I’ve no words mate, although I had been thinking of you and your family. Not that that helps you much!

I do know what you mean about services feeling so disjointed. You have to keep on top of it all though; keep on going.

I do hope you are getting some time / headspace for yourself. You definitely need this even if you feel there are a million other things you “should” be doing.

Definitely try and find an outlet for yourself – great that Jnr is getting support, but look after yourself as well.

Huge respect to your employers for standing by you too.

Nothing more useful to add. You are doing an amazing job.

So sorry to hear that the situation has deteriorated in the last few weeks fgk, hopefully when the daily radiotherapy starts next week that will bring some improvement.

With regards to the care not feeling very ‘joined up’ would it be possible to express your concern to her therapist?

It’s good to hear of your continued support from work and also the support your boy is receiving, it must really help to reduce the pressure on you.

Its not whingeing as you put it. Its sharing, your posts are not asking for sympathy they are just a way for you document some of the chaos in your head as your brain try’s to make sense of a senseless situation.
Please keep doing this. This place can be full of **** at times but when people really need an outlet it can also be fantastic.

I understand your disjointed comment. My wife currently having oncology stuff at local hospital and surgery stuff at Nottingham. Getting the 2 teams to just pick up a phone and talk to each other only happened after massive tears, breakdown from my wife.

Don’t know you, but thinking of you

db

I’m afraid if you are seen to be coping you’re pretty much on your own in many cases. My mum (80s) was looking after my dad single-handedly (dementia) until suddenly she wasn’t and he was into a care home. Which was the right answer at the time but the 6 months prior she really could have done with some support.

There just isn’t the staff and money in the system. The squeakiest wheels may get greased a bit though.

Thinking of you mate, it something that dominates our house, my mum has bowel cancer, my younger sister, ovarian cancer and my wife is a consultant therapy radiographer on oncology ward, and i see the toll COVID, staffing levels, stress and fatigue have taken on her over the last few years.

The main thing is your wife clearly has a husband who loves and cares for her very much, and she will always know that..

OK long overdue update. Where to start… My wife completed Radiotherapy yesterday. Just over 6 weeks. Daily sessions weekdays.

She’s found it extremely exhausting, as we were told to expect. She sleeps most of the time. She’s lost a band of hair where they’ve directed the Radiotherapy. The steroids have given her quite a bad moonface which she hates.

My last post I reported that Mrs F had declined. Literally the day the Radiotherapy started the Oncologist specialist called us, and advised us based on how weak Mrs F already was, to start Radiotherapy and not Chemotherapy. The logic was it is more important to complete the full course of Radiotherapy than do radio and chemo and not complete the full course. We took that advice.

Christmas was tough. A big fall out with some of my family Christmas Eve left a big downer on Christmas day. People not understanding the pressure I’ve been under and my change of priorities. I put Jr before Mrs F now. It’s all about stability and routine for him. It felt like a bit of a pressure cooker all Christmas. The weather was shite so difficult to get out and let off steam.

I had a significant birthday in the New Year. No celebration. A quiet beer with a couple who are good friends while Mrs F slept. Then I prepared tea for Jr, Mrs F and myself.

Mrs F is going through a range of emotions. The radiotherapy certainly improved her speech and cognitive ability. Certain things she remembers. Other stuff she doesn’t. She remembers what she used to do for us. Her soul aim is to look after us. Not us look after her. She goes through a range of emotions, frustration, sadness, apologies, wishing she was dead which she has expressed a number of times in front of myself and our son. Some or all of this can be repeated many times daily. Which is wearing for myself and Jr. She is having counselling support herself, but her short term memory is such that she forgets most of what she has been told within a few hours.

I hate people telling me ‘isn’t she doing well’. She can turn it on for other people for short periods of time, but it takes her immense effort and I think she blags a fair bit of it which myself and Jr can see through.

I guess I’m going through a bit of a ‘nobody knows what I’m going through stage’.

As my counsellor said – she’s lost most of her filters.

Jr is going through a range of emotions. He just wants his mummy back, as she was. Why does she have to die. Why us. All that sort of stuff. I’m just trying to spend time with him, hold him, reassure him. Do nice things, eat nice stuff but retain some routine and structure. Mrs F is spending a night or two a week at her parents to give myself and Jr a break. And her a rest. The parents in law are dealing with their own health issues as well.

I returned to the office to discuss a return to work. No pressure from them yet. But I feel I need to repay their support. I think there will be a way for me to return part time somehow. But being quite honest I’m not sure my headspace is right.

Somehow it feels harder than it’s ever been. I think for Mrs F the fact she is going to die, to leave us has only just been retained by her recently. I’ve had 5 months to grieve. Jr is somewhere in the middle.

Next steps – 4 weeks of no treatment. Then a meeting with the Oncologist to discuss if it is worthwhile starting Chemotherapy. So far I’ve been lead to believe the makeup of the tumour may not respond well or at all to Chemotherapy so benefits vs side effects will have to be weighed up.

Hi @fgk,

Thanks for the update. I still can’t imagine how tough this must be for you and Jr but it sounds like you are doing a great job and supporting Jr brilliantly through this. I’m sure life will get better for you at some point but there are going to be some hard times and choices before it does.

Really press the oncologist about the pros and cons of the chemotherapy. I’ve just finished chemo and the side-effects I’ve experienced are awful and will last for several months (possibly permanently damaged). I’m not sure that the benefits of the chemo are always worth it. I guess that you and the oncologist will work it out.

I wish you the best and hope that the three of you get to enjoy some happier times together.

A big fall out with some of my family Christmas Eve left a big downer on Christmas day

It is very sad to hear that but not really unexpected imo, you are under such intense pressure, and ultimately you are just a human being with limitations, not a machine.

And the situation must also put some pressure on your family too even if nowhere near the magnitude it does on you.

Hopefully everyone can understand that on reflection.

I am glad to hear that you are getting a break when your wife is able to spend time with her parents. You must be exhausted in so many ways.

Good luck with the upcoming Oncologist appointments.

Appreciate the update, but more importantly I recognise how utterly crap this is for you.

I wish there was something I could say to help

You seem to be doing all the right things and talking to the right folk and coping well with incredible stress.

My heart goes out to you

Oh, man. It sounds so utterly draining. You are doing well, very well, although I’m sure it doesn’t feel that way much of the time. You’re doing the right thing by your wife and son.

Words fail me fgk, im not sure I could cope at all with what you are going through. I can’t begin to imagine how tough this must be for all of you.

Please keep posting.

Sounds like youre all carrying a massive burden

Can only offer my best wishes