So, DH's brain tumour is growing back and inoperable this time.

[teddyneedsawash]

He'll be starting 6 weeks of radiotherapy, followed by PCV chemo. We found out weeks ago but had to transfer care to closer to where we live (long story) and finally found out treatment this week. It was the presence of the Mcmillan support nurse that really threw me.
What do I need to know about radiotherapy and chemo?

The MM nurse will help if I ask, I'm sure. I wasn't actually at the appointment, which in hindsight was daft (I'm a teacher, DH isn't working, they told us it was routine appointment ). Oncologist wants to see results of recent chest xray DH had and wait to see results of next MRI to decide where to go with treatment. Next appointment with him isn't until 14th Nov. It feels like a very long wait.

Does he qualify for Monteris Neuroblate / gamma knife surgery? A friend of mine had an inoperable brain tumour that was considered slow growing and the GK gave her an extra 10 years. Not sure if it’s available in the UK though.

My DH has stage 4 lung cancer, I've found some great help and support from the groups LC groups on Facebook. It's good to bounce 'silly' questions off people who are on the same journey.

and gentle hugs

I’m sorry to hear this.💐 Please reach out to as many support networks as you can. Usually oncology hospitals have their own in house support centres which might be worth looking into if you haven’t already.

Also Bristol do Gamma Knife radiotherapy -in case you were looking into that, as a previous poster mentioned. It isn’t widely practiced in the UK. Cyber knife is similar and is at the royal Marsden. I’m not sure if it’s an option but I thought I’d mention.

💐

I’m so sorry to hear about your DH. If you’re in need of some extra support, please look at Brain Tumour Support, they offer lots of support options

I've hit a wall. Little bit of time off work organised to give me time to rest (the last 6 weeks has been torrid) and process

Big hugs to you, your DH and your daughters. Big, big, hugs. And . Also if that's your thing and, if not .

And that time has asked me to process that I'm really fucking scared that his next appointment will tell us chemo isn't viable and his tumour is still growing

Could you ask about Temozolomide chemo, teddy? I had to switch from PCV to temo because of toxicity. It's much gentler.

I'm so sorry you've got this uncertainty to deal with especially as 14 November must seem like an age away. Is there any chance of getting an earlier appointment, maybe a cancellation?

If your dh is told that chemo is no longer viable ask what other treatment such as immunotherapy is a viable option. Don't be fobbed off - new treatments are being trialed every day.

community.macmillan.org.uk/groups/

Hi OP sorry for what you are going through. I found the Macmillan discussion forum helpful when I had cancer. Lots of knowledgeable people on there

And we're back here again. Last scan came back as stable so we had 3 months break but it's results again on Thursday. DH is sure we'll be told his tumour is growing again. And to be honest, he's having increased seizure activity and still v tired despite having had no treatment for over 3 months so I'm wondering the same. This is so horrible.

It's horrible, my DHs tumour is growing too, the waiting on hospitals is unbearable to decide next steps. ((Hugs))

There's a few of us in the same boat on the 'calm before the storm ' thread - good to vent with people who get it

@notapizzaeater - thanks, might look you all up.