It didn’t begin then. In fact we have no idea when it began. But when we became aware that things were wrong happened on a Thursday in March. Maureen was feeling a little stiff. She turned her head sharply in an effort to relieve the ache and there was a loud crack. Instantly, her neck seemed to lock in place. She could still move her hands and feet (the first thing we checked), but she could barely move her head left or right, up or down.
The stiffness in her neck began to ease over the next few days, only to be replaced with pain in the lower back and in the leg. Movement, just getting out of bed, became difficult. “Bones,” the doctor said helpfully when we got to see her, and Maureen was prescribed painkillers. The painkillers didn’t make much difference, and over time stronger and stronger painkillers were prescribed. I assumed it was the effect of these ever stronger painkillers that left Maureen increasingly dazed and confused. She became unable to tell the difference between dreams and reality, and her speech became slurred. She also lost her appetite. In the week before things came to a head she ate, in total, two teaspoons of jelly.
I was becoming ever more worried. I knew Maureen’s mother had had alzheimer’s, and it was something Maureen was afraid of, and this increasing confusion was beginning to look alarmingly like alzheimer’s. So, six weeks to the day after that crack in the neck, I phoned the doctor yet again and described Maureen’s symptoms. The response was not what I expected: “Get her to A&E straight away, she could be having a stroke.” To this day, Maureen is convinced that my phone call, and my rush in getting her to hospital, probably saved her life.
I called 999, the first time I have ever done so. I was told an ambulance would be here in 20 minutes, it was actually sitting outside our house just five minutes later. That was the first of a string of interactions with ambulance drivers and hospital transport that have been almost unfailingly positive. But then, everyone we met after this point was wonderful.
We spent that afternoon sitting in A&E at the William Harvey Hospital, Maureen getting increasingly restless in a wheelchair, me just wondering what on earth was happening. Periodically, Maureen would be wheeled away for some test or other. After a while, we got to talk with a doctor, who asked her some simple questions: spell your name backwards, she couldn’t. Was it alzheimer’s? No. Was it a stroke? No. But he was going to keep her in overnight. This seemed like good news, but I wasn’t sure I felt reassured.
Late that afternoon we were taken to a small ward where Maureen got out of the wheelchair to sit in a comfortable chair while we waited for her to be admitted. At this point she was offered, and ate, a cheese sandwich, the first solid food she had eaten in a week. Also at this point the fire alarm went off. None of the people in the ward was in a position to move easily or quickly, so we sat looking at each other wondering what to do. By the time someone appeared with a trolley to move Maureen, the alarm was over and we all returned to our seats.
Then Maureen was wheeled away to start receiving treatment. When I was able to join her, briefly, a little later, I was told that her blood salts were way out of alignment. The potassium was too low, the calcium way, way too high, and this would cause confusion. They would need to sort this out before they could begin to find out what else was wrong with her.
The next day, when I went in to visit her, not knowing if she would be coming home or staying in or anything else come to that, I found she had been moved to the Richard Stevens Ward. Go right down that corridor to the end, turn left then keep on right down that corridor to the end, then left again and immediately right, then down the stairs and turn right. I found it. But Richard Stevens was a closed ward and they were reluctant to let me in. Visiting was strictly limited and had to be booked in advance. But because she had only just arrived on the ward (less than an hour before I turned up) they decided to bend the rules. Over the next few weeks they would bend the rules many times in our favour.
That first day I’m not sure she knew I was there, or who I was. A young man, who I would only see again once just before Maureen came home, was trying to get her to eat and at the same time fighting to stop her pulling out her catheter. A doctor spoke to me, but he couldn’t give me a prognosis because as yet they didn’t even have a diagnosis. But he did say they were going to put mittens on her to stop her pulling out the various lines plugged into her body.
Over the next few visits, there were slow signs of improvement, but she was still confused. I heard stories of strange nighttime escapades, of all the nursing staff walking out on strike, of an unlikely expedition to Greenwich, and once, when her brother was visiting with me, I received detailed instructions about a book she wanted me to find for her, a romantic novel set during the early days of aerial mapping in British archaeology. I looked, believe me. She was aware of me, aware of her surroundings, aware that she was ill but not exactly sure what that illness might be. There were glimmers of the old Maureen emerging, but not yet consistently or for long.
It was during this period that one of her doctors, a very nice woman of Iraqi origin, took me to one side. “You know it’s cancer,” she told me. I didn’t know. The calcium that was in her blood causing the confusion had been leeched from her bones by the cancer. The cancer was widespread, it was in her liver and in her breast. It was too widespread to be eradicated. The condition was terminal.
That night, and for a couple of days that followed, I did my mourning before Maureen even knew what was wrong with her. And yet at precisely this time the old Maureen was returning, and she seemed better every day I visited. And yet, I wasn’t really seeing any improvement, only an end.
All this time the confusion was in retreat. A few days after I heard the news, I was there when Maureen was compos mentis enough to be told about the cancer. She took it better than I had. But then, the news as it was related to her, seemed somewhat less cataclysmic than I had heard. She was very positive, talked determinedly of seeing my 70th birthday this autumn, our 30th wedding anniversary next summer, her 65th birthday the following spring. But there was inevitably an emotional toll that she mostly kept secret. It was around this time that I received a phone call from her one morning, she felt bad, she was convinced she was on the point of death, I must come and see her now. I called the ward: yes, do come in; she’s fine, but your presence will help. I got there mid-morning and spent three hours, I think, talking calmly and feeding her very thin slices of apple. That, I think, was the turning point. From that moment on the improvement in her condition came rapidly. The confusion disappeared more or less completely. She began demanding clothes so that she could get out of bed and sit in an arm chair during the day. And she wanted me to bring food in (the catering staff were generous and helpful and did their best to find the sorts of things she could enjoy, but hospital food is hospital food, so she wanted egg mayo sandwiches and chocolate and fruit and so on). And she wanted books and newspapers and other stuff.
She was undergoing all sorts of tests throughout this period. She was taken away for scans (I visited once when she had just returned from such a scan and she slept throughout the entire hour we were allotted), PET and MRI and whatever else they had. Blood was being taken every day. She developed a massive bruise probably a couple of inches across just below the elbow on her left arm, which took nearly four weeks to fade away. And occupational therapy were taking her away to walk a few steps along the corridor or climb a set of stairs. It was becoming routine for people who had seen her when she first arrived on the ward to turn up and tell her how much better she was looking. She was looking very well.
By now, oncology had mostly taken over her case. They were concerned that the cancer in her bones might have weakened the spine, so they took her to be fitted with a back brace, which she called her exo-skeleton, and later, more prosaically, her jacket. Also, because of how advanced the cancer was in her liver, they wanted to start chemotherapy right away, before they even had full results from the biopsy they had taken.
At the same time, they were now starting to talk about her coming home. I had a visit from one of the occupational therapy team. Yes, the house was fine. They could set up a bed in the dining room. Everything we needed would be provided. They could arrange for grab rails to be set up along the steps up to the front door. This was where I could go to get a wheelchair. The only sticking point was the care package. The initial thinking was for three home visits a day, but that could take several weeks to arrange. Over the next week the care package requirements went steadily down. Oh she probably only needs someone to come in first thing to help her get up in the morning. Oh, we’re impressed with how well she’s doing, so we can get away without a care package.
Meanwhile, at home, I had people come in to quote for a stairlift. It was all possible, but we would need to demolish a cupboard at the top of the stairs. And so, one day short of four weeks after we rushed Maureen in to A&E, our mate Gareth was busy knocking down the cupboard when I got a phone call. “This is William Harvey. Have the guys been yet about the bed?” Some men had been in first thing that morning to take our dining table apart and move it, and the carpet, upstairs. But there had been no word about the bed. “Er, no. Why?” “Oh, we’re sending Maureen home this afternoon.” Maureen, I knew, was having her second session of chemotherapy that morning. I would need to go in to be with her, because if nothing else I would need to take a case in order to bring home all her stuff, including what the rest of the ward had taken to calling her library. To allow time for the chemo session to end, I would need to be there around 2pm, which would mean getting a train around 12.30. But first I had to be there for the bed to arrive and be set up. It came just before 12. It came complete with armchair, foot stool, commode that doubles as a wheelchair, waterproof stool for showering and a couple of other things. It was all set up very efficiently, but I was beginning to fret about time. Then Gareth said, “Don’t worry, I’ll drive you there in the van.” He checked with Shaun, the builder who has overseen all the work we’ve had done in the house over the last few years, and all the work we’re planning to have over the rest of this year. But there was never any question, Shaun just said drop everything and go. So I rode up to William Harvey Hospital in a slightly ricketty builder’s van.
I reached Richard Stevens ward dead on two o’clock, left a couple of big boxes of chocolate with the nurses who have all been marvellous, and went to see Maureen. She had just got back from chemo, had a belated lunch, and was contemplating a nap before I was due for my usual visit at 3. When I walked in with a suitcase she looked at me as if she had no idea what was going on. Then two people from occupational therapy bustled up behind me. They had not been able to find her all day while she was in chemo, so they hadn’t yet told her she was going home. Then they hurried her away to do one last set of exercises climbing stairs while I got on with packing. We managed to say goodbye to only a few of the staff Maureen wanted to thank, then she was put into a wheelchair and we started away. At the last moment one of the occupational therapy people asked if they had left a walker along with the bed. I said no. “Oh you must have one. Here, take this,” grabbing a walking frame seemingly at random.
At first it seemed like we were being taken to the oncology unit, but at the last minute we veered off into what was called the Discharge Lounge, though I found myself unable to stop thinking about it as the Departure Lounge. And here we sat and waited, and sat and waited. It took something like two and a half hours for Maureen’s cornucopia of medications to arrive from the pharmacy, and another hour after that, with the Discharge Lounge almost emptied out and getting ready to close for the evening, before our transport home arrive. The two guys on the transport, along with just about every other member of their species we have encountered, were chatty, funny, and incredibly helpful. I’m not sure Maureen would have been able to climb the steps into our house without them. She was exhausted by now, spent a couple of hours in the armchair before finally managing to lever herself up onto the bed, and I was beginning to wonder whether we should have insisted on that care package after all, and whether I would be strong enough to cope.
The next couple of days were really stressful for both of us, as I spent my time worrying that I had taken on far more than I could manage. I was moving furniture around, cooking meals while slowly trying to take on board the fact that chemotherapy had changed Maureen’s tastes, and unpacking all the things that we had bought to make our lives easier while the hall filled up with cardboard. Perhaps the best purchase I made was a selection of Amazon Echo Dots and Echo Flexes, which gave us Alexa throughout the house. The fact that we could talk to each other even when we were in different rooms made a massive difference. And by that first weekend we were starting to get to grips with our new daily routine. Things were very different, and always would be, but at least we were fitting in with the new necessities and starting to find time to relax together again.
Then, on that first Monday, we both went back to William Harvey for a meeting with Maureen’s oncologist, which turned out to be the most positive event since this whole mess started. We learned that, even after only two chemo sessions, the cancer in the liver was responding well. We found out that a bone specialist had looked at Maureen’s scans and decided that the spine was nowhere near as fragile as had been thought, indeed it was pretty near normal, so she no longer had to wear the back brace. And, perhaps best of all, they had identified the breast cancer that started all this as the most common type, and that is one that responds well to hormone treatment. What this might mean in the long term we don’t know, but at least we can start thinking about a long term.
And so it goes on. It is now just over two weeks since Maureen came home, and just over twelve weeks since that click in the neck that started it all. We are still learning how to cope, we are still experimenting with what food and drink works best for her. We have had issues. One of the tablets that Maureen has to take twice a day ran out. Our GP is supposed to renew the prescriptions, but hadn’t bothered (no surprise there: our GP surgery is one of the worst rated in the country, but provision of GPs in Folkestone is so bad that there is no chance of changing to a better surgery). So I contacted the oncology department at William Harvey, who in turn found a doctor at Kent and Canterbury hospital who would write a prescription for us. So yesterday, I had to go over to Canterbury to collect the prescription, then I went to get it filled. Except it was a bank holiday, so our usual pharmacy was closed. One of the pharmacies that was open in town was at Sainsbury’s, so when I went shopping I called in there: but they didn’t have the drug in question in stock. So I had to make yet another expedition to find that Boots in town was open and, after a lot of waiting around (the drug in question is a morphine derivative so there was a lot of checking involved), I finally came away with the necessary drug. But there have been good times also. We are tentatively starting to have visitors. On Tuesday our friend Tracey (who was a godsend while Maureen was in hospital) came to visit; and on Wednesday Maureen’s brother and sister-in-law spent the afternoon here. Two visits on consecutive days was probably a bad idea, Maureen was tired out most of yesterday, but they were also invigorating. We’re hoping to have one or two more visitors over the coming weeks.
Meanwhile the transformation of the house by Shaun and Gareth is starting. Most of this is stuff we planned long before Maureen fell ill, but surprisingly the plans work really well at future-proofing the house to accommodate Maureen’s new circumstances (and perhaps also my increasing age). It seems odd to say it, given the situation, but life is good.