Hello
My husband was diagnosed last june after complaining of wax in his ears and started to feel generally unwell, his comprehension getting poor, after a few weeks of being given almond oil from the gp he was so unwell on a bank holiday Monday we went to an out of hours gp service at the local hospital and was given a cat scan that showed a lesion. He was admitted to hospital then transferred to a specialist hospital with partial removal of tumour and the diagnosis. Radiotherapy and chemo followed and after a break further chemo tablets at home followed, after the 5th cycle an mri showed another node developing and the chemo was changed at that point. He has now had 2 rounds of the new drugs. Things are changing he is now taking steroids to help with newer symptoms and anti seizure tablets for the the multiple mini seizures. We've just had another mri just over 3 months from the last one and meet the consultant on Tuesday, I'm expecting bad news and although we have both been hearing the same thing, my understanding is much different from my husband. I'm not sure what happens next and how my husband will cope with the reality that will be facing us. I don't really know what I'm asking for still in the dark about reaching out and what to expect.
Thanks
Hi Lornaann
a very warm welcome to the group. So sorry to hear about all you and your husband have been through. I get it!
My husband was diagnosed with a GBM4 in early Sept 2020 so I know where you are coming from and can relate all too well to what you've said. He was diagnosed after having a funny turn out running when he realised he couldn't form any words or read. A scan showed a tumour in Broca's area of the brain about the size of a golf ball. He had surgery to debulk it followed by the 6 weeks of radiotherapy/oral chemo. After that he declined all further treatment.
Like you I don't really know what to expect and have come to realise that my husband is in denial about a lot of what's going on. However, he's content so why burst his bubble? In some respects it feels cruel, by my kids (22 and 24) and I humour him. Its easier that way. Physically he's still really fit. He's a marathon runner and that physical fitness is keeping him going. Running is about the only thing from his old life that he can still do but I accept the days of being able to do that may be numbered and dread each MRI as it approaches. Mentally he's quite confused at times, gets muddled with his words, has virtually no short term memory and really struggles to read more than a few words. That's hard to deal with.
The timescale we were initially given has long since expired and he's still here. The oncology team have been no help whatsoever. In fact it was through frustration at the lack of information from them that I reached out here for support and information. Every scan, like you, the kids and I prepare ourselves to hear the worst and so far its been "no significant changes, see you in 3 months". There's been no explanation as to why we can see him slowly deteriorating. My husband doesn't want to know the current expectation so we are just drifting along in No Man's Land, knowing what will come but with no idea when.
Having just re-read this, I'm not sure I've been much help or comfort for to you but please be assured I understand where you are at. I reached out through here and have found this group to be really supportive as is Carers only forum - Macmillan Online Community. I've had a chat with my GP and know that when the time comes that we need a care package put in place that I can just call them and they'll set it up. Even just knowing that that's all I need to do initially when the time comes helped to put my mind at rest. Its the little things...
It’s always good to talk so please remember you can also 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.
For now though I'm sending you a huge virtual hug. Stay strong. As a friend tells me when I'm having a rough day dealing with the enormity of it all, "it'll pass".
hang in there.
Love n hugs
Wee me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
HI
my other half has done a few of the munros over the year. My dad has bagged them all, some of them several times.
The unknown is the scariest part of this journey. I also feel guilty if I plan ahead for things. I'm a huge music lover and attend as many live gigs as I can but for the past year or so I find myself fretting as I buy tickets for shows months in advance about where we'll be by then. He never comes with me, never did, but I still stress about it.
He likes to plan ahead for things, gives him something to focus on. For now his focus is on running the London marathon in October. I fear that may be a bridge too far but time will tell. It gives him a sense of purpose and a reason to keep pushing on so who am I to burst that bubble?
Please also make sure you take time for yourself here too. It's draining riding this emotional rollercoaster day in day out so make sure you find time to do the things you enjoy and that recharge your batteries. For me that's going for a walk, yoga, journaling, writing (I'm an indie author) and simply catching up with friends for a coffee. Even 10 minutes sitting down with a coffee/glass of wine and a book can be enough.
hang in there
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
