Mum has a GBM

Hi TPK29,

Welcome to the group. I'm really sorry to hear about your mum. My wife was diagnosed last year and is only a bit younger than your mum (47 when diagnosed).

Like your mum my wife has always been super positive and it's helped her get through some very difficult periods in her life. At first she was in shock but slowly she realised she simply could not face that this was terminal. Therefore she has an outlook similar to your mum's. She talks about being given the all clear and she makes plans for the future e.g. getting her driving licence back.

I know (and she knows deep down) this is make-believe. But, I wouldn't have her any other way. If it's what she needs to do to cope then so be it. The only time we couldn't do this was early on when we had the difficult conversation about what if the worst should happen e.g. setting up power of attorney, any wishes for funerals etc. 

It's hard to remain positive all the time even as I watched her this evening stumbling because of a weakness now developing in her left side. What I do find useful is having close friends who I can be honest with and tell them how scary that is. That includes the people in this group because I know they all understand. You're scared and that's totally natural, it is scary but I think as much as possible try to remain upbeat for your mum. Like I say just make sure you have somewhere else you can vent though because it's exhausting keeping that up all the time.

I'm glad to hear you might get some counselling. Wouldn't hurt to ring Macmillan to see if they can offer anything as well (0808 808 00 00 ). As much as you're worried about your mum please concentrate on being well yourself right now, it's not selfish, she's going to need you. Find whatever it is that keeps you mentally fit. For me that's havign breaks through the week when a friend will come in and care for my wife and I go for a walk. I also need to keep on top of fitness and diet as they're good barometers that if they're suffering I probably need support.

Thanks again for your sharing your story and I'm glad you found us.

Sending a hug,

Chris 

So sorry to hear what you are going through. I am 75 and looking after my husband who was diagnosed in September. It came totally out of the blue after a few symptoms in August. Unfortunately he has not been able to have any treatment as it is too advanced. I understand how you must be feeling because of my own two children. My son also works for NHS and in the first few weeks he was in such a state, breaking down all the time, talking of giving up work to come and support us. He lives a couple of hours away. He has a really supportive boss and she allows him to come here and work from home a couple of times a week. My daughter lives locally and has put her private business on the back burner to help as much as she can. In the early weeks of his diagnosis my husband talked about getting his licence back, buying a new car, going on exotic holidays etc. we just humoured him but now he has so little mobility that we struggle to get him anywhere. His prognosis back in September was months. We know we are on borrowed time and my heart breaks for my children and what they are witnessing and going through. Your mum will be so proud of you. Keep strong and seek out some counselling, it really helps. Good luck. X

I hear you TPK29,

Sorry for the hard time you are going though. My partner is also resolutely optimistic about the future in spite of everything we know about this dreadful disease. It's probably denial, but I think the alternative is worse - the moment she feels its all hopeless is what I most dread so I'm going along with it. I sometimes think acceptance would be easier as there is so much to plan for which can't be done without implicitly letting on that you think the end is inevitable and in her case the medical team hasn't said this to her yet. She has horses and I keep driving half an hour there and back every day to clean them out, feed and exercise them. I've been doing this for 4 months before and after work as she has been too weak to go. I'd like to re-house them but she has lived for her horses all her life and that would finish her. So I'm doing it even though it makes no sense.

Regarding work, In my case I have found it easier not to take any time off for this yet. I have spoken to my boss and a few close colleagues to ask if they can help and cover me in meetings if I'm unable to go from time to time, some of my customers are also aware and cut me some slack if need be. I think this is easier than taking the time off and having to deal with jumping back in when you are not really ready. I don't think it will ever feel like you are ready to go back to work while all this going on - try if you can to do a bit of both, even if it means not firing on all cylinders. I find myself struggling to focus on work a lot, but it does also help to stay busy whenever possible.

Wishing you all the best

Completely agree with everything Penguin says here. Work (and being a Dad still) is about all that's keeping me sane sometimes. 

The only time when I do drop the pretence is just before we get scan results. Sometimes I worry that my wife has actually convinced herself that she's cancer free so I suggest we go in expecting bad news but that we'll celebrate if it's more positive. 

Hi TPK29 

I’m so sorry to hear about your mum. My husband is 54 and diagnosed out of the blue (pretty much) after becoming very confused and forgetting things, objects and people .. including us. He has always been positive and I was worried at the start as he talked a lot about getting better - to be truthful, I think some of this was that he was so confused and unwell (he nearly died) that of course he didn’t hear what I did at the start … it’s taken him time to fully understand. Although I still worry that he has set very high expectations of the future, it helps him remain positive. We have two children aged 10 and 12 and I’ve tried to be honest with them and said we simply don’t know but this is what we are told - it could be more or less time. I do think my husband has more awareness than perhaps he shows - we have done our Wills and an LPA too as he was so ill before he was diagnosed and before surgery that he it simply was like he had dementia. It’s a fine line to tread isn’t it … I speak to friends close to me and they understand my need for realism but I don’t dampen his positivity. 

As for work … I am a Headteacher (my husband is/was too!) and I have remained at work for the moment. The sense of routine and ‘normal’ helps me … the children never cease to make me smile! I have been very honest with staff and our families - they are very supportive. I take time for appointments and once a week try to spend some time with my husband - I do lots of work outside school hours and people appreciate this and understand the need for us to spend some time together away from our own children. I am acutely aware I will need some time in the future so want to ‘bank’ it for that - I don’t know what the future holds.  I appreciate this is how I deal with things and everyone is different - it works for me. It’s also taken me some time to get back into my running and exercising but this is a great ‘downtime’ for me and allows me to chat to my running buddy about our situation or not … sometimes we just chat about nothing! It’s all taken a great deal of mind over matter and I can’t lie, some mornings I wake up and feel like I don’t want to get up .. like you I can be up till the early hours. 

It all takes time to find your way again and we are all different. I hope you find your way soon. We are all here for each other in this group. Take care x 

I am so sorry about your mum… my mum is 64 and got diagnosed with a grade 4 glioblastoma she had a cranioctomy and then had a month of radiotherapy and chemo. 

it’s great your mum has been really positive my mum was the same at the beginning. It is difficult to process and deal with at the same time when you feel like your whole lives have been turned upside down. 

I work in healthcare also and when my mum first got ill they thought she had a stroke and I was in hospital overnight with her and work granted me carers leave for a few days. However the following week my mum got worse and they found the tumours I was the same as you I really struggled mentally as I work full time the gp signed me off for 1 month due to family related stress. I felt like there was no happy medium tbh because when off work I was kept busy with my mum but I spent a lot of my time overthinking everything and I also used to have panic attacks. I returned back to work and they were great and understanding with everything it can be overwhelming sometimes but it distracts me and helps me to have a bit out a routine. 

look after yourself…and do what’s best for you x