The My Turn Post

Another roller coaster week. I think my last update said my wife was moved from the Neuro ICU to a ward.

Then she was moved from a ward that accepted visitors to one that didn’t (there was COVID on the new ward). No-one notified me. My wife's parents made the 1 hour 15 minute journey to visit her and got turned away.

This was very frustrating for a number or reasons. Not being able to visit I was not getting much information from the medical team on my wife’s progress, nor able to judge for myself. And no one seemed to be able to tell me what the next steps for her treatment were to be.

After a lot of phone calls and emails exploring both NHS and Private options I managed to get hold of the lead Neurosurgeon who was due to be performing my wife’s elective surgery before the emergency procedure was performed. He visited my wife and I had a good phone call with him after, again not much of what he informed me was good news but at least there were some positive outcomes.

On Thursday my wife was moved from the City Hospital Neuro Department to the Oncology Ward in our local hospital. It’s closer to home, there are very few visiting restrictions, the day to day care seems more personal and attentive and will continue to be lead by the city hospital.

My son visited Mrs F, it’s the first time they have seen each other for just under 2 weeks. The ward have offered me support as well.

I have been informed numerous times how aggressive my wife’s tumour is. It is malignant and growing very quickly. Right now it is a race against time to get my wife well enough so that she might be able to cope with treatment to arrest the growth of what is left of the tumour. This will be a course of Radiotherapy and Chemotherapy. One of the ‘benchmarks’ of whether she is fit enough is the physios need to get her mobile and well enough to come home. She’s only managing a few steps with the Physio / OTs assistance. The physios asked me about an 'end game' for my wife. There was some chat about setting up a bed and other assistance downstairs. I must admit this kind of thing is very scary for me - selfishly do I or our family want to be caring for her like this at home.

That said every day I’ve visited there are small improvements in how alert she is, how long she remains awake. Unfortunately, her short-term memory is not very good right now.

I was also informed if she gets well enough for treatment, this type of tumour invariably starts to grow back months after treatment stops. So we are just buying time. All the time we are trying to balance all the positive steps and her apparent improvements with the reality of the situation.

I guess up to now most of my posts I've tried to keep the emotion out of it. That doesn't mean I'm not feeling fear hurt and pain. Every now and again the enormity of the situation overwhelms me. I have those feelings of fear and panic. How will I cope? The feelings pass. I can't give up. For my son if no-one else.

It's half term this week. I'm going to have to juggle visiting, keeping my son entertained. I'll try and use the support of his friend's parents a bit.

There was some chat about setting up a bed and other assistance downstairs. I must admit this kind of thing is very scary for me – selfishly do I or our family want to be caring for her like this at home.

A very difficult one

I did this for Julie and did her care. Its my professional world and its still given me trauma. However it was also very rewarding and no doubt at all for Julie it was best. You need to think about this one very carefully and make the right decision for the right reasons. What is her view? Whats your best guess as to what she would want?

For Julie and I it was also positive in that I could do her care and make it the best that I could which helped me. I could also make her wish to go home to die happen.

You will get support from social services and community NHS

There is no one right answer on this only - only whats right for your family. Again PM if you want.

Can offer nothing but virtual hugs and the reassurance that someone here is listening to you.

I have no idea how anyone would cope with something like this, you are doing incredibly well, but use whatever support is available and don't be too proud to cry when you need to.

I also want to say that home care can be fairly disastrous. You are right to think long and hard about it.

Amazing that your holding together so well tbh.
Thoughts with you all

Every now and again the enormity of the situation overwhelms me. I have those feelings of fear and panic. How will I cope?

I have no personal experience but it is not difficult to understand how you must at times feel totally overwhelmed with enormity of the situation.

I can see from your updates that are clearly holding things together fgk. You appear to be coping remarkably well, although you might not always feel that you are.

No doubt that you have access to professional support and I really hope that at those times when fear and panic threaten you feel able to approach them.

You are a credit to your wife, your son, and yourself fgk. You are doing all that can be done. Take care.

A long overdue post. Reading my previous post things have moved on so much. Positively.

My wife's condition improved noticeably every day. The love and care she received at the Oncology Ward in our local hospital was amazing. She received treatment from the therapists daily. I got feedback daily. I also got some very lovely support from the hospital Palliative Care Team. It was about me and my son. And continues.

My son has seen his mum every day. Last weekend she was well enough that we put her in a wheelchair. Wheeled her down to the coffee shop in the hospital. Then outside to meet a lot of our family and our dog. Then the nurses let us smuggle wuff into the ward for a little while.

On Wednesday my wife got transferred to another Hospital. Not so local (about 35 mins drive). It's what I'd consider a community hospital that has a rehab ward. This was on the recommendation of the therapy team at her current (at the time) hospital.

I met the Therapists the day she arrived. A specialised Neuro-Physiotherapist, plus Occupational, and Speech & Language Therapists. I had this overwhelming feeling she was in the right place.

Mrs F improves daily. We had a video consultancy with an Oncologist on Thursday from her rehab hospital to our closest local hospital with a Neuro Oncology Department. I am taking her to meet the Oncologist this Thursday at this Hospital. I get the impression that if a patient can walk in they will consider them well enough to embark on treatment. Which will involve 6 weeks of daily Radiotherapy plus an Oral Chemotherapy. Then a further 6 months of Chemotherapy if my wife, the patient, is well enough and up for it.

What I haven't pointed out is all these choices are patient led. At all stages my wife is asked what she would wants to do. I am asked how I feel about things. But the decisions are my wife's, and the medical team's.

Her short term memory isn't great. She struggles to remember what her initial diagnosis was. She's aware she isn't right and wants to get better. And ready to do whatever that takes. I remind her daily where she is. Why she is there. She accepts that. She just wants to get home. She has had many visitors. Friends, family. Our son every day. I believe it all helps as well as the amazing support she has received from all of the Drs, Nurses, Therapists and Carers.

I'm beginning to let myself believe we will get her home sooner rather than later. I don't believe she will need formal *care* per se. Her short term is bad enough that I think, for a while at least, she will need someone accompanying her most of the time. But she can walk, dress herself and mobility improves day by day.

I had a meeting with my work this week. I had kept them informed weekly. I felt I needed to see them face to face to explain my situation. I was asked if there anything they could do for me. I responded by saying to continue to support me as they had done up to this point. I was looked into the eye and told 'I don't even have to ask'. Take as long as I need.

This has been the best few days / week since this whole shit show started 8 weeks ago now. It's been the most positive week so far. I'm not losing sight of the reality of this situation, which is, if my wife is well enough to receive treatment - the growth of the tumour will be 'arrested' until the treatment stops. Typically the tumour will start growing again after a few months of treatment stopping.

After the original diagnosis we just wanted to buy a bit of time. It seems we *might* just be allowed that.

We'll all take a bit more time if we are allowed.

I'm not sure I can really relate what I felt whilst reading that. I'll just say I'm really glad to hear that things are going as good as you could have hoped for at the moment and long may it continue my friend.

Pleased to hear there is progress and that there is an improved chance of your wife coming home. Here's hoping your next few posts show continued positive news. Stay strong!

Thanks for the update fgk, that is some really fantastic news. So glad to hear such positive stuff like "she can walk, dress herself and mobility improves day by day". And also the level of care and support your wife and yourself have been receiving. I am stunned to realise that it's only been 8 weeks since you first posted, so much has happened, emotional rollercoaster doesn't seem sufficient to discribe what you must have gone through!

Delighted to read your update, thank you.

I'm so glad that things have been better, and that you and your son have been able to spend some good time with your wife/his mum. That matters so much. I hope you all get a lot more of that - as much as possible.

I saw the update and feared the worst!

I'm so glad your work are being really supportive, you are obviously a realist on the situation but I can see your taking to good parts and making the most of it.

A massive amount of love to your family from me.

Hi fgk,
I've just stumbled across this thread. So sorry to hear what your family is going through. I can't imagine how tough this is for you, but it sounds like you are a hell of a strong person and you are getting through this with great dignity.
Keep talking and make use of places like Maggie's. Ask for help too when you need it.

All the best

Hi fgk,
Firstly sending all the best wishes I can to you and the rest of the family.
Mrs MF was diagnosed with breast cancer ( the worst kind!!) in Feb. It's been a shift few months, but things are looking up after chemo and surgery.
Our oncologist has been superb, and i just can't fault the amazing NHS.
All I'll say is try to stay positive, even when it's crap. Try to look after your own mental and physical health (something I've not really done)
If you need to talk or let off steam please message me. I'm more than happy to pass my mobile if you need a chat X Steve.

Another update after some significant changes.

As I said above Mrs FGK was moved from our most local hospital to another hospital that had some specific rehab facilities and access to a neuro-physiotherapist. Although a little further away to visit it was a great facility and she made great progress. So much so - last week she was well enough to travel an hour with me from the rehab ward to the hospital where the Oncology team are based. She met the Oncology Dr and Nurse Specialist was offered treatment for what is left of her tumour - 'to arrest the growth' for a little while.

On Friday she came back to our house with the Occupational and Speech / Language therapists. She was assessed and is now discharged and at home!

Short term memory isn't great. Her speech is still muddled but she can look after herself with our assistance. We have continued assistance from Therapists at home and a little extra assistance from a 'Reable' team as well around meal times.

That said we had a reminder that this rollercoaster is a long way from over. Her headaches have returned, she is needing to sleep more and speech is getting a little more muddled. Trying to stay positive I tell myself this is due to the change in environment and circumstance.

Her steroid dose has been increased to address the headaches. Treatment is a little way off from commencing because some pre-treatment scans and a mask have to be made for her to ensure the radiotherapy is directed accurately. I'm trying to remain as positive as possible but am reminded getting to the treatment stage isn't a done deal quite yet.

It's taking a little time for both myself and FGK Jr to adjust to having Mrs FGK around again after 5 weeks on our own and she does need a lot of support and repeats herself a lot. Jr senses she doesn't feel very well some of the time and is worried. But not wanting to talk about it. He still hasn't asked if his mother might die from the illness. It is something we still need to approach with him.

I reached out to a local charity providing pre / post bereavement support for youngsters. They are happy to support FGK Jr, and his school well-being team made a referral.

Very good news to hear your wife is home with you again. It obviously offers some challenges but great news none the less.

Equally good to hear Jr will be receiving some support. I've no idea how you begin to discuss such things with him, very difficult and my thought are with you all.

Time for an update. Mrs F has been home nearly 4 weeks now. I'll be honest it's tough. I've turned into a full time carer.

My wife was struggling with ever worsening headaches. The steroids have been upped and upped to counter this.

I've also seen my wife deteriorate over the 4 weeks she's been home. Her language has got worse, more jumbled and made up words. Less steady on her feet. Today she had a really shaky arm that is getting worse. She's very tired and would just sleep if I didn't wake her up for meals / visitors. Everyone who has visited her recently agrees she is doing less well than around the time she got discharged.

I feel we've fallen between the care cracks a bit. She seems to be under the care of 3 different teams. Oncology for the treatment of the tumour, a Palliative care provider, and still under the therapists who've been with her since she was discharged. It just doesn't feel very joined up or just one person overseeing all of the care and therapy.

She is very aware of, and frustrated about what she is able and unable to do, it's not where she wants to be. She's worried she's becoming a burden to myself and my son (she's not of course). And getting quite depressed. She's said she wished she could die more than once. There's a lot of repetition I am finding quite wearing.

So much more I could say. But it would sound like whingeing. Daily radiotherapy starts next week. Will it make her any better I don't know. We've had a discussion about if the treatment makes her feel worse then we need to have another discussion about whether treatment is worth continuing.

Work are still paying me. I don't know what I would have done if they haven't.

Jr is aware of the full diagnosis and is receiving support from a local child bereavement charity.

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 ****s 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 .......