Posted by: glenswatman | June 21, 2012

20120611-20 Bad chemo reactions

MONDAY 11 JUNE – I have lots of unpacking to do with things from Spain and stuff from Mums. For the first time ever our souvenir ornaments from China go on display. They were bought on my 40th birthday trip the month before we set out travelling. I speak to the hospital and they say the surgeon saw Steve at 1.30am and said he wanted a CT scan ASAP and an MRI scan. They are controlling his pain with morphine so based on this I decide to head over and arrive around 10.30am. He’s no better than yesterday and doesn’t know what to do to get comfy. At risk or being a pain I make a number of trips to the desk to ask when the scan will be but just get told it is down as urgent. By 4pm there is no sign of Steve being taken for a scan so I head home. Call in to Mum and have a bite to eat and update on Dad who has had an endoscopy today. He’s also not feeling very well at all – what a pair. Mum has had a leg x-ray today but will have to wait about 2 weeks for the results. Glad I have got a hospital appointment tomorrow or I would really feel left out. Claire calls in the evening to say she has arrived at an empty hospital room. With all day to do the scan the pick the time when the England match is on. Steve arrives back just before she leaves but she says he is still in a lot of pain and a bit spaced out with all the morphine.
KEIGHLEY – BRI 2

TUESDAY 12 JUNE – I call Steve and he asks me to go in as soon as I can. After dropping a “get well” card in for Dad I drive over and find Steve in just as much pain. If anything his stomach is even more bloated and when he goes for the MRI scan he finds it very difficult to hold the positions they need to capture pictures of his spine. He is absolutely in agony and knackered when he comes out. I have to leave Steve in the afternoon to go to Airedale for a follow up gynae appointment. It’s very frustrating not to be able to pop in and say “Hello” to Dad who is there but the risk of me picking up and transferring and infection is too great and he has Mum and Lisa to visit today anyway. The Doctor tells me my last samples were inconclusive and given that the first ones showed pre cancerous cells and that I am having bleeds even on HRT then a hysterectomy would be a good option. They will try to do it by keyhole surgery needing an overnight stay and 2 weeks recovery but may have to do a full op with 6 nights in hospital and 6 weeks to recover. To be on the safe side they will take my ovaries as well which is why they can’t do the vaginal operation. Sandra & Keith have invited me for tea, an enjoyable ham, egg and chips and a very quick catch up chat as Sandra has to be out at 6.30pm. I call in to Moms to update her on Steve and hear that Dad is a little better. Claire has picked up the fridge/freezer that Wendy has given me and asks me to pick up Daniel to help with the lifting as it is huge. She’s not wrong; it is almost as big as a house door and will be great for us.
KEIGHLEY – BRI 3

WEDNESDAY 13 JUNE – Steve again wants me to go in early. The MRI scan has shown no abnormalities so now they are pretty sure it is severe constipation coupled with something else like mumps. Although I spend a lot of time just sat beside him reading quietly there are times when I can help with a belly massage, soothing his fevered brow, tempting him with bits of food and drink. Last night he had 8 sachets of laxative powder in a drink but nothing has happened. They try an enema but with no effect and when Doctor returns he says they are stopping most of his medication as it causes constipation and are going to try other laxatives and review it all in the morning if Vesuvius still hasn’t erupted. Other than for about half an hour after each injection Steve is in constant pain but they are now going to give him a strong injection 4 times a day regardless and he is to ask for additional ones if needed. For good measure I go out and buy a packet of liquorice and will bring prunes tomorrow if nothing’s happened. Steve’s whacked by 6pm and I settle him down in bed watching the football before I leave. Claire and Natasha call in on the way back from a swimming gala (she got gold and silver) and help me put the old fridge/freezer into the outdoor storage cupboard. I’ve already attempted to fill the extra drawer in the new freezer; it looks perfect for an assortment of ice creams.
KEIGHLEY – BRI 4

THURSDAY 14 JUNE – With going into hospital early I am not getting any jobs done so get up at 7am and finally shorten the lounge curtains amongst other things. After a brief visit to Mavis to help with some photo transfers I arrive at the hospital around 11am. I manage to get Steve up and give him a shower just before ward rounds. I notice grazes on his arms and he says he fell over last night whilst trying to go to the toilet. Doctors say they will try a different enema plus another jug with 8 sachets of laxative to cure his faecal impaction. If that doesn’t work there is one more type of enema, used prior to colonoscopy that they can try and if that fails it may have to be surgery which they are reluctant to do. They now know that all the problems are a bad reaction to the Vincristine chemical he had last Wednesday. Looking back over Steve’s notes they believe he had the same one in Spain and that was what caused all his constipation problems at Christmas. Unfortunately he was due to have 5 more doses and it is even part of the pre bone marrow transplant regime and there is no alternative so he will just gave to miss it out. Steve’s pain in a bit less but he is really spaced out. I put a cup in his hand and he gets it to his mouth then closes his eyes and nods off for a few seconds, only to wake up and look at the cup as if he wonders how it got there. It’s almost like those bunnies in the old Duracell commercial and would be laughable if it wasn’t so sad. Whenever Steve is awake I offer him the laxative drink and prunes, not sure if he is pretending to be asleep some of the time to avoid me. He’s not got the energy to sit up properly or feed himself but is happy to have some jelly and ice cream at lunch time. I feed him small portions and almost wonder if I should be saying “choo choo train’s coming” as I put the spoon to his mouth! In the afternoon the therapist visits and gives him a reflexology foot massage focusing on the bowels to help his problem. It definitely relaxes him as he spends most of it fast asleep snoring, I’m just glad to see him getting a bit of rest and being out of pain. As I leave at 5pm the Doctor says they are going to send him for another x-ray and then do the enema. I visit Nancy for an evening meal then we head to bowling together. My scores are abysmal as I just scrape over 100 in each game, feel utterly exhausted. Whilst I try to joke and remain light hearted this is really starting to get to us both. I’ve worked out that if I don’t go to sleep until midnight I can get a good few hours of solid sleep which is better than a broken night. KEIGHLEY – BRI 5

FRIDAY 15 – Steve calls me early and says he needs me there so I arrive around 9.30am. He’s been in almost constant pain since he got here and says he cannot take anymore. It’s all really upsetting and I ask to speak to the Doctor and consultation nurse. They arrange for Claire from Oncology to visit and she recommends a slow release morphine pump with additional injections to top up when needed. We give Steve a bath in the hope of relieving some of the pain. When a Doctor calls she says the CT scan shows he has an “Ileus” in the upper bowel. The best treatment for this is to rest the bowel and let it activate naturally so no food or drink only drips. She also says Steve is low in calcium and other things and this will have been stopping all tablets being absorbed so everything from now on will be drip fed. They think the Vincristine chemical has paralysed the bowel by killing the nerve endings but these should grow back. By evening Steve is still very upset and says he needs me to stay over. Staff say I can sleep by him on a reclining chair. Around 10.30pm Doctors arrive and put a gastric tube in to allow some of his stomach contents to come upwards and a catheter to keep his bladder empty, all aimed at relieving pressure on the stomach. Not sure how people sleep even in business class as this almost fully reclining chair is still not very comfy and they don’t even bring round champagne.
BRI 6

SATURDAY 16 JUNE – Luckily the movie from 11pm – 2am was the “Girl with the dragon tattoo” which helped time pass as I sleep very little. Claire has been to our bungalow and brings me medicines and clothes. She offers to stay but I pack her off for the day as she is going to York races with Richard. Just after she leaves 5 Doctors arrive at once and pile into Steve’s room along with a nurse it’s a bit like an episode of “House” with them all throwing in treatment suggestions. Consensus is that they need to be certain there is no medical blockage so they can rule out an operation at this stage and a CT with dye will do that. They suggest another phosphate enema and we get a slight result. In fact Steve must be feeling a tiny bit better because when they are doing the enema and he is not complaining he says “Bernie would be proud of me” – Bernie being our gay friend! In the evening Steve is taken for a fluoroscopy CT scan and in the process of doing the fluorescent enema manage to relieve Steve of about a litre of fluid. Waiting for the porter to take us back to the ward he manages a visit to the toilet so things are definitely on the move. Sadly no further movements in the night but they do seem to be getting the pain under control.
BRI 7

SUNDAY 17 JUNE – It’s Fathers Day but Steve barely manages a smile at David’s card containing an “I’m the boss today” badge that he has to return to me tomorrow. I take him for a bath and this again relieve a bit more fluid. The surgeon calls in and agrees there is still lots more left and suggests a daily enema. Claire arrives giving me a chance to go home for a few hours. I get the washing underway and manage about an hour and a halves sleep between incoming phone calls. When I get back the nurse tells me they gave Steve the enema and got it back almost instantly with interest! Unfortunately he isn’t seeing this a such a good sign as everyone else is as he still has a bloated stomach, is in pain and I think due to the morphine has convinced himself his body is packing up on him. I’ve done a bit of research on the Internet and it all concurs with the diagnosis of paralytic ilius and that painkillers will actually slow down the healing process and results so I explain this to Steve and he manages without any extras for the rest of the day. It does get a bit confusing when I come to leave in the evening as I suggest a pain killing injection as he is in a lot of pain and needs to at least get off to sleep. Now he is convinced he is not allowed them at all and must suffer all the time. I stay until just before 10pm to see he is settled and everything has been done other than changing his drips through the night. Glancing back over this last week there is a lot I haven’t documented, either because so much has happened and things have changed fast or I have lost the plot a bit myself.
KEIGHLEY – BRI 8

The diary for the next few days is written after the event by which time some things have blurred a little in terms of exactly when things happened and other things I will have blanked out but this is how I think it all went. I do know that somewhere in amongst these days I get very frustrated with the regulations as Steve would benefit from heat on his back or stomach. Hot water bottles are banned, wheat pads transmit infection and the heat massager I bring in cannot be used as it over a year old and they cannot do an electrical test on it.

MONDAY 17 JUNE – I’m just getting ready to leave when the hospital call to ask me to go straight in. Steve has woken up blind. When I get there he has some vision but it is very blurred. They send him for a CT scan and later Doctor and a nurse take me in a room for the results. The scan is showing a problem at the lower back of Steve’s skull indicating a small stroke. They will send a stroke specialist to see him later. There are still problems getting Steve’s pain under control as he has spasms of excruciating agony. The nurses seem slow to respond with pain killing injections as they are a controlled drug and it needs 2 nurses to collect and sign for it. In the interim Steve doesn’t know what to do with himself and we end up with him in the shower with me pouring hot water over his stomach and back. Of course this is a nightmare given all his input and output tubes and in turn causes different pain. On the plus side he does manage a couple of visits to the toilet. When it’s time for me to leave he tells me he can’t cope without me and begs me to stay with him through the night again which of course I do.
BRI 9

TUESDAY 19 JUNE – He wakes blind again but it clears to blurriness. However the blindness returns around 9am with no vision whatsoever. A trolley arrives to take him for some sort of scan and he battles the pain to get onto it, only to find a Doctor arrives and says that particular scan should have been cancelled. By the time we get him back into bed he is very upset. A heart specialist comes and attaches a machine to Steve to monitor him over the next 24 hours. The stroke specialist returns and says he is now not convinced it is a stroke as it should have caused blindness to only one eye and should not have happened again so he himself will study the scan. He believes the people who looked at it were prepped to check for a stroke and may have misread it. The oncology department send out Claire, a pain specialist and she suggests a syringe driver that works continuously dripping in pain killer and that accompanied by injections for the intermittent spasms. Steve is only allowed sips of water and feeling very thirsty so they manage to find an ice lolly which goes down well. Steve doesn’t like me leaving him so I call Nancy who arrives at lunch time with a pack of lollies. I also take a break for a short time and have lunch with her in the cafe as Steve seems to be sleeping. It’s really hard to leave him as he panics due to his loss of sight and the pain comes on without warning making him move randomly around the bed and often try to get off it. The stroke specialist calls back and tells us Steve has a condition called “Posterior reversible encephalopathy syndrome” P.R.E.S. Naturally I hone in on the word reversible. It is fluid at the back of the bran but once Steve’s blood pressure drops (it’s been high since we got to hospital due to the lack of pain control) the fluid should disperse and his sight should come back. No time frame can be offered but it is still very heartening. Another pain relief suggestion has been for a T.E.N.S machine but they can’t get hold of one until later tomorrow. When Claire arrives to drop some things off she sets out on a mission to buy one and I believe Lisa gets involved as the receipt shows it comes from Guiseley. Steve’s panic’s about dying are stressing him so I let him phone David to say “his piece” and then reassure David that there is nothing to worry about as everyone believes he will get through this and it is the drugs affecting his mind coupled with the pain. Night nurse Sue is especially sympathetic and between us we decide the main thing Steve needs now is a good night’s rest. I will initially try to control the pain spasms with massage and the TENS machine and she will halve the injection dose but give it every 2 hours instead of 4 hourly.
BRI 10

WEDNESDAY 20 JUNE – The night has passed relatively well and I even got hours sleep in myself. This all goes a bit belly up when they send Steve for a heart ECO test. He’s had a pain killer less than 2 hours before so can’t have another. They suggest taking him on his own bed to save movement but they get his Hickman line caught up and cause him pain dragging it and then bang his overhanging foot ramming it into the lift wall. Once we get back it takes them ages to get a pain injection to him. I’m getting really angry and end up having a meeting with Dr Ackroyd and Helen. I explain that at the moment Steve is getting stressed by having students in the room and nurse loudly talking through the treatment, being banged around when people come in and out of the room due to its bad design, and hearing different people talking about what is going to happen and then changing it all. It is agreed to have a sign on his door asking visitors to report to the nurse station when only necessary ones will come in and nurse will be quieter when treating him. We’re still not getting to grips with the pain spasms and it is heartbreaking. Helen is concerned about my own health and arranges me a visit to the relaxation clinic whilst she will sit with Steve. Jan does the emotional tapping technique on me, which initially I think will be a waste of time and a straightforward massage would have been better. However during the course of an hour and after much sobbing and outburst she calms me enough for me to see that I have the same problems as Steve with what is going on and that I also need to step back and try to let the Doctors and nurses just get on with things without asking so many questions and trying to understand things. Helen agrees with me and now all the different Doctors will report back to Dr Ackroyd and he will tell us what we need to know. This all sounds good until Steve gets a really bad pain spasm early evening and I have to restrain him clambering over the rails of the bed. The nurses take forever to come and when they do there are two of them so I explain that we are trapped with bedding and tubes and manage to fold Steve into their arms. I leave the room and collapse in the hall sobbing; I just can’t handle much more. Quite some time later they leave the room and I look in to find Steve calmly resting on the bed where they have made him really comfy with extra pillow. Fortuna takes me to the interview rooms and listens to my concerns. Shortly after Dr Ackroyd arrives, he says I need to get home for the night but he understands Steve cannot be left alone at all and has arranged for someone to sit with him constantly through the night. When it is almost time for me to leave I explain to Steve that I need to pop home for a few hours to pick up some things but that Azra will be sitting by him. He is convinced he is going to die again tonight, and wants to. He says can’t they just give him one last pain killing injection now. I try to convince him that if there was any question of him dying I would certainly not be leaving. This again distresses us both and the nurse goes in to give him an injection to calm him. 10 minutes later he seems to understand my needs and accepts I am just going home for a short time. Sue promises me there is no reason at all that he should die in the night, he will not be left alone for even a minute and she will call if there are any problems at all. I drop in on Mom and Dad, Dad has come home this afternoon and is looking really well and I can at least bring Mom up to date with events. Just before I drop off to sleep David calls and we have a really good chat.
KEIGHLEY – BRI 11

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 am so much more settled in myself to see Steve calmer but just battling the visions.

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Responses

  1. Glenn, so sorry you are having such an awful time but that Steve seems to have turned a corner. Like you I need to know what is going on but try and imagine it is like a long flight just sit back and let the pilot do his job?? Take care and love to Steve xx At least he has the quarter final to look forward to xx

  2. Hey you two ……. Just wanted you to know that we keep up with what’s been going on and are sending possitive thoughts your way. We are in the final process of moving yet again…we have been here in Nova Scotia since last September so as the house needed a clean we thought we were due a move. Back to Alberta…I am going to really miss beautiful Nova Scotia…it’s certainly worth a visit on everyone’s journey planner.
    O, all our love and best wishes….xxxxx Stephen and Paula

  3. Oh Glen- I had no idea what a terrible time you have both been having.I should have checked your BLOG before. It seems so much more positive now…fingers crossed that he continues to go from strength to strength. LOOK AFTER YOURSELF- Remember that ‘Women are like tea bags- the hotter it gets,the stronger they are’ (Eleanor Roosevelt).
    Positive vibes are shooting out to you from Guardamar to Yorkshire!
    Love Alison and Bob

  4. Bill and I send to you and Steve many good wishes. I am so glad that Steve is better, you are two of the strongest people I know. Keep it up.
    Love, Bonnie and Bill

  5. Greetings from Cape Town. Googling Kontrei Spens in Malmesbury, I came across your blog, and was struck by the term ALL.
    Our oldest son,a 40 year old doctor was diagnosed with ALL in September 2010. He went through a very rough time – six courses of chemo over an 8 month period. After a remission of a few months, he relapsed and passed away exactly 10 months ago.
    Our wish is that Steve will will be cured, as we have seen in many other patients.
    God bless


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