Category: Uncategorized

Is our future actually an example of Hobsons choice?

I was thinking today about the future for our small family, and it struck me that we dont have much of a choice. I desperately want this whole situation to be over, but that would mean losing my wife. On the other hand I really dont want my children to lose their mother, which would mean prolonging her pain and regular suffering. So the two potential outcomes both bring heartache.

Hobsons choice describes an illusion whereby there are multiple choices, but in reality only one thing is offered. In our case I know it isnt a choice but two likely outcomes, but the outcome is really the same.

How do you reconcile this feeling, wanting something to end knowing it will bring pain, or accepting it wont end knowing that will bring a different pain? I’m still trying to figure that one out. The hardest part as a parent is knowing that I will have to at some point in the probably near future tell my two children their mother has passed. I will have to help them navigate through a world without a parent, but at the same time try to navigate my own path through the grief.

I dont mind admitting this is something i come back to alot in my thoughts, and is the one thing that has caused me to breakdown. I can deal with most things this disease has thrown at us, but the thought of the faces of my children is unimaginable, and terrifies me.

And as I have written before, the knowledge this will happen also has no time frame. I know it will happen, but do not know when it will happen. We could lose her tomorrow, or next week, or next month, or even next year. She may be lucky and have many more years ahead, all the while with death holding their scissors around the thread of her life.

Happily my wife is sounding stronger, and is eating much better. She took my son bowling with her mother today, though she couldnt bowl as the pain in her stomach prevented it. Are we downplaying this ache? I hope not, and are being careful, but right now we are into uncharted territory, and any of these pains could be more sinister.

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Spring Heatwave

Strange day yesterday. We had a mini heatwave in the UK, and the temp hit 19 degrees. My daughter was off for Easter hols, while my son was still in school, a difference that always causes friction. I even went for a run in the heat, which was a bit silly.

No, the strange thing was how tired my wife got. She hadnt done a great deal all day, had a friend round in the garden as per the new guidelines, and done some tidying, but by 8 pm she was out for the count, lying in bed, fast asleep.

We are seeing an increase in her tiredness. Most evenings she will fall asleep early, and be struggling to get up in the morning. Along with a sick feeling, things are not looking good. Her symptoms are very similar to when she was originally diagnose. Her belly even looks a bit swollen, which happened before when the acites built up in the peritoneal cavity, caused by the tumours.

If she doesnt start chemo by the end of May, I will be very surprised.

I have said before but it is affecting the kids, and we are having my son not sleeping well. He wakes in the night, but at least now I have got him to come to me and not my wife. Hopefully the start of outdoor sports will help as football training starts tonight.

We are taking a break over Easter, and getting away for a few days (within the guidelines), and the change will do us the world of good. We have had over a year at home together, and we need a new space to be trapped in. Being in our house means that all the DIY jobs that need doing become more pressing all the time, and dissatisfaction kicks in. Personally I want to get some fresh air, and hopefully a full nights sleep.

Coming out of my cage

It’s been a while since I have written here. No, denying, covid lockdown has been tough. And long, so very long.

But now, both my wife and I had the jab. Astra Zeneca if you must know. I had what felt like flu for a day and my wife was a little worse, but that was to be expected with no spleen. So far no long term side effects, but the radio does buzz when I pass by. Waiting for my instructions from Bill Gates though.

But mentally things are still hard. My wife still can’t drive and that is doing her head in, extreme depression from the awful situation has kicked in. This is how life will be, her feeling nauseous and tired every evening.

The latest results show some progression in tumour growth, and will probably mean treatment by the end of May. We are not looking forward to that.

Sometimes I wish the scans were more conclusive, rather than this delaying all the time, wait a month we will do more scans, maybe treatment in a few weeks. Some one said it is the waiting that is the hardest for carers, and I agree. I feel we can’t move on with our lives with this hanging over us, five years of intense pressure while our world is on hold. It feels bad to say but I sometimes wish it had ended a few years ago.

The children are feeling it too. My son is very clingy, and knows she isn’t well. He is waking in the night, and that doesn’t help us.

End of lockdown should be a joyous time for people as we can see loved ones, but for us it will be a return to the awful reality that has been hidden and obscured by covid.

Continued Lockdown

I write this the day after Boris Johnson has announced extra measures to try to control the CoronaVirus. I am finding this very tough. On top of everything we have had to put up with on a personal front for the last four years, it now feels like the world is falling apart. I havent been able or inclined to update for a few weeks – there doesnt seem to be much point.

But we will prevail – despite the hard work needed. I despair at times about my fellow man – the Covidiots out panic buying, refusing to wear masks, putting others lives at risk. My youngest went back to school for three days, before a positive test took his class and two others out for two weeks – one family had been away on holiday, had symptoms, and still came to school. Luckily he was fine, and we are so far, but it goes to show the potential areas for concern.

My wife was back in for scans today. The hospital only allow her to go on her own, and she has to have a couple of masks with her. It is a big worry – a close friend caught Covid at the same hospital. Then there is the worry about the disease – she is feeling tired, and bloated – very similar to when she was first diagnosed. We have been lucky, but I fear the worst.

I am struggling to take my mind off working from home, money issues and health. I am resorting to my favourite music of my youth – Jellyfish, Blur, Housemartins – and trying to regain that feeling of 30 years ago. It wont be back…

This is todays favourite – a blinder of a retro tune at the time. Members of the band have since gone on to play with Beck, do TV music, work with Morrissey, but never reached the heights of the Bellybutton album.

I’m caught in a trap…

I can’t walk out…

So we have basically been under a form of house arrest for over a week now – we have enough food, and have managed to get supplies. Our local village has had some of the business owners club together to deliver food and essentials to households. We can’t help deliver as my wife is one of the 1.5 million in the UK who is at extreme risk, but we have been able to man emails and so on.

The atmosphere is very bizarre – school is closed, so we are trying a bit of home schooling. Our eldest is at secondary school and they set work on line, whereas the youngest is primary, so we have tried all sorts. Lots of maths websites and past paper kind of thing. And we have played a lot of football!

I can work from home, like most of the rest of the world it seems, and that brings its own challenges. Looking at files is hard without a printer, but we are learning. Luckily the weather has been good so far, so we can go in the garden. My wife isn’t supposed to leave the house at all, but if this keeps her from the virus it will be worth it. So far she is staying healthy.

We did go out to clap the NHS workers, which felt a good thing to be part of. They are an amazing group of people, and we don’t appreciate them enough in this country.

The weekend was strange, not being able to go anywhere. It was much like the rest of the time, but I didn’t turn the work computer on.

Our biggest concern is getting supermarket deliveries, and also cleaning every delivery that comes in the house! We have never been so tidy!

What is getting us through? Lots of TV – some joy in the Disney + and the Mandalorian. I have listened to some new music – the latest Pearl Jam is very good, a solid addition to their career – hopefully they will still be able to tour this year. I have also re-discovered the work of Mike Nesmith (from the Monkees fame) and his solo career. You may know the track Different Drum that was covered by the Lemonhead. It sounds nothing like the Monkees, and the nearest touch point is probably Gene Clarks seminal album No Other. You can find them both of them to buy on these links:

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Finally REM is always high in my thoughts. Keep safe everyone.

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.