More treatment or not?

Hi SandJ

a warm welcome to the group. So sorry to hear about all that you and your husband are going through. I can relate only too well to a lot of it. If you've been reading the posts you'll likely know I'm supporting my husband through his GBM4 journey. These really are evil tumours and so cruel on all involved.

We've been on this journey since Sept 2020 and until recently like your husband, mine was fantastic physically. His original tumour was in the speech and language area of the brain so the confusion and issues with speech and finding the right word etc has been with us from the start. To be honest, he had a seizure two days before his craniotomy and was never really the same after that point. 

His scan in late Sept 22 showed new tumour growth. We were told one new area of growth but after a follow up scan, when we went to see the oncologist face to tace and saw the images for ourselves it had actually been two areas and by that last scan they had doubled in size and found two smaller friends.

And that's the point where we were facing a similar dilemma to yourselves. He was offered the option of more chemo to try to slow things down but said himself he wasn't interested in longevity. He wanted quality of life not quantity. All he wants to do is to be able to keep running. He decided against taking the treatment as the risks to his quality of life outweighed the quantity. Personally, I think he made the right choice although it did come with an air of finality to it.

I guess where I'm going here is that you need to listen to all the options open here, weigh up the pros and cons and make a decision on what's going to give your husband the best quality of life in a way that he can cope with.  Write all your questions/concerns/fears down and take those notes with you to tomorrow's appointment to help you make sure you've covered everything you need to ask. Right at the very start of this rollercoaster ride I promised my husband I would support whatever decision he made, regardless of whether it would have been the one I would have made. Broken as they are, and heartbreakingly hard as it is, we have to respect their wishes. 

This group is a safe and supportive space so I'm sure others will be along to share their thoughts and experience. There's always someone around to listen who gets it, someone to hold your hand and someone to offer that virtual hug when its needed. You're not alone.

It’s always good to talk so please remember that 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, I'm sending you a huge hug. This is horrendously hard but you will reach the right decision and for the right reasons. Stay strong.

love n hugs

Wee Me xx

Hey SandJ,

Nothing much to add to what Wee Me said (as usual). 

If the surgeon is wanting to see you that is a good thing - it means they believe there is potential for your husband to regain some of the function he has recently lost.  I hope you can persuade him to attend the appointment so that you at least know what options are available.  You can then decide (together) what to do.

Whatever you are told, whatever is decided, just have confidence in yourself.  The medics are there to explain the trade-offs, but only your husband and you know what is right for the two of you.  I used to beat myself up about not knowing the best thing to do.  In the end there is no "right answer".  Some choices are likely to give better quality of life for longer than others and the doctors are best placed to advise you about that.  But there is nothing that will give you everything you want and you just have to make decisions based on what is in front of you.

The thing that kept me going as a carer was knowing that I was doing my best in a difficult situation.  And, as others have said on here, that never feels like enough - but it is all we have.  You are obviously doing your best.  Make sure you pull in help from anyone who is available (friends, neighbours, family)... and try to make some space for yourself also.

I hope tomorrow's appointment goes as well as it can.

Pete

Hi Sandj, 

I am so sorry to hear that your husband's condition has deteriorated now. 

I was in the same situation as you last May,  husband was relatively fine for a year after his operation in March 2021 but started getting worse one year later. It was confusing as scans talked about edemas but I think in the end this swelling is deadly as  the tumour 

In May 2022 . he had signed up for a second operation although wasn't that enthusiastic, but when he started losing movement in his leg, the oncologist said they no longer recommended the operation as it wouldn't significantly enhance the quality of his life. So they decided for us. Then they offered an immunotherapy drug called Avastin. If you read my profile you can see how that worked out.

If they are offering a second operation it's as Pete Stan says they must consider your husband a worthy case. 

When everything was happening to us last year I didn't know what I do now. I just looked on the Brain Tumour charity website. However  the. Mcmillan  site is very supportive as someone will always answer you more or less in real time. 

Good luck for tomorrow. I guess you need to really press the Dr's for an honest answer on the likely outcome of a second operation.

. On the other hand I see that most of the long term survivors have had 2 operations.. 

Whatever decision you take will be right. And still time to be together and supporting him. 

Thinking of you both xxx

Thank you to all - Wee Me, Pete and Daybreak 2 - your advice and observations have been helpful.

I have now written a list of questions for the surgeon that I hope cover all the information we need to make an informed decision.   My husband takes time to process any information he manages to absorb (hours/days) so hopefully there will be no pressure to make a decision before we are able to talk about it as much as he finds possible.

This is not what we had planned for when I retired - all part of life's rich tapestry I guess, but a cruel twist.  I wouldn't wish this on anyone.   The positive outcomes (always like to find something) are being reminded how brilliant our children and friends are, and having been able to have the past few months with my husband.

Thank you again for your kindness and I wish you and your loved ones all the best,

SandJ

Hope all goes ok today. I'm sure they'll give you time to think over whatever is said and talk amongst yourselves to reach a decision. It is very easy to feel pressured into making a decision there and then but take time over. Back in November, our oncologist was considerate of this. He gave us a week's thinking time but did the necessary blood work just in case my husband opted to go ahead with the additional treatment.

stay strong.

love n hugs

Wee Me xx

Hi all,

I just thought I would update you as you were so kind with your help/thoughts.

We went to see the surgeon as planned and ultimately it was because he wanted to see how my husband was; when the surgeon realised the extent of his issues he advised that although he could operate, that it would be highly unlikely to improve his quality of life or give any extra meaningful time.   The tumour is now huge.

My husband has been clear since just after Christmas that he doesn't want to prolong this stage of his situation and so he will be having no further active treatment.    In the last 10 days he has continued to decline culminating in becoming immobile today so we have had a care package put in place rapidly and our lovely GP has stopped all his medication except that needed to keep him comfortable during the final few weeks.

We are all caught between being devastated at the impending loss but also know that he really wants this to end and so will feel relief for him when it comes.

Thank you all for your help and I hope that you are all ok yourselves.

Best wishes,

sandj

Hey Sandj,

Thanks for the update.  It sounds like you have all made some very sensible decisions in a very difficult situation.  I'm gald that you are getting the required support from your GP.  I hope you are also well engaged with your local hospice / palliative care team and that you are getting the support you require from there too.  You should be getting as much care as you need.  If in doubt... ask!

It is a terrible time for you all - I feel for you.  Please keep reaching out here if that is helpful.  And if anyone offers you any help... grab it with both hands.

It's really tough to do this in the last few weeks and days - but try to get others to sit with your husband as well so that you can get outdoors, or meet with friends for a coffee.  He may last longer than you think possible and you still need to look after yourself.

Stay strong... you'll get through this.  You've done all you can in a really tough situation.

Big hug...

Pete

Hi Sandj,

Just wanted to wish you all the best for the coming weeks. Like Pete or Stan says make sure to have some backup available for when you just need to get out for a little walk and have a break. I'll be thinking of you.

Take care,

Chris

Hi sandj

so sorry to heat that it wasn't better news. These tumours are so cruel. I can totally relate to the feelings of impending loss but also being torn by the fact that he just wants it to end. My husband is saying the same. He regularly says "it's time I was dead so everyone can get on with their lives." It's tearing me apart.

We're seeing a slow but steady mainly cognitive decline and to be brutally honest, I just hope his passing is swift and painless (well as painless as it can be) In an ideal world he would want to just drop while out running. His running days are sadly numbered now as he can't see very well. He restricted it to a short run near the house earlier but I suspect that the "last run" isn't too far down the road. He's having issues with seizures too. It's heartbreaking.

Sending you a huge virtual hug. Stay strong and remember we're here for you.

love n hugs

Wee Me xx

Hi Sandj and Wee Me. 

I am sorry to hear your husbands are rapidly deteriorating, but both seem to have clear what's happening to them and what they want. 

I did see a second oncologist when I got news there was no chance of a second operation for my husband. She confirmed not to go ahead with the operation and I asked about the mental state. She said in her experience those that accept their condition and the pending end did much  better... 

My husband had said the weekend before that he had reached his limit and told his older son he didn't want to be a burden, but we didn't really face it head on to know the exact time he had left. He was still on avastin and apparently if you stopped that you would have one to three months, so we weren't really prepared 

How brave your husbands  are, and you. 

Thinking of you both and sending you positive thoughts and strength to pass these difficult days. Xxxx