Brain Tumour + Brain Injury = ??

[marzy31]

Had crainiotomy end of 2015 to remove brain tumour. Living with brain injury with the help of headway and brain injury team. Trying to accept what I can not change and adapt to make things better. Little steps...

[cat3]

Hi Marzy and welcome. With your attitude you're well over halfway towards making a success of the cards you've been dealt.

So many BI survivors (including myself) set the impossible standard of a return to their former capabilities.

Only after the acceptance of certain deficits and changes can we ditch (most of) the frustration and disappointment which unrealistic aims bring, and learn to embrace what we've got to the best of our abilities.

I hope you'll stay around and share your experiences & thoughts on a regular basis. Regards, Cat x

[marzy31 in reply to cat3]

Thanks Cat. I was an engineer before and now relearning how to make a cup of tea. So my logic problem solving old self tells me that I can't be who I was before so just have to figure out who I can be. Not to say it's not hard. Still early days they say I still sleep a lot but not tonight apparently but maybe that's because I have my first speech therapy session tomorrow and think there's more deserving people than me. I can talk my words just get stuck. It use enoy me when people finishing my sentances realised its just human nature and these days more glad of the help. You okay as realise it is 2am?

[marzy31 in reply to cat3]

Staying around is a little difficult apart from the obvious trying to remember my email address and then needing to get my password reset each time lol. The real issue is i struggle with understanding long messages and also lots of replies are confusing. On the whole using this site is a bit of a challenge but I so want to. Maybe it's because its only been 9 months since brain injury but I will keep trying. I couldn't taste anything six months ago but thats better and can now make tea and toast with a checklist so onwards and upwards...bring it on xx

[cat3 in reply to marzy31]

I'm a night bird Marzy so often still around at 2pm. So you're another who's taste has been affected ; seems like it's a really common issue with brain injury. there were four of us in the ward, all with corrupted taste & smell.

It's good you're having speech therapy; take all the help you can get to reach your maximum potential because, as you've said yourself, it's pretty early days for you and there'll be many improvements still to come.

I know passwords can be a pain when your brain is so compromised. I hate having to keep logging in every time, although it isn't such a big problem for me now 4+ years on.

And I know how difficult long posts can be for our brains to assimilate, but just take what you can from the forum without stressing yourself ; like you said earlier..............little steps........

Hope to talk again soon Marzy. xx

[Hidden]

Hi Marzy, Hope the speech therapy goes well. Each little thing you do is one step further towards recovery.

[marzy31]

Thanks. I am struggling to pull it together this morning need to get washed and dressed rather tired and my heads banging like I have been on a pub crawl. But hey what's the worse that can happen I cant speak or I fall asleep or i put my clothes on inside out again. Bring it on i got nothing to loose 😆xx

[Kirk5w7]

Hi Marzy, that's the attitude, your problem solving skills of old will stand you in good stead.

I'm over 4 years on and after a shower in the morning need 5-10 mins before I can even tackle getting dressed and then when dressed need at least another 5-10 mins before I can do anything else, so exhausting!

Hope today goes well for you, I've got counselling today, my last I think.

Take care Janet x

[marzy31]

Thanks Janet hope goes well for you also x

[razyheath43]

Welcome.My hubby had a frontal lobe tumor reamoved two years ago.You will be fine,good luck with youre speech thearpy

[marzy31 in reply to razyheath43]

I like your optimism but I am along way from fine. Beats the usual comments I get from medical profession.... it will take time though. Not that I am not trying but I suffered a brain injury in removing the tumour and have been left with a lot of deficits. To name some of the lovely diagnosis executive disfunction after brain injury and cognitive communication issues. Not to mention Chronic headaches and fatigue. I can't drive work cook getting washed & dressed is shall we say problematic amongst a whole load of stuff. But on the whole my glass is still half full and my humour is still somewhat surprisingly intact.

[razyheath43 in reply to marzy31]

Yeah our sense of humor has been pretty much intact all the way through. It does take time to feel more like you are getting back to "new normal" but it will happen. xxx

[Hidden]

Hi Marzy, welcome. It's been ten years since my brain haemorrhage and am still improving. The most challenging thing about recuperating in the first year is adapting to what you have and letting go of what was. Also, it is really important to get plenty of rest to allow your brain to heal as much as possible. I hope your speech therapy session went well. If you have any questions, do not hesitate to ask as this forum is very friendly, open and supportive. Claire x

[Elenor3]

Hi Marzy,

Welcome I understand all that you're saying. Many improvements come as a surprise and sometimes all of a sudden. I've found unexpected changes over the last couple of months - he aches declined......some memory improvement (well my partner would argue otherwise), but it's just a case of keeping in going. I believe that attitude can help, and I'm very much with you....lets get going........lets not let this beat us. Good luck with your recovery and speech therapy.

[Grannt67]

Hello Marzy,

I too had a craniotomy in 2009 and experienced similar difficulties / experiences to you. It took me more than two years to recuperate. I had to learn to be very patient with myself especially when I struggled to find words or to respond to questions.. I had to learn new strategies for coping e.g. rest when I felt tired. Often taking small naps in the day. I no longer could function at a senior management role with the NHS. Like you my executive functioning was diminished. I had to retire on medical grounds. I have tried to avoid stress as best I can. In terms of getting my brain to make new connections and to give it a bit of exercise, I took up German. Learning a foreign language helped me considerably. My wife told me that I had a slight personality change. I have become even nicer and a better listener than prior to my surgery. I had some gamma knife treatment in 2014 to deal with a regrowth of my tumour and more recently following an annual MRI scan a small nodule has been seen.

My Neuroligist has told me not too worry at this point in time as the nodule has a lot of space to grow into before becoming problematic. The space vacated by my first tumour. I will have another MRI scan in April.

Thanks for sharing Marzy and I wish you well for the future.

Regards,

Nigel

[marzy31]

Reoccurrence is my worst fear my heart goes out to you. The tumour I had no one seems to know much about it. They inform me it was very rare especially in adults. It also took a week for them to agree on a grade. Both these things attribute to the slightly nervous thoughts around a possible come back. Though being a half full kinda girl I am hoping the odds are in my favour. I had more chance of winning euromillions seven times in a row than getting it in the first place so fingers crossed. I love that you learnt a new language the fact you could do that with executive dysfunction is inspiring. I apologise for being nosey but you said you were retired on medical grounds but do you work now? Going to stop here... my OT will be proud.. It's been a long day and I am tired. cheers nigel and hope all goes well