Sitting in the hospital car park

It’s that time again. I am sat waiting for the MRI, CT and blood tests to be over. These happen every six weeks or so, sometimes more if the consultant is concerned. The results come next week.

This time is a little different. For a few years my wife wore the same clothes to hospital. They were washed as soon as we got home and then used for nothing else. Last weekend we had a sacrificial fire pit, and burnt them. Hopefully this will remove the bad vibes and a new start. We shall see.

She has been doing ok recently. Not good, not too bad. Just ok. Doing anything throughout the day does mean she will be asleep by 8pm. As I said before the fatigue can be bad.

Everyone who has been through this process will know the endless cycle of appointments. It can be relentless. It does feel a bit like we just keep kicking the can down the road, as the scans are very often not conclusive. In many ways the process is akin to pulling off a plaster slowly. Non stop pain over a longer time. 

Would the short sharp shock have been easier? That is an impossible question to answer. I do wonder if the disease is holding us back. We are defined as the family with a terminally ill mother. 

This time I can’t guess the outcome. There is more bloating but I don’t know what that means anymore. She presents with levels of disease that in a new patient would ring alarm bells, but with her is stable. She doesn’t want more treatment this year however. Which does mean more waiting then.

I’d like to know for sure, and I’d like to be out of this process. However the exit is only at a greater cost. What would that do to the rest of us? We can’t tell. So we will keep on going. That is all we can do.

Trials and Tribulations

It’s been a while since I updated this, so first, Happy Christmas to all. We had a nice time, usual rushing around visiting relatives, but we have managed to get some rest. It is hard – my wife doesn’t have the same energy as she used to, and also struggles with having people staying – she likes things just so, and not having people mess things up!

The big news came just after the last lot of scans (see my last post). My wife was called to say there could be a place on a clinical trial. This could be massive – apart from this the only option might be chemo. One person had dropped out (reaction to the drug and nothing sinister), and so my wife had to go in for scans, and blood tests. It was two days in the Marsden – which was quite stressful for her, as she had mentally come to terms with no more trips in. The trial itself would entail an overnight stay every 6 weeks, and then a weekly visit to have bloods taken. A big commitment, but hopefully worth the time.

We were unsure at first – this is Phase 1, so very early days, and obviously means no guarantees of what the reactions might be, how major the side effects could be, and no knowing what the mental impact would be. My wife really struggles mentally with going into the Marsden, and so this could be a last straw.

After the usual delays, and issues with blood taking and results, we are now waiting to know whether she will be accepted. We hope she will, and have mentally come to terms with the potential process.

So we will start the new year with some hope. Fingers crossed 2020 will bring some good progress – it would be a change for the new decade.

Back to life, back to reality

Things slowly started to get better with time. My wife was brought out of sedation, and over the days was more responsive, eating solid food and drinking bottled water. The children visited a few times and after two weeks or so, she was moved out of ICU.

I then had a battle with insurance – as she had come in through A&E, it was harder to get her moved to a room with a bed, rather than a ward. Anyone who has met my wife will know she is very particular, and having noise and movement around her didn’t help her mood, or aide her recovery. Thankfully everyone played ball, and within a few days she was moved to the Marsden in Sutton, closer to home.

I’m not going to go into too much detail of the remaining few weeks – that isn’t the point of this. The immediate threat was over, now we had to deal with the recovery, which was slow, but after 5 weeks in hospital, she was able to come home.

But it was a very different person who came home – after leaving the home she had had near total major organ failure, a stroke, lost sight in the left side, and was now dependant on even more drugs. And the toll on the rest of us was hard – we had been planning a holiday, and now had to increase the care around the house. We had had relatives staying with us constantly – and that causes strains. We appreciate their help, but sometimes need to be able to close the door on them! I hadn’t coped well with the stress, and neither had my mother in law, which meant things were not easy.

So where are we now, nearly a year on from that momentous few weeks? Thankfully my wife is slowly getting better – the steroids have decreased, however the eyesight still isn’t fully back. There are improvements, but not enough to drive. We have to be aware of any small slight illness – a cold for you and me, might be something more sinister for her. Never again will we leave things, and discount them as not serious.

I don’t want to go to Chelsea

My brother in law helped get her settled, writing her details on the board, and ensuring he knew the nurses. ICU at the Marsden was very different, a bright open room, lots of seats, and more up to date equipment. Not to say the last hospital wasn’t good in terms of treatment, but the modern nature made you feel more confident.

She was still in a coma, and would be for a couple of days, but now we were with the doctors and nurses who had been seeing her for two years. They determined that the issues had been caused by the immunotherapy, basically causing her body to over work, and start shutting down the major organs. Things were in a bad way (not as bad as the previous doctor thankfully), but we could see the way forward.

Now family could start visiting, and especially when they brought her round. In her typical fighting way, she was soon engaging with us all, and bossing us around. The kids could be taken in to see her as well (which they thought was great fun – mainly because they rank hospitals on hot chocolate). They still didn’t really understand the severity of the situation.

The major logistic issue was that the hospital was a train away, and this made it harder to take the kids for a quick trip – we had to combine it. My parents came down as they had now finished school, and so we could go up and back easier.

It was a Saturday when we had visited, and I was on my way home when I got a call half way back. She had had a minor stroke. Started with convulsing, and scared my mother in law who was still there. I was stood in the rain by my car at the station, not knowing what was going on, or what to do. They settled her, and sedated her, before we could all breathe again.

It is strange writing this down, as this a major thing to happen to a body, but feels like one more bump on the road for us. There have been long term implications – she cant see down the left hand side, has to take a multitude of drugs to counter act the effects, along with those taken for the other surgery, and it means our lives are a considerable amount harder. She doesn’t have the same energy, cant drive, gets tired, forgets things, cant see the children on one side, trips over the cat, but she is still alive. For one terrible evening, for one more terrible evening, that might not have been.