Tag: Cancer

What is the best way to support a friend with a terminally ill partner?

I met up with an old friend this week for a catch up. Only briefly, but it was great to see him and have a coffee. As you would expect we talked alot about my wife, and about how things are going, and inevitably the question arose of how can we help you?

It is always a tough question to be asked. The immediate answer is that I just dont know. Aside from finding a cure, nothing else is at the front of my mind most of the time. But taking a minute to think, there are some practical things that are appreciated.

Little things help improve the day. A coffee or beer always help brighten the mood (another plug here….)

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Offering to pick up my wife and help with her appointments, or have her round to your house for coffee one day. This will help me immensely with some down time to recuperate and try to recharge my batteries. Even when we are outside of treatment, and things seem to be on an even keel, it is tiring constantly being worried and having to ensure she is looked after.

One friend has offered to take her away this weekend, which will give me and the children some time to relax and not have the constant reminder of the illness, selfish as that may sound.

When we had times when she was in hospital, someone dropping round a meal for tea was amazing. A small gesture as someone made a bigger portion of their pasta and gave it to us, meant that I had one night where I didnt have to think about looking after myself and the children.

Picking up the children from school when we have problems is also great, and having them round to play with friends means they get to do something to take their minds off things.

Even just coming round to see me and asking how things are without expecting an answer is great. I dont like to talk much about the situation, but knowing someone is there if I do feel like it helps. The fears dont all come out on demand, they can take a while to process through my brain.

Ultimately, the greatest support is knowing that you have friends who have your back, care about you, and will be there then when the inevitable happens. I find that I am being more flakey right now, so knowing that people understand that and are willing to stick by, can brighten my mood.

I worry that the length of time we have had to endure this life, has seriously impacted my well being. Well, I know it has, but to what extent?

I found this on line, and can shamefully see most of these in myself. I have spoken previously about feeling isolated, and not able to commit to meet people or see friends. I have noticed a lack of attention span, and loss of interest in my previously enjoyed activities. I struggle to find my happy place these days, and feel sad, irritable and have a general hopeless feeling. My mental strength cup has become very empty, which is why the things I mentioned above are so important.

I found an interesting article on the following link – https://www.psychologytoday.com/gb/blog/emotional-nourishment/201608/helping-friend-whose-loved-one-is-seriously-ill. This talks about the exact situation if you have a friend with a partner that is ill. Interestingly, it gives advice to try and understand what your friend is like, and tailor your support to that. One size does not fit all. I am very introverted, and so dont respond well to calls alot (I have on occasion watched as the phone rings), but will respond better to texts and in person. This would be different to someone more outgoing, despite the situation.

The other aspect is to not feel that you have to give a solution, which is especially true in my case. Just being supportive, and being there is enough to help.

My main take away was the point around making sure you understand your friend and their phsycological make up. I have great friends who do this, but can imagine it would be hard with someone accidentally overstepping when you are in a stressfull situation.

Still as someone who does need help, it is good to recall The Beatles, and when is it not a good time to recall The Beatles, especially as it would have been Georges 80th birthday this week.

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Stuck in a moment that you cant get out of

Despite my shortening attention span I was reading the following article – https://www.psycom.net/eleven-phases-grief, which is well worth reading if you get a chance. Stay here first though. The article is about watching a loved one die, and the unspoken phases of grief associated with it. Two parts struck me in particular.

The first was the feeling of being stuck. They describe how the author felt unable to make short term plans because they didnt know if they would have to drop everything. I have been through this, and am still going through this, maybe even on a greater sense recently. The inability to commit to things, such as meeting with friends. We have had a few occasions (many mentioned here previously) where we have had to pull out of meeting people at short notice.

I struggle to commit to speaking to friends, which is an extreme example of this being stuck. I know what I need to do, however cannot do the right thing. I feel inferior in some way, stuck in the moment that we are living. This might explain my listening to alot of music from my youth, trying to regain feelings of the happier times.

On a longer term basis you start to make sure that all bookings are refundable. We have had to cancel holidays and things of greater expense in our journey over the last few years. The knowledge my wife is worse than at those times makes you very wary of doing anything. Add in the mental impact of building up to something only to have to cancel, and it is easy to see why you become a recluse.

I feel that we are stuck in a loop. I watch friends and family moving forward with their lives, while we repeat the same cycle over and over. Despite wanting to break through, I know that we will always be dragged back to the situation. We know that we will have more hospital trips, and we know that her disease will only get worse. Having that knowledge means you have to fight harder just to keep your lives the same, let alone advance to something different. The saying one step forward and two steps back fits perfectly here. We may feel we are moving on, but right now are always pulled back again.

The second part of the article that hit home talks about relief. I think this can be seen as an expected emotion to everything that goes on when dealing with a terminally ill loved one. You experience such immense mental struggles, having to operate at high levels of stress for so long, constantly worrying and being on edge, that the feeling of relief will be inevitable when the end finally comes. Relief that the suffering of your loved one has ended. Relief that the cycle of pain you are experiencing has ended. Relief tinged with immense survivors guilt.

As a caregiver you go through so much alone. Thats not for lack of support at times, but just the very nature of what is happening means that other people are not aware. I am going to share a quote from the article here, which really does ring true.

“Watching someone you love go through treatments and not have successes… to see the tubes, the setbacks, the lack of dignity in the dying process… others do not picture how painful that experience is,” says Nathan. “And often, we do not share it.”

That is true. I have friends who know and understand what we have gone through to a certain extent, but even my closest confidants do not have any idea what is is like to sit and watch a loved one struggle for breath at 3 in the morning, or observe as tubes and pads are connected to keep her alive, hearing the beeps and the sucks of the machinery that surround her bed and operate as her bodily functions.

Some experiences we dont share because the true extent is too much for us as caregivers to fully comprehend let alone for someone who wasnt there to understand. Couple that with not being able to articulate properly what has happened, and blocking out things from your mind subconsciously to avoid reliving the more harrowing details. I lived through so many experiences that I wold not want to remind myself of, and plenty of things that I wouldnt want my children to remember.

So I fully understand how relief can come. A sense that the horror wont be continuing, and that the pain from that stage has gone. I am fully aware though about what will rush in once the relief has faded, dont get me wrong.

I have again said this before, but I am in the horrible position of wanting this situation to end, but dont want to lose my wife. I am sure the children would feel the same. They want to have a normal home life, without one parent asleep on the sofa with crippling stomach pain, or without a stock pile of drugs in the high kitchen cupboard. They would love to have two loving parents doing things they see their friends parents do, going out together, or sitting down for a family meal they can all eat.

It isnt much that we need as a family, apart from a normal life. We are stuck in the routine we are in, waiting for the relief of the end.

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Remembering holidays at Walt Disney World Florida with my daughter

My better half is still away today, and so I didnt speak to her very much. Hopefully she is doing OK, and recovering from the bad stomach cramps at the end of last week. It is a great worry when she is away. Whilst I appreciate the downtime, there is the nagging feeling at the back of my mind that something may go wrong.

Do other people have this? No way of properly switching off. I used to be like this in work, until the trauma of our home life gave me other things to concentrate on. Apart from the worry of my life, I find that I have let the ball drop on some other items of our lives, and so have tried to spend the day catching up on the tasks that need doing.

I was also transporting our daughter to work experience. She is very grown up, and despite all the things going on, is doing amazingly well at 17. I wish I knew how she manages it, and if I could I would bottle up her devotion and sell it. We would make a mint. Anyway she found and applied for a work experience program in engineering by herself, and thankfully it wasnt too far away. I dropped her off at the office this morning, and collected her at the end of the day.

It went well, and we chatted in the car, before the conversation took a route down memory lane. In the years BC (Before Cancer) we had holidayed in Florida a few times, especially when my daughter was younger. And we got chatting about the theme parks there. She is a massive Disney fan, like her mother, even more so in some respects, and we discussed favourite rides, any new ones that she would like to see, and which parks she would most enjoy now she is older.

I would love to take her back there. To see her and my son experience the magic of Disney in Florida (say what you like, and be grumpy, but there is something special about the parks when you fly over from grey England) would be a dream. I know she would take the reins from my wife and organise every second of the trip, with a Pinterest list of food and clothing options, and every Instagramable picture opportunity. (And I know I didnt spell those correctly, but be glad I know about the Gram!).

At this point there is no way it can happen though. To start right now my wife is not healthy enough to travel, and regardless of that would not get insurance to travel. There is also no way I can pay for a trip to Florida, unless I rob a bank. I cant pay for a trip to the park these days. So the holidays we had before, where we went to Orlando and Naples are gone. The only way we will ever get back there are after my wife passes.

A simple conversation in the car will always remind me of something else that has been taken away from us, and brings further pain and sadness. The long term terminal illness has stripped away every facet of what we were as a family, and replaced it with a temporary never ending ride of relentless heartache. (A bit like Its a Small World some would say…)

Yet again I wish I could turn back the hands of the clock, find some way to reverse the tumour growth and destroy them before they have the chance to destroy my wife. Find a way to preserve the life we had built, and find a way to protect my children from what they are experiencing, what we are all experiencing, and help keep my wife healthy.

For the record my daughter most wants to visit Epcot again, as she thinks she would enjoy it more now she is older. She is also a massive foodie, so would like to try the food festival they hold in October. I suspect that she would also love to see Magic Kingdom again, though doubt she would want a Princess dress now.

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What skills will you need to develop as a carer?

My wife has gone away to stay at her mums for the week, taking child 2 with her. They left this morning, and I whilst I should be looking forward to some down time from my role as carer, I felt guilty.

I guess I feel guilty as I was looking forward to her not being here, meaning that I could try to relax a little. I love my wife, but I dont love the disease and the impact it has had on her. Thankfully she has left a list of jobs to do, so in reality it is like she is here, but without the TV being on all the time.

You may realise that it is Valentines Day next week, and ahead of her being away, we decided to take advantage of the mother in law being here to have a meal out, just the two of us. I honestly do not recall the last time we managed that. Over the Christmas period when we had the time, my wife was laid low with the horrible cold and cough bug, and was totally fatigued.

So, we had an Italian restaurant booked. I left work early, despite not having to do the school run, and got home to my wife again in agony. The same stomach problem she had a couple of weeks was back. She was crippled over, and the only thing helping was a hot water bottle. Apparently, it was alot like really severe period cramps. There was no way we were going out, and so another event was cancelled, to be replaced with a night of worry.

The more worrying element this time around was the sight of blood when she went to the toilet. This is a serious development. Hopefully it is nothing, but the odds may not be in our favour. A letter from her oncologist this week mentioned that the pace of the disease and the spread to various locations means she has a limited prognosis, with no further conventional treatment options given the number of lines of treatment she has already had. Additionally there is no way to accurately predict how she will be in the near future, and she may possibly only have a life expectancy within months. Again, we have hope, but hope may be all that is left.

I have had this feeling since Christmas, in that I dont see how we will still have her for next Christmas. Depressing, but I have to plan for the future. I desperately want to be wrong, and that we may find some revolutionary cure, however the chances are getting less and less. We have already had many extra years that we shouldnt have had. The letter also confirmed something I was thinking. I had been frustrated that nothing was happening, and felt we were being told to wait far too often. However, it may be that there is nothing that can be done, and so waiting is our only option.

So the few hours since they have gone have not been spent relaxing, rather trying to shift the massive stress headache, and clean up cat sick. I did however get thinking about the type of skills I have had to develop as a carer, and it is worth sharing with you now.

Firstly, I am not in any way a qualified carer. Those people are amazing, and have empathy and knowledge above and beyond anything I will share here. However, I do have experience from nearly 7 years of looking after a terminally ill partner.

  1. Firstly you need patience. There are times when you have to wait for results, but also times when you are just sat in a waiting room for the next appointment. Or sat in the car park waiting for your partner as you are not allowed into the hospital. Waiting is a big part of the life of anyone associated with cancer. Unlike with most illnesses, you cannot just go to the doctor, get some tablets and be better. There are degrees of better, and you will have to wait and go through all the stages of them. The other aspect of waiting for me is that my wife is not now as quick as she was. Since her stroke any activity can take a while, and she needs her independence so should do things herself. This means that something as simple as leaving the house to go to the shops can take 30 minutes while she cleans the kitchen, and tidies away shoes.
  2. Empathy. I am a carer of a woman who is dying. I damn well need to be empathetic to her life and try to understand her reality. Some things may not make sense to me at first, but there is a reason why she is doing them. A case in point is the constant need for cleaning. My wife has to control something in her life, and this is her way of doing it. And she may not have long left, so if she wants something done her way, we need to do it that way.
  3. Agility or the ability to change quickly. Things can happen suddenly. One afternoon you may be packing to go on holiday, that evening you may be sat in A&E ahead of a three or four week stay in intensive care. Plans to go out for a meal may be changed at the last minute. It sucks, but it happens. The health of my wife has to take priority over the rest of our lives.
  4. Outwards positive attitude. Look, the life of a cancer victim sucks a big one, but as a partner we need to keep the positive attitude. Keep motivating. A positive attitude on life may not have an impact on her illness and potential getting over the disease, but I’m not going to risk otherwise. We also have two children, and need to keep things light for them. Things may not be light, but they dont need to be worrying on top of everything else they have to deal with. Leave the worrying for me.
  5. Which is my next skill requirement. Taking the brunt of the worry in the household. I’m not being sexist “Oh, I’m a man, I should do the work”, no this is more, my wife is dying, she needs to concentrate on other shit right now, not the petty stuff around the house. She doesnt need to worry about the children getting to school on time unless she wants to. She should be doing whatever she wants to.

There are other things you need to develop. Living on little sleep, learning how to source random food stuff at a moments notice (we have been through Angel Delight phases, made pancakes at midnight, and get distinctive squash in strange locations). All of these are useful.

But realistically, the person who has had to adapt the most is my wife. She has the life ending illness, and she has to live with that fact. So the final skill I have had to develop is one of being supportive, and helping through this horrendous journey the best I can.

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Things we have lost to cancer (pt1)

For want of anything else to say today, the first in a random list of shit we have lost to cancer. It almost goes without saying that as a disease it sucks, and I cannot emphasise how much I probably under estimate what it is like to have a terminal diagnosis. I cant even imagine how crap that is.

What I can talk about though are some of the things we have lost following my wifes diagnosis way back in 2016. I’ll start with some obvious, then some more surprising items. Buckle up.

  1. My wifes health. As I said, starting obvious. But she has gone from a fit and healthy 40 year old, regular gym going, running, swimming and so on, to being unable to walk very far, requiring a disabled badge, and has lost a serious amount of weight and body definition. The difference were you to put a before and after photo would be incredible.
  2. Her career and income. I’m going to lump this in one category, but could almost be a blog post by itself. My wife worked hard, and was a high flyer until she was knocked over by the disease. As a family we have lost that income, and struggle to barely get by, let alone have the extra nice things that we could buy our children previously. And aside from the immense worry over money, this has also meant a loss of part of my wifes identity. I have said before that her disease is the main topic of conversation, whereas before she was well respected in her field.
  3. Independence. It is tricky when you are unable to drive, having been able to do so previously. Tricky and soul destroying. Following her stroke, my wife has lost peripheral vision on her left side, so driving is illegal, let alone blooming dangerous. The loss of vision also makes basic walking on a pavement hard, as she cannot see people coming at her quickly, can get bumped into, and knocked over. The weight loss also means that she doesnt have the strength to withstand this. For a formally strong woman to have to be so cautious when out is heartbreaking.
  4. ‘Adult relations’. For want of a more polite way to say it, our sex life has gone. My wife lives in constant pain, and has an uncomfortable stomach, which doesnt really match with having a bit. Regardless of desires, that is something that has to be lived with.
  5. Childrens happy childhood. My son has had over half his life with a sick mother, and they have both been into more hospital rooms than they should have at their ages. My daughter has navigated the very tricky waters of becoming a young woman with this constantly at home. I wonder at times how they have managed it. Well, I know counselling has been involved. And should any young child be doing that?
  6. Friends. Those we dont see as I mentioned previously https://mywifehascancer.blog/archives/592 lost to cancer ghosting, but also the new friends we have made and lost along the way. You dont get told when getting a diagnosis, that you will meet lots of new people in the hospital waiting rooms, and will see them quite frequently as your appointments coincide. You also dont get told that one day you wont see them anymore, or will hear from someone else that sadly they have passed. Comrades in the world you now inhabit, that just leave in horrible circumstances, foreshadowing what will happen to you. As if the terminal diagnosis for yourself and family wasnt enough of a kick in the balls.
  7. Food. My wife has a lack of appetite, and her food choices are also limited. Anything she eats or drinks while having chemo, often cannot be eaten or drunk outside the hospital as it triggers bad memories. We cannot have carrots in the house, and have to take them out of her food if we buy a salad. For a while water was a struggle. Coca Cola is not allowed as it will give her a reaction. Pringles tubes were not allowed in the kitchen. Keeping track can be tricky.
  8. I would guess that most people going through similar will have the same list unfortunately. It is amazing when you take a step back and realise how the tentacles of cancer can creep into every aspect of a family life. From the obvious health, to the longer mental aspects, it is unrelenting. And that probably gives me one final thing to mention, about how we have lost our general peace of mind and ability to rest. A holiday is not the same relaxing time, a break from your life. A holiday for us will still involve counting tablets, making sure my wife can get to places, making sure she can eat without being sick.

I want to mention one last thing. It is https://www.childrensmentalhealthweek.org.uk/ this week. As I have said, my son does have counselling, and I think this is vitally important. In this country we dont discuss mental health enough. I dont recall any such initiative when I was at school, but can think of a few who could have used it. So, please, talk about mental health with your kids, and click the link above to get some ideas.

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Two things to promote today. For my mental health I have started publishing some short stories. The link can be found here. I think they are good, but I would though, wouldnt I?

https://blog.reedsy.com/creative-writing-prompts/author/duncan-fletcher/

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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.

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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.

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A safe space is found and sadly experiencing cancer ghosting

It was a mentally bruising week last week. The worry over my sister following her boyfriends unfortunate suicide left me with an extra weight in my mental backpack. It feels like that pack is getting heavier and heavier on a regular basis, leaving me to wish that sometimes we would have some positive news to empty it a little.

One thing she said got me thinking though. He had said she was his safe haven from his worries, and when he couldn’t get hold of her in his hour of need, it seems that may have pushed him over the edge. So what, I thought, is my safe space?

We choose our partners and hopefully have a loving relationship to allow us to share our worries and concerns, and help us to recover from the stress of life. This is the most important relationship in our lives, and ideally is a happy place, a safe place. What about when that relationship breaks down though? In my case, it has been devastating, as my happy place was being at home with my wife and children. Friday nights were always a great time to leave work and know we had family time for the next two days. That is now gone in our lives. Yes, we have the family time, but the worry over my wifes health is overwhelming, and does restrict what we can do. Weekends can be a slog on the path to another week, rather than a break from the rat race. So I feel that that place to recover has now been eroded.

As an introvert, I appreciate time alone. I need it to recharge. When my wife drove, she would take the children to stay with her mother, and we would have a weekend apart. I didn’t like them being away for longer, but did enjoy the opportunity to finish some DIY, watch football in peace, and generally do my own thing. That doesn’t happen now either, and sometimes it isn’t healthy to be together all the time, no matter how loving your relationship. This can be seen in couples where they both retire, and end up despising each other being in their space. So I find another space to heal myself has also now gone.

We also enjoyed travelling as a family. We have been on some great trips, both in the UK and abroad. City breaks in Europe, trips to America and so on. Now, though, my wife cannot get travel insurance to head further than Heathrow, even if we had the money to be able to fly anywhere. This brings her down as well, and then knocks on to me, worrying about her mental health. When she says we should plan something, I change the subject, as I know in reality it is an impossibility, and dont want to build false expectations.

So my happy place, or safe haven has now become that short time driving in the car, listening to music, singing along when no one else is with me. Sad, I know, but you take the small times you can, when you can forget the reality of what you are facing, and escape. It feels like that first few seconds when you awake in the morning, and forget your troubles, melting into a good place and concentrating only on the road and the tune.

Unfortunately, I seem to be hearing of more and more of my musical heroes being lost. There is an element of old age, but also some with illness, often a form of cancer, which is hard to take. This weekend was announced the death of Tom Verlaine, guitar genius with the New York band Television. The full 10 minute version of Marquee Moon is one of those tracks that demands you to concentrate on the music, and so I implore you to do so now.

I also recently read a great article on Cancer Ghosting – https://www.curetoday.com/view/-cancer-ghosting-is-an-unfortunate-reality – and realised that this was something I had talked about with a friend last week without realising. At new year, we had met with a group of friends, and some were very shocked at my wifes current condition, and sad when I expressed my doubts over how she was doing. These are good friends, very long lasting, but talking last week I realised how they had almost disappeared off our radar. And the article goes into this idea.

I do believe that there is an element of out of sight, out of mind at times. I get it, people have busy lives, and to be honest, ours is a bit gloomy. However, we know that these people may not have many more chances to see my wife, and may regret not spending a little time with her. And I would appreciate someone offering to take her out for a coffee at the weekend, and give us that aforementioned down time to recharge. My friend was quite upset that the conversation had taken the turn at new year, and amazed at how shocked they were. Unfortunately it is not new to me. Colleagues at work dont ask how things are, other friends dont contact us. We have fallen off the social invite list because we cant easily commit, and when we do make events often have to leave early. We are not fun, I get it. But it would be great for my wife to be included.

Finally, some other concerns this week. A new pain in the jaw has come about. I hope it is only a virus in the sinuses and nothing more sinister, and will wait a couple of days to see. Of course, we know that any new pain can be something worse happening, and are never too sure of cancer spreading. My wife has lost more weight, and her arms and legs are very skinny, while her stomach is looking much more bloated and does hurt frequently. She gets fatigued very quickly, but did manage a short walk yesterday. I feel describing these symptoms that worse is edging ever closer to us, hoping that it isnt the case. I have to be a realist however, and have the emergency hotline number always to hand.

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Is my wife really sticking two fingers up at cancer?

I wrote a tweet today, about how it was hard to see my wife go from being at deaths door one day, to being up and able to do multitude of things the next, and how hard it was to cope.

I got a few responses, and comments and it got me thinking. I think one reason why I find it hard is that I crave for things to be normal, and in this case I mean before cancer entered our lives. I hate the situation this disease has put her in. The normality I want cannot return at this time, and I need to accept that.

The other reason is that I have the carer mentality, and as such feel the need to care for and look after my wife all the time. I am being over protective of her, and hate to see her wear herself out by doing mundane cleaning and so on around the house. An analogy in my mind is that of being over protective of your own children, hating to see them get hurt or upset by things.

But by doing this, am I going too far? She is doing things for a variety of reasons. First of all she wants and needs to feel useful. After all the cancer has taken away so much from her, from a career and independent mobility, and a pain free existence. She doesnt want to feel she is sitting around waiting for the end. Secondly by keeping active she is keeping some independence. It cant be easy having to rely on people for alot of aspects of your life. And finally, it brings an element of control into her life.

The cancer is in the most part an uncontrollable disease. Yes, she has had chemo and immunotherapy, but in reality these dont control the disease for long, or at least havent for us. The disease is the one in control of her life, and so by organising other aspects of her life, my wife is sticking two fingers up at cancer, and telling it that it cannot control everything.

So I need to be mindful, and stop trying to look after her all the time. I need to learn to know when to step in, and went to back the hell off and let her get on with things. After all, mental health is vital to keeping fit to face whatever comes next. Like my children analogy earlier, I have to stand back and see what happens, and if she gets tired and crashes out for a few hours, so be it.

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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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Good results, so why do I feel so down?

We got my wifes latest scan results today, along with an update from the oncologist. And they are relatively good. No major progression of the existing disease, but some small changes elsewhere.

The other major change is that she wont be scanned again until April. A longer gap between scans can only be good. It is a sign that the oncologist is feeling fairly relaxed.

So why do I feel deflated? The answer is easy. I need positive action. I need steps to be taken against the disease. Waiting until April means the constant worry still that something could go wrong before then. Waiting means no action being taken, we are not doing anything.

I heard the other day the comment that a terminal illness diagnosis means that the grief starts at that time, and you then spend every day worrying and being in a heightened sense of readiness, never able to take a rest because there is always the possibility of something happening. I guess you could say it is similar to the feeling of being on guard, waiting with the knowledge someone could make an attack on your camp, but not knowing when. The added issue with a terminal illness is that you know something will happen, just not when. The Buckaroo scenario!

We are also confused a little, because the oncologist spends alot of time at other meetings telling us how she needs to see my wife, and now seems to have decided video is enough. She commented on my wifes weight loss, but only saw her face, not the thin arms and legs, and lack of muscle tone. I just hope she is correct in her thoughts.

On a personal note, I feel very trapped. Trapped by an illness that means we cannot move on, I cannot move on with my life. Just when I feel that progress is being made, I will get a call to say she isnt well, or cant sleep, or some other issue that brings us back down to earth. A week without worry would be great. A pint with the lads would be great!

Constant worry is also extremely tiring. Our whole family is shattered. My son looks tired all the time, I feel tired as well. Not a healthy place to be. And with a terminal diagnosis, there is no way of getting cheap insurance for a trip to the sun, even if the money was available to do so, which it isnt.

So I guess we take the small victory today, and be happy we are not gearing up for treatment. That would be much worse.

Thanks

Two things today. One, I have started to compile a list of useful resources and links to things I have read, or used and so on. The page is here –https://mywifehascancer.blog/archives/563 and will be update over time.

The other is thanks for reading, and if you feel so inclined, some support to help keep my blog going would be appreciated. A coffee or a beer would go down well! Please click on the button below:

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