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High calcium levels, and last minute flights to the Channel Islands

Here at My Wife Has Cancer, we’ve had a couple of weeks off after school and university term end. The kids both had a great end to the academic year, making us so proud of them both. A first year of Uni has led to a first equivalent set of exams results for my eldest, and my youngest ended the year with an achievement recognition. They both deserve their summer breaks.

My work gave me the news that I would be leaving sometime during the 2Q of next year. As previously mentioned on My Wife Has Cancer (https://mywifehascancer.blog/archives/929) this was announced back in March. The process took bloody ages, and to be honest the motivation in the office has fallen through the floor. What did they expect – telling everyone that the office was closing and there would not be any jobs available elsewhere. Strangely enough most people dont feel a great deal of loyalty at that point.

We needed time out then. But of course the universe doesnt like us to have nice things, and so my wife picked up a virus or infection of some description (bacterial apparently, needing anti-biotics to shift). She had a slight cold while on holiday, but since we got home had been feeling exceptionally fatigued, and unable to eat.

This is a concern, as she looks like a little bird as it is. She reminds me off my grandmother in the years before she passed, tiny and weightless, with limbs that show the bones through her skin. There is very little meat on the bones at all, with her clothes hanging off her.

Then, the universe decided to play its next card. Two weeks ago, our doctor calls to say that her calcium levels are very high, like off the chart high. This is the reason for the fatigue and lack of appetite. It is also a really serious thing, and I understand a signifier of the cancer having spread further.

We were told to go to the A&E, where she would be put on a drip to wash out the calcium, and reduce the levels. One night in A&E turned into two nights in the local hospital, before turning into a transfer to the Royal Marsden in Sutton, the cancer specialist hospital. Which was where she stayed for nearly a week, getting slowly better, and slowly going mad with boredom.

What was extra hard was that we had arranged to visit some family in the Channel Islands, so while she was sleeping I spent my time on the airline website or on the phone attempting to change her flights. The children flew on their own (the flight is only 40 minutes in a twin prop 12 seater plan), while I sat at her bedside, swapping with my mother in law to go into work. Then after a few days, we decided I should keep my flight, and join the children.

The issue we had was the race against time to clear her for travel. There were limited flight availability, at least direct due to the holiday season. We missed one flight she could take, then another, and were left with nothing in sight.

But somehow on the Monday morning last week, a direct flight appeared for the Tuesday. She had been allowed home for a few hours on the Sunday, so things were going in the right direction, but could she be discharged in time? The answer was yes, and so she arrived at Southampton on the Tuesday for an early flight, then to be told there was a delay, and the flight would be 4 hours late.

This was not a great message when you have a bad back, and are uncomfortable sitting down. But she managed it, and got there, and had a great few days, weak, fragile, not eating enough, but determined to be there. I dont know how many more times she will be strong enough to make that flight, so it was important.

So what of the high calcium? There is a very good article on the following link to Cancer Research https://www.cancerresearchuk.org/about-cancer/coping/physically/blood-calcium/high-calcium-people-cancer (maybe donate while you are there?). Hypercalcaemia as it is known is more likely to happen in advance cancer, less so at early stages.

All of the symptoms that my wife was showing are the ones to look out for, and to be honest are really quite hard to distinguish from an ill cancer patient. The patient may feel unwell, be more tired than usual, and be off their food, amongst other potential signs. Tough right? Sounds like any virus someone may pick up, especially when their immune system is compromised anyway.

And it cant be prevented. Nothing you can eat will change this, when caused by advanced cancer. Treatment, in the form of the fluids to wash it out of your system, or injections of certain types of drugs will help lower the calcium levels. And scarily if you miss these common symptoms, the seriousness will ramp up, potentially leading to fits, problems breathing, or unconsciousness. We are now on red alert for any change, and will be heading straight to the doctors with any sign of these symptoms. More stress and anxiety to add to the list we have accumulated over the years.

So how am I feeling? It was yet again some of the most stressful days of my life. Yet again, I got to witness the early days before the medicine takes hold and while my wife is often sleeping. I get to hear the early worried diagnosis from A&E doctors, before her specialist gets involved and puts their minds at ease (my wife’s blood results shouldn’t exist in a healthy person, but somehow she can cope, meaning new doctors fear the worst any second). I then am usually working or looking after the children when her meds kick in and she is awake, while my mother in law will sit with her. My role will pass unnoticed and forgotten.

The trauma of all of this take a long time to fade. I am writing this on My Wife Has Cancer, 2 weeks post admittance and do not feel back to the level I was the day before then. I don’t think this is PTSD, but it is some form of mental problem for me. Years of constant stress and strain don’t fade easily. The short term incidents like this knock us out of our regular routine, throwing away my method of trying to cope with the long term stress impact. The healthy eating and exercise take a back seat to driving to and from hospitals, and eating sandwiches from the coffee shop on the ground floor. Then there are the days when tea will be picked up from the supermarket and eaten at 11 pm.

We are all focused on my wifes physical disease and I feel people don’t always acknowledge the mental impact on the rest of us. I am seen as just grumpy. And how can I argue, after all I am not the one dying. However, as the following article from Macmillan, looking after the carer is important (https://www.macmillan.org.uk/cancer-information-and-support/supporting-someone/emotional-support-for-carers/looking-after-yourself-as-a-carer#:~:text=You%20need%20to%20look%20after,Eat%20well). After all, how can you help someone else, if you are not well yourself. But in the days when everything feels it is going wrong, as I said above, healthy eating, exercise and sleep all go by the wayside. Those previous small gains are lost in the haze and chaos.

I am amazed at how quickly my wife seems to get over these events. She can be hospitalised, but within a couple of days following her release, whilst still tired and recovering, she will appear to have processed everything, boxed it away and be attacking the day the best she can. There is definately a determination in the minds of people who have faced death, and come out the other side. Something we can all learn, but it is hard having watched the doctors and nurses do their work in those early days to recover as quickly.

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Its time to get physical

So, summertime, and we have had a few family trips out. I mentioned previously how hard this can be with a disable wife (https://mywifehascancer.blog/archives/753), but the other thing worrying me now is my health.

I’m not getting any younger, and the last seven years have been quite a stress on our family and me. The extra grey and then receding hair is testament to that fact (if anyone has any tips to stop thinning hair, please let me know, I’m not sure how long I have left before the razor hits). Some small niggling injuries have also hit me, a recurring achilles problem has required physio for a few months (thankyou NHS), while recently a frozen shoulder has decided to raise its ugly head.

These have meant that my usual fitness regime of running was not possible. I didnt go enough anyway, and the weight was slowly creeping up, but now it is noticeably worse. Day trips out mean lots of walking for me, as I try to cover the role of two parents. A trip to the swimming pool will have me in the water all the time, despite not enjoying it as my son loves the water. My wife used to love swimming with them both, but is very self conscious of her body, especially her bloated stomach and skinny arms and legs. She gets some funny looks from people.

We used the school tennis courts the other day, and despite only playing for an hour, and really just knocking a ball around, I was huffing and puffing after 30 mins.

This has got me worried a little for our future. It is inevitable that we will be a single parent family soon, but the last thing I want is for me to add to the stress by having serious health problems from being over weight.

I like my alcohol too much to give it up (possibly it is a bit of a crutch these days as well), and I like to eat well, so I have to increase the exercise somehow. As I said above running is out for the time being, so I am thinking of getting a cheap exercise bike to have in the garage. That way I can use it rain and shine, and listen to music or watch TV at the same time. Who knows, my wife may even become well enough to try it.

My biggest fear has always been how to tell my children their mother has gone, and I now realise that I want to make sure that I am in the best shape to be with them for as long as they need me. The weight must go, and the health issue have to be solved. Watch this space.

The song playing in my head was the following. Not cool by any stretch (no pun intended), but it works. My father in law calls her Olivia Neutron Bomb. Hes funny that way…

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Trying to stop my wife catching Covid

Thursday I made the decision not to go into the office, and work from home. I was coughing and not sounding great, so rather than pass on a cold to everyone else, I stayed home. My wife and daughter were away overnight at a school conference thing, so I just had to take my son to school.

He was fine, just the usual grumbling about having to get up and get ready, so the morning was fine. However as the day wore on, I felt more and more groggy, my headache was really bad, and I decided to take one of the Covid tests we have kicking around. A faint positive, but still positive. Bugger.

I dont care what your thought are on Covid, and what conspiracy you sign up to. It might be man-made, it might not, I dont know and dont really care, but what I do know is that the illness I have had has been like the worst flu ever. It is the second time I have caught it (not sure how many more until I get a free one…), but was worse this time round. I guess it is longer since my last booster (and again, I dont care about your thoughts on vaccines. Suffice to say I agree with vaccination, you can think differently, its a free world).

I often worry about the mental aspect of the coronavirus pandemic. We spent two long years telling my children that the disease out there would kill their mother, as she was vulnerable. Her operation a few years ago removed her spleen and so on, so she would be highly at risk. I have also seen her struggling for breath in a hospital, as her lungs give up, so I know that feeling of helplessness as someone is dying. So when my son first caught Covid in our house, he was devastated. Full blown tears and crying. The demon of Covid had been built up so much that he thought he had brought the plague to our house.

Thankfully he had it mildly, as did I, and my wife also caught it, and was laid up for a few days, but was ultimately OK. Whilst we were lucky, and we are all still here, we do still have the worry of bringing the disease in. So I am currently sleeping alone, and not leaving the bedroom, whilst everyone is in the house. I wear a mask in case I do enter the same room as my wife and children. Every little thing counts, and if doing this can stop my wife from catching Covid then it will be a job well done.

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Turn off your mind and relax

So my wife is away, and theoretically this should be a great time for me to try and recover a little. The mental impact of caring for someone and worrying about them all the time is very wearing. The constant stress levels in our household are extremely high.

Stress is well known to cause adverse effects over time. The following article gives some interesting facts – https://www.mentalhealth.org.uk/explore-mental-health/a-z-topics/stress. Stress can have benefits, it can help us to react to things, push through pain or fear, and sometimes we work much better under a little stress.

However prolonged exposure to stressful situations is not helpful. We can start to become overwhelmed and unable to cope, leaving us anxious, afraid and angry. We can withdraw from talking to people, be indecisive and have problems sleeping amongst other things. There can also be physical impacts, from headaches, nausea, and other aches and pains.

The link gives way to help yourself, and I think being aware of these is vital. Excercise, eating healthily, mindfulness, and having supportive friendships can all help. It can be really hard to do this, and perseverance at them helps. Afterall the other option is to keep suffering.

My issue now though is this implementation step. I find it really hard to switch off, especially as my concentration levels have suffered. Which is frustrating this week when I have the opportunity to switch off. It has taken a few days to decompress, like a diver coming up for air.

This goes to show how ingrained and prolonged the stress is for our lives, and how even now it cant be fully turned off. I spoke of the worry about the future yesterday, and this always plays on my mind. I do feel though that the only way our lives will improve is when this is all over.

For now some music on the way home in the car, watching football on the TV, and turning off the phone seem to be the best ways to relax. Our cat is also desperate for attention, so that is a nice welcome home.

Valentines Day hasnt helped, hearing the plans people in work have to go out with their loved ones. Catching the bus to town to a meal, cocktails before and drinks after. Make the most of your loved ones people, you never know when it may change.

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Mindfulness

A coping mechanism I am looking into is Mindfulness. This is paying more attention to the present moment to improve your mental health. Stopping rushing through life and look at your own thoughts and feelings.

Mindfulness – NHS (www.nhs.uk)

With everything going on in my life, I dont stop to smell the roses enough. I want change now, I feel I need things to improve now, which cant always happen.

For me mindfulness would involve a variety of processes:

1. Listening to some music – and properly listening to an album, not as background noise. I have music on all the time, but don’t listen to it. I have to consciously pay attention.

2. Experiencing nature – I find that being in the open air does replenish my positive energy, and will make more time to do this regularly

3. Trying new things. Sitting somewhere different can change your perspective on things. I do get stuck in my ways.

4. Develop an awareness of thoughts and feelings. This would mean me knowing when anxiety is going to strike, and pre-empting it creeping up on me.

5. My wife does do meditation. This has never been something for me in the past, but I will look at trying this.

I have bought the following little book, and will be trying the ideas, hoping to reduce stress in my life.

https://amzn.to/3VoILt9

You can also buy colouring books and so on. I know this from work where colouring and jigsaw puzzles have been used to destress before now.

I am usually not the type to look into these sort of things, however the current state I am in means I am really struggling, and need to do something.

I will let you know progress

Cancer and the slow decline

Today I want to talk a little about what I find one of the hardest issues we face with my wife. She is currently in a cycle of not having treatment, which is great, as she can work on getting over her last bout of radiotherapy. We have had a summer break, been away, and now the children are back at school. The next scan is in a few weeks.

We do notice that she gets very tired easily though. And this will lead to her falling asleep early, into a dead sleep on the sofa at 8 PM if we have been out somewhere. The knock on to our family life, aside from her snoring over She Hulk, is that she will then awaken at strange times, and start to engage in cleaning or tidying. She always had an almost OCD mindset, but the cancer has made this much worse. Coupled with her lack of sight on her left hand side, we have to ensure things are done as she wants them to be. Which for the sight aspect is fine, but not so easy when it is because she has a whim and wants things done in a particular way. I feel we live on egg shells worried that we have put something away in a cupboard in the wrong place, and that the inevitable fury will reign down. As you can imagine it does not make our home life relaxing at all.

The last lot of scans stilled showed the disease now on the liver, and apparently some in her pelvis. I dont know now how much further this has spread, or how fast it spreads. She has some pain in the stomach area, which is where this journey started all those years ago. I feel that all we do these days is ‘kick the can down the road’ waiting for when we get something that will warrant a round of treatment of some sort.

And this is where the slow decline comes in. As an analogy, you have two options when taking off a plaster – fast or slow. One brings a short, sharp pain, the other a duller slower pain. Neither is easy, but sometimes it is best to get it over quickly. And as you can tell, that is what is happening here. My wifes decline is the slow pull, a gradual decline, and it leaves us with years of pain, never getting ourselves quite back on track. Things will never be the same as they were before her diagnosis, however I do feel we are being held back, the rest of us not able to move on. This sounds callous, and I realise that, but the other point is that my wife is not the same woman she was, she isnt able to do the same things she was before. At some point her quality of life will decline significantly enough that she wont be able to be on her own, and a final indignity will hit.

This slow decline has destroyed my marriage. We dont do any of the things that a normal couple do. No date nights, no physical contact, nothing that a loving couple can do together. Our relationship is as a patient and carer. I feel my life has been put on hold, trapped in a marriage now that is never going to improve. I cant move on with my life.

I dont want to leave my wife behind, I want to have the life we had, but understand that is impossible. But the life of a carer is a hard one – I am the one who takes the blame when something isnt right in the house, I get the brunt when she has been out with her friends and is then tired in the evening. I have to tidy away and look after the children and house after trying to concentrate at work all day. And I do all this because I have a duty. But it would be good to have some time off.

The thing I hate about writing that, is that my wife cant have a day off. And that is where the cruelness of cancer comes in. It is relentless, it doesnt give any respite, and unless you are one of the lucky ones, it will not end in a happy way. My family is trapped at the whim of this diease, waiting for the plaster to finally come off, knowing that only then can we rub the pain better, and move on. Sometimes it feels that we are all just hanging around. It would have been tough, but at least of we had lost her before, we would have been able to deal with the grief, instead of effectively grieving for a years on end.

To end on a different note, I have mentioned previously my love of music, and last night we watched the Taylor Hawkins tribute gig on MTV. I was gutted not to be able to go – I had tickets to see the Foo Fighters earlier this year, but that was cancelled when he died, and my brother in law was at Wembley. However, money worries stopped that for me.

I thought the gig was great – a brilliant tribute to an obviously well loved friend. Some tears, some laughs, and lots of amazing music. Violet Grohl and Shane Hawkins were there to carry on from their parents, and I hope my children honour their mother as well as they honoured their father and friend.

Involuntary Celibate

The dictionary definition of an Incel is a member of an online community of young men who consider themselves unable to attract women sexually, typically associated with views that are hostile towards women and men who are sexually active. The name is short for Involuntary Celibate, and this has driven these men (for want of a better word) to extreme thoughts, feelings and even actions.

They see themselves as unable to get a partner, either romantically or sexually, and as such foster hatred towards the world, and women in particular. The ideaology has grown in the darker areas of the web, and includes threats of violence and rape towards women, who are blamed for the position the incel feels they are in. Extreme misogyny, hatred, even racism, can be brought out in the groups, and this has at times exploded into the real world. Mass shootings have occurred in the States since at least the early thousands, and this has been seen in the UK (one shooting last year was allegedly by an Incel).

This is horrifying. How can young men become so disillusioned with hate, so angry at the world that they lash out in such extreme circumstances. We know that an active sex life does have benefits. Amongst the cardiovascular work out, and increase in immunity, the act can relieve stress, boost self esteem, and deliver a serotonin kick. It doesnt take much to see the link between the lack of these, and the reactions we see above. Additionally being in a healthy relationship also brings about feelings of happiness and contentment. Frustration at not getting this grows, particularly when the internet and TV can depict sex and women as easy to get.

This is not to excuse what happens on line or in real life. The feelings generated have to be controlled, and being alone in an on line community is a rabbit hole that can be hard to get out of. The peer pressure pushes more extreme actions, and what starts as a joke can quickly head into much darker areas. We see this when groups of men and women are out on a stag or hen do – a small joke with someone can be egged onto ever increasing levels of bullying, often in the name of banter, without realising that the other party is not happy, is not comfortable, and that we have crossed a line.

So why do I write about this? I have realised that in a very real sense, I am an involuntary celibate. With my wifes illness, she is both concerned about sex and potentially passing on her disease, but she is also in too much pain to partake of the act. So through no fault of my own, I am in that situation. And I have more of a reason to be lashing out at the world than these pathetic individuals. I feel stressed and angry and disappointed at what has occurred, I feel the need for some release, but cant get it. I see how young men who see these depictions of sex and women feel rejected by the world, but I cant for the life of me see how they can push into the extreme reactions we see.

We all have a choice to make about our lives, and rather than lashing out and blaming the wider world, we need to take responsibility for our actions, and create our own path out of whatever we are in. And no, that doesnt mean taking what we want, it means working within societies norms, engaging with other people in our communities and becoming the better person so that we can have the relationships and life we want the correct way.