Eggshells

Hi Rockwell, I was diagnosed with grade 4bGMB in September and given 14-18months prognosis, I've stayed very positive as a whole, but my temper was very bad at one point and I think it was down to the steroids I was on as I have calmed down a lot since they found a better balance and lowered them , stay positive and good luck, take care

Hi JB

So sorry to hear of your wife's diagnosis. My wife (54) was diagnosed with GBM 19 months ago so we are a little further along on the same path. It sounds like you are doing brilliantly and coping in a very hard situation. My wife had a lot of psychological issues early on, but seeing a psychiatrist really helped as well as removing steroids over time. btw Prozac is thought to have anti-tumour benefit so maybe she should get onto a bit of that for the double benefit.

I hear you about telling the children. Our youngest were 12 and 10 when my wife was diagnosed and it took us quite a while to get round to telling them fully. We got the whole family together and talked it all through. It was a summer holiday in fact, which has the benefit that you then have them at home the whole summer to reassure them. But it was very beneficial for them to know and was a weight off - we were always worried about what other children or well-meaning teachers / parents might say to them at school.

Good luck with your journey and love to you all

H

Hi JB,

Welcome to the group and so sorry to hear your news. I cared for my wife who had a GBM and was 47 when diagnosed.

The short temper thing was something we thankfully didn't encounter but as H says I would definitely bring it up with the GP and see if there's medication that might help. Explaining those mood swings to the boys will be really tough. My two boys were 14 and 12 so a bit older and able to understand that when mum was acting strange it was because of the tumour. 

Good idea on the diary/blog. I started one to try and just get my thoughts down and make sense of them. I still write it now though it's become a series of letters o my wife telling her about events she miseed like my eldest sont prom last week. 

When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.

Have you or your wife been offered any counselling at all? Either way it’s always good to talk so please remember you can call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.

Hope some of this is useful and please do use this group to ask questions or just vent how you're feeling.

All the best,

Chris

Thanks Lee

Thanks H - that's a very good shout about doing it in the summer holidays.

Thanks Branoc - yes we're going through the counselling route, although this has been a difficult path to get to in the first instance too. We'll just see how things progress.

Hi Rockwell we get the mood swings also... very intense and confrontational (my wife is 51 and kids are a little older 17,19)... but they pass. She then feels extremely guilty afterwards which almost makes it worse because then I feel bad for being unhappy. I dont think you will ever "learn" to deal with it because frankly there are personality changes which are affecting the brain and they are unpredictable to say the least. The ONLY thing I try and do is to try and equate it to when I have taken medication or something affecting my mood and escalate her mood multiples thereof... it helps me justify her reactions and behaviours.... sometimes. Whats hardest is there is not much of her "old self" around and while some signs, its diminished. Brush yourself off... feel upset and angry (away from her), and then go back when you are stronger. For me I try and accept that it wont get better then am surprised when there are glimmers... its not much I know, but it's all I have!