Hi, I’m looking for some advice. Ours is a complicated situation. My mum (72) has recently been diagnosed with stage 4 kidney cancer and had started immunotherapy 8 days before suffering a hemorrhagic stroke a month ago.
She woke in the morning confused and repeating herself, my dad called me and I told him to ring the ambulance. By the time I got there the ambulance had arrived and she was having seizures. She spent 6 days in the acute stroke unit but was then discharged very hastily. I was told she had a left sided occipital stroke. She has made a reasonable recovery, her field of vision is affected, she is profoundly fatigued, she can’t walk very far and she struggles for words, her short term memory seems to have been affected too. We feel very fortunate but are left wondering how to proceed. I realise I’m on the wrong forum as far as cancer and immunotherapy are concerned but I’m trying to make sense of the stroke part of the issue.
The timing of the stroke so soon after starting treatment felt too coincidental and our initial thoughts were that the cancer had spread to her brain. They did an MRI scan the day after she was admitted but I was told she was shivering too much in the scanner and it would need to be done again. Two days later I was told a second radiologist had looked at the scan and they are confident there was no spread.
We were reassured but began questioning whether it was in fact the treatment that had caused the stroke as her blood pressure sky rocketed after she started it. Treatment has been paused for now while my mum recovers some but we are obviously on the clock.
Initially the hospital provided a stroke nurse to visit but she discharged mum after two weeks as she said she was too fatigued to benefit from rehabilitation and it was her feeling that it was more than just stroke.
Having now had the chance to read mum’s discharge notes, the MRI scan results read as inconclusive and that she had not one but two bleeds. I’m shocked this wasn’t mentioned to us previously. I’ve asked for another scan for her but the stroke department have said it’s pointless as the bleeds will obscure results. I wonder if anyone can tell me if this is true?
Mum is increasingly fatigued and feels the pressure to start treatment again ASAP. She is terrified about having another stroke and either shortening her life or curtailing her quality of life. I feel she cannot make an informed decision about treatment without having a better idea of what caused the stroke.
Her oncologist has down played the stroke and she has somewhat lost confidence in him. Sorry, I know this is a long and rambling post, the situation is complex. We’re trying to get a handle on the stroke side of things so she can move forward with decisions about further treatment. Any advice or info would be greatly appreciated, thanks and best wishes.
Shwmae @Grubbygardener, I am sorry to hear things have been such a befuddle. I can’t help unravel these medical mishaps you have written about but can empathise, as I had a cryptogenic stroke (no cause found, and treated on symptoms only). What I suspect with mine, is trauma. It’s only speculation, but if there isn’t one of the obvious underlying causes, sometimes a small tear in an artery can be at fault, but once again, I can’t speculate on your mother’s condition. I do hope, however, that regardless of a cause or not, thing start to move forward for her in recovery. Fear of another stroke seems quite common, I liken it to the brain flinching whenever it feels like it might be struck again.
@Grubbygardener sorry to hear of all that your mum is going through which I am sure is equally as difficult for you and all the family. I echo what @Mahoney has said with regards to speaking to the stroke association.
It is very difficult to put our trust in the medical professionals particularly if we aren’t sure they are acting in our best interests. I wonder whether you are able to speak to the stroke & oncology specialists again perhaps being armed with specific questions. Sometimes though there is no answer to what caused the stroke.
Fatigue is a massive part of a stroke but also cancer so your mums fatigue must be horrendous.
I hope you get the answers you need to be able to move forward. Do talk to the stroke association. They might just have the missing link you’re looking for.
Wishing you all the best.
Thanks so much for taking the time to respond everyone, I really appreciate it. I’m hoping to attend Mum’s next meeting with the oncologist next week and have a long list of questions. I don’t hold much hope in talking to the stroke specialist, he couldn’t make the time to speak to me when she was in hospital, let alone now she’s discharged. I will call the stroke association today, she was sent some booklets from them last week.
My initial thoughts were to go privately for a scan as neither department seems willing to stump up for another scan at present and she so desperately needs reassurance. Unfortunately we live a days trip away from the nearest private provider so it will be very hard going getting her there and back but I will put it to her again.
She has been offered very little from the stroke team and it feels like they hastily discharged her back to oncology so she wasn’t their problem. I’ve been in touch with our local hospice who have been fantastic. They are going to provide some physio and counselling for her, hopefully the physio will be appropriate to her stroke needs. They felt that profound fatigue would be improved by some exercise. Is there anything I can do to help her short term memory? Should I be going back to the stroke team to ask for help with this?
She has gone from being a very active woman pre stroke, cycling, walking gardening, looking after her 5 year old grandson twice a week to struggling to get out of bed in the morning. I’m hoping the counselling will help her come to terms with the new identity she finds herself with. It is very hard for her.
Thanks again for your support, it’s good to know we’re not alone. Best wishes to you and your families.
@Grubbygardener hopefully the physio & counselling the hospice will provide will also help with your mums stroke recovery. I found when my dad was diagnosed with terminal cancer and he was being cared for by the hospice they prioritised his conditions which meant some were left untreated. Took us a while to accept this as we wanted dad to be the best he could be in every way…in the end we could see sense in it. Maybe this is part of the issue you are having with the hospital consultants?
In relation to your mums short term memory following my stroke I had difficulty with concentrating and taking in anything and I just started to read small articles (1 or 2 lines) and rereading them until it stuck in there. Just 5 to 10 mins a day. It’s taken a while but finally this week I managed to read 1 page in a book and remember what it said. Maybe worth a try for your mum?
Good luck with everything and don’t forget to look for yourself too; that’s just as important.
Hi @Grubbygardener, I am so saddened to hear of everything your mum has been and is going through and, also so sorry to hear of all of the difficulties you and your dad are experiencing at this time aswell in trying to manage it all.
It must be a very exhausting and emotive time for all of you.
I’m not sure I can provide any advice different from the words of advice everyone has posted already, however, I can tell you, after I suffered my stroke (bleed on the brain), I had an angiogram scan to try to find the cause which, unfortunately, they were unable to but, they informed me due to the bleed potentially hiding a number of things e.g an aneurysm, that I would have to go for a 2nd angiogram scan around 3+ months later, to allow time for the bleed to be reabsorbed (not sure on the correct terminology, sorry) and for them to be able to obtain clearer imaging of the brain. I did have the 2nd scan and again, unfortunately, they were still unable to tell me the cause, however, the bleed had disappeared so they were able to take more images than the 1st scan and tell me more regarding the results of it.
I truly hope that this is the reason they are reluctant to give your mum a 2nd scan at this stage and that perhaps, one is suggested at a later date.
I wish you all the very best in getting her the necessary help and care she needs and that you get the much needed support for yourselves too.