Hello everyone x
So, as from my last post, I went into the New Year with a heavy heart .. D has been doing so well and the thought of the New Year was tough .. would this be a good one for us? D had his routine three month scan on Sunday. We received a call on Tuesday to say that some re-growth had been found in a different place - they have said it is small. We have the hospital on Wednesday to find out more. D hadn’t been too great over Christmas and said he felt ‘different’ and did call our nurse after Christmas. He has been given antibiotics as he has been feeling tired with headaches and also a swollen and weepy eye. He has also has blocked sinuses … they said it could be a virus and said to go to the GP for the antibiotics. It’s difficult to not think it’s connected to the new growth .. or just a coincidence? We will find out more on Wednesday and I’m trying to make sure we all keep ‘level’ and not jump to any conclusions - it’s ’business as usual’ and a weekend of sport for our boys! However, Wednesday seems a long time away … fingers crossed
Good luck, Sunflower. We also have results meeting Wednesday. My wife had a surgery for regrowth in December and then was in and out of hospital for fever - maybe a virus, maybe infected wound. Seems to have calmed down now but we're very apprehensive for what happens next. Also, the pathology of the regrowth has come back as unmethylated, when it was highly methylated before (doc is querying) and if this is correct the doc says this limits effectiveness of any other treatment he can give. So - Wednesday will have some answers no doubt, but it feels a long time away. Good luck and hugs.
HI Sunflower73
so sorry to read that things have changed slightly. It's too cruel.
Hope that Wednesday's appointment gives you some options. Will be thinking about you.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hello HW66. Thank you for your reply. It’s a hard wait for sure … Wednesday is going to be a tough day … sending you love and strength. Let’s catch up soon x
just wanted to say I'll be thinking about you tomorrow. Hope the appointment goes as smoothly as these things can.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi Sunflower I really hope your results held some encouragement. Ours were good - no new growth since surgery in December. We're still not clear on what next treatment will be, bc my wife hasn't fully recovered from the operation yet and the doc won't do anything till he's sure she's ready. We'll know more in the next two weeks. Good luck, sending hugs x
Thank you everyone for thinking of us x Not so good our end - a new tumour has grown deep into the brain so surgery not an option. Radiotherapy not an option either. We can have another round of chemotherapy using temozolide again and are being put forward for a trial using cannabis oil. We have an appointment Monday at the Velindre Cancer Care Centre. I had played out all sorts of scenarios in my head prior to the meeting but not the ‘deep in the brain’ one. We told our two boys (11 and 13) and they shut the conversation down. Their teachers in secondary school have been amazing and spoke with them today .. our youngest cried … he’s a closed book usually and I haven’t seen him cry in this 17 month journey at all. Heart breaking x So, we find out more on Monday but I feel like this is a race against time .. and the clock is ticking. I feel numb … I didn’t know what to say in the meeting and cried more when we had the clear scans. I feel like the fight is well and truly starting now and I’m terrified x
Oh I'm so sorry to hear that it wasn't better news.
We were in your position in 2022. One scan had shown the start of maybe something and when we had the next 3 monthly MRI we were invited into the hospital to see the oncologist face to face. That was the first time in two years we had seen anyone face to face and like your journey the scan showed new growth. G had like his own wee solar system going on- 2 obvious new tumours and a few wee bright dots.
He was offered chemo but declined- same as he had done in Jan 2021 after the original 6 week treatment cycle. For him quality was preferable to quantity of life. That's a harsh reality to face but something you need to perhaps consider here. There's no one size fits all way forward and as a family you have to take the path that works best for you.
I'm pretty sure you've picked up our tale along the way here but G remained reasonably stable until August 2023. He was still out running up until then and only after an issue with multiple focal seizures plus the development of a DVT did he finally hang up his running shoes. He was still physically active and generally Ok-ish up until 6 days before he passed away peacefully.
Being terrified is allowed. This is a scary gruelling journey into the unknown so please don't be too hard on yourself. Try to take some time for yourself to recharge your batteries. Me time isn't selfish its essential.
Talking to your kids about the journey is hard...heart breaking at times. My kids were older but they're still your babies. Kids are also more resilient than we give them credit for. My personal guidance would be to be open and honest with them in language they understand but don't scare them. You know them best and I'm sure you'll do a great job guiding them through whatever is to come. I did find this useful link on the website for you- Talking to children and teenagers about cancer | Macmillan Cancer Support
Please remember that you can reach out here anytime. PM if there is something you don't necessarily want to ask so publicly. We're here for you. You're not alone.
sending you all a huge virtual hug and lots of strength.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I'm so sorry to hear this. So much for you to take in and deal with. Praying for strength for you, and sending love x
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