I want to talk about mental health

It has been a strange weekend. We were invited to a birthday meal for a close friend on Saturday night, however my wife was in tears ahead of going as she was nervous about the occasion.

She was worried about her outfit, worried about being able to sit at a table for a long period of time, worried about not being able to hear people at the table, worried about not being able to eat. She hates not being the same sociable person she once was. She physically cannot do the same as the rest of use when out. And she also knows she will pay for any social situation the next day. And that was borne out – she was very tired on Sunday, though did manage to meet some different friends for a while. She thus managed two social events in 24 hours, which will do alot for her mental well being.

However the bigger news had happened earlier on Saturday, with a sad call to tell me that my sisters boyfriend had killed himself. My sister had been the unfortunate person to find him. Even a day later, I have no idea how to process the news, and am in a state of shock. I cannot fathom what my sister is going through right now.

I have mentioned mental health on a few occasions, and touched on my own personal battles at times. The events of this weekend go to show that you can never know what is going on behind someones eyes, their outward appearance may be fine, but their head may be in a totally different place. I have said before that you need to talk and let someone know if that is you, and if you suspect someone you know is having a hard time, try to talk to them, offer them a helping hand or even a shoulder to cry on. I have friends I talk to regularly, but also friends that know that sometimes all I need is a coffee in peace.

There are also organisations that can take you call. The Samaritans are always there – https://www.samaritans.org/ – with qualified phone operatives who will take your call and chat with you. Other charities help deal with mental health such as https://www.mind.org.uk/. The people who work for these charities do amazing work helping people.

There are also various forums and groups that you can contact, and my other post with information for carers will soon have some on there. One other thing I have found has been the support that can be found on Twitter – ahead of our night out on Saturday, I received lots of encouraging messages from people I have never met or heard from before. I can be found there on http://www.twitter.com/mywifehascance1.

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Anger is an energy?

I feel really fucking angry alot of the time these days. But it is impotent anger. As the title and lyric from Rise by Public Image says, anger is an energy, but I feel I am generating that anger with no way of using it.

I get pissed off at the traffic on the roads, I get wound up by the cat meowing at me all evening, I get annoyed by the children being slow to dinner. Anything can get to me, driving me into a fug that will last a long time.

Of course, the main reason is the damned disease my wife has. Cancer. Ruining our whole lives. Destroying our dreams. Causing pain and suffering to my wife, and driving all of us into a state of depression. It is enough to drive any one to anger.

I dont understand at times why the world seems to get angry at the wrong things. We have in the UK people angry about Prince Harry, annoyed at immigrants, and abuse screamed at so many people. Why cant the country direct this energy at cancer. Work together to defeat a common enemy.

According to the NHS, 1 in 2 of us will develop a form of cancer in our lifetimes. 1 in 2. 50%. That is really sodding high. Why are people not pissed off at it?

I’m pissed off especially this week as after taking my wife for scans we have to wait a week for the results. I am unsure of how good those scans will turn out to be, and am annoyed at how slow the process is. Dealing with cancer seems to take forever, when I want some form of definitive answer. I want to be told they can do X and the disease will be gone. I want this to be over, its been long enough now.

Back to the start this makes me feel impotent. My role as a carer is to take care of my wife, pick up the pieces of our family, and support her. I cannot do any more than that. There is nothing I can direct my anger at. There is no one to confront, no one who I can shout at and ask them to solve this nightmare. No one.

Anger is an energy yes, but that generates more anger when it cannot be put to good use.

If you feel like this, the following link has some good information, and advice on dealing with it.

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How to cope when my spouse has terminal cancer?

How to cope when my wife has cancer? Things I’ve learned from the time since my wife was diagnosed with cancer, and ways we manage

Since my wife was diagnosed in 2016, I’ve often asked myself the question, how do i cope? I’ve said elsewhere that the diagnosis day itself went by in a blur, and in the time since we have been on a rollercoaster of both emotions and physical health. Most of the time I feel we react by instinct, rather than being able to properly learn how to manage.

I suspect that is a normal human reaction. You face the challenge immediately in front of you, never seemingly realising when they become too big to overcome.

From a mental health perspective this has been tough. Not only is there the anguish of watching your loved one, wife and mother of your children suffer horrendous pain, and waste away, but also the loss of a partner and lover. Mental health guidelines talk around how a stable and happy marriage has a positive impact on your mental health. To thus lose that critical relationship knocks one of the legs away that keep you on an even keel. The person you confide in, discuss plans for the future, have date nights with, is gone. My wife is still with us, but our relationship has moved away from the one it used to be.

There is also then the loss of intimacy, and for me, the worry of whether you will ever regain that kind of relationship again. When one partner is unable to maintain a ‘normal’ relationship, the other partner does suffer. Rightly or wrongly, I feel really guilty for being this way – I am not the one with the terminal diagnosis, and so why should I feel bad for myself? And this increases the mental toll – I pine for the loss of my marriage and physical relationship with my loved one, but am then guilty for feeling that way. And on a really selfish note, I worry that I will never have that intimacy again.

So these opposing ideas play out fairly regularly in my head, the worry for my wife and her health, and the worry about my own life going forward along with the loss of the life we have built together over nearly 20 years of marriage. Then throw in the worry about how my children will be and what I can do to look after them, and my brain doesnt feel big enough to compute all those thoughts.

In the build up to Christmas, I also realise that I dont have a clue how to ‘do’ Christmas. I mean, I know how to cook the dinner, and go to the carol concerts, and buy presents (even though I cant wrap them), but it is the little special things that I dont know how to do. My wife manages to find small gifts, and decorations, and treats for everyone, that while I may moan about the tweeness, do make the magic happen. And I dont know how I will go about copying her when the time comes. Could be next year, or the year after, and I wont have a clue. And so I have extra worry about making sure my children have a great time this year.

So back to how to cope. Various web sites give lists. An example follows from the Macmillan website, and talks about how to support a partner with cancer.

https://www.macmillan.org.uk/cancer-information-and-support/supporting-someone/emotional-support-for-family-and-friends/supporting-my-partner-with-cancer

They stress the importance of communication, making time for each other, talking to professionals, getting support for children, asking for help from friends and family, and letting your spouse having as much control as they can take. These are all great pieces of advice.

In our relationship, we have talked about things. We have planned funerals, which was an horrible experience, we have discussed inheritance and wills, and ensured they are up to date. We maybe dont always address our fears with each other – my concerns as written earlier would add too much guilt to my wife to talk about with her, while sometimes the things she may wish to address would be too painful for her to think about on top of the physical pain she may have. I feel though that is part of communication between a couple – knowing when to discuss something, and when to shield the other.

We have used professional help, especially where the children are concerned. Counselling has helped them both, and we have also been lucky that their schools have been very supportive. We have encouraged them to keep up hobbies outside of school, and push themselves to try new things. I have also tried counselling, and have to admit it didnt work for me. I found it not quick enough to answer my questions, but that may be a case of not finding the right counsellor. I felt that I wasnt being told anything I didnt already understand. I do feel though that I should have another crack – the thoughts and worries can be overwhelming. My wife has also spoken to various people, from counselling to healers to other alternative processes. They have worked wonders for her, and created a zen feeling for her!

Friends and family help a great deal, and I do appreciate that we are fortunate as a family to have a great circle around us. They have supported through the really low times when she has been hospitalised, and during the times when my wife just needs someone to take her shopping. It can be tempered with a warning though. Not seeing her on the day to day does lead to people not understanding her limits. Even an hour of talking will wear her out, and sitting in a car for a long period of time will lead to her feeling unwell. I dont want that to come across as ungrateful as we do appreciate the support.

Control is an interesting point. In our household my wife has always been in charge. She was always the one in control, and still has that, at least for moments. She has very lucid times, where she will be doing everything all at once, tempered by times shortly afterwards where she crashes. Every day will be a series of highs followed by a series of lows. So we do give her control, but have to be aware that it may not last.

However, I do see how control is important. For someone who has lost so much, there is a real need to put your arms around the bare minimum. Losing your job, your eyesight, and your independence means you cling to any small thing that you can control. And that is also true for the rest of us. We have to control what we can, living in a life that is a maelstrom of emotions and health issues.

It is tough watching as she sometimes struggles, but we need patience. Helping to make things easier, and picking up the pieces afterwards are a great help. However, I find we need to be watchful for the independence to go too far, as some aspects can become obsessive. Cleaning in our household is a prime example, and sometimes the smell of bleach can be overpowering. But, this is just a way of owning your life and being the boss in some areas, when you cant in others.

But back to how I cope. Short answer is that I dont think I do. Yes, the children get to school, I go to work, and we make it to the appointments. But scratch beneath the surface, and I lack motivation at work, but get annoyed with myself for that. I know what I need to do, but cant push myself to do it. Jobs at home dont always get done, as my mind is elsewhere. Finances are an absolute mess, and we are barely getting by each month. Having gone from two salaries to one, with all the extra expense needed is crippling. We are lucky we have health insurance, otherwise treatments would have ended long ago. We dont have as much of a social life as we used to, but I still like a drink at home.

Put bluntly, I dont feel our lives are advancing. I see friends moving forward, doing exciting things, making something of themselves, but feel I am stuck in a rut, unable to get out. This is why I dont feel I cope.

Others say differently. They are amazed when they hear the full story of every meeting with doctors, every round of treatment, and being able to make our children have a happyish life. That is an achievement in itself.

Coping is different for different people. And alot depends on what your expectations are. At the start of this post, I talked about sometimes we fight the battle in front of us, without realising how big the challenges actually are. You just eat them up one mouthful at a time. So that is really how you cope. You take what comes at you and overcome that, before moving on to the next problem and dealing with that.

One last comment – trying to switch off is really important. The mind needs to be occupied, and keeping up hobbies and interests is vital when under stress. I read, and listen to music, basically perfect introvert hobbies! I’m not a great sportsman, but go running when it isnt freezing cold. These all help combat things. And if you feel like helping with that process, there is a buy me a coffee link you can click on. Anything is appreciated as a sign that people do care and are interested. Thankyou.

Weekend Worries

After the mixed results last week following the scans, we settled in for the weekend. My wife had managed a fair amount of things during the week, and we then went out for dinner on Friday to meet some friends. That was very pleasant, and great to catch up.

Saturday was a morning of watching our son play school sports, before my wife was picked up by another friend to meet with the girls. She couldn’t eat a great deal though, the result of the tumours restricting the expansion of her stomach. The way this symptom was described to me was to imagine your stomach is like an inflatable water bottle. When you fill them up, they will expand to allow the liquid in. However, in her case, the expanding bottle has a hard case surrounding it, and this stops the bottle from reaching the full potential. Little and often is the only option. Couple this with her lack of ability to digest certain foods, and some restaurants can be out of the question. Anything spicy doesnt work.

The upshot of all these activities was that she was asleep by early evening on Sat, and then spent most of Sunday in or on the bed. She didn’t even get dressed. Partly due to a pain in the leg (some form of cramp we hope), but mainly the sheer exhaustion. I have discussed this on previous blogs. It can be amazing how the normal exertion we do can wear her out. The seemingly shortest walk or cooking a meal will have her done in.

This morning though was a scheduled trip to the doctors for a vitamin B12 injection, which hopefully will help combat this. Being low on B12 can lead to tiredness, and unfortunately her being vegetarian as well means that she doesnt always get the right amount. I understand cancer doesnt necessarily lead to a deficiency, but when taken in tandem they can be have an impact.

I have put a link here to a good article about the links between cancer and B12, and the importance of it:

https://seormc.org/the-importance-of-b-12-for-cancer-patients/

So far though, no noticable effect. Dont you wish that some medicine had a quicker positive impact sometimes? I do miss the days in our house when you fixed a headache with a tablet, or a stomach ache could be slept away. Now we have to deal with degrees of illness. Is the stomach ache worse or better than before? Is that pain in your leg caused by sitting in a car for a long time, or is there something more sinister?

Other concerns I have are my sons mental health. He is happy in his new school, though misses friends from his old one, but does seem to sit doom scrolling on his phone, waiting for messages from the watsapp group. He picks up on things easily, and so his mum sleeping a great deal makes him feel down, and tired. He has slept in our bed with her for a couple of weeks. It makes him happy, and he doesnt disturb her in her sleep like I do apparently!

My mental health is still hovering around the lower levels. I suspect that wont change for a long time. I am starting to use some coping strategies, and am planning on detailing a few in the coming weeks. My wife has got full into yoga and healing crystals, but I havent yet resorted to them!

Whilst the results did show a small deterioration last week, and the specialist said no need right now for treatment, I do have concerns over her health. There seem to be many more small niggles, aches and pains. I wonder at times if she is keeping things from us. I know she doesnt want any more treatment this side of Christmas, but not being in the meeting with her specialist, I only have her word for how sensible that is. On the other though, the treatment was hellish, so I fully understand her position.

Ultimately she is sat between a rock and a hard place. Her life right now is very restricted and frustrating. Her ability to do the things she used to gets less and less every week. But again, the other option is horrendous as well. Hobsons choice I believe is the saying.

As ever, please follow my blog. Seeing readers does help keep my spirits up. I do this anonymously as I dont like attention, but I am real, and use this as an outlet for my thoughts, both factual and then deeper depressing ones! At this point I feel we are in a deep hole, and the escape ladder is being pulled away from us. I’m not sure how we are going to get out at this stage, so having the ability to write down what is happening helps.

And if you feel you have gained something, please click the link for my BuyMeACoffee site – I am running pretty much on caffeine and gin these days, so have a habit to maintain.

Mental Health

The times when treatment is happening are the hardest parts for me. I don’t go into the hospital and do spend hours waiting for some news. But also the recovery days afterwards I find really hard. I can’t concentrate in work, I can’t enjoy things at home (apart from alcohol), and then have severe regret, worrying about things. Was the work I did manage to do sufficient, will people allow me some slack, am I doing enough,

I have said before that I have a real feeling of helplessness. Aside from keeping the house tidy, looking after the kids and fetching food and drink, I can’t do anything practical for my wife. I can’t cut out the tumours, I can’t meet them away, I can’t take away the pain, I can’t stop the depression, I can’t make her human again. I am utterly hopeless and question why we are here.

I worry about work. Not everyone knows, and not everyone remembers timings, and why should they. To other people my life is a story – “did you hear about his wife, glad it’s not me”. My manager hasn’t even asked about the latest round of treatment, we are a side show. And to this backdrop, colleagues will question my commitment, compare me to others and draw their own conclusions.

Radiotherapy has not been easy. Dehydration and tiredness with the threat of a blood transfusion are the current high lights, which is pretty fucking depressing. No idea if it has done any good, no idea if that 6cm tumour on the liver is smaller or bigger or gone. What we do know is that another two weeks of her young life have been taken over by hospital visits, and not playing with children, not eating in fancy restaurants, not even meeting friends for a drink. Those things have all gone in without us, while we shut away from the world, scared that any visit could bring an infection into our house, scared of every cough, every ache, every sleepless night.

Cancer robs everything, it doesn’t just kill, it destroys the quality of life and kills relationships and family.

I would end on an upbeat note, but tonight don’t feel one. Instead I want to mention 25 years of OK Computer by Radiohead, arguably one of the greatest albums ever made. It fits this week, so try this tune.