My wife was in for the second round of treatment today, as planned. At 2.30 I hit a call from my mother in law who was in with her that something had happened, and she had had a reaction. I didn’t know what to do.
I raced to make sure the kids were ok, and got to the hospital. She had lost consciousness, and they had stopped the trial. After some time she came round. Thankfully she seemed ok, but was kept in.
While going it hit me. I don’t know what to do in this situation, even after all this time. And why the fuck does bad stuff keep happening
The trial day was a few days ago now, and we have been quite lucky so far. While the day itself was stressful, and staying in overnight is not brilliant from a mental perspective (for my wife – she now has to have a whole suite of clothes for hospital only), things are settling down.
The outward impacts are minimal – she has a sore arm from the injections, and is tired , and likely to get more tired as the days go on. The tests also don’t show too much untoward, low platelets as we thought might happen. This is the area we have to keep an eye on, low white blood cells could be the downfall of this whole trial.
And this means that agin we are in a position of being in limbo – not sure what is going on, waiting for more positive news. I think I mentioned before the feeling of kicking the can down the road. Unfortunately there is never a sense of a positive stride forward, we seem to bumble along, waiting for the next thing to hit. I’m sure that isn’t the case for the doctors, but that is how we seem to be.
From a personal point of view, the stress is taking its toll. Almost constant headaches, and my tinnitus is back. The Christmas break had meant lots of sleep and rest, and now I am back at work I am seeing the impact of early starts, worry and lack of sleep. Add in the fact that only one of us is working, and we are really missing the second salary, while my wife is very keen to make the most of her time, none of which seems to come cheap! Any hints and tips you may have will be very welcome, please comment!
Anyway it is Sunday, my son won his football match yesterday, and there are lots of jobs to be done, so time to go. Let’s hope we don’t have any further change to her health.
We headed into the New Year with the knowledge that they needed to redo all the tests and re consent for the trial, due to the steroids my wife was taking. This was bloody annoying as it meant three more days in various hospitals, with numerous bloods being taken, and an awful lot of hanging around (what is it with hospitals and waiting around?).
But the trial has started today. She went in this morning, and had the two injections and blood tests and whatever else. I wasn’t there, my mother in law took her as I had to take care of our children. She will be in over night, being monitored. The trial is for a form of radiotherapy, mixed with other drugs.
The most worrying thing though is the potential risks. This is phase one, so really early days, and we have no way of knowing if it will have any benefit. But we also know it may have considerable downsides, and this could lead to the only other option (chemo) not being available (if she gets sick from the trial). It is damned if you do, and damned if you don’t.
So mentally it hasn’t been a great few weeks. Let’s see how the drugs go.
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.