Bloody hell, that was a freezing cold week ahead of the scan results

So we had another eventful week last week and the start of this. The Monday before last we were having smart meters fitted for our gas and electricity, against my best wishes, but required for our new deals. It saved us money, which in the current climate was a no brainer. Or so we thought.

The man came to fit them on a bitterly cold day, and to be honest didnt sound very convincing. I was work, and my wife was at home texting me, saying he wasnt filling her with confidence. Then he dropped a bomb shell.

During his tests to check our gas supply, he thought he had detected a loss in pressure. A loss in pressure meant a leak somewhere. And that would have meant turning the gas off at the meter, capping the pipe, and leaving us with no gas until we could get it fixed.

Now, my wife gets tired easily, and struggles to hear, and so I jumped straight in the car to come home from work and argue the point. ‘My wife is terminally ill’ I would say, persuading him to not turn it off. However, all his tests did seem conclusive, and I couldnt really leave gas leaking, especially when we didnt know where it was leaking from.

So he left us with no gas, which meant no heating or hot water, and a hob that didnt work. Luckily the gas emergency folk gave us some heaters and a hot plate, especially when they heard my wife was very vulnerable. This did mean we could spot heat the house, ensuring my wife was warm. I have mentioned before that she doesnt react well to getting cold, and having a cold house could have really injured her.

We had some hot water in the tank, and I thought the immersion would top it up, but it seems that was broken, so from Weds onwards we had none. A cold shower at this time of year wasnt fun, and the only to make it close to bearable was to have a heater in the bathroom, so the room was tropical. Not very safe though.

Our gas engineer friend was unfortunately away on holiday until the Friday, but did come as soon as he got home, worked out what to do, and then came and fixed it on Monday this week. So nearly a week of cold weather, and cold showers, during a time when the temperature was hovering around zero.

Oh and we had my mother in law staying as she and my daughter were going to see Moulin Rouge, a Christmas present, that by all accounts was very good. She was also staying to take my wife to her latest scans, which were a little traumatic with my wifes bad back.

She had to have an MRI, and as anyone who has had one will know, you need to lie still for 40 minutes, which wasnt easy with the pain she had. I stayed at home and made sure the house was warm when she got back.

The results arrived today, and they are a similar tale to recent results days. The disease is close to stable in some areas, but there is some small growth in the newer areas, including the liver, muscles, kidneys etc. My wife has already said she doesnt want any treatment right now, as she is in a good place, and there is no guarantee that whatever they give her will do anything. However she is concerned about these new growths, even if her oncologist seems calm right now.

I feel frustrated. I want the doctor to give us some definitive news. I feel like they are not doing anything, even though I know they are. By saying that we will scan again in April, I feel that we are still waiting, twiddling our thumbs. I see my wife, and she is very frail. Her arms and legs have skin hanging off them, while her stomach (where the main disease is) looks swollen and tight. She struggles for breath, and gets really tired very quickly.

She takes a long time to heal from the smallest cut, or bang. This injury she got at new year when she fell over is still not healed, and she has a bump on her ankle that alternates bright red and painful to touch.

I will admit I cried on the way home from getting the message about the results. After nearly 8 years post diagnosis, with the last few years, I feel so powerless.I see her deteriorating, see the daily and hourly struggles she has and I want someone to do something. Surely there must be someway that can guarantee to help her, some tablet she could take.

There isnt. All that we have is a slow death, marked by visits to see a doctor and the mental anguish of going into hospital, constantly in pain and unable to do most of things that she enjoyed doing 8 years ago.

How am I coping right now? My new years resolution was to try and prioritise my mental well being a little more than previously ( and this has now been knocked off course with the gas problem and the strain of the scans. I feel at times that I have a limited amount of mental capacity to deal with things, and with caring for my wife, looking after our children, work and just the general household chores, I take a back seat. A good friend told me at the weekend that I need to do more, that I am suffering, and when I am suffering I cannot help my wife.

So I will dig deep and find the resolve to cope. Now the heating is back on I can start with the exercise again, and will use my time wisely. My wife and I are spending more time together watching box sets, something we used to do, and are enjoying being back together (Vigil series 2 was very good). We started to drift apart (, but are starting to find each other again, which is easier when I am less stressed with everything.

I also have to change my mindset. Try to turn the negatives into positives. My wife has been given a few more months at minimum, and every month we have, we must be a month closer to a cure.

Even when my wife doesnt have active treatment, our lives are still chaotic and hard to navigate. We never know what may be around the corner, and that is what plays tricks with our resiliance and mental health. We have until late April now to make the most of the extra few months we have been given, until we hopefully find out we have been given some more months. Not just living waiting for the scans now, but we will start enjoying the extra time the doctors have bought us, and make the most of that gift.

Keeping Track

Current weight – 110.7KG (possibly higher as I havent been on the bike with not having a hot shower)

Books finished – none yet

New music listened to:

  • Ash – Race The Night
  • Captain Beefheart – Safe As Milk
  • The Cult – Under the Midnight Sun
  • Shed Seven – A Matter of Time (they got to number one – 30 years after Britpop! And it is a bloody good album, full of sing along bangers with big choruses)
  • Bill Ryder Jones – Iechyd Da (embarrassingly even with a Welsh wife I had to look up the spelling here. Nice and gentle, great sounding)


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