Forum search & shortcuts

The My Turn Post
 

The My Turn Post

 fgk
Posts: 25
Free Member
Topic starter
 
[#12529602]

Regular lurker and occasional poster under alternative account. I've seen plenty of posts like this before and now it's my turn.

Just had a really shit weekend. My beautiful wife (who turned 50 a few weeks back) hasn't been herself for a few weeks. Over the last week a splitting headache developed and she was occasionally struggling to find the right words when talking.

Saw GP Friday PM then she took herself off to bed Fri night slept for 36 hours before waking up Sun AM vomiting.

Out of hours GP at local hospital referred her to hospital ED Sunday where a CT scan revealed a brain lesion. By late Sunday night / early Mon AM she was moved to an oncology ward.

Specialist confirmed a brain tumour and further MRI / CT yesterday at least showed that the brain lesion is the primary tumour and it's hasn't spread from elsewhere in the her body.

Treatment will be led by specialists at a city hospital a bit further away than the hospital she is currently in. They don't seem to be messing about and have got things moving very quickly at least as far as initial investigations / assessments are concerned.

We live in a rural location and obviously she is no longer allowed to drive.

11 year old son back at school yesterday. He's being brave and knows mummy is poorly and a bit muddled when he visited her yesterday.

Hopefully in the next few days to a week we will find out what we are dealing with.

Thanks for listening.


 
Posted : 06/09/2022 7:24 am
Posts: 26902
Full Member
 

No words to help other than say "****". Hang in there, keep talking and if you need help ask....


 
Posted : 06/09/2022 7:32 am
Posts: 1184
Free Member
 

Can't begin to imagine what you're feeling but I hope your wife gets the best treatment she can and they you all for through this together.


 
Posted : 06/09/2022 7:34 am
Posts: 7620
Full Member
 

Really sorry to hear that. Hope you're all managing as best you can, but can't imagine what it's like.


 
Posted : 06/09/2022 7:45 am
Posts: 44824
Full Member
 

Ouch.

Not a lot to say but hsve a big virtual hug from me

Uncertainty is very difficult. Hopefully you get some good news as things become clearer. Its a tough journey ahead of you. Use us for support.


 
Posted : 06/09/2022 7:50 am
Posts: 6940
Full Member
 

I wanted to veer away given the inevitability of the thread title but I read anyway. No advice, just sympathy and hugs for you all.


 
Posted : 06/09/2022 7:59 am
Posts: 43979
Full Member
 

Aw man. Gutted for you. I guess it's the STW demographic that many of us have had to deal with these things. Mrs S only recently got the All Clear from breast cancer and is very much still in recovery. Back at work now though. At times it feels bleak but we have an amazing medical system and there will always be an open ear and willing advice and support on here. Remember to look after yourself too. If that means you need downtime - biking, going for a beer etc - don't feel guilty about it.

Best wishes for the times ahead.


 
Posted : 06/09/2022 8:10 am
Posts: 1545
Full Member
 

Good luck to you and yours, keep talking on here.

Hugs etc


 
Posted : 06/09/2022 8:19 am
Posts: 46149
Full Member
 

Sorry to hear that, awful thing for anyone to deal with.

I've a friend who collapsed at work unexpectedly (white water rafting at the time!). His brain tumor was operated on, usual chemo afterwards, and 9 years later he's still living life to the full. With an impressive scar as a baldy...


 
Posted : 06/09/2022 8:43 am
Posts: 2819
Full Member
 

This sounds super tough on you all. Here is a very good place just to let it all out.

Im sending a hug for you all. If youre in N Wales then we can rant and ride if thats good for you?

Ian


 
Posted : 06/09/2022 9:00 am
Posts: 397
Free Member
 

Don't be afraid to vent here, having been through the same with my partner three years ago when she got diagnosed with stage 3 ovarian cancer. Talking about it is definitely the best way for you to cope with it, that's what I found. You might find some of your colleagues will not want to talk about it though, that's definitely been my experience.

Good luck and look after yourself and your Wife, it's a rocky road ahead but be reassured that the NHS are experts at this.


 
Posted : 06/09/2022 9:01 am
Posts: 25945
Full Member
 

Best wishes to your wife and all who love her - fingers crossed for some positive news at the hospital


 
Posted : 06/09/2022 9:02 am
 PJay
Posts: 5044
Free Member
 

There's nothing I can usefully add, but just wanted to wish you all well. I'll be thinking of you.


 
Posted : 06/09/2022 9:14 am
Posts: 5827
Full Member
 

Sending virtual hugs, that must have been a terrible shock.  The fact its been found,  hasn't spread from elsewhere and the serious way the hospital are taking it all bode well for a good outcome I reckon.  Best of luck to both of you.


 
Posted : 06/09/2022 9:16 am
Posts: 6318
Full Member
 

Dude that's awful.

Where are you based as mentioned above as I'm sure there will be a local stwer ho can catch you for a ride etc if you need to get out


 
Posted : 06/09/2022 9:20 am
Posts: 668
Free Member
 

I’m so sorry. A big virtual hug to you, your wife and your boy.

It’s a good sign if it hasn’t spread. It’s still a long road, but everyone I know whose cancer’s been discovered at that stage has made a full recovery.

Organisations like MacMillan and Cancer Research have some good info about taking to children. It could help relieve some of the stress and anxiety for you all if you’re talking about it well.

And I hope you have some local support!


 
Posted : 06/09/2022 9:29 am
Posts: 31180
Full Member
 

Good luck. Thinking of you all.


 
Posted : 06/09/2022 9:36 am
Posts: 413
Full Member
 

My wife was diagnosed with Cancer 2 years ago. Pretty tough at the time. The NHS were simply amazing she's now in remission our son graduated from Uni and things are good again.
Hang in there you did the right thing just pinging it out lots of support out there any advice or such like give me a ping, never a problem.

JeZ


 
Posted : 06/09/2022 9:42 am
Posts: 2049
Free Member
 

sending healing vibes.

fingers are crossed for a full recovery.


 
Posted : 06/09/2022 9:46 am
Posts: 5942
Full Member
 

So Sorry to read this. Sending very best wishes and a virtual hug.

Seriously F*ck cancer.


 
Posted : 06/09/2022 9:52 am
Posts: 6459
Full Member
 

Best wishes to you and your family, hope it pans out okay & sending virtual hugs as well. Hope you can convey to your son what is going on in ways that both help him to understand and help him through the journey that you and your wife are now on 😕


 
Posted : 06/09/2022 11:22 am
Posts: 44824
Full Member
 

Im going to reiterate scotroutes point. Take time for yourself. This is really important. Its very easy to forget this and wear yourself out with stress and worry. You need to burn off those stress hormones.

Make sure you take an hour most days just to get outside and preferably ride your bike.

You will be no use to your family stressed to a frazzle.

Consider professional help as well. I had counselling thru Maggies which helped me greatly. I did this right from diagnosis.

Clear decision making as well and the counselling helped me with that.

Good luck


 
Posted : 06/09/2022 11:23 am
 fgk
Posts: 25
Free Member
Topic starter
 

Thank you all for your thoughts kindness messages and advice.

There's a lot of great stuff up there. A lot to process. I'm sorry but this time I'm not going to reply to any individual messages.

Right now as well as doing the right by my family I will ensure I've got a bit of time for myself. Maybe a small clue to where I am but I'm planning on going for a bike ride with my son on Saturday to watch the ToB go past.

We've started telling our friends. Been a bit overwhelmed by all the messages of love and support. My wife came home today. She's a lot better, although still struggling to find the right words and process all information she is very much improved. No doubt to the steroids, and also I think being back at home in familiar surroundings.

We've got a week long wait until we hear from a Dr after her case has been reviewed by the Multi Disciplinary Team. Not a long time as far as the urgency of treatment is concerned. However I have no doubt will feel like an age.

My work have told me to take as much time as I need. In my initial shocked state I'd told myself I'd be back at work tomorrow. I'm not planning on returning at until at least after we've spoke to someone after the MDT. My work told me take as much time as I need. However I think I will go in just to have that conversation face to face with my HR dept and square a few things away with my team.

Loads of other stuff rattling around my head right now. I'm also knackered after two quite sleepless nights so may not be making so much sense.

If it's OK I'll occasionally update this thread. Thank you all.


 
Posted : 06/09/2022 9:56 pm
Posts: 1146
Full Member
 

Sorry to see your news, but glad here wife is home agaon with you guys.
I'd say it's more than ok to update, ask questions, vent or just ramble here any time. There people about most hours of the day.
You'll all still be processing and have new questions daily - make sure jot ones down for when see docs next as you'll forget when time comes.
Lots of virtual man hugs, this place is awesome for support and has experts in most things knocking about so d9nt be afraid ask stuff.


 
Posted : 06/09/2022 10:10 pm
Posts: 1921
Full Member
 

Your work will be fine without, but I know that handing stuff over helped me mentally put any work stresses to the back of my mind when I needed time off to support family.

I also logged on during quiet spells to give my mind something else to think about. However, we all react differently and it sounds like you have a good employer.

Most definitely do keep posting, this place is amazing when the chips are down.

Thinking about you and your family tonight.


 
Posted : 06/09/2022 10:12 pm
Posts: 15692
Free Member
 

I’m also knackered after two quite sleepless nights so may not be making so much sense.

With your wife home and no pressure from work hopefully you will get the rest and sleep that you need. I can't imagine what it must be like for you but there are clearly positives that you can focus on.


 
Posted : 06/09/2022 10:24 pm
Posts: 13554
Free Member
 

Echo what everyone else has said. Keep posting and I hope the three of you are as well as can be. Big hugs to you all.


 
Posted : 06/09/2022 10:25 pm
Posts: 902
Free Member
 

Very rough news, but glad your wife is home with you. Glad your employer has been supportive also.

Hope that the prognosis is a good one, and hope you all get through this sh** time as unscathed as possible.


 
Posted : 06/09/2022 10:34 pm
Posts: 1171
Full Member
 

I’m so sorry to read this. Keep posting on here if it helps, it’s always better to talk things through.
Big virtual hug from the family sandboy and hoping for some good news in the next few days.


 
Posted : 06/09/2022 10:50 pm
Posts: 4418
Full Member
 

Just to say everyone is here for you. I know exactly what your going through & I'm glad your work are seeing things properly. Massive bear hug to you all.


 
Posted : 07/09/2022 1:45 pm
 fgk
Posts: 25
Free Member
Topic starter
 

OK a little update / emo dump. Thanks for listening and the man / lady hugs.

Since I last updated this thread a lot of really nice things happened. Most importantly I got my wife home Tues. Getting her back to familiar surroundings has really helped her.

It's been an emotional rollercoaster.

The good stuff:-
- Follow up calls from her GP
- Follow up calls from the Macmillan concerning her cognitive / speech therapy
- Support from FGK Jr's school after we told them what was going on
- Overwhelming support from friends and family

I went into work Weds. Tie a few things up. Talk to my team tell them what's going on. It's a small / medium company so I went to talk to the Director amongst other responsibilities is HR, 'take as much time as you need, we know you won't take the piss'. Good enough for me. Big relief.

The big thing that is so tough is my wife. She's in there somewhere. Sometimes it's absolutely her in front of me. Other times it's someone like her but her best and worst traits are absolutely exaggerated. There is no middle any more. At least she recognises me and my son. When we walk to the school bus stop in the morning she can absolutely pull it off with other parents conversationally like no-one would know anything is wrong - although most know her diagnosis. She can steer the conversation in a way that she can talk about stuff that won't trip her up. But we get home, she's exhausted, and barely making sense.

And then she gets frustrated, because she knows she's not communicating great, and anxious about a little thing, and we'll talk about that same thing that I've sorted for 6, 7, 8 I don't know how many times. I smile and say it's sorted and then we talk about the same thing again. Which is heart-breaking and exhausting.

She's really self-aware. We can have a laugh when she can't communicate things well. She's called my son 'daddy'. Children are parents. Parents are children. She's asked us to tell her when she gets things wrong so we do. With a smile.

The simplest tasks take a long time. I could just crack on and do them myself. But she doesn't want to feel like she's useless or unwanted. So I go along with this, until it's time she needs a rest, or frustration gets the better of her, or me. So I do it anyway. Decisions like what's for lunch or evening meal aren't happening they are up to me.

Today was new bike day for my son. He's now riding a medium sized adult bike. My wife and I went to the not so LBS about 30 miles away. It's a nice town, we had a mooch, a coffee, did normal shit like we did before she got diagnosed. Picked the bike up and surprised my son with it when he got home. A new bike day is a good day right? It was nice to do some normal stuff today.

I'm very aware I need some me time. I'm gonna find that time soon.

Sooo much stuff I could say. I'm glad I haven't had time for the 'what if' thoughts or time to Google brain tumours. Monday we have an appointment to talk to Jr's teachers. But they've been excellent already, calling to ask if Jr was aware of the diagnosis (he is), and arranging a 'wellbeing appointment' for him at school on Monday.

Then Tues / Weds we wait for the call from the experts to understand what next...

I'm not a big drinker these days. Fridays / Saturdays mostly nowadays. I allowed myself 3 bottles of IPA tonight. Sorry if I'm rambling. Thanks for listening.


 
Posted : 09/09/2022 11:05 pm
Posts: 8062
Full Member
 

I wouldn't be half as coherent as that after 3 ipa's even without the trauma of what you're going through.

I have nothing to offer in terms of wisdom but it's always ok to vent on here. Despite all the petty quibbling there's always someone visually listening.


 
Posted : 09/09/2022 11:11 pm
Posts: 938
Free Member
 

I have nothing to offer other than best wishes and virtual hugs to all of you. A friend works for Brain Tumour Research and they have some amazing specialists doing incredible work, and a great many people make a full recovery.
Hope all goes well for you guys, keep checking in here when time permits.


 
Posted : 09/09/2022 11:20 pm
Posts: 9220
Full Member
 

You deserve those three bottles: you all do! 🙂 Wishing you all nothing but the best.


 
Posted : 09/09/2022 11:23 pm
Posts: 0
Free Member
 

Heartfelt sympathy, hope things turn out well for you all.


 
Posted : 09/09/2022 11:26 pm
Posts: 16534
Full Member
 

So sorry to read this. The forum was really helpful for me not long ago and I really wish I had taken their advice and not googled things (before the doctors knew *exactly* what was wrong with me) as all it did was result in a lot of unnecessary worry. Wait till you get the diagnosis in full before you look for more info is my advice. Even then it might be worth thinking twice.

I truly hope your wife's full diagnosis comes back really soon and that it's a very treatable condition. I was in a ward again recently with 2 guys that had brain tumours removed and they were doing amazingly well.

All the best my friend.


 
Posted : 09/09/2022 11:33 pm
Posts: 15692
Free Member
 

Sounds like an incredibly difficult situation FGK, but you seem to have a lot of fantastic support from your friends, work, and your kid's school.

I am impressed how you are dealing with it and thinking positively, that is so important, and yeah don't Google stuff or start thinking 'what if'. Good luck with the call on Tues/wed concerning what the plan will be.

I actually spent this afternoon in Guy's hospital cancer unit with a friend who was having chemotherapy. I've never been in a treatment room filled with so many people receiving chemo before. It was a strange experience which filled me with mixed emotions. On the one hand it was sad to see so many people some of whom were clearly quite young needing treatment for cancer, but on the other hand I found it hugely uplifting to see so many people receiving treatment which has the potential to cure them and decades ago would not have been available. So once again stay positive - modern medicine is truly amazing, and it's a great time to be alive!


 
Posted : 10/09/2022 12:01 am
Posts: 13554
Free Member
 

Has your son been out on his new bike yet OP? You’re all going through a lot so don’t forget to take care of yourself. Might sound selfish, but it’ll be good for all of you. Give your wife and son a big hug from me. As Ernie says modern medicine is fantastic. Take care


 
Posted : 10/09/2022 11:42 am
Posts: 0
Free Member
 

Nothing to add that's not been said by the more eloquent posters above.
Just another voice offering virtual hugs and wishing your wife and family all best.


 
Posted : 10/09/2022 12:39 pm
Posts: 13292
Free Member
 

I'm an emotional wreck currently.

I wish you all the best, op.


 
Posted : 11/09/2022 2:42 pm
Posts: 12089
Full Member
 

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


 
Posted : 11/09/2022 5:39 pm
 fgk
Posts: 25
Free Member
Topic starter
 

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.


 
Posted : 14/09/2022 7:25 pm
Posts: 15692
Free Member
 

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.


 
Posted : 14/09/2022 7:42 pm
Posts: 16534
Full Member
 

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.


 
Posted : 14/09/2022 8:28 pm
Posts: 3332
Full Member
 

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


 
Posted : 14/09/2022 8:43 pm
Page 1 / 5