Stable scan but given weeks to live

Hi Uppsy252,

I am really sorry to hear of your husband’s decline. I can empathise, as your situation sounds (in terms of speed of decline and symptoms) very like my husband’s.We didn’t have the delirium, not to any great degree, and what we had was managed by meds, but the overall picture you describe, I can very much identify with.

In our case, the original site of the tumour (right temporal lobe) remained clear (at least it was on the last scan we were able to have about 5 months before my husband passed away. Instead, a small fuzzy area showed up in the central part of his brain (not especially distinct and only 1- 11/2cm in size. Initially, it was thought to be perhaps a bleed but then it was determined to be a tumour. There were also suspiciously 2 tiny bright pinpricks visible elsewhere (again not the original site) The speed of decline was really quite rapid from this point on. This was last May/ June… by the end of August, my husband was bed bound and things speeded up from there.He passed away, mid November.

We were not able to get him safely to hospital (at that point we couldn’t even get him down the stairs, so we don’t know what the scan might have shown. I recall (as I was fixated at this point with him getting to the scan, which had been brought forward specially for him) the consultant saying that sometimes you didn’t need to see the scan to know what was going on. The symptoms were indication enough for the direction of travel. From this point on, it was palliative care that he received. It is dreadful to watch… you feel so helpless, even though you are actually run off your feet!

I think you cone to realise (I certainly did) that there is no coming back from this. High dose steroids, attempted at the start of this decline, made no difference (unlike the restorative effects they had had when diagnosed originally).

I know this doesn’t answer precisely what you have asked, but with the similarity of symptoms and decline, I wondered whether perhaps, as in our case something else was occurring, elsewhere.

I hope you get a more detailed explanation soon from either health professionals or from fellow members.

Thinking of you with much love and sending a virtual hug.

AXx

I'm so sorry you are going through this. Just like Asa21 my husband's original tumour was stable but a new area linked to the original area was growing. It was extremely fast, around a month for us. It definitely sounds like you need more clarity on what is happening. Has there been a recent CT or MRI which may show progression? A CT scan showed the new area with the MRI giving more detail to the doctors. I hope you get more answers. Take care x

Hello, I’m so sorry to hear what you’re going through. We were in your position only around a month ago and unfortunately the palliative team were correct. It’s really easy to get wrapped up in the inevitable and it’s a really scary time. My advice to you would be just to sit with him. Sit with him as long as you can. Put some music on that both of you enjoyed. Talk to him, nothing heavy, just tell him what people have been up to. And just allow him to feel so loved. That’s what we did and all we could do. It’s not fair at all. But make the most of every moment you have. We’re all with you. 

Thank you for the replies, I really appreciate you all taking the time to do so. 

Chris' tumour is in his right temporal lobe. His latest scan was a CT done at A&E last wednesday so, 3 days ago and it showed no change. 

It's been explained to me that when there is a stable scan but obvious decline there can be multiple causes. The brain has to compensate for damaged cells caused by treatment and often it cannot cope any longer. The tumour is diffuse so it could be microscopic cells that are to blame. I can't remember the others. 

Regardless of this I am still in denial and keep telling myself that they are wrong. I can see he is decline so why am I tormenting myself with not believing it? It's very frustrating. 

Don’t be hard on yourself. In our case her scan showed no changes either but the decline came anyway. We had lots of family members around my loved one. Her primary care giver was also in denial. I think it’s a normal reaction. I think it’s different for everyone but decline for us was steady. Day by day you saw changes. And by the time that we were a day or two away, we didn’t want to see her go but we all wanted her to be at peace. Let yourself feel your feelings. It’s much better than bottling it up. I honestly don’t know how we made it through the time you’re in now and I can’t say it’s easy. It’s an unbelievably tough time. Sending love your way. You’re not alone. 

Have you spoken with your own consultant rather than the hospital/ward consultant? I do feel that when my husband's oncology consultant explained what was happening it felt real. She took the time to telephone and make sure I knew what was happening. Take care

HI Uppsy252

so sorry to read that you've had this blow. Life's too cruel and these GBMs are evil tumours.

I'll be totally honest, being passed into palliative care was the best thing that happened to us during G's journey. By the end of Feb 2023 he had several GBMs and the oncologist told us he had a few weeks, maybe a few days if the tumours adversely impacted the brain stem. We were devastated. He handed us into the care of the local team and the weight that lifted off my shoulders was incredible. I now had a local phone number I could call 24/7 and know that someone would be there to help, It's the little things.

Over the coming months we got to know the community nurses and community hospice team and more importantly they got to know us.

G had issues with focal seizures in Aug 2023 and was admitted to the local hospice to bring these under control. As a family my kids and I were told by the dr that she thought he only had a few days, maybe a couple of weeks and advised us to have our final conversations. 

G passed away peacefully at the end of Oct 2023 in the local hospice as he wanted. As a family we were surrounded by staff who knew us and we weren't with strangers. That made such a difference.

Everyone on this journey is unique so there is no rule book here sadly.

Please take this journey one step at a time and be gentle with yourself over the coming days/weeks/months. We're here for you so please reach out anytime.

sending you love and light and hugs

Wee Me xx

I haven't spoken with his neuro-oncology consultant. He hasn't been able to make the last 2 appointments with her because he's been in hospital. I did text CNS on Friday so, hopefully she will get back to me today or tomorrow. 

hope you got to speak to the CNS today. They can be a nightmare to get hold of.

One step at a time.

love n hugs

Wee Me xx

Same as Wee Me do hope you can speak to the CNS very soon. Our CNS was extremely helpful and made some calls on our behalf to the hospice and discussed the situation with the consultant. Take care x