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Kiwanuka

My wife has been going well after the first lot of the trial – none of the tests have shown anything, and apart from some weight loss, and being tired she is doing OK. This week she had the round of CT scans and MRI scans, and we will know next week what they show (if anything).

So that mean on Tuesday we sat down to watch the Brit awards. As anyone who knows me will testify, I love my music, but the Brits tests me recently. I’m getting older I know, but I like music to be challenging, to kick out the jams (mother f**kas!), and nothing really appealed to me on the show. Dave I thought was excellent, railing against the world, and Stormzy puts on a good show, but it seemed to be a night of ballads (even Lewis Capaldi and Harry Styles sounded like they were singing the same tune at times), while Johnny Marr was too quiet with Billy Eilish.

But I do like one act who was nominated for Best Album – Michael Kiwanuka. His album of last year is truly amazing – it sounds classic but fresh at the same time, with some brilliant guitar playing and warm sining. It is an album to luxuriate in and play in one go – small tracks link the major tunes, and while the singles (Hero and You Aint The Problem) shine, they sound even better in the context of the whole. To think he scrapped much of the work going into it, and had a crisis of confidence, makes the feat even better. I highly recommend listening (or even better support artists and click on the link to buy it –

I still try to buy most music I listen to – I think that a CD or record has a better sound (even when converted to MP4) over streaming, especially when driving.

Any, please listen at least to Hero – it has helped me recently through everything that is going on in our lives.

I will start putting up more recommendations of albums I like here, interspersed with updates of my wife, so please let me know what you think.

What’s the Story

Nothing bad has happened thankfully. My wife has had a stinking cold (really bad), which is a bugger when you can’t take anything to hold the symptoms at bay. I blame the kids.

The blood tests have come back OK so far, with no adverse reactions. Platelets were slightly down, but for those aware of most treatments, that can happen. The major issue has been really bad tiredness – she is knackered in the evenings, and struggling to get up in the morning. Add in some bad dreams (which sound almost hallucinogenic) and it is a bad mix.

I also saw this week was World Cancer Day – the theme was I am and I will, about making a commitment to ending cancer – personally the posters I saw in my office were confusing, but it did prompt me to investigate further, which is the main thing. Getting awareness up is paramount. The strange thing is that in my office not everyone know of my home life, and don’t know my wife is ill. I am fairly private (says he on the Internet), but I also don’t want it to define me.

That’s all for now – and the Whats the story headline leads me to Morning Glory – another blog post for another day.

Definitely Maybe

Some close friends of ours have found out that the wife has to go back for more treatment, after nearly two years in remission. Our hearts g out to them, and I know exactly what the husband is feeling.

I briefly spoke to him yesterday, and his comment that stuck with me was that you just want to know something definite. The path forward is not clear, and unlike most illnesses, where you go to your doctor and they give you some pills, or an operation, or cream, and they can almost guarantee that it will clear up, with cancer you don’t have that. You can think you are clear, only for something aggressive to come rushing back at you.

I firmly believe that is a big factor in the final stages of some people – they effectively get worn down by the constant worry, and their bodies can’t cope. Stress and constant worry can be seriously debilitating, even with the harshness of the disease itself.

An unspeakable truth

While the drug trial has been starting, I was thinking about one thing in our lives that no one dare talk about. We have had 4 years of pressure and strain, and my natural thought at low points is to wish that this was all over. However, that means only one realistic outcome in our situation (unless by a miracle medicine has a major breakthrough). So the one thing I wish for, would mean the one thing I don’t want to happen – the loss of my wife.

And this is something we don’t talk about. We never talk about the unthinkable trade off. Often times, when someone is ill, we hope it will be a for only a short period, but there are plenty of people out there living with a partner with a long term illness who know that partner is only going to progress in one direction. Sometimes there will not be a happy ending, however much we hope and wish and pray.

It is horrible. We are sick of trips to hospitals, of not knowing if a slight ache or cough is the onset of further pain, and want to have a normal life back, without the worry and limitations that cancer puts on you. We want to move past this great big road block in our lives, and get onto the next stage of our journey together. But I know (we know?) that that next stage is not together, and that the massive road block to get past will keep changing and growing and evolving and constantly throwing up something new.

Four years ago, our hopes and dreams were destroyed during one conversation with a doctor, never to be returned. And whenever we try to regain some semblance of control, and to reassert those hopes, cancer seems to find a way to come back at you, like the evil baddie in a horror film, refusing to die, despite whatever you throw at it.

So, the unspeakable truth is that. We wish for this to be all over, but don’t want the losses that means. And plainly, that just sucks. That knowledge destroys your mind, pervades into every living thought, and holds you back from accomplishing what you should.

So far, so good

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.

Trying times

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.

Kicking the can down the road?

As planned we met with the specialist. The meeting is always delayed, so we sit in the waiting room, desperately trying not to make eye contact with other patients, while making idle small talk.

I think it was good news, but it is hard to know what is good, when the parameters are so off from normal. Anyone else with the measures, and amount of tumours my wife has would be straight in hospital. But in her context, some growth, but no spreading to other areas is seen as good. Bad for us is spread of disease elsewhere.

How can that be? Good should be “Great news, it’s all gone”, not “Well, at least you don’t need chemo right away”. It’s messed up.

It also makes the week stressful. Family say it’s good, but inside we are saying it isn’t. We just have to wait another couple of months.

Sometimes not having a definitive move is really tough. Having an action to take is easier, definitely on your mental state. Again, I don’t know how to react, what to do, what to say. I don’t know what is going on in my wife’s mind. And then just when we have got to grips with the latest, another round of scans will come along.

Running up that hill

The check ups and oncologist meetings come around exceptionally quickly – they are now every two months, but feels quicker. My wife has CT scans, MRI scans, blood tests, and a day in the hospital, and then a week later we will head in to see her specialist.

That appointment is tomorrow, and that means that the last few days have been stressful. We had family to stay over the weekend as our daughter was in a school play, and that always sets my wife on edge. She struggles now to deal with lots of things going on at once, following the stroke last year, and needs time for her own space, which doesn’t always happen with elderly relatives in the house.

I have learnt to be helpful, but give her the space she needs. I cant imagine what is going on in her head – the slightest ache and pain causes anxiety. This week it has been a stomach ache – and when the cancer is in the peritoneal wall, that makes you think the worst. So far there has been no movement to the bowel, but stomach aches can signify that. It may be innocuous, but we thought that with the chest pains last year, and that led to pneumonia, a coma, and the stroke.

I have to find ways to cope, and one is running. I am not very good, and dont get out very often, but find it does clear my head. Amd luckily the study linked below came as good news. Even once a week can help.

https://www.theguardian.com/lifeandstyle/2019/nov/04/any-amount-of-running-reduces-risk-of-early-death-study-finds

It helps, me and may help others. Looking after yourself is almost as important as looking after the patient (I learnt that in therapy!), and this is one way I use.

Anyway, on to tomorrow, and hopefully good news.

#RedCups

So apparently Starbucks are releasing red cups today – a lead up to Christmas. I don’t agree with the advertising of this consumerism – I love coffee, but don’t need all the crap around it. What I don’t get is why releasing different cups is a thing – in the modern age of trying to be eco friendly surely we need less plastic cups being produced. And I also don’t understand people who get excited by this. I would love to have so little going on in my life that this was a big deal.

And how do I tie this into the name of my blog? My wife is desperate to go back to America – we used to holiday in Florida a lot (yeah, yeah), and one thing that will take her back there is a soy decaf vanilla latte – the small things. But she doesn’t care what colour the cup is!

Venice

Things have been going reasonably well recently – the last scans didn’t show too much deterioration, and as my wife is not having any active treatment, we decided to take a trip to Venice at half term.

The biggest hurdle is always travel insurance – anyone who tries to get this while under a cancer diagnosis will understand how tough it is. And how expensive. In the UK, a regular trip would cost say £30 – if you are ill, or have been ill, or have a diagnosis, you can times that by at least 10. And forget going any further than Italy, Spain or the Canary Islands – that is out of the question. It is a big source of stress in itself – you need a change of scenery, but cant afford to pay, especially as one of you is not working. Effectively you get penalised twice – once for having the illness, and then once if you try to do anything. It really isn’t fair.

We have found a reasonable supplier now – Boots have been good for us recently – however we will need to see what it is like when she is back having active treatment.

So we had insurance, we had tickets, and now hoped her to be OK. Thankfully she was – and so we packed our bags and woke the kids up ridiculously early to get our flight!

The next main problem with travelling with my wife is that she now gets very tired easily. We have to be very conscious of this – we have to factor in breaks during the day, we have to ensure she gets a good nights sleep and gets to bed on time. All things that you will be aware of from having kids! But this is serious – she can get confused easily when tired, but wants to be doing the same things she was before all this started – not easy after all her body has been through.

We also need to ensure she can keep warm – she finds it hard to regulate her temperature, and so if we are out late, or in the rain, we have to be extremely careful. And a cold weekend in Venice was one such place to keep an eye on.

However, the benefits of breaks away outweigh the tough sides. We needed to get away from home – there are too many reminders of everything there. And despite struggling with money, we will make this work to at least have a short time away. The pizza and pasta were good, as was the red wine and ice cream!