depression - mywifehascancer.blog

Escaping with Sherlock and facing down challenges

A week of getting back into things. In the office, which has been much less stressful than at the end of last year. I ended the year covering a second job in a department that had been facing serious delays and issues, and for the six months I was involved, we were fighting a constant battle with auditors.

So into December I was not in a good place mentally, and really needed the break. I wasnt able to interact with anything at home, and wasnt really a good person to be around. I cant recall a time when I have been so stressed through work in a long time.

Even the times when my wife was in hospital I always coped better then last month. I was very relieved when Christmas came round.

My wife has been struggling a little with her bruised back following her fall at New Year. The chiropractor put it back in place, but it is still painful, with a cut that hurts as well. She is really finding it hard, and has been prone most of the week. This means she is majorly pissed off as well.

We did manage to get out to a Sherlock Holmes experience in Shepherds Bush in London (https://www.thegameisnow.com/?gclid=Cj0KCQiAtOmsBhCnARIsAGPa5ybk_Es8OyMw4PeWVMob5HVSZCUzeZTzgyNw5hxbnSpI5-Flmod-gEUaAooGEALw_wcB) . I can really recommend this, it was great fun, with the actors from the TV show on film, and some great recreations of sets from the show. As my daughter is Sherlock obsessed, this had been a Christmas present that went down very well. It ended with an hour long escape room, which we managed with only a minute and a half to spare. Very thrilling, and brain taxing for a Sunday morning!

The other focus for me has been concentrating on my resolutions (https://mywifehascancer.blog/archives/829). It is tough getting up to ride my spin bike when it is dark and wet, but I have been doing it. I think there has been some weight loss, but I will need to keep at it to really tell.

Listening to some new music has been much easier, and I have loved the Ash and Cult albums I have tried this week. Both anthemic and rocky, and right up my alley. I have tried again with Captain Beefheart, and prefer Safe As Milk to Trout Mask Replica. Though it might be time to give that album my annual listen.

The major thing stopping me reaching these goals though is the thought that ultimately none of my resolutions are going to change my situation. They are just ways to help me cope, and keep my brain occupied so it doesnt think about the situation with my wife. They cant and havent stopped the sadness that can creep into my daily commute at any moment, the jealousy of the healthy and happy looking couples I see around, when at home my wife is lying with an injured back, her legs getting skinnier and skinnier, veins showing through, with her clothes hanging off her. Getting fit and listening to new music wont change that.

She takes longer and longer to get over this type of injury, and to be honest get over any type of illness full stop. Her body is so battered, so bruised and broken that there is very little reserve available to fight things. I fear that any potential serious illness will knock her out very quickly.

There are scans this week, and results the week after, so we will see our new fate after that. I would wish for a cure, but that is a long way off I’m sure.

I always thought that my marriage with my wife was the one, our ultimate romance. I had never been great with women when I was younger, and so had been shocked and so happy when she said yes to marrying me. I never thought anyone, let alone anyone as amazing as her would say yes to me. Now I dont know what to do to cope with the thought of losing her, and losing my rock and stability. Both of us are scared silly at what we have and are facing, and there is no manual to help chart the path through. And for one of us it is a one way path only. Even typing that sets me to tears.

And so I keep on with my resolutions for 2024, trying to improve myself on the outside, all the while knowing that inside I am broken, and unfixable, but trying to paint on a happy smile and keep facing the challenges that still come. I said to someone last year that I feel I have a superpower that most people dont have, and really I mean that my wife has a superpower most people dont have, I just have some by proximity.

Her superpower is the ability to get out of bed every day and face down these horrendous, life changing and life destroying challenges, and still keep doing the normal things like Christmas and escape rooms and just cooking tea. This is a superpower that few people ever have to learn, and thank god for that. For unfortunately,this is one escape room we will not manage to beat.

Keeping Track

Current weight – 110.7KG

Books finished – none yet

New music listened to:

Ash – Race The Night
Captain Beefheart – Safe As Milk
The Cult – Under the Midnight Sun

Thanks

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Do other people keep running fast to stand still?

Yes, I know another U2 reference! I did see them play The Joshua Tree a few years ago with my wife in London, and an excellent gig it was. Bullet the blue sky, and Running to stand still particular highlights. Would love to see them again. One of my wifes favourites as well.

The title was something I touched on in my last post, and it got me thinking, especially when I saw the following picture being shared on line.

In our lives here, we are spending alot of energy but I feel we are not getting anywhere. We are trying to survive, trying to get through each day. There isnt any progress into anything new, and no fresh ground is being broken.

I see this especially when seeing what other people are up to, both friends and otherwise. A new job, work done on the house, exciting trips booked. I know that comparison is the thief of joy, but it is very hard not to compare to other people.

In some ways, I miss the pandemic lockdown of a few years ago. We were a vulnerable household, and so were scared of the possibility of Covid. But we kept safe, and managed to avoid the disease. And with us and everyone being trapped in our houses, everyone was experiencing life as we were. No one was going anywhere, no trips being made, and so the world felt fair again.

I guess the lockdown was a leveller, and meant friends and family experienced to a small extent the same life as my wife has, trapped and not able to go anywhere. The kicker came when lockdown was over, because the vulnerable people were still kept inside, and even when restrictions were lifted, my wife was nervous about going out. So again, we saw the unfairness of life as it felt like everyone else was out enjoying their freedom.

The effort of trying to keep us in place is extremely tiring. I can look back five, six years and I feel fatigued, so can only guess from watching her how my wife feels. When you have to fight just to preserve what you have (and even failing at that at times), it does wear you out.

We try to maintain a life for the children, which entails making sure they are in the right place. And so the added pressure of their lives, especially when only I can drive, takes hold. Shielding them from things is also tiring.

Sometimes the possibility of a break would be great, however when stuck in the moment it can be very hard to see a way through to that break. We focus on the now, and trying to survive, and do not have the energy left to start living.

Thanks

Today is the funeral of my sisters boyfriend who committed suicide, and so I would urge you to talk to someone if you have feelings like that. The impact of that act has been devastating, and happens far too often.

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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.

Thanks

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How to combat non-inclusive words from friends?

One touchy subject that has been on my mind alot has been the unintended impact of conversations with friends. My wife is a social animal, and so needs to meet with people, or she will get bored. She had a high flying career, and an active social life in the days BC (Before Cancer), as well as loving to travel and see and experience new things.

Following her diagnosis, and subsequent treatments, both surgical and intraveneous, she now has no career, has lost her independence, and can no longer travel and experience new things in the way she once could. Not only can we not pay for trips following the loss of income, and need to adapt things at home for her disability, but she also does not have the energy to do as much.

This alone is enough to drive her mental health down. Having had everything you have spent your life trying to achieve taken away through no fault of your own is devastating. And then to not have the strength to fight against it at times, and the dis-spiriting constant pain and worry is an added concern.

On top of that is the sometimes unintended behaviour of friends and family. This isnt meant in a nasty way, and it is nice to hear what people are getting up to. But when the conversation can pivot from an update in her health that week, to what everyone else is planning to do that year, I find it a little cruel. Again, I stress this is not done on purpose. No one is going out of their way to boast about what they are doing, but I will then have to try and revive her flagging spirits in the middle of the night. She will recount how X is going on holiday to this over seas direction, and how Y is planning to build an extension, and how Z is buying a new car. And she knows full well that these are all things out of our reach, but has to nod along and smile during the conversation.

I sometimes wish we could normalise just straight out changing the subject of a conversation. I guess we are too polite, too British to do so. Maybe I should print out cards to hand out to people when she goes out to meet them, giving a list of topics that are off limits. ‘No holidays, no talk of shopping for new clothes’ and so on.

It is a mild form of discrimination, subconsciously of course. Non-inclusive behaviour, that negates to ensure that everyone in a group can participate. We see this in a work environment, whereby in my office we are encouraged to take into account peoples different circumstances, and make sure meetings are set for times when everyone can attend, being aware of those who work part time, or need to work from home. Making sure we solicit the views of everyone in a meeting, not just those in the room, but also those on the end of a phone line. But do we take this into account in our personal lives?

I have certainly been more aware of misuse of disabled parking spots since my wife has had a badge and required us to use them. Even now though, I feel guilty that she isnt disabled enough, not visibly disabled. But we see so many people parking up in those spaces without a care in the world or a badge to give them permission.

We see restaurants without a quiet area, for those hard of hearing. We see struggles getting access to buildings for those who cant walk easily. We see pavements blocked, and vehicles blocking entrances. Life when disabled is hard enough, without then adding in the mental anguish through inadvertent behaviours from our friends.

So, how to combat these behaviours? A polite word would work better than my card idea above! If I am there I change the conversation in a subtle way, trying not to hurt peoples feelings. And therein lies the rub. I spend time ensuring I do not hurt someone elses feelings, while my wife is being pushed into greater anguish.

This behaviour does have a long lasting impact on our lives. My wife gets upset on what she is missing out on. I get upset and angry that I cant provide that life for her. So our collective family life becomes a little worse off, and a little more frustrated. This is then a viscious circle.

So please, if you have a friend who is suffering a life impacting illness or injury, think about what you say around them. Think about what they might be going through, and tailor your conversation appropriately.

Thanks

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Why do I feel a complete failure as a carer?

There are many conflicting emotions I find when looking after a sick spouse. Worry, confusion, despair, depression all figure high on my weekly concerns.

However today I want to mention the feeling of having failed. I may have an old fashioned view, but as a husband and father I feel I should protect my family. Actually, I feel we should protect each other, and as a family look out for each other. We should help our siblings when they are struggling. We should lend an ear to their worries.

But I feel I have failed at this. I feel I cannot help my wife get better. I feel I cant protect my children from their worries about their mother. And so I feel I have failed.

Is this true though? One thing we have to accept is that we cannot ‘fix’ everything. And that is especially true when faced with a terminal illness, and long term disability. The way we help in this situation is not by trying to solve the illness, rather by helping our spouse or partner.

I do not have the ability to cure cancer, however I do have the ability to get the right drink and food for when my wife has a bad stomach after chemo. I can clean the house, and take care of the chores so that when she gets home from a day at the hospital the rooms are clean and tidy, and she can relax without sitting looking at a pile of dust on the table.

I also do not have the ability to ensure my children will always have their mother growing up. Unfortunately I believe more and more these days that the time is getting closer when she will leave us. But I can ensure the children are at school on time, are collected from clubs and lessons on time, and also make sure they have a home cooked meal in the evening. I can help with homework, and teach them to drive, and play board games or football with them.

We view ‘winning’ in our lives as the big events. The awards and the promotion in work. Scoring a goal for our football team to win a match. Singing at a school concert in front of hundreds of people, or presenting to the board of directors at work.

But really, when faced with an exceptionally stressful and hopeless situation, winning is making sure the small things get done. This is how we don’t fail.

In the 90s the French football team had a number of big stars, such as Zidane and Henry and so on, who would score the amazing goals, and gain the headlines. However one player was in the midfield and didn’t get that acclaim. Deschamp was derided as a water carrier by Cantona, an unglamorous position. However, that team would not have won without him.

Similarly a band can be seen as the lead singer and guitarist, with a few hired hands behind them. Some would say AC/DC are one – the band is Angus on guitar and Bon Scott or Bruce Johnson on vocals right? But you ask those and the band was Malcolm Youngs, the rhythm guitarist who held it all together.

So I have to tell myself that I am not failing. I am playing the rhythm guitar in my wifes illness, carrying the water (literally at times), and making sure everything else gets done to allow the doctors and nurses to do the big stuff, and try and cure my wife.

Thanks

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Finally, the Beck track below popped into my head while planning this blog. I was tempted by something from the mighty AC/DC, but this track fits the theme better!

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

Results day

First things first, we got the latest results. It felt like deja vu. The disease is getting slowly worse. Some improvement in some areas, but new nodules in others. Some markers up, some down.

We dont quite know what to think. Is it good news, or bad? The specialist almost casually references concerns around the pelvis, like this is something we have seen before, then swiftly moves on. We are sure it is something we havent heard about before.

So bittersweet. I have said before that this feels like slow torture, a drip drip on the head. It doesnt seem to have an end in sight.

My wife thinks that the mental healing she does has had an effect. I am practical and logical, so am not so sure. I do feel that whatever makes her happy is good though.

How do I feel? Is it bad to be almost disappointed? I want to have some form of conclusion. The whole thing has been going for too long, and we are all held back. However I know that that means the unthinkable. So I can either suck up the crap and keep going, or be a total dick and hope for the end. Talk about caught between a rock and a hard place.

And yes, I know that that last paragraph makes me sound like a self absorbed arse, uncaring and a dickhead basically. And you know what, that is true at times. But I would challenge anyone to experience this and not have dark thoughts at some point. They would have to be a saint not to.

People with cancer are the main focus, and rightly so. They have everything to lose, and have to put up with immeasurable pain and suffering. However, please remember the carers out there as well. They do an amazing job looking after their loved ones, spouses, children, often without thanks. They can be seen by the patient as lucky, nothing is wrong with them is there? But the mental impact of looking after someone you love, seeing them deteriorate and lose what once made you love them, leaves deep phsychological scars. They will be the ones to both care for a dying partner, and then straight away pick up the pieces in the follow on world. They do a job of caring, whilst at the same time often having to plan for what they will do when their patient has gone. And most times, the one person they would usually be planning with is lying in pain on the bed next to them, the last person who you can talk to about those kind of things.

It is a thankless task that is thrust upon many people around the globe. And I will admit it does get me down alot, and the tone of this blog is driven by that this week. I feel guilty for being down about the results, I feel unsure of where we go next, and I feel that we are trapped by this disease, all of us unable to move forwards, however hard we try.

So the black dog is sitting on my shoulder, just at the one time when I need to be upbeat. We dont choose our lives, they are chosen for us. My depression will pass, I know that. I just have to push myself on and find joy in the world and my family.

Stay safe, and keep on keeping on.

Fears for the future

I have a few fears for the future, aside from the obvious one. I am fully aware that we will lose my wife at some point. There have been times when I thought that time had come and we have got past it, but realistically it will happen.

The first worry I have is how I will tell the children. They are currently 11 and 17, and have lived with this for over 6 years, but when it does happen, I have no idea how I will tell them. I have no concept of how to start that conversation, or how to comfort them. And that isnt because we are not a loving family, but because I have never had any experience of that level of magnitude. We have dealt with alot over the years, and have come through, but even with the major experience advantage I have over many dads, I still dont know how I will manage at that time. I’m not ashamed to admit I have had nervous breakdowns trying to imagine it (usually after a few beers to be fair). I always feel my main role in life is to try and protect my family from things, and this disease has shown that that is not possible. I cant shield them or my wife from this horror.

The next fear is for my wife. I have been there when she has been told she will be put into a coma, and have seen the fear in her eyes behind an oxygen mask. I have seen her lying in that coma, and others way too often. I cant even imagine what goes on in her head, and how she copes after all of this. How can she keep going, and look after us all, when her brain has been effectively rewired by a stroke, and her body literally cut open and changed by surgeons, and cells destroyed by drugs and radiation and nuclear isotopes. After all those horrendous and scary and disabling experiences can a person even get out of bed in the morning? I know they say that after a near death experience people have a renewed vigour, but I’m not going to lie – that would need a hell of alot of vigour to get over. I struggle after a heavy night on the ale.

I also worry for the rest of the family. My mother in law has devoted so much to the care of my wife over the years, and I dont know how she will cope. Other immediate relatives are close and the fabric of our whole family will be ripped apart. Friends also will be lost to us I’m sure – I’m useless at keeping in touch with people.

My final worry is for me. I’m now 47, and have now been a carer for 6 years. I have friends, and a job, and the children to look after and worry about, but I also need companionship. While my wife has been ill, our marriage has evolved and whilst it is still loving, we dont have the sort of relationship other people may have. We dont do date nights – my wife would probably fall asleep early, and she cant eat a wide variety of food, or drink alcohol. She is in pain quite alot, an ongoing back problem adding to the other concerns, and so a physical relationship is out of the question. All this means that in a selfish way I feel I am missing out on a fair amount of living, but also do not know how I will ever get that back in the future. The things loving couples do together are now realistically gone from our marriage. I dont think we will ever have them back in our lives, and I also dont know if I will ever find that again in the future. The disease has robbed me of most of my life, and left the identity of the man with the sick wife, the family always seen with concern, the first question always how is she?

Starting out in life, as a young couple you have hopes and dreams, and build a life together to try and achieve that. Cancer has come along into our lives, and taken that away from us, and despite amazing medical science extending the time we have together, there is always the knowledge in our minds that it could change at any second – a cough may be something more nefarious, a routine scan could show a spread of disease, and in seconds things could change again. This is my final fear, that just when things feel they are going well, we find out that no, they are not, and the reality will suddenly drop again, and we will be cast back to hospital rooms, and operations and horrible treatment. There is a feeling of waiting for the inevitable to happen, and it is the anticipation that hurts so much for the rest of us.

Death by a thousand cuts

Four rounds now, and they are starting to bite. She is struggling to get into the car to go to the hospital, let alone get out the other end and have the treatment. Because of the location they are targeting on the liver, which is close to the bowel, every time causes more and more sickness and nausea, sometimes even physically. And then add in the mental aspect as the knowledge of how she will feel afterwards causes anxiety, and she is in a really bad place.

Finding food to eat is tough. She doesnt fancy anything, and when we put something in front of her, she may pick at a bit, but cant eat it. She has lost alot of weight, and looks very weak, and feels trapped in her own body. Unable to go too far without full strength, she is currently lying in bed looking at the ceiling.

I worry about this reaction, as this time round it feels different from before. Yes, she has had a bad reaction to chemo, and has been hospitalised following immunotherapy, but right now she is losing strength, and also losing the will. I see a depression that is staying longer, that is taking over every minute when she is at home, and awake. And that is often, as the pain from her liver makes it hard to get comfortable.

This must be the way that cancer finally gets its victims, by slowly weakening them, until they can face no more. The methods used to try and erase the tumours are so strong, so damaging, that there is now wonder that eventually the patient loses the strength to do any more. Though I hate the analogy that a cancer victim loses their battle (I feel it implies that they didnt do enough), I see the way that cancer is a death by a thousand cuts, taking a little more away every time, not leaving enough time before the next round of treatment, that will weaken a bit more, and then not leave enough time until the next round, and so on, an ever shrinking circle of treatment, then waiting, tormenting the mind, and hurting the body, leaving a permanent worry about what is going to come next.

As you may tell, this feels a very dark time for us as a family. With luck, we may come through, and my wife may gain her strength back, and I really believe that she can (she has beaten so many odds before). There is one more round of treatment, and then a longer break before scans to determine what has happened, when hopefully we will see the results that outweigh the pain.