HI
Looking for some words of wisdom/experience.
My husband was diagnosed with a GBM4 last Sept, had an awake craniotomy and a couple of weeks post-surgery developed multiple blood clots in both lungs. He spent a couple of nights in hospital and was discharged with anti- coagulant medication. They settled down after a week or two. No one said that these had impacted his life expectancy. it was already indicated as 12-15months. We are now in month 9.
In January he had a scan that revealed that the initial lung clots had dissolved and the pain he was still experiencing from time to time related to scarring in the lungs. He was to continue with the daily blood thinning injections.
In February we needed a letter for his employers around his condition and within the wording of that the blood clots were described as "Significant Pulmonary Embolic Disease" and that this had complicated his 6 weeks of oral chemo/radiotherapy that he had completed in Oct/Nov and had reduced his life expectancy by some months. This was news to us and really not the way we wanted to discover it!
In March we spoke with a different oncologist and he commented on the non-blocking blood clot on the surface of his brain that is potentially impacting two of the major veins. Again this was news to us and apparently that clot has been there on the scan images since Sept and no one mentioned them! He ordered blood work and we'll see him later this month.
In the past few days my husband has been in pain again around his back which he says is the blood clots bothering him. My concern is that he's complaining of pain in a different area to before. Surely if the clots had cleared and it was only scarring that's been left then the pain would be in the same area?
Does anyone have any experience of this with their loved ones? I'm worried this could be a sign that things are starting to deteriorate and he refuses to seek medical help saying that he's dying anyway so what's the point.
Any words of wisdom or hints/clues as to what other signs to watch out for here will be gratefully appreciated.
love n hugs to you all
Wee Me xx
Hi Wee Me
I'm sorry to read that your husband is experiencing pain but he refuses to seek medical help.
I don't have the experience you're looking for but I noticed that your post hadn't had any replies yet. By replying to you it will 'bump' it back to the top of the discussions list where it'll be more easily seen.
If you haven't already you could type 'clots' into the group search bar to see if there are any previous posts on this topic. If there are you could have a read through some of them and reply to the more recent ones if you think the poster might be able to help you further.
I think the response I might give to him, if he was my husband, is that whilst he might not be curable he doesn't have to be in pain and a quick phone call to his team might mean that they can sort that out. However, you know your husband best so I'll leave that up to you!
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
thanks latchbrook. I took a look as you suggested and although a lot of the posts are several years old it was reassuring to hear that they are common with GBM4.
I called his "team" today - waste of time. There's been a lack of consistency with his "team". The last I spoke to his CNS was November last year when she said if I had any other concerns I was to call their helpline. I called them this morning, explained the situation and was very politely told as he wasn't receiving active treatment for cancer at this time that they couldn't help. She said I should call the CNS and I said it was the CNS who had said to call them. Stuck in the middle and getting nowhere.
My daughter finally convinced him to go to our local A&E this afternoon. They didn't do much as far as I can tell. They wouldn't let my daughter in with him and he can't explain the situation due to the GBM4 impact. Dr did some blood work, said he was fine and sent him home.
He's still in pain but now won't entertain doing anything else as A&E said he was fine.
We have a consultant's appt on 24th so I guess we just need to hang in there until then. I really hope no one else experiences as frustrating a GBM4 journey as we're enduring.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I'm sorry to hear this Wee Me. It sounds like you're in a really frustrating situation.
It might be worth speaking to PALS (Patient Advice and Liaison Service) at your hospital. They can help with the problems you're having by speaking to the people involved in your husband's care.
Whilst I can understand why they want to limit the number of people who go into a hospital it is ridiculous not to allow your daughter to attend if your husband cannot explain the problems himself. My dad has early stage dementia and had to go to hospital recently for an examination. It was explained to the hospital that my sister would have to accompany him as he wouldn't remember why he was there. Eventually they agreed.
I hope PALS are able to help as it isn't right that your husband is in pain and nothing's being done to help him.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
thanks latchbrook
xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
