This is tough isn't it?
I know that everyone on here has so much on their plate right now that it feels wrong to go off on one, I'm only the carer and not even the one with cancer, there are so many of you far more up against it than me. But if I don't at least type it out I think I'm going to burst!
My girlfriend has glioblastoma. I met her last August 2022. She was in an abusive relationship and I tried to help her out of it after she took a beating which left her bleeding from the ears. She and her 4 small children moved in with me in January 2023 as her abusive partner was continuing to menace her and the police were all but useless at enforcing the restraining order. Sorry if that sounds like too information but its important context.
She had painful headaches since January which we assumed were a result of the bleeding on the brain but it was not until May that she was finally sent for scans. These revealed what turned out to be glioblastoma adjacent to the lesioned area. We don't know, and probably never will, whether there is a connection between the GBM and the lesion. In any case, it made the tumour inoperable and since her general health was declining fast they decided immediately to take her on a very aggressive clinical trial of brachytherapy - radioactive seeds implanted around the tumour which would be active for 4 months before being absorbed into the body.
This was an incredibly painful treatment - she described it as having mice gnawing at her brain 24x7 for months. It also produced a lot of side effects and generally debilitated her. She had to leave her job as a result. During this time the doctors encouraged her to be admitted to hospital for sedation as the pain was intolerable - but tolerate it she did and by the end of summer it appeared that it might have worked. Although the treatment wrecked her overall health, by the end of September it did appear to have obliterated the tumour.
That lasted until the end of October when a further scan suggested that the tumour was still there. it wasn't clear whether it was the original tumour still receding or a regrowth and she should have another scan at the end of October to clarify the situation.
But the machine broke and they had to cancel her appointment. They promised to call her back by mid November to get her in for the scan. They did call, but only to tell her that the date for her next scan is 23rd December. This is the Spanish health system by the way, which is normally brilliant, but to be honest I think they are out of options and just playing for time while prioritising other patients that might have more going for them.
She is brilliant, in all this time she has never once had a "why me?" moment or felt sorry for herself, she just gets on with it. The irony of her getting brain cancer is that she is exceptionally intelligent, was a child maths prodigy and has all kinds of academic interests as well as working as a civil guard. She says her cognitive abilities are suffering but that still puts her way ahead of most of us mortals. It's me that's not handling it well.
I've taken on her kids and the care of her horses, while trying to hold down my job and keep everything running at home. I've had to spend less time with my own kids and had to cancel trips back to the UK to visit my family, including this Christmas as she has no extended family to help look after her or her children. And the reality is that she has had absolutely no treatment since the brachytherapy operation in June. Since then only medication to control the pain (unsuccessfully) and the blood pressure.
They also haven't given her any prognosis. I have the sense that the clinical trial means they are in uncharted waters and still don't know if the residual radiation will continue to keep the tumour at bay. But in the meantime the wait for clarity is insufferable. The headaches and loss of health continue and we suspect that the tumour has already bounced back but at the moment we won't get that answer until Christmas day. In the meantime the future is on hold and every day seems like treading water in an ocean of darkness - not knowing which way to swim to find land. It feels so selfish to want to see the future when everything points to hers being cut short. What a horrible disease.
Wishing the best to everyone else going through this.
HI Penguin
oh what a lot you have going on there. My heart truly goes out to you. This really is a horrible disease. These tumours are evil.
I don't have much to add other than to second what Chris has said. Hard as it is, you need to have these difficult awkward grown up conversations and sooner rather than later as these GBM tumours can be unpredictable and life can change in a heartbeat. If you can't discuss it all out loud, as Chris suggests write it all down but I'd maybe go one stage further. Tell your partner that you are going to list the points you need to and that you want her to write her answers down. It's a bit of a cheat' way but it avoids a lot of the emotions of the discussion.
Sending you both a huge virtual hug and lots of positive energy. Stay strong but remember you're not alone. We're here for you.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
As you've probably seen in this group, my husband's GBM journey came to an end at the end of October. Denial was his key coping mechanism right up until probably the last couple of weeks. He had a rough patch in early August that scared him into reality a bit but he was still saying he had months/weeks when the reality was he had been told he had much less. The denial has its pluses and minuses. I can see that more clearly now.
He very rarely spoke to me about how he felt about his GBM so don't be too alarmed if she won't talk openly. He also never asked me how I felt about it all. I would occasionally tell him how I felt but then I felt guilty about offloading onto him.
It is hard- its beyond hard- but you will find a way to navigate through the tricky bits.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
You really have a lot on your plate. My heart goes out to you especially concerning the kids.
I have likened G's decline to descending a staircase. We would see small dips over a long period of time as though he was going down one step at a time then he would plateau(reach the landing) for a while then the decline would start again. That cycle was on repeat for nigh on 3 years. From August this year we saw a quicker decline - almost as if he was hurrying down those stairs now. In the last week at home, he declined on a daily basis but was still exercising. As I've said on other posts, on the Saturday he cycled for 3 hrs in the garage , went out with his friend in the afternoon for a huge ice cream sundae and then had dinner with us and went to bed as usual. We knew he didn't have a huge amount of time but we were still thinking weeks. Something happened overnight and by the Sunday morning he was barely conscious and all speech had gone. I'll never know for sure but it was either a massive seizure in his sleep or a stroke. The first I knew something was badly wrong was when I heard him sounding as though he was about to throw up. it all spiralled rapidly from there. He was peaceful and not in any distress during those last few days in the local hospice.
We were warned from day one back in Sept 2020 that a massive seizure would be the most likely cause of death and that it could happen without warning. When G developed the DVT in his leg in August this year again we were warned that it could blow at any moment with no warning.
I hope you manage to find the right way and the right moment to have that difficult conversation. It's never easy. We had most of the ducks in a row but we never discussed what kind of funeral he wanted or what music he wanted etc. All we knew was that he wanted cremated but he wanted a headstone too. That was difficult conversation too far. I casually asked one day what did he want to wear at the end and he said something smart. I thought he might have said his running gear. So we dressed him as if he was going out for a night out with friends then stuck his running kit in there with him just in case.
At the end of the day all you can do is your best in an impossible situation. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
one step at a time...
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
