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The first school carol service of the year

Tonight was the first school carol service of the year, at our sons school. He stayed in and was fed there, while my wife and I were to go for hopefully mince pies and then the service in the chapel.

It had been a stressful day before then. My daughter was having an interview to try and go to Cambridge Uni, her big ambition being to study engineering (Yay, go girl!). But the first session was quite tough and led to tears. Thankfully the second one was better, but we wont find out until January.

My wife had been home with her as she dialled in remotely, and as it was a cold day had made a spaghetti bolognese, a family favourite. We sat down with plenty of time to go. However standing up cooking takes alot of energy from my wife, and the smells and sight of the food means she often does not eat.

Well unfortunately today, it was worse than that. Her meal bounced, very rapidly. She looked awful, ashen faced when she finally came out from the bathroom. Sadly this has happened so often that the children know that we just have to wait for her to come back rather than going to try and help.

This was ten minutes before we were supposed to leave for the mince pies and carols. We were already cutting it fine, as we knew she wouldnt be able to stand and then sit on probably uncomfortable chairs for an hour or more, but now the pressure was really on.

And this is where another unfair aspect for my wife comes along. She wants, nay should go to things, and why should she be excluded? But the world doesnt make it easy. Ideally she needs us to park in a disabled bay close to where we are going, however by deciding that she cant spend too long at things, these spaces will probably have gone. So we have to either go earlier, or walk further, both of which will make things worse for her.

Her eyesight is bad, and she stuggles with lots of people around, and so again going late to events means that the ideal seat for her to sit at will be gone – prime viewing space doesnt always get held. We dont like to make a big fuss, especially at school events, for fear of embarrassing the kids, and so dont ask for seats to be saved.

Luckily tonight, despite the traffic and the tea not staying down, we made the carol service, and she managed to join in with the hymns. It was a lovely way to kick start the Christmas period.

Thanks

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We went to see the Christmas lights of old London town

My wife made the suggestion yesterday to go into London and see the Christmas lights. With her blue badge, we get free parking at the station, and a discount on a family ticket, which made the trip a little more affordable.

When we got there, the decision didnt seem the smartest one. We knew there was a march for Palestine going on, and it was the day after Black Friday, but we really under-estimated the crowds. It was rammed. We got off the train at Charing Cross, and found the Strand closed to traffic. Despite the march not heading that way, the amount of people was quite something. My photo doesnt do it justice.

My son gets quite anxious around crowds, so this wasnt getting off to a good start. The other impact was that we could not get a taxi for love or money. No cars, no cabs, nothing. And the plan had been to get a taxi to take us to some of the hotspots, and save my wife from walking.

So we had to walk, through Leicester Square, along Regent Street and to Carnaby Street. We had to take frequent breaks, but even so I could see my wife becoming more and more laboured, head down, face drawn, colour draining fast. This was not what we had planned. A stop in a coffee shop for a restorative latte helped her, and we got along Regent Street, seeing the amazing angel decorations, then into Carnaby, where the theme was the universe.

You can see the people we were dealing with here. It was hard with working eye sight and hearing, but my wife was really finding it hard. Since her stroke she doesnt see anything down her left side, and when people are pushing into small gaps, and running along quickly, she wont see and was banged into a few times.

Oxford Street was worse (no photo I was worried about getting my phone out too often). It was like shoulder to shoulder along this road, and now I was getting worried about the trip and the crowds. I couldnt keep an eye on both children, and guide my wife along and watch where we were trying to go, and keep an eye out for any dodgy looking folk. It was very stressful.

We ended in China Town, a tradition for us at this time of year. And there were queues to get into every restaurant, even at 5 .30. My wife was desperate to sit down, and so we ploughed on to the end of the road, eventually finding a small place with only a five minute wait. The food was amazing, but we here saw the other problem of being out with someone disabled.

The tables were close together which I could see was making my wife worried as she is still scared of Covid. But also the toilet was down a steep stair case. Not ideal for someone who has eating problems, and can be ill at a moments notice. You realise that even while doing something nice, there is never a rest.

We did eventually find a taxi, and managed to get back to our train, my wife being guided more than walking her self. It was freezing when we got home, so I lit the fire and settled my wife in bed, helping her to pull her leggings over her seriously swollen ankles. She managed to get into bed with a hot water bottle and a warm drink to try and bring her back to temperature. Hopefully the long term impact wont be too bad.

So why do these things? We try to maintain as normal a life for our children as we can. We have always strived to make their lives fun.

But also why should my wife miss out? Why should she stay at home and not see the lights, not enjoy a trip out? She is disabled not someone to be thrown onto the scrap heap and left in the house to be forgotten about. The memories of our trip yesterday will last for a long time, and will act to block out the sad memories we all have.

Yes, it was frustrating at times, but the frustration is at the situation, the inequality for disabled people, and at my wifes illness, not at her. I am amazed and proud at how she managed to cope with it all. She has always been determined (we call it her water ski face from when she tried water skiing on our honeymoon and was determined not to fall off), and that determination has been evident throughout her illness. She battles through everything, long term incapacity, comas, 12 hour ops, and to be able to still walk through a heavingly busy central London is an inspiration to us all.

We are attempting something similar today, visiting RHS Wisley to see their lights. Some more of the determination will be evident I’m sure.

Thanks

Revisiting last new year, and thoughts of 2023

Its only November, but we are already starting to visit Christmas Fairs, and get present lists from the children. We are seeing friends to start celebrating the end of the year (December gets too busy to do these things with everyone). And inevitably my thoughts are turning to last New Year, and a conversation I had after midnight with two close friends.

One friend hadnt seen my wife for a while at that point, and had been visibly shocked at her physical appearance, and her health. She was really upset by the sight, which shook me and my other friend. We had a long chat over a few bottles of wine post midnight, where I filled her in a little on the previous few months. We also discussed the future.

My wife had gone to bed early, got up for midnight, and then gone back to bed. I remember finding the evening really tough, as our friends in couples looked really happy, while I was worried and unable to enjoy myself. It was the first New Year with that group of friends where my wife had not been able to last the whole night. She hadnt been able to join the meal, as her eating was also a struggle.

It felt really unfair. She wasnt able to partake of what should have been a fun evening. I felt we were disassociated from the festivities. And the inevitable discussions about the forthcoming year were hard.

My comments over that bottle of wine (or two) were that I didnt see my wife lasting until Christmas. Over the previous few months she had deteriorated and her strength wasnt good. She was struggling and not eating very well. Our friend burst into tears, saying she couldnt believe it, but honestly at that time, I couldnt see how my wife was strong enough to last another 12 months.

Yes, she has been through a great deal of tough challenges, and overcome them, but I had a feeling that her strength was running out, and the cancer becoming too powerful.

I write this now from a different viewpoint. Despite another hard year, she will be here for Christmas. I am quite frankly amazed as always at her resolve. She hasnt had any further treatment, thank goodness, but has managed to keep the disease at bay. We will be able to celebrate with her, and she will be able to celebrate with our newly born nephew.

The disease has spread throughout this year, and her strength is less than before, weight loss obvious now. But we have always wanted our wife and mother to be with us, so what more could we hope for. We are trying to embrace a more holistic life, my wife doing alot of meditation and healing the mind which have had some benefit. Mind over matter is an old phrase, but there may be some truth in it.

I have written before (https://mywifehascancer.blog/archives/802) about how our relationship has taken a hit, and that is still true. My bitterness at the loss of my marriage is still here. However, we and especially me have worked harder recently to try and improve things. It isnt helped when my wife is such a light sleeper and I snore, or when she gets tired and cant hear or forgets things, but I love her regardless, it is the disease I dont want here. We are doing more things together, attempting to bring ourselves back together.

It is very strange, as in this world you never know when a serious issue will suddenly come around the corner. We have had years where we were planning a holiday, only to have my wife in a coma the day before we were due to fly. And maybe that was where my thoughts last new year came from, a place of bitterness and anger, leading me to a pessimistic mind set.

I do have a depressive tendency, and the challenges of the last few years have made this worse. I dont look on the bright side, I see the worst outcome. It can help with planning in work to see the downside, but makes it hard at home when I always point out the potential risks. I have again written about this in the past, and it is a constant battle, daily causing me to have mood swings up and down, close to anxiety attacks and an inability to focus, feeling overwhelmed.

A few things help, excercise and friends being the main ones. I have resolved to lose the extra weight (https://mywifehascancer.blog/archives/760), which is taking a long time, and have met more this year with my best man from our wedding. We have rediscovered our friendship, which has been a great help for me (and him, he has his own problems). We have been out for drinks, and also to two amazing concerts (music being another thing that helps me). Earlier this year we saw Guns n Roses at Hyde Park in London, which was amazing, and then this last week we saw Queens of the Stone Age at the O2, one of my favourite bands, and another unbelievable live act. And it is them I will finish off with, a tune that maybe has a title describing the life of a cancer hit household too much.

Thanks

Remember, remember, the fifth of November

Every year we go to a Nov 5th firework display as a family. (For non Brits this commemorates the attempt by Guy Fawkes to blow up the Houses of Parliament. Kind of like remembering 6th Jan in the US by having a party). The only one we have missed was when my wife was in hospital in 2018, but even then we watched from the windows of the hospital. We alternate between one run by the scouts, and one run by the cricket club next to my daughters school.

Both are fun. A massive bonfire, lots of fireworks, mulled wine, BBQ (in the British sense – burgers and hotdogs). But this time of year is cold, and typically wet. Just recently we have had storm Ciaran, and so the ground was very wet underfoot, let alone plenty of flooded roads. And one of the roads flooded led to the cricket club where we had chosen to go.

And so that meant my wife decided she couldnt come along. She struggles with getting warm once she gets too cold, but has also developed a swollen ankle after standing alot. There could be no guarantee of her finding a seat at the fireworks, and the damp in the air would cause her to get sick.

But she was adamant that we should go (partly because we had bought tickets, and she didnt want to waste the money). I felt bad, but we also have to think about the children, and try to make their lives as normal as possible. The balance is tough. In the end we facetimed my wife, so she could see the fireworks, if not smell the smoke. It felt like the best option in the end.

I spoke in my last blog (https://mywifehascancer.blog/archives/802) about our failing relationship, and this was yet another example of her disease getting in the way of our lives. It is so frustrating, as she has been feeling better, but not well enough to partake in this. The fact we have to compromise over every aspect of our lives is really shitty, and feels never ending. However, I feel we managed to at least involve her here.

The ankle thing is worrying me a bit. She had the blood clot a couple of months ago, and has been on tablets, but the swelling and some pain in her wrists suggests that something is still not right with her circulation. It could be because she has started being more active recently, but we have to be careful not to be too complacent. If we have learnt anything in the last few years, it is that something innocuous isnt always as it first seems, and you should always get to a doctor to get it checked out.

I also did my weekly task of updating the tablet box, and printing a new checklist. We have some new supplements added to the list, and I brought in new boxes from the store in the garage. There is a bag in there, full of her prescriptions for the next few weeks. We then keep a small box with enough for the week in the kitchen high cupboard. There are 8 to be taken each day right now, a number that increases when she is on chemo. The checklist is vital for us to keep on top, otherwise with her mind sometimes running out of juice, she would forget some. I dont think it would have a big impact, but to be honest wouldnt want to risk anything at this stage.

So the weekend ended on a fairly typical note, completing jobs to prepare for the week ahead. My wife has a call with her specialist this week, and we are hoping for good news as always. It is also my birthday, so we are heading out to celebrate one evening. Hopefully the call can lead to a double celebration.

Thanks

How to fix a relationship?

A quick conversation with my wife brought forward some concerns today. She told me she is really lonely, and basically said I dont do anything with her. She said I dont talk to her, dont sit with her and so on.Mentally she says she is feeling better and wants to make the most of that, even if her body wont let her.

She wants us to try and get our relationship back on track. And I agreed, and am trying to think of ways to do that. But i am realising that I dont think it is possible. I’m not sure we have anything in common any more, apart from our children and living together. I want to be out doing things, but we cant do that together.

I struggle with the TV being on all the time, so am probably spending more time in other rooms not in front of the latest inane game show. I get frustrated with her hearing loss, and the requests to repeat what I said. I get frustrated with the feeling that whenever I say I am down, or under the weather, she will always trump it. Bad day at work – the response will be ‘at least you can go to work’. Frustrated on the roads – ‘at least you can drive, imagine what it is like not to be able to’. And i understand all of these things, which makes my anxiety and depression worse.

At times, all I want is some human interaction – a hug, someone to hold me when I feel down. But I worry that trying that with my wife will hurt her. The physical attraction has gone with the destruction of her body. The chances of any kind of sexual relationship has long gone.

And so I am now wondering what we can find to try and fix our relationship. How do we have quality time together when we cant go out on a date, or have a romantic meal, or even go for a walk? I just dont know.

We are now drifting along, barely talking, just existing in the same house. At times, even the very fact I am sleeping in the bed next to her means that she is disturbed, so I sleep in a separate room on occasion. How can a relationship come back from everything we have been through? What tricks can we do to salvage our love?

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What do you do when your world starts falling down?

We had another eventful few weeks. My wife is still recovering following her DVT and serious weight loss, and spends alot of time lying on the sofa in the lounge. Her food intake is really down, mainly through feeling sick after eating. This means alot of weight loss still, and she has very skinny arms and legs with an extremely swollen stomach are, where the cancer is.

She looks very frail and fragile, with her gaunt face, even when in clothes. Even after a short walk she has to pause, struggling for breath and trying to focus to ensure she isnt sick.

Then to top it off, our lounge ceiling then collapsed. I came downstairs at about 6 am to find water dripping from the ceiling onto the sofa. Luckily my friendly plumber called and by 7 the leak had been stopped, and a hole in the ceiling was letting nearly a bucket full of water out. This wasnt enough though.

At 8 that evening, I heard a cry from downstairs, and came down to this mess.

Thankfully (or not, depending on your viewpoint) it had just missed my mother-in-law, and similarly my wife had been safe. But there was broken plaster everywhere, damp all over the carpet, and it took an age to clean up.

A leaking toilet in let pipe must have been dripping for a long time. You could see where water had been soaked up by chipboard before heading onto the plaster board, and every bit of it was wet through. We borrowed some heaters and made it secure, and then waited for it to dry out.

It took a while, and the damp smell was horrendous. Thankfully the insurance approved the work, and we have been able to get a builder in to do the work. But you could see how far the water had spread across the ceiling as it dried out, yellow patches blooming all over. It was a very stressful experience.

This has thus restricted what my wife can do. She cant be in the lounge as the hole made it cold and slightly damp, and all our possessions from the lounge were in the other room downstairs, so she was stuck in the bedroom. At least the rest of us could go to school or work and get out. You realise how tough it can be when disabled and not able to easily go out by yourself.

Mentally it has been tough for us all. I feel at times that the world is against us, everything that can go wrong seems to go wrong. It is probably not true, but sometimes you would like to have a run of good news.

Coupled with a bad few weeks in work, my mental health has suffered. Motivation has gone, concentration has gone. It is like the stable foundation of home has been snatched away, and I am living on quicksand, never able to feel safe. My brain is fried – the damage on top of the last few years has properly destroyed something. I still paint a face on and try to make the best of the day, when really what I want is to be back in a time when my life seemed secure, when we had a future to look forward to. I crave that stability, and that hope.

I am sure that things maybe are not as bleak as I feel. The black dog on my shoulder says otherwise, and he is the one I listen to. It is hard to get out of the depressive mindset, but I am trying. I have a spin bike to try and get fit (following this post https://mywifehascancer.blog/archives/760) but need to keep up the motivation to do it. It is very easy to decide it is too cold.

I have also finally taken up guitar lessons, and am working my way through the easiest Beatles tunes. It is slow progress, but again I find it a good way to turn off my mind, relax and float downstream. Again the main problem is my motivation, and I am having to really push myself to not sit flicking through my phone rather than doing something productive.

Finally on a Beatles note, they have released a single based on an old John Lennon track. I really enjoyed it, and hope you will too

Thanks

We got our picture in the Daily Mail

Its been a strange couple of weeks. My wife has been recovering from her DVT, and it has taken alot out of her. She has lost quite a bit of weight, and is really wasting away. Muscle tone and strength are non longer there.

Her limbs look like skin hanging off bone, and you can see the bones sticking out of her back. It hurts her to sit down, there is nothing there, no padding. I worry she wont have the strength to fight anything that may come along. We are trying to feed her up, however she is still struggling with food, and eats like a small bird. A meal may work one day, and then make her ill the next. So hard to second guess and keep her healthy.

My mother in law wants us to talk to someone, and my wife has approached a nutritionist, but wont talk to the doctor or a hospice. I cant go behind her back, so am a bit stuck. We know what she needs, but when the food wont stay down, it is really hard for her to get the strength back.

On top of that, we then had the big news. An article in the Daily Mail, a national UK paper.

https://www.dailymail.co.uk/femail/article-12524989/Your-makeup-killing-like-killing-City-high-flyer-mother-two-Hannah-diagnosed-incurable-cancer-blames-cosmetics-enjoyed-childhood.html

We had known of a campaign in the national press regarding the asbestos angle, and when our lawyer approached us we agreed that it was right for my wife to do it. One of our aims has been to raise awareness of her disease. Whilst it is probably too late for her, it would be amazing to help save someone else.

So she had a long interview, and then the photo was taken in a session last week. The article is pretty much spot on, maybe one or two facts wrong, but not enough to change it. The headline is the usual tabloid sensationalist rubbish however.

We have had a few people comment that they never realised, which is frustrating that despite our best efforts people still dont know what caused her cancer. Even now we see and hear of people using talcum powder, with no knowledge of the issues we have suffered.

How am I feeling about it all? I struggle to keep on top of things, but think the article is useful for getting the story out. People need awareness, and if we can help one person, then even if it is too late for my wife, that is good.

The last few weeks with the DVT has been really tough, watching her waste away. Her muscle loss means that going out is hard, and she gets really tired. Our son caught Covid as well, so that was another stress. Work as well has been hard, but as ever I paint a face on and get on with things. I have lost interest in alot of my hobbies, but am forcing myself to do things, try and kick start the brain.

These days are like a day to day existence, struggling through to the evening, and then hoping nothing bad happens at night. I react to things, filling the role of both parents, whilst also being a carer for my wife. She keeps planning things for the future, but in my head I know that it is unlikely she can make them unless we see a major upturn in her health. Scans show small amounts of growth of tumours, but the bigger worry has to be loss of weight and muscle tone.

Some times I check on her, and she is lying on her back, mouth open, barely moving, and the thinness in her face can make her look like she has passed. I have to check her breathing to be sure. That is no way to be looking in on your wife, to ensure that she hasnt stopped breathing in the time you have been out of the room. I feel that is a very real possibility right now though.

On a good note, our daughter did the Cancer Research Shine night walk, and raised over £1000 for the charity, something to be really proud of.

Thanks

A not so happy anniversary, and the impact of stress

It has felt like a strange weekend here. It is a bank holiday in the UK, which means we have the Monday off work. The kids are still on holiday, so I took them to play tennis on Saturday while the weather was fine. It is also our 2oth wedding anniversary (29th Aug), so naturally there have been lots of memories flooding my brain.

My wife has had a small victory today, in that she managed to get out of bed and come downstairs. She has lost a hell of alot of body weight, and has very little muscle tone left. Her body is like skin hanging from bones, paper thin. We try to fatten her up, but I fear it is a losing race for us.

She also now has some aches and pains. Maybe more pains than aches. Her side hurts by the kidneys, probably a hip joint that sometimes goes out, an old complaint that predates cancer. More concerning is her leg pain, and we are watching to ensure it isnt a blood clot. With the lack of muscle, I would imagine that everything is struggling to work as normal. She had been able to get out in the car over the weekend, but it was a real battle for her. Slow and painful.

I really dont know what to do on a multitude of fronts. Firstly and foremost is the need to get her checked out, and if she get much worse we will have to do that. We have delayed wrongly in the past, and paid the price for that delay with a coma and eventually a stroke. But I fear getting her to a hospital, as that feels like another length of time before she could come home, and we dont want to lose her. I want to end this phase of our lives, but dont want to not have her with us. Unfortunately, that is not an option though.

I dont know where to turn to right now, because A&E can end up being stressful and slow, while the local doctors can be hard to get an appointment. Dialling 111 for advice will just result being told to go to A&E. Which means her cancer hospital, despite it not having an emergency department, could be the right place.

Second on my worries is the thought of getting some extra help with her. I wonder at what stage you should involve a hospice, and think we are too early for that, but it has to be considered. She refuses point blank to have any contact or interaction with the hospice we have been point in contact with, so that is a conversation we wont be having any time soon. I cant continue to look after her nearly full time, and hold down a job, and do everything else.

I feel I have all of the world on my shoulders right now. Trying to look after my wife and keeping her comfortable, whilst also trying to determine when to involve other people. Trying to keep our small family going, which is the third of my worries. I try to make the lives of my children as normal as possible, and help them live a good life, which does mean me being the one to do things with them most of the time. My wife was able to do so a bit over the summer, but with her bodily deterioration she cannot do much now, not without getting some strength back.

Sometimes there is so much hanging on me, that I become unable to act, and physcially and mentally stop. Faced with an overwhelming list to do, I wont do any of it, then feel guilty for not doing it when the paralysis ends, heading further down a depression cycle. I will get angry and frustrated with myself, and nervous about what I havent done. My stomach will become a ball of nervous energy, making me feel sick, and before you know it, I fall to inactivity again. Headaches hang around longer than previously, and I am constantly tired, despite however much sleep I may get.

I am becoming less able to enjoy things now. My attention span has been shot to pieces (probably a symptom of smart phones anyway), but my previous joys of listening to music and reading novels are not being done. I cant think of which album to listen to, and cant focus for long on a book. I desperately need to exercise consistently, but lack the motivation to do so.

Losing these elements of who I am has really come into focus on our anniversary. The man I was 20 years ago has gone, probably to the same place as the wife I have lost. The man I am now is a husk of who that was, married to someone who will likely leave us soon as well. The married relationship has gone, and I cant ever see how it will be back. My wifes body has been ravaged and changed beyond recognition, and whilst we still love each other, physical attraction has gone.

I have said before that cancer doesnt just destroy the person who has it, but it has a blast zone, like the front row at a Seaworld show. Cancer has managed to have the above impact on me, it has changed my happy go lucky children, has changed other close relatives. We care for my wife, and see the pain she goes through, and the stress and worry caused by that disease eat us up inside as well.

I’m not sure where we are headed this week. Friday we are travelling to meet relatives, but as this rate my wife struggles to go 5 minutes in the car, let alone over 2 hours. Firstly though we need to get her to a specialist and fix her back and leg. Hopefully this will be straight forward. My mind though knows it could also be the start of a hospital stay.

As an aside, the first dance at our wedding 20 years ago, was done to the following song. Seems apt to end here.

Thanks

My life is falling to pieces

Sometimes the anticipatory grief can be so strong, that I feel my life is falling to pieces and there is nothing I can do about it. I feel there is no element of control and I feel so helpless.

I have an aching hole in my chest, a desperation that wont leave. I cant concentrate or find motivation in work. I find I have lost interest in things I used to enjoy, and struggle to find ways to be happy. A couple of drinks can help, but then the effect will wear off. The same with exercise, the euphoric high quickly passes.

A further frustration is that I am fully aware that I need to find motivation in work, re-engage with hobbies, phone or meet friends, but find myself unable to do so. And that makes it worse. I get caught in a vicious circle.

On a regular basis this frustration can lead to tears, either in the car or toilets at work. I cry at the helplessness of our situation, the worry of losing my wife or the feeling of waste. Waste over the last seven years of my wifes life, and the waste of my life.

We are coming up to our 20th Wedding Anniversary, and this time two decades ago I would never have imagined this would be where we are. It seems so unfair, and pointless that this disease has struck us like this. Our hopes and dreams of that day, celebrating with friends and family have long gone, replaced with the hope of my surviving just a few months more. Where is the justice in that?

The next sentence may seem selfish, but I feel that my life is in limbo. I love my wife (I wouldnt have asked her to marry me if not), but in many ways I am waiting for the end of the situation we are in to be able to properly live my life. I am torn between wanting to move on with my future, and the greater need to have my wife back as she was.

I dont want to be watching her slowly decline and become more sick, losing weight and being ill. I dont want to have to consider taking her to hospital at the smallest stomach pain because it may be something more serious than indigestion. I want to to be free of our cancer nightmare, be released from the chains holding us down.

That is why I feel I am being torn apart. The different thoughts going through my head every minute of single day, of not wanting to be in this life, wanting to help my wife, worrying about my children, wondering what the future days will bring. It is impossible to process all of these thoughts, and at times my mind feels that it will explode.

Thanks

Why do I find life so exhausting as a carer?

I have recently had a couple of weeks off from work as the school holidays have started. This has meant being able to try and do some things as a family.

You would imagine as this was a summer break, I would find it relaxing, and in the most part it was. But I started to notice how tough each day was. I am usually in the office, so dont see my wife all day, but when you are constantly with her, there is so much that needs attention.

Watching to make sure she doesnt bang her head on the car door, protecting her on a pavement when other people are around. Being aware of when she is feeling sick, and unable to eat food. Making sure she has eaten today.

Even the mental strain of watching her slumped on the sofa or a chair, wishing we could do something else other than help her hold back nausea. The mental gymnastics of trying to keep the children active, while trying not to overtire her. Making memories while those memories may not be the best ones.

We have nearly hit 20 years of marriage, and that saddens me. Looking back the change in those years was at first great, but now feels ruined. Achievements and landmarks have a taint to them, cancer looming over everything. You build up everything, only for it to be snatched away cruelly. And not only taken away, but you are made to watch it all happen.

Sometimes I do wish for the end of this life. Another mentally tiring thought. I watch with envy happy families, and then see my skinny sick wife, and I just want this all to end. Where is the fun in my wife dragging herself somewhere, to painfully sit and watch as others partake in activities she cannot do, only to go home and straight to bed.

I feel we are in limbo, neither existing in our old lives, but also unable to move to something new. I have a feeling we may be entering those end times however. Mentally I have almost made my peace with where we are headed. I am not at peace with how we will cope. I have maybe just resigned myself to the inevitable. Watching how she has changed has done that to me. I said at the start of the year that I didnt see her surviving until Christmas based on how she was then, and she has only gotten worse physically. She has always defied expectations though, so hopefully I am wrong.

I also feel my wife has resigned herself to it. I havent been on the call with her specialist recently, so only know what she has said through the lense of my wifes notes. I can see how she is physically, and have also seen how she acting. I have seen recently that she has tried to pack many things in, as though she wants to experience certain things one more time. Trips out we have talked about for a long time have suddenly happened. Watching her favourite stage show again, where I saw tears in her eyes at the end. It feels alot like she is trying to do these things now before she cannot do them at all.

So are we entering the end? Maybe, and if so I need to find a way to get my strength up and try to get some rest, as I see only tough times ahead if that is the case. If I am mentally exhausted now, I cannot imagine what it will be like in the coming months.

Thanks