The My Turn Post

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

A long overdue post on the year anniversary of my wife’s tumour being identified.

I can’t believe it’s been a year since this all started, and seven months since I last updated this thread.

I re-read my last post. A lot of things have changed since then. I guess we have settled into some sort of routine.

My wife is now being cared for by her parents at their house. It has enabled me to go back to work part time.

My wife has had no further treatment. She has had a post treatment baseline scan and a subsequent scan. What is left of the tumour hasn’t grown so far. We have another follow up scan mid September.

My wife lost a lot of hair due to the Radiotherapy. She got her hair cut short in the end – she felt a lot better about herself after this.

Myself and my son seem to be rolling along quite well. He has had to grow up and become independent sooner than I would have liked. He is still wrestling with his emotions and feelings about the whole situation.

I guess I’ve had time to reflect. The word rollercoaster is cliched but I can’t think of a better word for the last year. The sadness, the hope, the disappointment and the reality of the situation.

I read a lot about that young girl Laura Nuttall who had a bucket list of things to do. She had a similar tumour to my wife. We didn’t get that opportunity to do the bucket list my wife is just too ill and disabled now. At Christmas we tried to force things and make memories and it went wrong.

Now we just take each day as it comes. Occasionally we make a nice memory. Go out for a short walk. Have some lunch or an evening meal together. My wife is sometimes well enough to come and watch my son play cricket.

I had a generous offer from a friend to stay with them in Portugal. Myself and my son spent a week on the Algarve doing those hot sunny holiday things. It was just what we needed. He’s never done that sort of beach holiday before and really enjoyed it. They have kids similar age to my son and they all got along and had a good time.

I live in quite a rural area. I’ve decided I need to move into our nearest town. I am spending too much time in the car running myself and my son about. He can get a bit more independence, I can spend less time in the car and we will be closer to my wife and parents in law.

So my next project is get the house in a state it can be marketed…

So my next project is get the house in a state it can be marketed…

Gosh, on top of everything else that must be quite a challenge! But you are clearly focusing on doing positive things, which is really impressive and of course hugely important.

Now we just take each day as it comes.

And that is of course the key.

Good luck and thanks for the update 🙏

Thanks for the update, I ve had a similar experience but as everyone is unique I can only take my hat off to you! You’re right about the small moments. People can’t and won’t understand so it can be very lonely. Use those people close to you, be kind to yourself and accept this different path.
i chat for a living so have very few useful skills but I can wallpaper if you need a hand with the house!

The news we all knew would arrive one day, but never really able to prepare for came this week.

The most recent scan has shown that my wife’s tumour has started to grow again, and a new area in a different part of the brain has appeared. We were expecting this might be the case. Her memory and speech had deteriorated in recent weeks.

Her case was reviewed, and no further treatment to slow the tumour’s growth is to be offered. Her care will now be transferred from the hospital neurological teams to our local palliative care provider.

We were advised that things now will most likely advance ‘rapidly’. The outlook is of the order of ‘weeks / months’.

Focus now is to spend as much time with her as possible.

Edit: PS put the move house plan on hold until…

So sorry to hear this fgk 

fgk, I’m desperately sorry to read your post.

My thoughts are with you all right now and I’d give you a big old man hug if I could.

That’s sad news @fgk.

All the best for the immediate future and like @Poopscoop there’s a cyber man hug owed from me too.

FGK, my heart goes out to you. Be strong. mf.

Im so sad to hear that.  As you probably remember i have both professional and personal experience of this.

Please just ask if i can help in any way.  You have a pm

Two lessons for me from my recent experience that helped be greatly 

1 tell everyone everything  It makes it much easier for everyone 

Ask you friends and family for help when you need it.   Folk want to help.  Dont be shy about asking

fgk, so sorry for you all.

I’m so sorry, @fgk

Sorry to read this. 

Focus now is to spend as much time with her as possible.

Indeed. Focus too on how you have done everything that you could possibly do for her, something which is very important to remember when you are grieving. My heart goes out to you and your son, no doubt you will be able to support each other.

So sorry to read this.

Massive respect to you for how you’ve coped with the past year or so, and I’m really sorry that things have reached this stage. Another big man hug from a stranger.

Incredibly sorry to read all of this, you have gone through so much and have been so strong. Make the most of the remaining good times and keep focusing on your son. More big man hugs too.

@fgk. So sorry to hear what your wife is going though and what your son and you are dealing with. I hope you both get to spend time with her – right until the end. I imagine it is a lonely experience for your wife, son, her parents and you – but as said above, people want to help.

Take care.

Big virtual hugs @fgk,  for you, Mrs and Jr.

So Desperately sorry to read this.

Sending love and Manhug.

Words just never seem enough …….

That’s really sad to read fgk.
All the best. And hold your lad close.

So very sorry to read this.
As others have said, reach out when you are ready.

bunnyhop x

Ffs. Sorry to hear this.

As above words don’t really express my sympathy well enough

So sorry to read this.

Really sad to read your last post. Thoughts with you, your wife and your son at this difficult time.

I can’t believe it is 4 months since I last posted.

Mrs FGK made it to Christmas. Which was important for our son and us all.

About 6 weeks ago she deteriorated very rapidly. Literally in the space of a few days went from being mobile to unable to walk unaided, and her speech became very muddled.

The palliative care team were brilliant, and supplied us with all the equipment and care visits so that she could be cared for at her parents. Her parents also have health issues and one of her relatives came to stay to assist with the care.

As she continued to deteriorate we realised we would probably not be able to cope. There were no spaces in the hospice but were offered a bed in a care home. It was a tough difficult decision but last Friday she moved to the care home.

It’s a nice place and the staff are lovely. We can take the dog to visit.

It feels so brutal just watching her slowly shutdown like this. As things stop working it just feels like one shitty crappy hopeless milestone after another.

I cannot begin to imagine what you are going through emotionally but hopefully Mrs FGK is comfortable and has the added emotional comfort of knowing that those she loves (including your dog!) are close by.

Thanks for the update and my best wishes during this truly challenging time for you and your family. I am sure that the strength and resilience that are obvious from your posts will help you all.

But equally I am sure that you also recognise the importance of freely expressing your feelings.