The worst days of my life (so far)

In a melancholy mood, I got thinking of some of the bad days we have had. My wife isnt great right now, today was a day where she didnt even have the energy to get up and get dressed. Her stomach is really bloated, a sign that the ascites is back (this is a build up fluid caused by the tumours from her cancer).

This all means she is extremely uncomfortable. If you didnt know her, and saw her clutching her bump, you would think she was pregnant, but that ship has sailed. The ashen face and thin arms and legs would also be a clue that all is not well. Bones jut out from her chest, and she is very frail on her feet. A fall a couple of weeks ago has really knocked her confidence. She was tripped up by our cat and fell flat face first on the patio, cutting her nose and cheek, and bruising her lips and eye.

I feel we will be lucky to see her at Christmas this year. I havent seen her like this before outside of treatment, and additionally havent seen her deteriorate so quickly in the past. She has gone from seemingly doing fine, to losing all that weight and becoming very different. I worry alot about her now. Her fall happened when I was at work, and it would be a problem were something to happen again. She has moments where she will drop things, or burn things, and doesnt have as much of her mental capacity as before, especially when she gets tired. And she gets tired easily. I said she hadnt got dressed today, but she has spent most of the day on the sofa, and had an hour of shut eye this afternoon, despite not doing anything.

This has brought to mind the reality that we may be facing another awful day very soon. It is inevitable, an inevitability that is both too great to consider, and too true not to. We have had a few worst days of our lives over the last six years, and they all contribute to us feeling nervous and apprehensive about where we are heading.

The first one was the day of my wifes diagnosis. This was in a regular hospital near us, in an NHS doctor meeting room. This was the latest in the line of a few meetings with this doctor, as they had been trying to determine what was wrong with my wife. Her symptoms said something, but many of the regular markers wouldnt play along, and the medical staff had been baffled. We now know she has quite a rare form of mesothelioma, and so not many of the doctors at the regular hospital would have seen it before.

We were ushered into this room, and both sat facing the doctor on rickety chairs. I recall placing a bottle of water on the floor next to me, as we pulled out notepads to write down the next stage in this journey. It was then that I realised there were more people in the room with us than normal. Usually just the one nurse would be there, this time there were three or four extra (the true amount eludes me now). ‘This is strange’ I remember thinking, but I was too slow and preoccupied to consider why they were all there.

The conversation is now a blur, fully lost to the mists of time, but I clearly remember after the doctor said my wife had cancer. My mouth went dry, and I was desperate for the water I had by my chair, but unable to move to get it. I didnt want to disturb my wife and annoy her by moving in her eye line. I also just wanted to scream at the doctor not to say the word ‘CANCER’ as if by him not saying it, it wasnt real. ‘Take it back, dont say that’ my inner voice was shouting, as sweat trickled down my back. I finally just wanted to get out of there, I wanted to run and leave. I had to support my wife, but my own survival instincts kicked in and wanted to take me away.

We were ushered into a room with a couple of the nurses, understanding now that they were trained cancer specialists and also trained counsellors, a logical step to take for us. There wasnt really much they could do at that time however, as we were too numb to take it all in. So many questions, but no way to articulate the words to ask them. Some things you really do need to take the time to process, and this was one of them. We would be off on our non stop journey meeting with specialists at the Marsden in Surrey, trying to understand the options going forward.

One personal note from that day. After we drove home in silence, and told relatives, the next day I went to tell my manager the news, and explain that my life was about to be thrown up in the air. I was the supervisor of a group of four, working fairly independently from my manager with a more day to day reporting line to managers in the US. When I was about to enter his office, his manager asked to speak to me, so I agreed to pop in to his office straight afterwards. It transpired that they wanted me to take on a new job, supervising a much bigger group, but at the same time as there was no back fill, keep oversight and management of my existing group. A move with alot of extra responsibility reflecting the good job I had been doing up until that point. I had to decline this due to the news of my wife. I would say my career has not recovered since. On such moments life can hinge.

After the days of surgery and chemo, which had more optimism involved as we hoped for a fight against the disease, the next worst day of my life, arguably the toughest. It was a weekend at the start of Oct 2018. We were going on holiday the next week to celebrate the end of my wife having immunotherapy. However during the Friday she developed a bad back, and started struggling with her breathing. That night she barely slept, and didnt feel great the next day. Stupidly we thought it was a muscle problem, as she has had a back issue in the past. It wasnt dear reader.

I tried massaging her back, and using various ibuprofen gels, none of which worked. Sat night was worse, and the only way she could sleep was sitting up right. After discussing it we finally called the helpdesk at the Marsden to get some guidance, and were told either bring her in, or if it got worse head to A&E. That afternoon we went to A&E, children in tow. Luckily our next door neighbours could come and collect them, and my brother in law came to stay with them. The wait was long, again sat on plastic seats in the brightly lit NHS. It took a while to get through the waiting room, before we were in a triage type area, where they did tests, and as her breathing was now much worse, hooked her up to oxygen. Strangely we were in a cubicle I have previously taken my daughter with a badly bruised ankle.

She was really struggling for breath by now. They thought it was pneumonia, and to be honest it may well have been, I can barely remember. We were moved up stairs to a ward where they found a bed away from the madness of A&E. The ward was full of older ladies, some not quite the full ticket. I had one strange lady accost me by the entrance at one point ranting about how the doctors had killed her son. Very surreal.

By now it was very late, and watching my wife I knew it was not going to get better quickly. She was hunched over, focusing on getting life into her lungs. Our mantra became just keep breathing, and at one point we bought her a new pair of trainers on line to take her mind of the ordeal. But her lungs were only taking in about 10% to 15% of the oxygen required. A ridiculously low amount. The call was thus made.

They had to put her in an induced coma and move her to a hospital with the ability to properly fix the problem. Her eyes widened and a look of shear terror spread across her face, while again my back became soaked in nervous sweat. A horrible choice of danger from a coma or death from slowly suffocating. Eventually she handed me her jewellery for safe keeping, changed into hospital robes and was wheeled into a different room to be put out, as I stood there with her bags wondering what to do.

The children cried when I told them the holiday was off, and the next few weeks were filled with trips to visit at first a comatose wife, and then someone brought round in ICU, having her suffer a stroke and recover to someone different to the person who was taken in on that Sunday afternoon.

So now I know we are facing another of these types of days soon. The fun thing is when faced with a terminal diagnosis, you never know when it will come. (That was a joke by the way, the fun comment, not the terminal diagnosis piece). We currently see a slow decline in her body. That may get better though, be the result of a virus or such like. Or could quickly go the other way. And then throw us into another awful day of hospital rooms, bleeping equipment and oxygen masks all helping to keep her body alive. Until the time they dont keep her body alive.

It is impossible to properly cope with this knowledge, both as patient and as a carer. You need to compartmentalise, shut the bad thoughts in a part of your brain to not affect your day to day life, otherwise you wouldnt function. I guess that is why patients of a terminal diagnosis have such a go get em attitude, trying to live every day like their last, because, well, every day could be their last. The rest of us dont really understand that mentality, we dont have the frame of reference that impending death brings. The rest of us have to try and cope with that awful knowledge the best we can, while also preparing for an eventuality that goes beyond losing the loved one.

This was written today to the tunes of Emmett Finley, and I can highly recommend checking him out.

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