Confusion

[Rayzonanewme]

Sharing, how in life something can simply change your life. And do the best we can to carry on, the way we are now in life!

That was a the day , a decision for operation date. Did have a further MRI in August ,before operation 3 September 2018, Eye sight was fine until 2 weeks before op ,my left eye when I looked left I got double vision.

Anyway after craniotomy/cranioplasty, alloplastic was used to replace skull and eye bone.

First week I spoke like a toddler but having speech help and support I kind of in a way back to how I was, nearly 4 weeks the finally discharged.

All BT removed however cells/remnant possibly remained.

Had a lovely break with Peter, 6 weeks after discharge, however slightly over doing things, walking too much. I started swelling left side where BT was removed of face and side of head ,after being seen at LGI hospital diagnosed pseuomogoele, brain fluid infection/leak. Followed over a few months of lumber punctures and even 1 week in hospital with a fixed lumber puncture in spine. Anyway it did help and after Xmas found growing again so decided by Dr to have a small correction craniotomy March 2019. And a few minutes months after operation healed and getting used to protruding left eye and no vision.

Life continued and lots of changes and homes.

Then MRI mid nov 2022. And got appt mid Jan 2023. And my Fav DR Corne I call "the life Savour" .

At Appt a brain tumour regrowth . And unfortunately inoperable and referred to oncology dept.

Under Dr Flatley ,anyway made a query and another Dr agreed to see me Dr Tiago, he deals with Gamma knife. Seeing Dr was quick and he sorted hospital transport.

All new and info given but tumour was over 4 cm in size to big for gamma knife treatment. So they have a MDT meeting.

Eventually a few weeks later I met Dr Hatfield and now was my doctor. And not too long after did radiotherapy over 28 sessions and finished beginning May.

So I guess a lot of changes etc.

Thankfully now ok with only 20%of the Regrowth of brain tumour to live with in head , Still no name lol.

Beyond the brain tumor.

I already have barretts osophagus and hiatus hernia, reflux over 5 years ago and slightly overdue 5 year endoscopy which I had in June and spoke to Dr after and told growth base of Osophagus that will need to be removed, so had CT and in 2 weeks gastroscopy/EMR . Hope fully find if none cancerous, but at the unknown stage. Good nurses to get info /advise. So mentally head is like a Bermuda triangle,trapped In a crazy maze lol. The joys of living with brain injury from the brain tumour removed and 20% of the remnant to live with and also peri menopausal!!!!.

And thank you to Yorkshire's Brain Tumour Charity support from them and meeting fellow Brain tumour Warriors. And Second Chance Headway Centre helping with dealing with brain injury

And brainbox received from brainstrust and online support.

❤️

Just sharing post I shared on other media ,but mind more confused ,undecided ,over talking, overthinking.

Is this just being me, peri menopausal, or brain injury affection thoughts and personality ?

[Writeronstack]

You are going through the wars, aren't you? The fact that you are reaching out and writing online is really GOOD Rayzonanewme.

What you have been through is pretty horrendous.

Hang in there. Who knows or even cares if it is you or the peri-menopause? You are still motoring along, with the will to reach out, and recall what you do - and write it all down - DESPITE your range of issues.

FANTASTIC - you will turn a corner, I am sure. You have a range of doctors pulling you through. Brilliant.

Let us know how things look in a bit.

an uphill landscape, with someone pulling another person along.

[Alibongo60]

Hi Rayzonanewme, you’ve got an awful lot to get used to and we’ve all been there with having to cope with our own issues, so we will always help in any way we can. What I do say though is never give up hope, I had a brain aneurysm that was so big it was pressing on my brain stem, and my docs only gave me up to five years, that was six years ago. It has shrank, and I am doing a lot better at the moment so I will take this for now, but it is very unpredictable and ruptured once in 2017, so not taking it for granted. Every day is a blessing so keep going, always here to help if we can, take care love Alice xx