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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Why do I feel a complete failure as a carer?

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

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

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

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

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

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

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

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

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

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

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


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

Being a carer can be a lonely path

Being a carer can be a lonely path at times. Friends and family don’t always know or realise the full extent of what is going on. Frequently people are shocked by the constant concern and issues faced in my household.

Of course, when a major event happens, like a hospitalisation, then people come around. Otherwise it rightly isn’t the forefront of people lives. After all, we are the main character in our own films right? Other characters dip in and out.

So the jobs that take up a carers time, and the mental aspects of coping with a terminally ill patient, won’t be considered by people. This is the lonely aspect. It can feel like you are ploughing a furrow that no one else is aware of.

I used to really love Friday evenings. I’d leave work, and that was it for the week. Bliss. However now, I leave work and my second job starts. Picking up the pieces at home after my wife has collapsed exhausted at the end of the day. Looking after the children, and ensuring they get to whatever club or commitment they need to at the right time. The stress of worrying over her health that day.

I saw a great picture the other day (below), and it is so right. When people ask us how we are, the default answer can be to say I’m fine. But is that really the case? We should be prepared to ask for help. It may surprise you that most people will be more than willing! It is hard, but the relief when offered some assistance can be rejuvenating.

There is no need to be a martyr as a carer. After the patient, the most important person to look after should be yourself. You will help no one by being burnt out and getting ill. I will admit I don’t always do this. I am a typical man, and will soldier on and try to do everything by myself, when in reality I am just spreading myself so thin that nothing gets done properly. I think that may be a resolution for me this year – to accept help and ask for assistance.

I will also say something about lonely versus alone. As an introvert, being alone can bring me great relief and help me to power up. This isn’t being lonely, but having time on my own. There is a major difference between wanting solitude and having solitude thrust upon you.

Finally the first lines of the following came to mind while writing. Enjoy!

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Why do I hate being carer to a terminal cancer patient?

This morning I woke up, and hated being a carer or caregiver. Sometimes that happens. The strain of looking after someone can be immense.

What exactly do I hate right now? Well let’s see:

1.     The lack of independence my wife has. Everything has to be done together. For myself as an introvert I find this hard, as mentally I need time out. When my wife could drive, she could go to visit her mums on her own, and visit friends at the weekend. Now these things need to be done as a family group.

2.     The ups and downs of her brain health. Some days she is exhausted after doing a few small tasks, and then will wake up following a night’s sleep and download everything in her mind onto me. I understand that is how her brain now works, but for the rest of us it is exhausting. It is famine or feast as far as her brain operates.

3.     The odd aches and pains that we are never sure are something serious that needs immediate attention, or indigestion. Is a back pain from sitting in the car, or the start of an infection in her lung or liver? 

4.     The plan forward. I have written this before, however every time we head to the specialist, the plan appears to be wait and see until something really bad happens. I appreciate she is keen not to have more treatment right now, but my mind needs a plan. We constantly say that the next time we will re-look at everything.

5.     My wife wants to make plans for this year, which I get as she needs to look ahead. But my mind sees the way she is and thinks there can only be one main plan for the year. Struggling to walk very far, and not able to eat doesn’t tie into a fun weekend away.

6.     The lack of normal adult relationship. This really has started to mess with my mind. The lack of intimacy. The constant worry about her. The changes cancer has brought on her physically.

7.     And tied into the future is the feeling I have that we are being held back by cancer. From all the above we can’t move onwards, because this dark shadow is always behind us, waiting. The bogey man sat in her insides, until it decides to mess everything up.

So today, as is often the case, I hate this whole life. I hate being forced to be a caregiver, and really hate cancer.

How do children think about terminal cancer?

Not a great nights sleep last night. My son (11) couldnt get to sleep, and eventually came into our room.

He said he was anxious, and worried. To be honest we all are. The reality of my wifes condition could be seen while we were away this last week. The lack of strength, not being able to eat much and generally feeling crappy. It messes with my head, so goodness knows how his less developed mind processes it all.

While we were away though, one of the family groups has a son a similar age. And he lost his father two years ago. Not to cancer, but to a heart problem. It was very quick. But the two children and his widow have had to cope with that shock, and move on with their lives. They have done it remarkably well.

It is good for my son to have a friend who understands a little of what he is going through. They may not talk about it (they are young teenagers basically), but the shared bond must be there. When the probably inevitable happens with my wife, I really hope this bond will help. I dont know really what he thinks of his mothers diagnosis. I know he is very clingy, and loathe to leave her. But in terms of other thoughts it is hard to tell. Again, they dont talk much at that age, apart from to demand food! I only really know something is wrong when he wakes like last night.

We all need someone to talk to, something I have mentioned before on my twitter (http://twitter.com/@mywifehascance1). It isnt always easy – I am very introverted so cant just reach out to people like some can. So I am happy to see him have a friend like that.

Of course, I dont know if seeing his friend caused the lack of sleep, or whether the end of the holidays hit home. Whatever it was, I am shattered now!

My wife has managed a few more things today. We had to go to pick up her aunt from an hour away, and my wide managed to be in the car the whole time. The only problem with that is the sitting aggravates her stomach. Being almost twisted hurts her, along with the rigidity of being in one place.

She has eaten more today though. Back on normal food, and away from the overly rich festive food. Hopefully that will make things better for her.

How to cope when my spouse has terminal cancer?

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

Why do I hate wasting time hanging around?

I’m getting very frustrated right now. I’m not normally impatient, however I am sick of waiting.

We wait endlessly at the hospital for appointments. Whether it is my wife in the rooms, or me sat in the car as she isnt allowed any one with her. Lots of wasted time for both of us.

We then wait for the results to come back. And will then typically be told that nothing is going to happen this time around, so we wait for another few weeks for the next round. And the same happens.

I understand that things dont always move fast, but I want some progress. For nothing to happen makes us feel that we are almost moving backwards.

I also feel I am waiting for the next phase of my life. We have been stuck in this loop for far too long, and being very selfish, I am stagnating. It is hard to express how frustrating it is. Our lives have been overturned by cancer, and it will not let us go. And it is really hard, because I know there is no cure for my wife, so the only way for things to end is for us to lose her.

The waiting for that thought to become reality eats away at my insides, and turns my brain to mush. It is impossible to reconcile the two ideas of wanting desperately for my wife to be helped to enjoy her life more, and prolong things, while at the same time being fully aware that I have a life following her passing, but dont know when that may be.

So we are waiting. Sat watching other people get on with their lives and progress. Sit watching other couples have a normal married life, while I care for my wife, and make sure she is comfortable. Sit watching my wife and mother of my children waste away in front of my eyes, weight falling off her, and know full well there is nothing I can do about it.

Giving thanks

Its Thanksgiving in the US, and so people are giving thanks for the things they appreciate. We dont celebrate this holiday in the UK, though I joke with American work colleagues that we give thanks for losing them as a colony. Laugh a minute with me! After receiving the latest results yesterday, we should be giving thanks in our house.

They came back to say the tumours havent grown too much. A little still. The liver is the area that is still giving cause for concern, but the plan is for no treatment this side of the new year. So we can be thankful for that right?

So why did I feel so deflated after the news? I should have been happy. But I felt down, depressed. It was because yet again, the plan is to wait and see. Wait for something to happen. We know it is coming, but dont know when. What we do know is that it is coming very slowly. Oh, but it could suddenly move and go really fast. Great. So, I have to be watching for something that is going to happen, but we dont know what will happen exactly, or how soon, or even how quickly it will take hold.

It is impossible to plan, impossible to understand even. How do you take action against a threat that will happen, but you dont know when, how or even what to look out for. In know how the security forces feel when dealing with the threat of terrorism.

That is why I felt deflated. I need, almost crave knowledge. As a caregiver I want to help, I want to care, but feel right now that I am not able to do anything constructive in defeating this disease. I feel no one is. We wait. We plan (I think?).

And if I feel like that, how does my wife feel? She has been repeatedly told that the end is nigh, only to pulled back from the brink numerous times. Nowadays she is told the end may be nigh, may be a long way off, or may come at you fast. And if it does come, boy you need to be aware and tell someone. That must mess with your head, surely? It messes with mine.

So in a way, I am giving thanks, but also not. And like a defending army, we keep our powder dry, and wait to defend our position. (Sorry for the fighting analogy – I dont usually use those for cancer).

Additional worries are the nasty cold that has spread around our house, and hit my wife. It has decided that her chest is a great place to live, and so she is coughing and wheezing. After our previous scare with chest infections and pneumonia when she was hospitalised and eventually had a stroke in 2018, I am watching her like a hawk. I dont want to wait and keep saying it has passed, when in reality it is getting worse.

So that is something else to take away the good news of the results. Just as one threat recedes, another comes in to take it place. The life of a cancer sufferer is never ending, and there is no break, no holiday. It is a reality that she lives with constantly. (And on a note, that is from our experience – I appreciate other people may have different experiences, so dont claim to speak to everyone with a cancer diagnosis).

Hopefully she will have a good nights sleep, and the cold will start to leave tomorrow. A trip to see our daughter in the school play is planned, and would hate her to miss that, for both their sakes.

So to finish, Happy Holidays if you are from the US, and for everyone, enjoy the World Cup. England are on a roll!

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.


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.

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.