mesothelioma - mywifehascancer.blog

How do children cope with a terminally ill parent?

I am constantly amazed at the capacity for resilience we have as human beings. And in particular, two human beings. These being my children.

I have already said how my wife received her diagnosis over 6 years ago, and has had numerous bouts of treatment and surgery. She has been utterly brilliant in coping with that, and pushing herself back to strength and health. I have tried to support her the best I can during that time, feeling impotent at the practical help I can give, but hopefully helping her by doing the things she doesnt need to do so she can concentrate on getting back. But I can feel my levels of strength and resilience failing.

I struggle to get back up again after a blow to our lives. I have written elsewhere how my mental health has suffered terribly, and in this regard my concentration and motivation are shot, especially from a work perspective. I lack the ability to properly prioritise, and this gets me frustrated.

However, through all this horrible process, my children have shown amazing grit and determination.

My daughter is now 17, and has spent her whole life at secondary school with a sick mother. This is a key time in a young girls life, where friendships are made, and the future is starting to be mapped out. A distraction like a sick parent could easily knock this, and set up problems for the future. Yet she has thrived. She has made friends. She has played netball for the school (and for a club outside school). She has achieved ridiculously good grades at GCSE, and won awards for academia in the school. She has started 4 A levels, and so far has very good expected grades. She has performed in numerous school plays, sings in the choir, and has received the DofE silver award.

She has overcome both having a terminally ill parent, and lived through the Covid pandemic, and is still thriving. Her ability to focus and resilience comes from her mother, the determination that she has shown throughout reflecting that of my wife. I dont know how they do it.

My son meanwhile is 11. Being less emotionally mature, he has found it hard. We have had many tears and upset from him, as he tries to comprehend what is going on. I dont know to help him cope with the potential and ultimately reality of losing his mother at such a young age. Yet through this, he has achieved at school. He has been accepted into a very good local school, has acheived great grades at his SATs, and is now getting really good expected grades. He has played hockey for the school, plays football for a local side, and has a wide group of friends. Again, I dont know how he finds the resilience to do this.

Children have an amazing ability to recover. I dont know if this is their immaturity. Maybe they dont fully appreciate the magnitude of our situation, which is very dire, or dont have the ability to appreciate it. Maybe they can compartmentalise things much better than adults. Whatever, it is awe inspiring.

If I need to increase my motivation and strength, I just have to look at what they have achieved during these last 6 years. They are my inspiration, my heroes, and ultimately the reason I keep going.

Doing some research, I have found the following link on developing mental resilience. This is aimed at children, but the suggested methods on building your strength are excellent resources for all ages.

https://www.childrenssociety.org.uk/information/young-people/well-being/resources/mental-resilience#:~:text=Mental%20resilience%20is%20how%20you,to%20get%20through%20tough%20times.

10 tough learnings with a terminally ill spouse

I thought I would put down some things I have learned from our lives so far post diagnosis. Hopefully someone may be able to see and have an understanding of what may come for them. Living with a cancer patient can be tough.

The initial diagnosis is scary. Like, sweat forming on your back, take back those words scary. When my wife was initially diagnosed, we were in a small meeting room at the hospital, and there were many more nurses in the room than previously. I quickly learned why. There is so much to take in, and so many negative thoughts and associations with the C word. You will be confused, you wont know what is going on, and to be honest once they have said cancer, you dont listen any more. Not consciously anyway.
The next few days are a blur. As I said, there are many negative thoughts. I straight away thought it was an immediate death sentence. The information you get given is confusing. We didnt even meet the final consultant until a while after the diagnosis. You have to tell people, and arrange things with work while trying to stay calm. The day after my wifes diagnosis, I was offered a promotion in work by one senior manager, having just gone to tell my boss I would need some time to help my wife. Talk about a sliding doors moment.
Any time line given by the doctors will be a worst case scenario, as is alot of information about side effects. They have to tell you the worst so you dont sue and get pissed off. That way when things turn out better, you are happy. Sort of. We had a 12 month prognosis nearly six years ago, so now feel we have been given extra time. We have also had meetings where we have been told to get things in order, but again still here.
Meetings with the doctors are confusing. You get given so much info that you dont know what is important and what isnt. You need to write down so much (words that have strange spellings a speciality), and determine what tells you something useful. You need to write down what tablets are needed and when, as that information isnt given to you.
Which brings me on to lists. Why dont the hospitals give you a checklist for tablets – we have had to write out so many ourselves, and are never quite sure if it right. But you will need to write out lots of lists. And they change when treatment is ongoing, and if you are lucky and have a few different specialists, no one doctor will. There are loads of checklists you need
The impact of treatment isnt just the chemo side effects. Mental associations play a massive part as well. Food when eaten during the time in the chair can cause sickness, sometimes even the sight of the food stuff can trigger that. Dont wear aftershave or perfume – my wife has mental associations with smells from the routine of going in. We had a set of hospital clothes that had to be washed and hidden away after visiting the hospital. The mental association can be dehabilitating.
And physically the treatment is harsh. My wife lost serious weight, and her arms looked like twigs. Finding food to bulk her up when she was feeling sick was tricky. Doctors recommend protein drinks and so on, but she wasnt having that. Eventually anything we could find out of desperation – pancakes, Angel Delight. It was harder as she is vegetarian.
Mentally treatment and hospital trips can play on you the caregiver. Just the worry while waiting. Not being able to help, apart from drive or collect drinks. I felt useless alot. That was and is a horrible feeling. And the hospitals are horrible places by and large. Not the people working there – they are the most amazing people on the planet. But the structures are grey, and ageing, with rickety chairs and expensive parking and food. One we visited at one time had high windows to the room, and felt like a Victorian jail. It is so depressing, on top of the reason for being there.
Be prepared for every conversation with friends to be about your partners illness. We are defined now by cancer. They are keen to help, but sometimes the help you need is not to mention the illness. Treat you as you were before. Buy me a beer and tell me about the latest record you are obsessed with.
On the other hand, do accept offers of help. I try to keep everything going myself, but offers of lifts, offers of meals, anything like that will be a big relief. I didnt realise for a long time how much pressure was building on me as a caregiver, trying to do everything, and sometimes someone dropping over a ready made home cooked meal would save my day. I have said that I felt useless – well people one step detached feel even more so.

Initial 10 things I have learnt. Today I am concerned about my wife more than ever. She is struggling to eat a great deal, and getting very tired, looking grey and weak. I have mentioned before that she had a tumour on her liver, and I fear this has grown. She isnt telling me everything, and says she is fine, and I am not sure if that is to not admit to me or herself. We have the scan results this week, and hopefully will get some idea of what is going on.

Update 11th Oct and a plea

The vitamin B12 injection does not appear to have had an immediate impact. Maybe I foolishly thought it would alter her straight away. However, she still has pain and still is very tired.

Today was a day when she did walk into the village, and then meet with a friend, so we should be happy for small things like that. She is very frustrated and stressed though. Constant pain must be so debilitating. Even from my small experience I know that having a bad back for a few days can take it out of you, so goodness knows what her days are like.

She has got into meditation and today being a full moon meant that she had to do certain things. Hopefully they will have an effect.

This however was probably taken away by the washing machine giving up. It was on the blink at the weekend, and the part I ordered and fitted didnt do the job this evening. I spent all night with the guts of the machine open, and fitted the drainage pump correctly, but there was a problem elsewhere. The water would go into the machine, but not into the drum, which doesnt help when trying to wash clothes.

And this is where the titular plea comes in. If anyone is feeling generous, and would like to help a terminally ill woman out, please click on the buymeacoffee link which should come up as a cup icon, or try the following:

https://www.buymeacoffee.com/fletcherduU

Any small donation would be gratefully received. I will keep you all informed of how we are getting on.

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.

Results day

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

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

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

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

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

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

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

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

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

Stay safe, and keep on keeping on.

Waiting for the results

After the scan last week, I have been watching my wife more closely. I also made the error of seeing what the symptoms of liver cancer are. I have seen her deteriorating (at least in my view). She doesnt have the same energy, or strength as previously.

She was first diagnosed with peritoneal mesothelioma, but we know that it can spread, and at the last meeting were told that there were tumours on her liver. The distinction was important, on not in.

From looking at the NHS website, liver cancer symptoms can include the following:

– Skin or whites of eyes turn yellow, you may have itchy skin

– Loss of appetite, or losing weight without trying to

– Feeling tired or having no energy

– Feeling generally unwell, or having flu like symptoms

– A lump on the right side of your tummy

Other symptoms can affect your digestion, such as

– Feeling or being sick

– Pain at right side of tummy or right shoulder

– Symptoms of indigestion

– A swollen tummy not related to when you eat

I can be the sort of person who when I read of an illness, feel I have some symptoms (emails from school about headlice will always get me scratching!), but I noticed some of these in her before reading up. It is hard to know for sure, as in her case, any disease on the liver would be a metastasis from elsewhere, not originating there, so the symptoms may be different.

But from that list, she ticks alot of boxes. She is very tired, and will be in bed by just after 8, even when not doing a great deal all day. She will say she has had a busy time, but it is not on the levels she used to do. There is not a lot of walking for long distances right now. A short coffee with a friend will rule her out for the rest of the day. She has a real loss of energy, that is very noticeable.

She also has a loss of appetite, and doesn’t eat as much as before. She still eats a small amount, and even then the type of food can be problematic. She also can’t really be in the same room as the rest of us when eating, as the smell and sight can make her nauseous. . And without using scales I would say a reasonable amount of weight loss has happened recently. I can’t always tell if she is sick or feeling sick, as that can be a default position for her unfortunately.

Her tummy has been swollen for a long time, but I think it is getting bigger. Again it is hard to tell without seeing the scans, but when you live with a person you know generally how they look when they are well, and what their normal size is. And you know when they don’t look well, and when they are losing weight or swelling in areas.

She also has a general look that doesn’t look well. Not jaundiced, but not rosy cheeked. I think most people currently don’t appear well – tis the time of the year – however I feel she is looking a bit worse than normal. A washed out, grey tinge to her, and while we try to get out with her fatigue, we don’t get far.

I realise I sound like a pessimist, and that can be true. Things are pretty rubbish here, she isnt well, money is over tight (quick plug for my buy me a coffee link below if you feel a drink would help me relax), and we are entering the colder part of the year, when lots of illnesses are around. However I am not feeling great about the scan results this week.

Hopefully we wont see a bad result, and wont have a regression of her good health too much. The radiotherapy earlier this year may still be working its magic. I hope so.

Sitting in the hospital car park

It’s that time again. I am sat waiting for the MRI, CT and blood tests to be over. These happen every six weeks or so, sometimes more if the consultant is concerned. The results come next week.

This time is a little different. For a few years my wife wore the same clothes to hospital. They were washed as soon as we got home and then used for nothing else. Last weekend we had a sacrificial fire pit, and burnt them. Hopefully this will remove the bad vibes and a new start. We shall see.

She has been doing ok recently. Not good, not too bad. Just ok. Doing anything throughout the day does mean she will be asleep by 8pm. As I said before the fatigue can be bad.

Everyone who has been through this process will know the endless cycle of appointments. It can be relentless. It does feel a bit like we just keep kicking the can down the road, as the scans are very often not conclusive. In many ways the process is akin to pulling off a plaster slowly. Non stop pain over a longer time.

Would the short sharp shock have been easier? That is an impossible question to answer. I do wonder if the disease is holding us back. We are defined as the family with a terminally ill mother.

This time I can’t guess the outcome. There is more bloating but I don’t know what that means anymore. She presents with levels of disease that in a new patient would ring alarm bells, but with her is stable. She doesn’t want more treatment this year however. Which does mean more waiting then.

I’d like to know for sure, and I’d like to be out of this process. However the exit is only at a greater cost. What would that do to the rest of us? We can’t tell. So we will keep on going. That is all we can do.

My wife has mesothelioma- here I explain what that is

I talk about the cancer my wife has, but havent really spoken about what it is, or what they suspect causes it. I’m not a doctor, but unfortunately I have learned a fair amount over the last few years, and so will attempt to put some of that learning down on paper, and explain what it means.

Cancer itself is a disease where the bodys cells grow uncontrollably, and spread to other parts of the body. These cancerous cells will invade and and destroy the other cells of the body. It can start anywhere in the body (we are made up of trillions of cells), and can spread quickly if not controlled through either a form of treatment or a medical procedure to cut it out. The side effects can be horrendous, including lumps, bleeding, weight loss, coughs amongst others.

There are about 100 different forms of cancer that can affect humans, but as I mentioned before my wifes has mesothelioma. This is a type of cancer associated primarily with exposure to asbestos (over 80% of cases apparently), and will often be seen in the lungs of people who have breathed in the fibres. In this case it will be known as Pleural Mesothelioma. My wife is slightly different in that hers has developed in the peritoneum which is the tissue that lines the abdominal wall and pelvic cavity. Life expectancy of this type of cancer can be around 12 months, so in many ways we can count our blessings that she has managed so long.

Symptoms from my wife were very similar to a stomach disorder, like a gluten allergy. She had stomach aches for a few months, and then a bloated stomach. This was caused by the build up of ascites, a fluid caused by the aggravation that the tumours are bringing. This fluid gathers in the abdomen, and she needed it to be drained off.

Other symptoms included shortness of breath, weight loss and extreme tiredness. These have continued throughout her various treatments, and have gotten much worse over time, especially the fatigue which can lead to her being fully tired very early in the day, and tired to the point of not being able to move.

Treatment can be tough to do. The peritoneal wall becomes covered in these tumours, like cottage cheese I was told. Initially she had chemotherapy, which destroys everything including the healthy cells, but for six rounds did cause her to lose alot of weight, and gain various mental issues in relation to going into hospitals. Even food and smells became associated with the treatment, so much so that we have to be careful what we do around her.

The first course did mean that for her, they were able to use a physical treatment. This was a peritonectomy, which involved cutting her open, and basically scooping out the tumours, and taking out various organs that had been infected, or were in danger. In the main torso of your body this is alot of organs, and includes the spleen (which helps with immunity), the reproductive organs (which brought on an early menopause), and appendix, while being very lucky that they didnt have to take out any of the bowel and leave her with a colostomy bag.

Further treatment has included the immunotherapy that works a little more with the body and then radiotherapy, which blasts targeted radiation. None of these are easy, just degrees of pain.

Mesothelioma is often misdiagnosed, and so a good doctor is needed. And early consultation if any of the symptoms I described are seen is vital. Cancer is a horrible disease, that impacts everyone around the sufferer, and causes untold hurt and pain.

When we first started on this journey (horrible phrase, but I’ll let it ride for now) we struggled to find information. The lung disease was more prevalent in the UK (lots of miners and so one over the years), and the peritoneal less so, and we felt we were learning every time we met a doctor. However, I have now found some great resources for information.

One site I have recently been made aware of is https://www.asbestos.com/mesothelioma/. They are based in Florida (regular readers will know our trips to Florida have had to be stopped due to the disease, so I am very jealous of their location), and the website has some great resource I havent seen before.

Some brilliant information about what the disease actually is (better than my laymans attempt above), and also some invaluable resource on what to expect for treatment, and unfortunately prognosis. This is something I often look for in my down times, trying to understand what we are looking at and for how long, the kind of info doctors can be reticent about handing out.

I would recommend taking a look if you need some info. Look hard enough and you will also see my wife mentioned on a couple of pages.

Thanks

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Cancer and the slow decline

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

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

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

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

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

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

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

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

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

Immunotherapy

So this meant that my wife was back to the Marsden on a regular basis again, once every three weeks to have immunotherapy.

This proved to not be as harsh as the chemo had been – it works by effectively ‘boosting’ your own defence system, and didn’t have as many side effects. It also took less time to do (an hour or so, not 6 hours sitting in the chair), and there were not as many drugs to take in the days before and days after.

And it worked – after three sets of treatment there was a reduction in the tumours, and this progressed through out the year, until September when the last round before a break. It had been so successful that we planned to take a holiday in October.