The My Turn Post

Wishing you all the best for you and your wife – and as said so many times above, take care of yourself too.

Well we got a call from the care nurse today who had visibility of my wife’s notes after the Multi-Disciplinary Review.

‘Scans have identified a High Grade Tumour. Next steps will be to meet with the consultant to discuss Biopsy or Resection’.

High grade = malignant on the NHS website. Resection = removal according to the nurse. Waiting for the appointment now. Not the news I was wanting to hear especially as I’ve been trying to stay positive over the weekend and this week. It’s obvious now we’re in for the long haul.

Some good stuff…

My wife seems better everyday. The reading / writing / cognitive speech improvement is noticeable on a day by day basis. Which is good. I’m under no illusion that this is due to the steroids and is not the long term fix. However it’s positive for my wife, and her own self esteem. We also heard from, and have an appointment tomorrow with the Macmillan Speech Therapist to see if there is any support her team can give us.

My son’s school have been incredibly kind and supportive. We had a great meeting with his form tutor where we explained the situation and just asked them to watch out for him. He’s settling into his new year really well after one week which is a comfort.

Last week was a bit full on but in some ways that was a godsend. I didn’t have time to have those ‘what if’ dark thoughts. Saturday and Sunday I felt that my wife was well enough to leave her at home on her own without risk of her getting muddled or needing help. I had some quality time with my son.

I guess I had my first real ‘moment’. Had a lovely few hours out Sat AM out with my son doing something. He’s a good kid. I was watching him having a good time and one of those dark thoughts crossed my mind. I’ll be honest – a moment when I thought ‘he loves his mum, what if she isn’t around while he’s growing up?’.

His new bike is great. He’s riding a medium adult 29er. And flying on it. Luddite fgk is riding an old school 26er hardtail, I may have to justify a 29er to keep up with him. We had a 3 mile shakedown on Sat PM, and a nice proper offroad 2 hours on Sunday. He LOVES his new bike. This Saturday we are heading to Haldon. Mrs fgk is going to meet some of her family to walk and we’ll have a razz around the trails.

In the back of my mind I think I was thinking I’d be back to work Mon (or Tues now). But while we are still expecting calls from the professionals I want to be at home to be part of those calls, as one of the things my wife is not quite so good at is remembering / recalling the medical discussions.

I apologise in advance for another emo dump. Thanks for listening.

I’m impressed with the focus on positive thoughts and actions fgk, not easy I’m sure but that really must help your wife and kid, and you of course. Succumbing to dark thoughts really won’t help.

Despite you not receiving the very best news that you might have hoped for its good to hear that you will be speaking soon to a consultant about “resection” and your wife will be getting help with speech etc. Yeah it sounds like the long haul but you seem to have an impressive amount of help and support from friends, family, work your kids school, and of course the NHS.

Good luck, take care, thanks for the update.

I’m so glad you’re wife is feeling better fgk even if it is due to the steroids.

All you can do is what you are doing so well now, even if you don’t think you are… just one foot in front other the other, one day at a time. It’s still so early in the journey your family is on but you are doing brilliant to be honest.

one of those dark thoughts crossed my mind.

Don’t fret about that- it’s natural. When Mrs FB was having chemo 5 years ago , I was WFH and doing the walk to school. One morning the thought popped in my head that I may be doing it without the recuperating Mrs FB to get back to.

All the best to your family

Don’t really have anything to add, but good luck – I had something very similar with my father, happy for you to DM me if you think it would help.

Dark thoughts . Its normal to get them i think in this sort of situation. Dwelling on them is unhelpful tho and if it becones too obtrusive the pro help might be useful.

Its not showing weakness to have help with yor head. Its sensible. Counselling helped me and i had my first session a week or two after diagnosis.

Never fret about venting o here. Its a good place to do it and folk are supportive ..good luck

Hey all. I just wanted to say thanks for anyone who’s taken the time to reply or read. I know I haven’t replied to anyone specifically. However I just wanted to say I’ve read this thread and all replies more than once. Every reply is a great comfort. Thank you.

Stay positive fgk. Thoughts are with you.

We had the meeting with the Neurosurgeon today. It wasn’t the best news. I’ll try and keep the emotion out for the next bit…

My wife has an ‘aggressive, or high grade tumour’. Although you can’t be 100% certain until a biopsy is performed it is extremely likely the tumour is cancerous. We were asked if we would like to see the scans. We wanted to. We saw the tumour, and also a large area of abnormality around it.

It was explained to us that the tumour cannot be completely removed and therefore cannot be completely cured.

We were then presented with 3 options, do nothing, opt for biopsy and subsequent treatment based on the biopsy, or full surgery to remove as much as possible. With the latter two comes a risk (of complications such as stroke, infection, increased damage to speech functions) vs reward (a longer life) decision as I have understood it.

We are currently considering the surgical ‘resection’ or removal option. There could be up to a month’s wait.

We got home. Informed immediate family.

I feel numb, scared and tired.

It was a nice weekend, a temporary break away from this stuff. Back to earth with a bump today. A ton of thoughts rattling around my head.

Wishing you all the very best. My sister was in a similar position with a grade 4 melanoma brain metastasis. She had it removed and radiotherapy. Every choice will be different.

I will say that your senses and memory will be on overdrive, so take time to enjoy some positive things with young fgk and your wife. Even if it’s just a walk in the sunshine.

My sister has been gone six years. Children are resilient. But they do need memories.

Very best wishes from me too fgk. The options you are being offered must be so difficult to process, no doubt you are receiving professional support to help you. Take care of yourself.

fgk

That’s a tonne of info to take in for you and your wife, I’m not surprised at how you are feeling.

This is a good place to vent and sometimes just putting your thoughts down in words can help.

I really hope the path through this becomes clearer in the days and weeks to come mate. For you, your wife and your whole family.

Nowt i can say to help really. Like wveryone i wish there was.

Try to make clear decisions for the right reasons. Do get help with your head. As you probably remember i went thru similar last year. Pm me if you want

Good luck.

Well it’s been a week since we met with the Neurosurgeon and just over 3 weeks since the diagnosis.

The last week has been a rollercoaster. I got my positivity back. One step at a time. Let’s get this surgery out of the way and see what’s next. As I said one step at a time.

Mrs FGK went through a bad patch Thurs/Fri/Sat. The consultant recommended we wean down the steroids. Maybe a little too quickly in retrospect. I noticed her mood change Thurs and by Friday she had a headache. Quite a bad one. She was putting it down to not drinking enough and being dehydrated. It was obvious to me the steroid dose was too low and most likly some swelling had come back. I managed to speak to someone on Saturday who recommended going back to the dose before we started to wean down. I spoke to someone yesterday who said try tapering again but a little more gradually.

I feel a bit obnoxious saying this but I’ve made enquiries about bringing the surgery forward using my work private cover. Unfortunately I think the one consultant who does private work in the area (and is also ultimately responsible for my wife’s NHS care) appears to be away at the moment so I’m not sure I can make this happen. Everything is crossed at the moment hoping we won’t be waiting ‘up to a month’ for the call, hoping it will happen sooner.

Everything seems so busy. There’s always stuff to do. I’ve taken on Jr’s help with the homework (Mrs FGK used to do this but her reading / writing has been affected by the tumour).

Yesterday we went and met a solicitor to get our Will sorted. Bad us, one of those things we should have sorted out years ago but never got round despite best intentions. We also visited a friend who has an 11 week old puppy. A beautiful Springer. It was nice to meet him and have some cuddles. I was exhausted by all of this and got my warning that I’ve been overdoing stuff. Started to feel a little bit lightheaded / dizzy. It’s a sign I know. In periods of stress / tiredness it’s the first indicator I’ve been overdoing stuff.

Sat I had a great evening with a mate. A few beers. It got a bit late. Didn’t get enough sleep Sun PM…

And I’m still tired today. Normally we take Jr to the bus and walk the dog. I’ve opted out of the dog walk today. Still a ton of stuff to do today. Do battle with the GP reception to get some more meds for my wife, decisions about the will to be discussed and the solicitor informed. Meet FGK Jr’s tutor at school later.

Just writing this down makes me realise I’ve coped but I’ve folded myself inside out doing so. I’m welling up writing this. I will find some me time. I have to.

You are going through a huge amount of emotional stuff and it’s not surprising it’s going to hit you harder than you think or want. Please try to take it easy when you take up arms against the GP reception!

You’re doing a fantastic job though, and really well done for acting so quickly on the steroid dosage.

By the way, maybe have a short nap after lunch. My step-father swears by them for a quick recharge.

Please keep telling us what’s going on. You need to know there are people out there caring. Make time for yourself where possible

Good luck with bringing the surgery forward. I would be doing the same for any of my loved ones.

bunnyhop x

I feel a bit obnoxious saying this but I’ve made enquiries about bringing the surgery forward using my work private cover.

No idea why you say that as it is a perfectly normal human reaction to do whatever you can for your wife and family considering your circumstances.

I am sure that your appointment with the consultant will reflect the urgency of the situation though.

It’s good to hear that you feel that you are coping reasonably well. It’s important to seek help and support if you find yourself struggling. Keep us updated when you get your appointment sorted out etc.

Best wishes to you all.

Just a thought you having mentioned wills, have you considered LPA(s) for health and financial. Easy to do yourself don’t pay a solicitor to do it. Unfortunately they’re one of these things you don’t want to do but are really handy to have when you do need them (much like wills)

Well I’m recovering from another full on weekend.

Around lunchtime on Saturday Mrs FGK took a turn for the worse. She said something weird and it was obvious to me she was hallucinating something. Then she was unable to communicate what she was seeing or explain anything… Talking but made up words. Holding her head it was obvious her headache had returned and something wasn’t right. Quite scary. The neuro ward at the city hospital her care is under advised I take her to our local A&E. She was admitted to the ED quite quickly, but things slowed down from there, basically the ED Dr’s had to ‘refer’ the CT scans they took on Saturday to the neuro dept at the city hospital and take advice.

Long story short, she ended up spending a night in the local Oncology ward. Her steroid dose has been upped considerably and she is a lot better, she got sent home. I’ve no idea what happened yet as I have not spoken to the Dr’s. They spoke to my wife on Sunday before visiting hours, but she hasn’t been able to tell me accurately what they said was wrong – just that they, on the advice of the Neuro consultants had upped the steroids. I’ve made a few calls today to see if anyone can tell me what they saw in the scans on Saturday.

It’s a tough one. The steroids are bad. None of the professionals want her taking them long term. Whenever we try and wean down we have a setback. I’ve read / been told that one of the side effects are mood swings. But the penny didn’t really click until she got home yesterday. She’s currently completely buzzed on the steroids. Not stopping talking, things that come into her head need actioning (usually by me) immediately. She’s struggling to find words so I’m trying constantly to understand what she wants. She doesn’t stop talking (I know I know that is normal for a lot of husbands / wives). A lot of repetition, then she’ll latch on and worry about something insignificant. It’s exhausting.

She has a detailed pre-surgery MRI scan on Wednesday. The surgeons use this scan as reference / a map for the surgery. We still don’t have a date for the surgery.

I managed to arrange a private appt with the only consultant who performs private work in our region via my work cover, he was on holiday which is why it could not be sooner. So it remains to be seen if I can bring things forward using this avenue…

Just want you to know that we are all hear to listen and help you unload

It sounds like a horrendously difficult time for you, your wife, and your child fgk. But re: “She has a detailed pre-surgery MRI scan on Wednesday” at least provides reassurance that things are actually moving, even if details such as a date for surgery havn’t yet been decided. Best wishes.

I hope that the getting things down on the screen for us is helping with things. We’re a 24/7 365 day organisation and helping with the load is what we do.

We’re rooting for you and Mrs fgk.

Agree ^^^ all of us rooting for team fgk

This is probably a bit raw for a few of us on here at the moment, but I have to say you are doing a fantastic job of being the husband and father to all around you at the moment.

Please try and consider yourself in all of this, I didn’t and I was close to my own end. I said a few weeks ago we are all here for you and it was a few brave souls that saved me on here, Please contact any of us even if its for the smallest thing you are not alone.

I’ve read / been told that one of the side effects are mood swings. But the penny didn’t really click until she got home yesterday. She’s currently completely buzzed on the steroids. Not stopping talking, things that come into her head

Having taken VERY high steroid doses in the past, albeit for different reasons, I can relate to this. They give you such a massive energy boost it’s unbelievable. Whilst it’s true you shouldn’t stay on them for extended periods don’t be scared n too much of a hurry to come off them. I was on them for a few months without too many issues. Certainly nothing long term.

Fgk – Your attitude and outlook on here are astonishing. I’ve no idea how I’d cope in your situation but can only hope it would be as good as this.

I have read this thread regularly and it is amazing what you are doing in a hugely difficult situation, FGK.

Seriously well done FGK in holding together through all of this. I’d imagine it’s hard having to be the strong, reliable one. Hopefully pouring it out into this thread is helping, but do you have someone to support you? No idea where in the country you are but if you need someone detached from the situation to vent to while riding your bike / sitting in a pub / eating cake then I (or I’m sure anyone on here) would gladly help. I am close to Swinley, just DM me.

With regard this:

I feel a bit obnoxious saying this but I’ve made enquiries about bringing the surgery forward using my work private cover.

Don’t feel obnoxious, why wouldn’t you want to do the best you can for your wife? Never feel guilty about that. Besides, this is what private healthcare is there for – if you can shortcut a queue then do it. I realise this might irk some for various reasons but to that I’d say hate the game, not the player.

I feel a bit obnoxious saying this but I’ve made enquiries about bringing the surgery forward using my work private cover.

Far from it. If you go private you free up NHS capacity so someone else moves up the queue. It is a win win and if you have that option, grab it with both hands.

realise this might irk some for various reasons but to that I’d say hate the game, not the player.

I have a deep loathing for private medicine but when Julie was ill we had some tests done privately to speed things up.

Dont feel guilty abiut doing the best for your family

Sent you a pm

Rooting for you all fgk. As others have said this place is great for support or just unloading. Thinking of you all

First of all – a big THANKYOU for all the positive messages, on here and via DM. It means a lot.

It’s been a tough week. I won’t lie. The aftermath of last weekend… A big dose of steroids to sort my wife out, and a higher dose when she returned home meant some big mood swings, from an almost narcotic high, and incessant repetitive talking, to some very depressed tearful lows. She’s frustrated she can’t read (she’s a teacher), she can’t drive, when she remembers stuff it needs to be communicated immediately or might get forgotten. The loss of independence is very upsetting for her.

The good stuff. A private consultation with the neurosurgeon on Tuesday. He looked at her scans after she had them done on Weds and got back to us Thurs AM. The tumour has got bigger but still operable. They want to perform an ‘Awake Procedure’. Not for the squeamish but we are glad as it will hopefully, if all goes well, present less risk to her essential neuro functions with this procedure.

So it’s all hands to the pump, a baseline interview with the neurophysiologist before the procedure. 2 Covid tests, childcare to sort out before she gets admitted. Again if all goes well she’ll just be in overnight. Then 7 days later we have a subsequent consultation with surgeon, to understand the results of the biopsy on the removed tissue and next steps.

We have some nice things planned this weekend. A catch up with some friends, just outdoors but we can walk the dogs and Jr can ride his bike, play footie with their kids. We sat down and watched a movie last night (Jr’s first experience of Raiders of the Lost Ark!). We just want to have a normal weekend after last weekend.

Thanks for listening.

bigger but still operable. They want to perform an ‘Awake Procedure’. Not for the squeamish but we are glad as it will hopefully, if all goes well, present less risk to her essential neuro functions with this procedure.

Not withstanding the very seriousness of the situation and enormous stresses and challenges it creates for all those concerned that is such good news!

I was apprehensive concerning what the latest update might be when I clicked on this thread but despite the fact that it’s clearly been a “tough week” it is so good to hear some real positivity.

From your appointment on Tuesday to the decision to operate and confidence that an “awake procedure” is suitable it is reassuring to know that things are moving and that what can be done is progressing.

Have a lovely weekend and best wishes.

All my love and best wishes to all 3 of you. My family and myself have been through some horrid health stuff and come out the other side. Here’s hoping for the best outcome for your wife. Can’t wait to read that update. Xx

It’s 0320. I can’t sleep. It’s been another shitty few days.

Sun AM Mrs F woke up with another headache and vomiting. She took her meds went back to bed. By mid morning I couldn’t properly rouse her.

Ambulance called she was taken to our local hospital. Not long after she was intubated and sent to the city Neuro ICU via Air Ambulance.

By 2300 I was informed by a neurosurgeon the tumour had grown, and there was an enormous amount of swelling on the brain. She had stopped responding to the steroids and they would have to perform emergency surgery in order to save her life. There would be significant risk perhaps to her speech and possibly more serious disability.

At 0430 Mon AM the surgeon advised me the surgery had gone ‘better than expected’.

Through Monday they lowered the level of sedation and Tues AM they extubated her. However she was not showing much in the way of responsiveness to neurological tests.

During my visit yesterday it was explained that although they don’t have any biopsy results yet it was clearly a very very aggressive cancer. They didn’t remove it all during surgery.

I guess I had, until yesterday, thought she might be able to recover enough that we might get my wife back, and be able to consider treatment to buy us a few more weeks, months or years.

However discussions with the Dr’s yesterday lead me to believe that I should not get my hopes up. Any improvements might be positive but I got the impression not to get my hopes up. There were discussions about what my support network is like, what support the hospital can offer me, what my attitude to re-intubating her would be if I she declined again, had we ever discussed how she felt about people caring for her if she was severely disabled.

Although I’m not ready to lose hope yet, it’s time to replace some of my optimism with some realism. Ask more questions when I visit today. But start coming to terms with the reality of this situation and how I might address this with my son (with the hospital and school’s support).

I feel sick to the stomach writing this. I know that I and we (my son and I) will cope. I don’t want to have to cope, but I will.

There’s always someone awake at STW, mate. And you will cope as awful as it might be.

I’m not surprised you can’t sleep, and can only imagine the stress. Those conversations must be so unnerving.

If you can manage, write down that list of questions.
When you’re tired and overwhelmed later today it will be helpful to be able to look at the list and not miss anything.

Wishing you all, all the best.
I’ve a son the same age and well up just thinking of him having to go through what you guys are going through.

All the best for today.
That list advice is brilliant, getting it down on paper means you don’t have to keep it spinning round your head to remember everything for later.
Might also give you a better chance of rest.
Thinking of you and your family.

I can’t really add to what loum and reeksy have already said, but I do think writing stuff down (both questions and answers) can help.

Sending a huge hug to all three of you too.

Another roller-coaster catch up for me (4 days). Once again no advice, just best wishes and hugs for you and your family fgk. Sat on a train window gazing, your words are very levelling to me.