Let me start by saying that I have deliberated long and hard about including this chapter in the blog. If it was a work of fiction an editor would recommend that the key events it contains should have a longer time scale: “spread them out a bit, it could never happen like that”. It isn’t a happy chapter by any stretch of imagination, but it is part of my cancer journey, so I think it deserves inclusion.
So it is Monday 7th October, and there I am sort of looking forward to the results from the second AIN biopsy, and getting ready for the MRI and CT scans tomorrow, after which I can expect a call from the hospital to tell me their plan, cunning or otherwise. Then the phone rings.
It is my mum’s carer. Oh God, something’s happened to mum. No, it hasn’t. Something’s happened to my brother; he’s had a stroke. Ian lives with mum, and between them they sort of manage to more or less care for each other. The social work term for it is “co-dependency”. He’s always been a sickly soul: asthmatic, totally blind in one eye, extremely partially sighted in the other eye, and seriously overweight. By sheer good fortune the carer was in the house with mum when the stroke happened. Ambulance called, and he’s off to hospital.
Mum can’t do anything, and I can’t really do anything for her, so I went to the hospital, to A&E, and saw him. He was less than semi-conscious, and wired up to monitors, a saline drip, and oxygen mask. The doctor said he had had a deep brain bleed, and might have to go to Southampton to have his brain operated on, but he’d chat with the specialist there and let me know. He also said that he had lost a lot of right side function. What was also concerning them was that while he had been having the stroke he had been vomiting, and had inhaled some of that, so they were treating him with antibiotics for a lung infection as well.
It didn’t sound good. Ian was kind of responsive, and would squeeze my hand in response to me speaking to him; he didn’t speak, but then he did have a huge oxygen mask over his mouth. After a while they said they weren’t moving him to another hospital, and told me which ward they were taking him to instead, so I left and went to mum’s house. Mum was due to go to the same hospital that day anyway, for one of her regular AMD appointments at the Eye Department.
Meanwhile Cathy was frantically trying to get news about her sister, who had been taken to another A&E department, local to where she lives. It seemed that she had pleurisy. Then Cathy heard that her sister had been sent home. Then the hospital had called her sister back in to A&E as the blood tests had indicated she had a blood clot on her lung.
Mum and I gathered up my brother’s medications as best we could and went to the hospital. It seemed to take an eternity for mum to be seen for her eye appointment, but actually on reflection it was marginally quicker than usual. The doctor showed us the picture of the back of her eye, and said she was in need of an injection, her 23rd according to the file. Mum had suspected that would be the case; she’s an old hand at this now. Now she has heavily dilated pupils and a plastic patch over her left eye; her vision is a long way away from 20/20.
So with mum hardly able to see anything, we went to visit my brother, and he was in the same condition as he had been when I had last seen him that morning. The responses were the same, and mum spent some time on a one-way chat with him, as did I. After a while we left, and I dropped mum at home, made sure she was set up as well as possible, and then left to go home to prepare for my own expedition to the hospital the next day.
Cathy was still frantically searching her text messages for news from her sister. Finally she got one that said that her sister had been sent home again with a suspected muscular problem in her chest. From pleurisy to blood clot, and now to a pulled muscle. Crazy.
So there I was at home, doodling through my emails, when the phone rang again. Cathy answered it. It was my uncle, the one that I chat with about our prostates. He had bad news, his wife, my aunt, my dad’s sister, had been ill for some years, following a stroke of her own and breast cancer. Now suddenly there had been a very late diagnosis of liver cancer, and she has just days to live. Christ, but what a day I was having; we were having. My uncle said that he had spoken to my mum about it just a few moments earlier, so she knew. I asked him if she had told him anything about what had happened at our end… no she hadn’t. So I told him about my brother. We chatted on for a while, my aunt wasn’t available to talk, so it was just the two of us, with Cathy joining in.
I rang mum afterwards. She was clearly upset, but had had one of her neighbours visiting when she’d had the call, so had been able to rely on her for a little support. She asked if I would be able to go to the funeral, but I didn’t know, as we had no idea when anything would happen, the funeral, my operation, what was going to happen about my brother; so many variable factors.
To end the day, Cathy’s sister rang. Thank goodness there was something positive to end the day on. She was at home and sounded really rather well and cheery.
The next day, Tuesday, and Cathy dropped me at the hospital for my MRI and CT scans. I have to say that this time it went very smoothly. I had my litre of tracer, then got taken into the MRI scanner. As usual it is a noisy experience, but unlike last time I didn’t really get the full Tangerine Dream experience, although there were some interesting rhythms that might have enhanced some acid house dance tracks. And it didn’t half go on. When I got out of the scanner I asked the nurse how long I’d been in there. Forty-five minutes, enough for a full vinyl album’s-worth.
Then they took me round to the CT scanner, and as before it was a warm injection in the back of the hand that brought a slightly unpleasant metallic taste to the mouth followed by a series of “breathe in and hold your breath” passes. Each of these was kindly followed by “you can breathe normally now” while they moved me a fraction. It was all done in under ten minutes. Can I take this opportunity to point out that I had drunk a litre of tracer and not until after I’d finished the CT scan did I feel that I needed to pee. My friend Edmund Slackbladder seemed significantly better than he had been.
So I got out of my hospital gown, dressed and went to see my brother. He was in the same position, and the same condition, as when I had seen him the previous evening. As I stood by his bed gently squeezing his hand and getting some response, the nurse gave him a 2ml injection of morphine; it’s difficult to know where the stroke ends and heavily sedated begins, or vice versa. Apparently the brain bleed was 6.5cm, which sounds like a lot, roughly two and a half inches. The doctor I had spoken to the previous day was there, and said they had a bed in Intensive Care on standby for him, as they were concerned about both his blood pressure and his oxygen absorption.
That evening we had another call from my uncle, and this time I was able to speak to my aunt. What do you say? What can you say? I still don’t know; I can’t really remember what we spoke about, but I know that only after we’d finished speaking I was left wishing I’d thanked her for all the great times we’d spent as their guests over the years. I spoke to my cousin, who has been her main carer for so long, and she said that they were trying to make things as easy as they could.
Then I rang mum, and updated her. When I said that I had spoken to them, she immediately said “has she passed?” “No”, I reassured her. Then we chatted about tomorrow, Wednesday, when she had a dental appointment booked for 11.00am. Now that I’m writing all this down, I just had a thought along the lines of “Hang on, aren’t I the one that’s meant to be ill? Seriously ill? When am I going to get time to be sick for myself?” And having said that, I have to acknowledge that my walking footballer friends have stepped up to the plate, and really been kind with their thoughts and their time and effort.
So the week went on, it is Saturday now, and my brother and my aunt are still in the same condition as they were on Tuesday. My brother did indeed get moved to ICU, where they were better equipped to look after him. Mum and I visited on Thursday evening, but when we got there he had been taken down to surgery. They had given him a scan and found blood clots in his calves, which they were treating by inserting meshes (not to be confused with stents) into the arteries at the top of his legs. The plan was to stop the clots from travelling anywhere more dangerous.
On Friday afternoon mum and I visited again, and Ian was barely responsive. Because he was no longer on morphine, it was the physical effects of the stroke that were causing his lack of response. On his feet were a pair of white sandal-like items, each with a tube inserted into it; these tubes were basically compression pumps that helped move the blood around his legs. The nurse gave him his eye drops while we were there, removing the full-face oxygen mask and holding his eyelids open while the drops went in. A few moments later when I stood next to him, squeezing his hand and trying to get a response from him, his eye was still wide open and staring unmoving past me into space.
The consultant took us into a private room and told us the position. It wasn’t looking good. As he had to be, he was pretty blunt in a calm and caring way. Ian might not make it out of the hospital. The best-case scenario he could describe was for Ian to live out his days in a nursing home. He asked us about his quality of life, his hobbies, his lifestyle. With his extremely poor eyesight and unsteadiness on his feet he was already relatively immobile and very limited in his ability to socialise and enjoy a range of activities. He basically has his model railways and model buses, which he treats rather like an art collector – he doesn’t “play” with his collection, he admires them as models, just as an art collector might admire a special painting or sculpture in their house.
The consultant asked for our opinion of what Ian would want them, the medical profession, to do. I thought about it for a moment, then answered as truthfully as I could: “He’s selfish and stubborn; he’d want you to do everything possible.” Then he went through the situation in some detail. Ian has pneumonia brought on by inhaling vomit; he has blood clots in his legs, hence susceptibility to more clots elsewhere; the 6.5cm brain bleed is in the area of the brain that controls speech as well as movement on the right side; his overall level of health is poor. I wondered unspoken if the lack of movement on his right side included his ability to move his eye and eyelids. The consultant said that people can recover from a 6.5cm bleed, but the unsaid words were that those people start off from a far better place than Ian has been at.
Ultimately he was leading up to asking that if Ian’s heart stopped, would we want him to be resuscitated given the damage to his brain that has already taken place. Mum asked the unsubtle question: “Is he going to be a cabbage?” The reply was a more subtle description of very low quality of life. In the end we agreed that if his body wants to give up the fight, then it should be allowed to do so. The consultant couldn’t say how long Ian would be able to keep going, and they would maintain the current regime as long as they could. But, essentially, he is going to have a virtual DNR sign over his bed.
Mum and I went for a cuppa in the hospital restaurant. Mum was already thinking ahead and talking about the house; she can’t live there alone, not rattling around in a four-bedroom place at 90 years of age. Ian will never return there. We will have to sell it, and she volunteered the need to go into a care home. It is going to be a long process to get the house ready to sell; Ian’s belongings will need to be gathered together and if he makes it to a nursing home some of his collection of model railways and buses will have to be retained to help give him stimulation (if at all possible). Then there are mum’s possessions and all of the ornaments and mementos not just of her life with my dad, but of their parents’ generation too. There is a lot to be done.
So to the following Monday, 14th October. I go off as usual on a Monday morning to play walking footy. To be honest it was a pretty enjoyable time, in spite of the rain. Coming off the pitch at the end I checked my phone and saw a missed call from Cathy, along with a voicemail notification. She was feeling very unwell and an ambulance was on its way. FFS. I really don’t need this as well. First Ian, then my aunt, now this. All piling up on me.
So I called back on her mobile, but she didn’t respond, then I called on our landline, and it was Cathy who picked up. The ambulance crew were with her, they had diagnosed her with labyrinthitis and vertigo, an infection of her inner ear causing extreme giddiness and nausea. She has to basically do as little as possible until it passes, which could be weeks rather than days. Nonetheless this was turning into another Monday that I could have done without.
It was to get no better as mum and I visited Ian again in the afternoon. The consultant, a very quietly spoken man with excellent bedside manner, explained that they had arrived somewhere between a rock and a hard place in their treatment regime. The blood clots in his legs were still giving them cause for anxiety; the stroke specialist had advised that they needed to be broken down, as the meshes wouldn’t be sufficient to protect his vital places from the damage they could cause. Unfortunately the way to do that was to administer blood thinning agents, and that in turn could reactivate the bleed on his brain. If they don’t thin his blood, the clots could kill him; if they do thin his blood the bleed on his brain could kill him.
We are all agreed that Mondays are no longer welcome on our calendars.
Then came Tuesday 15th October. My mobile went off at 07:45. It was the hospital to say that Ian was having great difficulty in acquiring oxygen due to the pneumonia, and he was in serious danger. They are trying to help him breathe as best they can without shoving tubes into his lungs. They will ring back if we need to attend urgently.
I go downstairs, and to help keep my mind occupied I do last night’s dishes, and make Cathy and myself some coffee and breakfast. Then mum rang, and I immediately thought it must be Ian losing the battle for oxygen. No it wasn’t. Instead it was news that my aunt has passed away in the night. I rang my uncle, but he couldn’t speak; the funeral directors were there. He’ll ring me back.
I spent the rest of the morning waiting for any news of Ian, as well as thinking that I was due to hear about my own results today, surely? Nothing came, and Cathy and I took mum on her weekly grocery shopping trip. We dropped Cathy back at home and mum and I went to see Ian again. He was a lot less responsive than he had been the day before. The consultant was equally pessimistic about his chances of pulling through as he had been yesterday. You can only imagine how much the prolonged struggle for oxygen must have taken out of him this morning. And they haven’t done the blood thinning yet. I could only reiterate that he’s a stubborn sod, and that he’ll make every effort to keep going.
By the time I had left mum at her house and got home, it was nearly six in the evening. It is impressive the way mum has worked out her independent living skills in terms of what she needs and how to make sure she can access it. I dug out an old perching stool from the garage for her to use in the kitchen, and she’s rearranged food cupboards and dishwashing, as well as sorting out her laundry. She is still lonely in the house though, and obviously under the same sort of stress as the rest of us over my aunt’s death, Cathy’s illness, and what is going to happen to Ian, and when. But she’s organised friends, neighbours and additional carers, so is doing pretty well.
When I left her I was shattered, my bum was hurting, and I hadn’t heard anything from Colorectal about my results. Basically I want a day off. I rang mum later in the evening, and she said that my uncle had been in touch and told her my aunt’s funeral would probably be about three weeks away. I’ll do what I can to be there, my own health permitting.
Oh, and by the way, I’ve decided I don’t like Tuesdays either.
So with the news that my aunt had passed away, and that my brother is still in critical care, I took a much needed day off on Wednesday. I did nothing at all. Well, obviously, not nothing, but only what was needed for life support purposes. Just try to relax and have a calm day for “me”; remember “me”? The guy with two lots of cancer going on and a high likelihood of life-changing surgery on the near horizon.
Which was a wise choice, because on Thursday when mum and I visited Ian the consultant and nurse took us off to a side room for another chat. Things are getting very much to the limit of what they can do for him. The blood thinners are being used just to try to stop the formation of further blood clots, not to break up the existing ones. The lung infection is being treated by another strain of antibiotics, but he is still struggling for oxygen. They have had the Eye Department up to check his eye out, and they think his vision has deteriorated – and it was in a pretty poor state before the stroke – and the loss of motor function on his right side includes movement of his eye (although his pupil still responds to light). The stroke specialist has said that there is little more they can do, and that he is likely to be seriously disabled if he survives.
They were concerned about quality of life; Ian’s pre-stroke quality of life hadn’t been great, and the prospects for post-stroke were very grim indeed. His functionality and ability to enjoy the things he has previously enjoyed were simply not going to be there. The consultant said that realistically it was only a matter of time before Ian does die. His body simply can’t fight the problems he’s got for much longer. He gave us advice about Bereavement Services within the hospital. We agreed that if “something” happens at night, they’ll call me; in the day they’ll call mum.
We sat with Ian for a while, and spoke to him, trying to encourage him to fight his illnesses. Whereas before he had been able to wiggle his left foot on demand, even that has gone now, and his lower legs and feet were quite puffy with water retention. He could still squeeze your hand with his left hand, but when he tried to wiggle his left toes, he only succeeded in wiggling the fingers of his left hand. As mum and I left, he managed a little wave with it. It must be horrible for him, because he can clearly hear us, but he can’t do anything about responding apart from wiggling his fingers, squeezing your hand, and the occasional weak grunt. You can tell he is trying to communicate by the changes to the traces on the monitor – pulse, respiration, blood oxygen saturation.
The next day, the Friday immediately before my planned departure for France for four nights and three days, we took mum to the hairdressers, and after returning her home, Cathy and I went up to see Ian. This time he was less responsive than yesterday. All I got was one flicker of his left index finger in response to all the talk and squeezing of his hand. The nurse said she thought not much had changed since her previous shift two days earlier, but I think she was just being nice. They had had him out of bed that morning sitting in a chair, and had given him a rudimentary shave to cut the stubble back to manageable proportions. The nurse did say that they aren’t very good at shaving their patients.
Cathy and I left him and went down to the car park again; on the way we went to find out where I was due to meet the consultant for my pre-operation consultation. Once outside the building, I checked my phone and there was a missed call from mum’s mobile. I rang her back and she answered to say that she’d had a fall, had called an ambulance, and was still lying on the floor. No blood, no bones broken. She couldn’t get up, and couldn’t get to the landline which had rung a few times.
My immediate internal reaction was sheer anger. The closer I get to going away for this little break, the needier and needier my family gets and the more guilty they make me feel for deserting them for a few days. Just walking around the hospital to and from Ian was like wading through treacle as Cathy stopped for a giddy/nausea spell every thirty or forty short steps. All of them conspiring against me. Well, if this painful poxy lesion of mine turns out to be as malignant as it could be, this time next year they might be having to make do without me altogether, then where’ll they be? Sometimes I wonder if it takes a good unhealthy dose of self-pity to really motivate you. Sod you lot, I’ll feel sorry for myself even if you don’t.
I find myself feeling anger at all these people who are meant to be on my side simply because they are demanding my support and effort; surely they are meant to be supporting me, aren’t they? Then I get immediate guilt at thinking those thoughts; after all they are as entitled as I am to have their needs met. Then back to the self-pitying “what about me?” feelings; then tearfulness and despair at what my own future holds; then more anger about the guilt and lack of “me” time. And then at every turn of a sentimental expression in life or on television, tearfulness and choking up voice.
I think I might just have been a teensy bit depressed.
Of course I didn’t tell anyone how bad I was feeling. You don’t, do you. You shouldn’t have to. For goodness’ sake don’t they realise that it’s down to them to be alert to it, to spot the signs, to understand what was happening to me? Oh no, they are too wrapped up in their own problems to look out for me. No wonder I was getting angry.
Mum had fallen at about 4:05pm, and we had left her about twenty minutes before that. It was nearly 4:30pm by now, and still no sign of the ambulance. We got into the car and headed down to mum’s through the rush-hour traffic. We still got there before the ambulance. She was sitting on the floor cursing herself for being a “stupid woman”, but moving from bum cheek to bum cheek to try to stay reasonably comfortable. She said her knees hurt, the left more than the right. We managed to get her onto one of her pressure cushions to make her more comfortable while we waited for the ambulance.
Her landline rang, and it was the paramedic control checking up on her. They talked to her about her circumstances and reassured us that the crew was on its way. Sure enough it wasn’t too much later (about an hour and a half after she had made the initial call to 999) that the crew turned up. As usual they were pretty efficient and helpful, and much against her wishes helped her to her feet. She hates any pain, and squeals/shrieks at any hint of it. But once she was upright, the squeals turned into “ahh”s of relief. There were more squeals as one of the crew took her blood pressure.
She will be referred to the Falls Team, so can expect a visit from them at some stage soon. We explained the current domestic situation, and how we can’t really make concrete plans for mum until we have a definite outcome for Ian; we know Ian won’t come back home to live, but the legality of his situation seems complicated. It’s his home as well as mum’s; all of his belongings are there.
While the crew were there, neighbours from across the road popped in as they had planned to do originally. That was a busy roomful for a while. They said their hellos followed fairly rapidly by their goodbyes; mum promised to ring them later. Finally the crew left, but only after making sure that mum was safely mobile and could get in and out of her chairs. We stayed with her for a while, until about 6:30, at which point we went off to do some shopping and prepare our evening meal.
That was Friday done, eventually.
So to Saturday morning. I got up at 07:30 to find Cathy spread across the bathroom floor leaning towards a lightly used vomit bucket in the bath. Overnight she’d both not taken her seasick tablets, and had removed her acupuncture point wristbands. As a result she felt dreadful. At least we know it is only labyrinthitis, not anything more sinister, so we are not panicking. But yet again my family conspires to make me feel guilty about going away for four nights and three days. She can’t drive with this, so in my absence she can’t respond to mum’s needs if/when they arise. In fact she can barely look after herself; she will need to go to stay with her sister while I’m away.
That depressive anger thing struck again. You lot bloody wait until I have surgery; then you’ll realise how much I do for you all. All of the time.
Anyway, I went to the pharmacist and asked about what else she could take apart from seasickness tablets, especially as she was really suffering from giddiness and general wooziness. Basically there is nothing stronger over the counter, so the best bet was to ring 111 and see if an OOH doctor would prescribe her something. So we did. This was at just before 4:00pm. The third telephone call we were transferred to told us that a doctor would be coming to see her, and would be able to give her an injection to help take away the nausea. By 9:20pm, over five hours down the line, there was still no sign of the doctor, so we rang 111 again, just to make sure Cathy was still on their list.
She was, and an apologetic young woman assured us that there was a doctor on the way, but that she couldn’t say exactly when. So we went back to our waiting, and I got myself a whisky; two fingers. Sod it, it’s Saturday night, have a wild weekend why don’t you Stew? Cathy had realised that she couldn’t stay on her own while I’m away, she’ll go to stay at her sister’s. Go ahead, twist the guilt knife a little deeper, you know you want to.
Meanwhile, reports from the hospital via mum are that nothing has changed with Ian. No notified progress, no notified deterioration. But still very much in Intensive Care.
So we wait. It is now 11:10pm, seven hours since we rang. Cathy has just crawled very slowly to and from the loo for a pee. She uses an upturned stepping stool as a slide to support her along the floor, it is painful to watch, but the vertigo is such that she can’t lift her head, never mind stand up.
I pile three rugs on top of each other and settle down to sleep by the front door so that I can (a) hear the doorbell and (b) answer it in good time. A very uncomfortable couple of hours later, at 1:30am, I give up on it and go and sleep on the front room sofa.
When I awoke at 8:00am, there was no sign of the promised doctor, so Cathy rang 111 again. They were incredibly apologetic, and assured us they would ring back and that Cathy was on the list for the visit. To be fair they did ring back, but although they kept us informed, it was still not until 12:20pm that the doctor turned up. Over 20 hours after we had made the original call. He was very good, and gave her an injection against the nausea, top-up tablets to support the injection, and antibiotics against the ear infection. It would take a week or more to clear up.
So to leave Cathy with a packed bag and a lift to her sister’s from her niece in the pipeline, and go to visit mum. We had intended to visit Ian today, but the timetable was so badly skewed by the wait for the doctor that the visit was not able to happen. Mum didn’t want to go to the usual pub for lunch, instead suggesting we get a takeaway. She wanted a McDonalds, saying she’d never had one before. So I went and got us both a Big Mac and fries, no drink. She enjoyed it, and thought the fries were great (her sense of taste has deteriorated as she’s aged, and actually I thought the fat they’d been fried in was stale).
I got home at about 4:30pm to find that Cathy had already been collected by her niece. Once I had packed my bags, I set off to collect two of the golfers and their gear, meeting up with the others at the Ferry Port. That’s another bit of my “responsibility”: I’d been a member of the golf society for nearly 40 years, and had long since promised, and booked, my car along with my trailer to carry the clubs for this trip. We all got onto the ferry and settled in for a couple of beers and a decent meal, before I made my phone calls to mum and Cathy and off to bed in my shared two-berth cabin.
We were up early for breakfast before the 08:30 (French time, and hour ahead of UK time) arrival at St Malo. The first golf course was St Malo Golf Resort (very posh), about half an hour’s drive from the port. It was a lovely place, and we all set off on our first round of the week in good spirits. The course was really very lovely, and we had a great experience playing it.
When we reached the 16th hole, a par four over a ravine, my phone rang. For some reason I had only a few minutes earlier taken it out of my bag and placed it close to hand in the buggy. It was the hospital. Ian was struggling for breath. It was serious. Somehow when you are on autopilot and not thinking about it, you just hit a golf shot so sweetly. My four-iron shot sailed beautifully over the ravine and onto the front of the green. After we had all reached the green and had completed our putts, my phone rang again.
Ian had passed away.
The hospital asked if I would ring mum for them, and I agreed. She was upset, I was upset, of course we were. Guilty, angry, self-pitying, tearful, the feelings ran through again. The three lads I was playing with were upset and clearly didn’t know what to say or do. Mum told me to get on with my game. What else could I do anyway? I told the lads that we should continue, and we did. I got lucky with a long putt at the 17th, but totally screwed up the 18th. That evening I told all of the golfers that I’d known there was a (strong) possibility of this happening, and that we should carry on and enjoy the trip regardless; the usual banter, jokes, and good company.
The lads responded well, and treated me as usual; no awkward silences, no intrusive checking if I was OK. It was good therapy, a brief respite from the trials and tribulations of my family circumstances. On my return I went to see mum first, and we went to the Registry Office for the Death Certificate. His primary cause of death was “aspiration pneumonia”, brought on by a “haemorrhagic stroke”. So began the massive task of sorting out the funeral, and collecting together Ian’s belongings and assets, as well as beginning to plan to do the same for mum as she had expressed thoughts of moving out of her own home and into a care home.
There was no time to be anything other than active on other people’s behalf. That, I think, was both a blessing and a curse. A blessing that it took my mind off my own illness, but a curse in that when I did contemplate my own situation the black dog of depression really did make me feel sorry for myself. But you muddle through. I think I tend to think quite logically, and can recognise things for what they are. Things that have happened cannot be unhappened, so I tend to try to deal with it, and move on. Why am I angry and tearful? Because I am depressed. OK, that explains it. Move on. I just do what I can when I can for whoever I can. And sometimes that “whoever” includes me.
Stewart's Blog 