sat up but says his knees and legs really ache from his short walks. Helen calls in and arranges for us to see her next Wednesday for a check up and to maybe reduce drugs further. They have decided that Steve will have no treatment for at least 2 weeks giving him time to build up strength for whatever comes next. He’s down to 62kg and still losing 1kg a day but I am convinced that at home he will fare better being able to eat what he wants when he wants. The bone marrow transplant appointment is rescheduled as in light of recent events this may be a better option. Sandra the reflexologist gives Steve another massage and chats to us about her own cancer. Using her mind she found the huge tumour on her kidney had shrunk by the time she had surgery. She also recommends the “Penny Brohn Bristol Cancer Centre” with their holistic approach. At this stage we want to explore as many options as possible to give Steve the best chance possible now that the original plan has gone out of the window. Call in to Moms on the way home and invite her up for a meal. Dad should be out in a day or two and tomorrow she is off to Leeds to help Lisa move house. In the evening Nancy pops in to visit Steve, strangely enough back in England he has had less visitors than in Spain.

FRIDAY 29 JUNE – I call and the hospital says Steve has had a very good night and is now in the bath. Steve calls me ½ hour later to say he has been discharged. It’s still only 9.30am so I abandon my planned shopping and head over. I call in for free produce on the way home. Steve is delighted to be back in our little bungalow and says he feels very peaceful and happy lying in the lounge on the sofa. I cook a lamb steak for lunch with mushrooms and chips and he eats far more than he would have done in hospital. Next doors gardener has been round and quoted us £70 to tidy ours up so in the afternoon I make a start myself and get the front trimmed back as far as the borders. Claire & Natasha call round in the evening and Nat is all over Steve. Steve’s still got his appetite so I cook a Chinese stir fry in the evening. He has come out with a small bag of obligatory medicines and a large bag of extras he can have as required, things for pain, sickness, dizziness, constipation, monsters, sleep problems etc. Tonight to be on the safe side we go for the pain, sickness and constipation bonus tabs and we both settle down for a restful night.

SATURDAY 30 JUNE – We both wake feeling rested although by the time Steve has had breakfast he is ready for another nap whilst I walk out to get the newspaper. It looks like another mixed day for weather, sunny spells, wind and occasional downpours but being at home I can chance putting the washing out and bring it in when needed. I tackle the back garden and soon realise the cold that appeared with me yesterday afternoon is in fact hay fever and soon remedied with an anti histamine tablet. Steve’s still pretty weary and can’t stand up for long but is eating loads as I offer him something to eat and drink almost every hour. In the evening Mom & Netty call round. Netty came up on Thursday to help Lisa move into their new house and they have just been to visit Dad. Whilst they are getting his warfarin associated counts balanced he still has a badly swollen hand. Steve stays up watching Wimbledon until 11pm. Already I can see his face filling out a bit and he is keen to eat more and has a little more energy, reckon another week and he will be running round the block.


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