adjusting to life post brain surgery

hi virtual community, I had a major craniotomy 2 years ago to remove part of a brain tumour. I am back at work and its only this year that work has become more difficult, which was a surprise because last year i was on chemo and this year was supposed to be a fresh start but it has actually been more difficult and no one really understands. Anyone else out there who has a similar experience?

[cat3]

Welcome Jesse. Is it since you returned to work that you've struggled more...............when did you go back ? x

[Hidden in reply to cat3]

Hi cat, yes i went back june 2015 then started chemo in july 2015 until may 2016, the current issues are from the beginning of this year.

[cat3 in reply to Hidden]

I know a couple of people who've had chemo and both report how exhausted it made them feel. On top of that, your surgery has almost certainly left you with after effects, the main one being fatigue, so you've had a double whammy.

Its one of our pet complaints here Jesse is that no one 'gets' what it's like coping with the after effects of brain injury, whether stroke, injury, tumour ...........etc..

You might want to phone the Headway helpline for printed information on your condition, if only as reassurance that what you're experiencing is the norm.

It can be hard coping with the ignorance of people who haven't a clue what you're feeling ('cause we look just 'fine' don't we? ), but eventually I hope you'll learn some dismissive quips and learn to let it go if someone gives you the 'get over it' treatment.

The helpline no is 0808 800 2244 and it's a free call (office hours). Have a chat with them ; they're great people !

See you again soon I hope. xx

[Hidden in reply to cat3]

Thanks Cat i got a brilliant document when i left rehab called 'Returning to work after brain Injury' which i have finally got around to reading properly now and it is really helping, i wasn't really in a position to absorb what it meant when i first came back was still a bit early i think but my sick pay was running out.

ITs a shame my managers didn't bother to read it when i first got back, people seem to understand chemo and cancer better now but not brain injuries. And i work at a large public sector organisation.

[cat3 in reply to Hidden]

I think Headway could probably help with your employer awareness problem. Talk to them Jesse ; there's nothing to lose and may be much to gain.

Employers are bound by law to make provision for people in recovery from critical illness. xx

[Astley10]

Hi ther a dont know if this is much help but i also had a crianiotomy done on my head following a fall out the back door but eventually went back to work as a bricklayer which i was able to do but it was harder constantly having to check sizes meassure them oot and keep checking them again... a was able to do it but it was really really hard compared to how a was before my tbi.

[Hidden in reply to Astley10]

Thanks Ashley, I used to be able to repair my bike but not anymore, i have never been good at DIY but can't even put a shelf up now, so it sounds like you're doing pretty well, also my spelling and handwriting are loads worse. do you get headaches?

[Astley10]

A wouldnt say a headache as such.i have no feeling on the right side of my full head but thers times my brain feels like its a shrivelled up prune a take ibupfrofen for this and a know wen a forget to to take as i get that shrivvelled up feeling x

[Hidden]

Hi Astley that sounds weird and uncomfortable, perhaps you brain bounced around a bit? Did you go to south mead and BIRU? or are you in another part of the UK? surprisingly my headaches have got better but when i do get one, its like a power drill through the head.

[peaches2]

Hi Jesse, I had a brain tumour removed in 2012 and yes although I needed several months off work to get myself back to as normal as I would be I felt reasonably ok, however mine started growing again and I needed radiotherapy in September 2015, (I didn't need chemo). I felt fine at first with the radiotherapy but as the months rolled in I felt and still do feel more limited than I was before the treatment! I'm def much more fatigued now than I ever have been and I don't work anymore which does get me down a lot!

I hope you are coping with it all as you're correct, most do not understand at all, lots claim to but their actions prove that they don't have any idea what it's like to feel you are not as able as before and it's such a horrible, upsetting feeling when you realise that work is becoming more of a struggle.

Best wishes to you.

xx

[Hidden in reply to peaches2]

Thanks Peaches that's really helpful, Life with a brain tumour is tough enough without the associate treatment acquired brain injury and work stress, were your employers sympathetic at first or did the radiotherapy force you to stop?, I have heard that radiotherapy is worse than chemo in terms of Fatigue and general slowing down, also people tend to have heard of chemo a lot more, which isn't to say its an easy ride because its not. Its awful, not so much the nausea, but a kind of a greyed out hollow feeling with more cramps than nausea, in my experience anyway, however it does seem to have worked so far and i feel completely recovered one year on, happy to advise if you do have to go through it. also can i ask what your diagnosis is? mine is a oligodendroglioma they have such forbidding names don't they?

[peaches2 in reply to Hidden]

Hey Jesse, I quit work through my own choosing as I was in a class with 3-5 year olds and felt that I kept pushing myself to manage for continuity for the children, I hated to be off sick so I would come home shattered and my head would feel fit to burst, my ears would feel like they were going to blow off and all I could manage bar work was to eat tea and go to bed. It wasn't a life at all, so I stay at home now and do what I can when i can. I also have two prolapsed discs in my neck now and degenerative bone disease, it's very painful and I have to be very careful ... the low chairs in the classroom and the constant tipping my chin down to talk to to the children meant I was aggravating things. I was so lucky that my tumour is a meningioma, stage 1, although they say the chances of a stage one growing back are very small but mine did. Now I have to pray it doesn't grow more or that i don't end up with more of them as lots of people I know seem to have more than one and have needed more surgeries....eeek, that scares me a lot and I'm quite a positive person but I do understand that as far as having a brain tumour goes, I'm one of the luckier people. Benign is not fine but certainly better than other types. I always thought that chemo would be way worse than radiotherapy and radiotherapy's bad enough...tho fine at the time but I'm def suffering now with not managing like I used to.

You take care Jesse and all the best for your continued recovery!

xx

x

[Hidden in reply to peaches2]

Thanks a lot and good luck to you too x

[Chris80]

Hi Jesse I was hit by a car in 2011 and had a few major head operations and a craniotomy on the right side of my skull, I suffer from a few things like many others on here, I'm extremely tired most of the day and when it's bedtime I can't get a good sleep, I lost my sense of smell and taste, I've got a temper and I'm really snappy, I suffered from extremely excruciating headaches that took over my life up until a year and a half ago, but these headaches was where my plate was not my skull and the Gp tried every sort of medication and nothing seemed to budge it then I got referred to a neuropsychologist and he recommended I try gabapentin 300mg and 100mg so I said to Gp and he gave me them and I've not had a headache since and only need to take them once I feel one starting to come on so you should maybe say to your doctor about these if you suffer the same, hope this helps and welcome to the group

[Hidden in reply to Chris80]

Thanks chris, my headaches are also intense - power drill sort of pain, I use CBD cannabis called CBD chronic from serious seeds in holland. Works a treat, never tried the capsules, are they legal?

[Chris80 in reply to Hidden]

The gabapentin capsules you get from the doctor I get 300mg and 100mg ones and took them throughout the day then headaches just went away completely then I feel a headache coming on and just take one and it goes away, they helped my massively as the headaches took over my life, thanks