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Original poster

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

42 replies

teddyneedsawash · 10/11/2018 19:27

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?

OP posts:
echt · 11/11/2018 06:46

Someone with experience will be along soon. Meanwhile, I'll hold your hand, anitpodeanly. Thanks

Original poster
teddyneedsawash · 11/11/2018 16:42

Thanks echt - I think I'll need a virtual handhold now and again. DH had his first wobble yesterday; he's been relentlessly upbeat so far.

OP posts:
Joinourclub · 11/11/2018 17:08

I’m not a person with any experience or wisdom to offer, but I’ll hold your hand while echt sleeps!

7yo7yo · 11/11/2018 17:11

I’m here hand holding. No advice I’m sorry but Flowers

Eloisedublin123 · 11/11/2018 17:12

I’m here too xx

Usuallytootiredbuthappyanyway · 11/11/2018 17:14

another person here with no advice but here to hand hold

Original poster
teddyneedsawash · 11/11/2018 17:42
Flowers
OP posts:
Dowdydoes · 11/11/2018 17:44

The two together are tough for most people but there are so many variables. You will probably be best getting back to your Macmillan nurse, they will be able to be more specific.

Sorry you are both having to do all this.

Dowdydoes · 11/11/2018 17:45

Am so sorry I misread - not together but in succession which makes it a little easier usually.

Aaaahfuck · 11/11/2018 18:32

I have no experience of this op but just wanted to send my love in what must be a horrible time.

Original poster
teddyneedsawash · 11/11/2018 18:36

Aaaahfuck - I need your user name Grin

OP posts:
CMOTDibbler · 11/11/2018 18:42

Mostly, the worst bit of radiotherapy is trailing back and forth every day. He'll have a mask (sometimes called a shell) made to hold him still and in the same position, and then will have a CT (and possibly an MRI) while wearing it. Then there will be a week or so before he starts treatment as they will be working out the best way to give the radiation to the tumour while minimising it elsewhere.
As treatment goes on, he might get very tired - any problems at all you just talk to the radiographers

Original poster
teddyneedsawash · 12/11/2018 06:59

And herein lies the problem with Mr EternallyOptimisticBorderingOnDenial... I imagine we are going to have many rows about him accepting that he needs to rest!

OP posts:
OllyBJolly · 20/12/2018 18:30

Been there with my sister. Sadly she didn't have the right chromosomal code and didn't complete the cycle for the PCV.

She had six weeks of radiotherapy and was absolutely okay for the first three, and then very, very tired for the last three. By the end of the six weeks she had some issues with mobility - mainly a weakness down one side. McMillan were great at organising OT and physio visits. There was quite a bit of hanging about in the radiotherapy department - she lived rurally and was collected and returned by patient transport. I would travel up a couple of times a week to sit with her.

We found the McMillan nurse to be incredibly useful - right down to advising on benefits to claim and support groups for relatives.

With hindsight, I'd have been a bit more challenging about the reasons for the treatment. It is gruelling and the side effects can be severe. It might have given my sister more time, but if a lot of that time was coping with neuropathic pain, confusion and cognitive impairment, I'm not sure it was worth it. The oncology nurse did say that we could just say no to treatment. I was a bit shocked at that, why would you turn down treatment that prolonged life? I now think that you have to balance quality with quantity of life.

I have to add, two "fellow travellers' who had surgery and treatment at the same time are both doing well. The treatment stopped further growth and one is now back at work, the other happily in retirement. They are both on "watch and wait" treatment with regular MRIs three years later.

I fervently hope and wish your DH reacts well to treatment and recovers well. And you have to take care of yourself too.

Bluewidow · 20/12/2018 18:35

I’d talk to the macmillian nurse as it will depend upon his specific type of radio/ Chemo that’s he’s being given. My husband didn’t get the chance to have treatment but when we went for his chemo/radio talk we were told his type was quite soft on the side ecfects.

HitthefloorforTaintedLove · 01/03/2019 23:13

Thinking of you Teddy and hoping you and your DH got the support you needed. 💐

MyNameIsArthur · 02/03/2019 19:26
Flowers
Original poster
teddyneedsawash · 25/04/2019 17:20

If forgotten I'd even started this thread. He's due to start PCV cycle number 2 tomorrow, the first week last time was horrific (he has no recollection), the next 2 weeks weren't much better and he's very slowly improved so that he's been pretty good this week...

Just had the weirdest conversation. He went to see his consultant by himself today to ask questions. He's come home, told me very calmly that the consultant says prognosis for this type of tumour is typically 5-10 years (he's forgotten that I asked and got a very vague 7-20 years in response). He's so calm. And all I can think is that our girls are likely to lose their dad before they're out of their teenage years.

OP posts:
AhhhHereItGoes · 25/04/2019 17:27

I'm sorry you are your family are going through this @teddyneedsawash - I have no experience of this at all but hope the next round doesn't go too bad. 💐

JeNeBaguetteRien · 30/04/2019 07:56

Thinking of you this week Teddy.

It's a huge thing to be thinking about prognosis and up to what age your girls will have their dad around - that sounds draining. Try to get through each day for now and see if there is any support or just someone to listen to how unfair this is. 💐

Original poster
teddyneedsawash · 30/04/2019 17:25

Thanks. Weirdly, this cycle of chemo isn't taking it out of him as much. He says he feels worse, but I think that's because he's actually awake 🤣.

I've had a couple of people this week do the whole "you've just got to focus on the fact that this will make him better" thing but they don't know that's not actually true. OK, so he might be better for some time (although he actually didn't seem ill before the treatment) but the aim isn't to cure. I think we need to chat about who gets to know that bit of information.

OP posts:
Original poster
teddyneedsawash · 12/10/2019 20:31

Fuck it. We may have reached the stage where chemo is doing more harm than good but we won't know for a month what the options are. We've plodded on, taking what will be will be as our mantra but I'm really struggling with this.

OP posts:
AliciaWhiskers · 12/10/2019 20:34

@teddyneedsawash Flowers here for a hand hold. So sorry

Honeyroar · 12/10/2019 20:38

You're allowed to struggle and be upset yourself. It's shit and it's horrible for you too. Are you getting much support from Macmillan or anyone? Hugs to you.x

TheABC · 12/10/2019 20:42

Hand hold, here. Did the MM nurse point you towards a support group or similar? They may have walked down that path already and give you some idea of what to expect.