How on earth do I process this?

Oh honey, what a terrible thing to have to go through - I’m sending big hugs to you and your family

You are all going through the worst part of the process right now - you don’t really know what’s happening and it’s all so new and scary. Don’t beat yourself up for resorting to a stiff drink - I certainly did when I was diagnosed with a grade 4 astrocytoma three years ago. But clearly it’s not helping you so just try find something that does - maybe ask your GP if they can prescribe you something. This is an awful time and there’s no harm in asking for help asap

I can’t tell you how things are going to go, and I’m coming from your mum’s side of the experience, so I can’t tell how you’re going to feel. But for me, the first part was the worst, and the more I know, the easier it’s been, even when the news wasn’t good. You’re there for your mum, which is all you can do for now, so the next most important thing is to look after yourself - try to eat, even just a little, maybe exercise a bit to tire yourself out, watch dumb TV, cry alone or with friends - nothing is the wrong thing to do if it helps

I wish I could help more but we’re all here if you have more questions or just want to talk,

from Alex xx

My name is Graham , not sure because memory has been loss, but talking to my family I was feeling sick falling other etc. Omitted to hospital for three months they only think I remember all family sat around my bed, consultant delivered the news that a rare form tumour, chemo didn’t work then the three months to live came. That’s all I remember three years still here got stronger living on my own because x had affair while in hospital. Got lovely kids and now six grandchildren. Last scan showed it’s now inactive. Okay my life has changed but still here enjoying the grandkids, do that grandparents thing spoil them rotten. My sons shows pictures f me in Hospital with tubes everywhere, bruised where I kept falling other. I don’t remember anything, at times I think why because my jobs relied on my memory. New memories fine but older no. Hopefully my tumour journey gives you some hope for your husband recovery. If I can help in anyway please don’t hesitate to contact me. I can ask my family name of tumour I’ve got if it helps. 

Regards and special wishes for you and family .

Graham 

Sorry just read again i meant to say your mum so sorry. But as you see still get confused but still going. 

xx

Hi Graham,

thank you so much for sharing your story with me. What an inspiration you are. I’m so sorry that this happened to you and the situation with your ex must have made things even worse. How wonderful that you have so many children and grandchildren around though, that must be lovely. I will certainly be bringing my children to see my mum as much as possible. They are only 3 and 5 so they don’t understand what’s going on right now just that nanny’s feeling a bit poorly and I think that’s how my mum would want it .

i really appreciate you taking the time to reply to my post, it has definitely given me some hope, you are a true inspiration. 

Hi Alex,

thanks for taking the time to read my post and send such a lovely reply. I’m really sorry you’re going through this it must be so awful. I feel selfish being so upset, I think I’m more upset than my mum but I think this is partly because the tumour is effecting the way she thinks and she’s getting herself confused a lot and doesn’t really understand what’s going on. 

I have already made an appointment to see my gp on Monday. I already struggle with health anxiety and am on antidepressants but I think a review with him to see what else I could be doing is a good idea, as well as giving up the alcohol (something which I’ve been debating doing for a while anyway as it generally doesn’t help my mental health) 

it’s reassuring to know that it gets easier. I know I won’t ever be okay with it but I really want to come to terms with it and process this in a healthy way so I can be as strong as I can for my mum and the rest of the family. We don’t know what we are dealing with yet but the doctor did say the radiographer thinks it’s quite an aggressive one so we could be in for a real fight. Did you find that once you got your diagnoses that things moved quickly in terms of appointments etc? The waiting and not know is just horrendous. 

thanks again for reply,

Mel x

Hi Mel, there’s absolutely no reason to feel ‘selfish’ - you’re going through something horrible, and it affects you in a different way to your mum, but it still affects you deeply. Sometimes I think my condition is easier for me than my family, in ways that are hard to explain, so give yourself a break. Make it through these early times any way you can, and be kind to yourself x

In practical terms, an aggressive tumour does often mean that things at the hospital will move quickly (I was diagnosed and operated on within a month, followed by 6 weeks of chemo and radiotherapy). But the location and type of the tumour will be important so do take notes and ask questions - I’ll be very honest here, the hospital was fantastic as regards treatment, but less so for communication. Oh, and if your mum is told not to bring anyone to her appts, go with her anyway. I wish I had been allowed to take someone with me, for support and to pay attention

Please ask me anything you like, no holds barred, and I’ll try and help if I can. And I hope you get some quick help from the GP - that’s a smart step

look after yourself, and you know where we are if you want to talk xx

It certainly is tough, it was such a shock as we weren’t expecting any results yesterday we thought the doctor was coming to see her today. But as it turned out they sent the macmillan nurse over first before the doctor who followed about 20 minutes after  which left us all panicked and very confused. We were never told that this was a suspicion of theirs either, following a CT in December we were told she had a stroke originally.

wow yes things certainly did move fast for you and it’s great they are so on top of it. I’m petrified they are going to say that it’s been there a long time and spread to other places or that it’s not going to be operable. In which case I have no idea what happens. I do know that none of us want to know an estimation of how long she has left. Is that something you can request them not to tell you? 

thank you for being so supportive and make sure you look after yourself too x

Oh wow, how upsetting and scary! But yes, not entirely surprising as my experiences go..  I suppose I comfort myself by thinking, would I rather have a doctor who is an ace at their job, or one who has time to communicate well? Both would be great, but if you have to choose, option A is definitely my choice

I wish I could answer your question but I can’t say how your doctors are going to be - it’s certainly worth a try but I guess they have to go with an answer that’s best for your mum. My oncologist did ask if I wanted a worst/best case scenario (which I didn’t) - I stuck with the phrase ‘hope for the best, prepare for the worst’ and it’s served me well so far

Just get through this part, you’re stronger than you think you are, I promise xx

HI

I've already replied on your other post in the group but thought I'd share these blogs with you that I wrote for MacMillan a  couple of years ago,

Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

“I’m fine”: how do you really cope as a carer? - Macmillan Online Community

love n hugs

Wee Me xx