Glioblastoma wild type

Hi Rols,

Sounds like a similar story to my wife. She had what looked like a mini-stroke only to find a large tumour in the right frontal lobe. The craniotomy has bought her time but didn't resolve the disability so now she struggles with walking like she's 90 (she's only 48). 

It's hard to offer comfort in such brutal circumstances but I can tell you this. We are now 7 months post diagnosis and I thought we'd see a steady decline but I'm sat writing this at the end of an amazing week down in Cornwall. I never thought we would still be going away at this point but here we are. We've done so much I didn't think she'd manage and the children have many more happy memories of their mum.

On how to cope I've found groups like this and talking to others in a similar situation really useful. We plan 3 months ahead at a time and just try to cram in as much as she thinks she can manage. But do feel free to ask more specific questions about treatment if you have any.

And don't forget to take care of yourself as he'll need you more than ever.

Best wishes

Chris

Thank you,  so often,  I think I'm alone in this.

Is your wife stable on her feet.  My hubby fell over yesterday.  He usually manages around the house,  but uses the wheelchair out an about. 

Worried about coping out on a holiday. 

He starts the 6 month cycle of 5 days of chemotherapy a month.  The dose is much higher. I'm worried how he will cope. 

Have you been through the 6 month cycle yet? If so, was it very different from the initial chemo radiotherapy which was for  6 weeks. 

Thanks for replying 

Rols

HI Rols

a warm welcome to the group. So sorry to hear about all you and your husband are going through. I can relate only too.

I'm supporting my husband (now 53) through his GBM4 journey. He was first diagnosed in Sept 2020, He too had a craniotomy followed by the six weeks of oral chemo/radiotherapy combined. He was offered the further 6 months of oral chemo in Jan 2021 and he declined all further treatment at that point. In Sept 2020 we were told he had 12-15 months  and he's still with us, albeit we are now approaching the final stretch of the journey.

HIs symptoms are cognitive rather than physical and always have been. He had a seizure two days before his op and to be honest he has never been the same person. His initial tumour was in the area of the brain that controls speech, language and understanding and the symptoms until recently have been similar to mild dementia.  Two further active tumours were discovered in early Oct 2022 and a further two areas in Nov 2022. The progression has now caused more physical symptoms - loss of eyesight in his right eye, greater confusion and weakness/loss of function in his right hand. We speak to the oncologist on 27th and I'm already dreading that video call.

As he never took up the offer of the further double dose chemo I can't fairly comment on that. It was offered to him again in Nov 22 and he again declined choosing quality of life over longevity. He's a marathon runner and all he wants to do is run every day. Even in his current failing state he's still able to run - Lord knows how!

This group is a safe and supportive space as you've already seen and I:ve personally drawn a lot of support from it over the past couple of years. There's always someone about to listen (well, you've found that bit out already- thanks Chris) who gets it, someone to hold your hand and to offer a 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.

As Chris says, please take time for yourself here. Taking "me time" isn't selfish, its essential to help you keep your batterie charged. I'll not lie, this is a rough emotional roller coaster ride. Even 10 minutes sitting quietly with a coffee and a book can be huge help. There are no hard and fast ways to cope here. We all just do our best. A few months ago I shared my story in a community blog for this community. Here's the link (just in case it helps) “I’m fine”: how do you really cope as a carer? - Macmillan Online Community.

For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong, You're coping with this so much better than you give yourself credit for (you'll just need to trust me on that).

love n hugs

Wee Me xx

She's fairly stable but can't lift her legs so shuffles everywhere meaning trips are more likely but we've only had one fall so far (touch wood!). 

She uses a walker which has been a God send. It's an expensive one with big proper rubber wheels but has been worth very penny as it's kept her mobile.

We're on cycle 5 of chemo starting next week. It's been fairly easy going to be honest. She had a little nausea but that's passed. It does leave her tired though. 

As WeeMe says you are definitely not alone. There's a depressingly large number of people going through something very similar so there's usually someone here who can relate to whatever aspect it is you're dealing with.

Take care and stay in touch

Chris

I've been having a rough week,  my hubby has been pretty unstable all week and so much more dependent on me. Early in the week he was falling against a wall, cabinet and the bannister,  then Friday he fell in the bathroom,  I found him on the floor. 

To add to this, his memory is getting so much worse. We saw the oncologist on Thursday and I told her about the falling,  she is concerned and has ordered an early MRI. Should have been done in a further 4 to 6 weeks...

I am worried that it's gone further  and quicker.  I'm just not really coping. - hate to admit it!!! How things have changed in such a short time. 

I will check out the links that you included. 

Thanks...it helps just getting my thoughts and feelings out. 

Rols

Hey Rols,

Sorry to hear that.

Have you had a visit from Occupational Health?  It sounds like you need some modifications to the home to keep your husband safe (frames, grab handles, etc.).  Also they can advise you on how to help him to get up when he does fall so you don't injure yourself.  They can have long waiting lists, so a call to your GP may be in order telling them that you are need help now or you are worried you will not cope.  Hopefully that will get them to expedite it.  

It's no surprise you are finding it hard to cope - this is a really horrible disease and it takes its toll on carers as well - no shame in admitting it.  Don't be afraid to reach out to family, friends, neighbours and let them know what you are going through.  I built some strong relationships with my wife's friends and made sure that they knew when I needed help.  I had people who would take her out for a few hours, or just sit with her and have a cup of tea so that I could run around and do the washing, or get out for a walk, or just get an hour out at Costa to dump all my worries on a good friend.

I hope the last couple of days have been a bit better.  As others have said - feel free to keep reaching out on here.

Big hugs...

Pete

Hi Rols,  I am so sorry to hear about your husband's recent decline. I would try to get some more help to also ensure you are keeping your strength up and your husband is as comfortable as possible. I had to get the ambulance once when he fell over as no neighbours around. 

Things take time to set up and best to be prepared. I paid privately for someone to come a couple of hours in the morning, had cancer nurse visits nd a volunteer psychologicist. I could have got more help probably but my husband had a brain bleed so died suddenly 

My husband was given Avastin which stopped some of the leg weakness briefly but with more side effects so might not have been worth it. 

You can see more details in my profile. 

It's great if you can organise some friends to come over for a chat from time to time. My husband enjoyed that once he had the visit. He couldn't leave the house as we had no lift. 

Thinking of you. It is so tough.

Hi Chris, 

It all happens so quickly  and with my husband who used to be an active man,  seeing him shuffle  with a  walking stick or needing to use a wheelchair is heartbreaking. 

He is frustrated,  as there are so many things he can't do because he's disabled on the left, in particular his arm and hand  (he's left handed) shoelaces,  washing 1 hand,  putting on socks,  putting toothpaste on a tooth brush to name a few.

From being independent to being dependent it's a huge change. 

It's not the physical side that I'm struggling with though...I am actually managing all the stuff needed pretty well,  it's the emotional side.  Today I had a really useful counselling session  and feel so much better.  It was suggested that I start a private journal,  I think it's brilliant idea, to get my emotions and thoughts down,  I think it will help me get the emotions out. Someone else reading this may benefit from the  suggestion too.

Tomorrow is the last day of his 1st chemo cycle of 6 months. He had an urgent MRI on Tuesday because of a sudden weakness and falling over.  We have an appointment next Thursday to get the results.  I'm pretty nervous about it.

I really like the planning ahead thing. In 2 weeks we are going to visit our son. Hopefully the results of this early MRI are good. 

Thanks for your reply and advice 

Rols

Hi Wee Me,

Thanks for the reply,  so many  similar stories.  We were told that my hubby would have short term memory loss, and it seems to get worse by the day .

It's such a lot to take in, obviously unexpected in each case.

My darling hubby faces out in conversations,  so didn't hear the surgeon and the oncologist say 'this is not a cure'

Now I fully understand that there is a possibility,  not sure how big a possibility,  but he talks about travelling in years to come  and making plans  for our future.  I want to make  memories now, he want to finish all the treatment... and then travel and do stuff. it's such a delicate and frustrating position to be in.

My wonderful brother is  always telling me 'don't  build bridges until you come across a river wide enough to build a bridge.  Otherwise you are wasting your time and energy.' 

I'm pretty good at building bridges....

Thanks for your support and reply. 

Sending a virtual hug 

Rols

Hi Rols. My husband seems to have had a similar attitude to yours. He didn't want to travel much til the treatment was over and didn't have any bucket list. He didn't bother to browse Google much, just saw something at the beginning when he was Diagnosed that mentioned 5 years + life expectancy.

He had all similar weakness but on the right side. The tooth brushing difficulty amongst others is so frustrating for them and everything you describe so familiar 

Your idea to write a journal will be helpful and to write here on this forum. I hope you can make your husband as comfortable as possible and let him to what he would like to do. I had some ideas of what we might do, trips out etc but my husband didn't want to do much . It was a fine line on giving him some diversión to bring him out depression and on the other respecting how he felt. I think I erred on the optimistic side. I think we were both a bit evasive. 

Once he got worse for the last 5 months or so he wasn't reading or listening to music which were his great passions. 

There's no easy way. Just get all the support you can.

Xxx