Glioblastoma multiform grade 4

Hello Jac1966,

Sorry to read of your situation, one that all on here can relate to.

From my own experiences with my late husband, I understand fully the stresses of delays in treatment owing to hospitalisation and the frustration of not having, or in our case being able to get to a scan that we desperately wanted to have.

You asked about your husband’s worsening symptoms… From our experience, a rapid decline occurred in the last three months. Mobility deteriorated very quickly as did continence. Difficulty with swallowing came late on. I don’t recall the shaking. Vision was lost, pretty much by the end.

We hadn’t had any seizures until a big one in the last week which caused things to get much worse very quickly.

All that said, we had any been in a bad place a year before with mobility issues and other significant symptoms, but that situation had been salvageable owing to surgery. On tumour recurrence, surgery had not been an option.

I’m sorry this is probably not very helpful. The medical team should be talking to you. Is there a Macmillan team at the hospital? I hope you get answers very soon.

Thinking of you with much love,

Hi Jac1966

a warm welcome to the group. So sorry to hear about all that's been going on. Life's too cruel.

I supported my late husband G throughout the three years of his GBM journey. It's an emotional rollercoaster ride for all involved. To be honest, he ticked a lot of the end of life signs for most of those three years.

In our experience, there is no normal/generic progression during the journey as everyone's situation is unique. Have you spoken to your husband's medical team and asked what their expectations are? They really are the people best placed to give you accurate information. if you've no appointment set up, I'd encourage you to arrange one. Ahead of it write down all your questions, fears/concerns and take the notes with you to act as a script. Its very easy to get overwhelmed in these appointments and forget to ask about something that's important to you both.

In our case, G's tumour largely impacted speech, language and understanding from very early on because of where it was. His eyesight was also compromised from early on in one eye in particular. Initially he described it as being like looking through wet plastic and latterly the vision field narrowed until he only had a tiny slit of vision. Physically he was really good until a few months before the end. 

Twice we were told he only had a few days to live, perhaps a couple of weeks - once in Feb 2023 and again in Aug 2023. G finally passed away peacefully at the end of Oct 2023.

It's only natural to try to read deeply into every symptom and slight change. I was the same.  Please try to avoid Dr Google though and focus on the facts as the Dr is telling you them and on what you can see for yourself. This is a rough journey but you will get through it.

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

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

For now though, I'm sending you a huge virtual hug and lots of strength. 

love n hugs

Wee Me xx

Hello Wee Me

So sorry to hear that you lost your husband through this awful disease, it is just so cruel.

My husband was meant to have his scan on Wednesday night/Thursday morning ready for the Oncology team to visit him at 11.30 Friday morning.  His ward nurse assured me it was done on Wednesday, I didn't leave until 7.30pm so I thought they had done it late again. He was being taken for the scan as I arrived, 10mins before his Oncology consultant arrived!! The different teams in the hospital had all been discussing my husbands condition over a couple of days and unfortunately the discision to stop his chemo was made, unless he made another miraculous turn around as he has done after his other illnesses. By now he should have been on his 5th round of chemo, but he has only had 3 rounds.In my heart I knew this was coming, because we've been here every month since March. He couldn't wake up to talk to them when he came back from his scan, and then Pallitive care came to discuss his ongoing care at home and talk about his wishes, and once again he wouldn't wake up. With treatment we had  thought we had so much more time to do things in, but unfortunately it has been a very short 8 months with my husband having changed so much since a few weeks after radiotherapy started. He doesnt like discussing his illness with anyone, even me, saying 'it is what it is'. He's stuck to telling everyone that he had at least 2-3 years until 3-4 weeks when a friend popped in for the first time in months, and out of nowhere he told him he only had 3-4 months left to live.

I'm so heartbroken,  but praying that he turns around again

Jac1966 xx

Hello Asa21 

Thank you for replying, and I'm so sorry to hear that you lost your husband to this awful disease

My husbands mobility problems started an hour after his last radiotherapy treatment on Feb 14th. He had walked off as I talked to the nurses, and as I caught up with him his legs were shaking so badly I thought he was having a seizure. This continued to happen quite a bit, since mid March it was happening every single day, with me chasing him around with a chair when his legs started shaking, and the last 2 months chairs placed around the house and garden because he would go down like a ton of bricks. Now since he's been in hospital he's unable to walk and he cannot even sit up unaided. Even with the strongest seizure meds he still has seizure activity.

Unfortunately today they told me the news that he is too ill to continue with treatment, unless he dies another miraculous turn around .

So heartbroken

Xx

Oh, Jac1966, my heart breaks for you. These tumours are evil.

We were handed over to our local palliative team at the end of Feb 2023 and at that time the oncologist thought G had a few days, maybe a couple of weeks. Being handed over into the care of the local team was the best thing that happened on that journey.  Even the simple fact that I now had a local number I could call 24/7 lifted so much weight off me. 

As part of that team we were introduced to the local community hospice team. 

Those few days turned out to be 8 months but it also meant that when the end of the journey came we were surrounded by people who knew us as a family and not by strangers.  G passed away peacefully in our local hospice. Those angels wrapped their arms round all of us that final week.  I can't sing their praises high enough. 

Please take time to process all that you've been told by the medical team. Its such a lot to take in. If there's anything I can help answer for you,  please just ask.

Love n hugs

Wee Me xx

Hello Jac1966, I am just so sorry… I have been there too and it is completely heartbreaking… yet we keep on going and we try to do all we can for the person we love.

Mobility issues once again surfaced in my husband’s case a few weeks after the discovery of tumour recurrence. A different chemo regime was planned but we only managed 2 out of 6 cycles. By the second cycle, my husband was struggling to walk the short distance from the car to the outpatient unit. Things rapidly deteriorated to the point, just a very few weeks later, when we were unable to get downstairs safely and spent 2 weeks trapped upstairs… all the while continence worsening equally rapidly.

We were fortunate that the various nursing/ medical services came together with palliative care ( in our case with a hospital bed downstairs….accessing it, a story in itself! ) which quickly changed to end of life care (Marie Curie nurses providing care alongside them.).

It is shocking… and I empathise totally with what you are now navigating your way through. 

I had no reserve by the end stage… I was ringing the various services and emergency numbers and asking for help regularly. I found that the help was there… but it was full on keeping on top of everything.

I really hope you that your Team continue now to communicate with you and that your husband’s situation improves to enable further treatment or to have more time with improved quality. .

It is a wretched time. Continuing to think of you with much love.

Hello Jac1966. It is such a hard time as things can change quickly. I lost my husband two years ago and I will reiterate what Wee Me said about the palliative care support from the local hospice,  once they were involved I felt so supported. My husband and I had discussed him going to the hospice when the time came but he was cared for so well and at home I decided to stay at home. He was pain free and died at home with me on a Sunday evening.The palliative team are also a good support for symptom control and are alot easier to contact than the hospital as they are 24 hours so however long you both have together keep communicating with them. You are stronger than you think but we all need practical support.

Hello Sulubee

So sorry to hear that you have lost your husband.

I am finding this weekend too be very long already, whilst I wait for my home too be stretcher assessed, to enable my husband to come home. Although this is the news I have been dreading, the fact that we are being offered this help has lightened the load that I felt I was carrying these last few months. Apart from my daughter, I've never felt comfortable leaving my husband with anyone. I have amazing friends around me, who offer me so much support, and that helps a lot.