Chemo paused, now issues with words/memory

Hi Rockwell,

We had to pause my wife's tmz after the fifth cycle due to low platelets. At that point she was relatively well in herself .

We waited another month and I seem to remember having to get her to eat a lot of dark green veg to help with platelets.

I'm so sorry your partner's original symptoms seem to be returning. Definitely mention this so the CNS and/or consultant when you see them.

When's her next MRI due? I know it's awful but until that happens I don't think anyone will be able to tell you whether the symptoms are indicative of returning growth or not.

I'll keep my fingers crossed for you both

Chris

Thanks Chris - I believe they would have been looking to do a scan after Round 3, but because of a seizure that took place in May, they did one in July which was okay (or "stable") and so I don't think they'd planned to do another one until after Round 6. 

Hiya Rockwell 

Obviously everyone’s journey is different and what goes for one doesn’t necessarily go for the next…

Word switching was one of the signs that made us realise there was progression with my Dad. For him it was using the wrong words for items (watch instead of phone… mayonnaise instead of magnolia). He had an MRI a couple of weeks after we noticed these symptoms start to happen and sadly it showed recurrence. 

This may not be the case for you guys but I want to be honest with our journey. 

I would raise any concerns and perhaps push for an MRI if you really feel the symptoms are becoming quite noticable quite quickly. 

Sending love xx 

Thanks GF92 - appreciate your words.

Hi Rockwell

To echo what the others have said, you should notify the medical team of any changes, however small, that you are noticing that worry you. It might just be a medication tweak that's needed.

My late husband G declined all treatment after the initial 6 weeks and tumour-wise on scans was stable for almost two years but during that time we did notice a decline in his cognitive ability and ability to find words. He would get the wrong word or make up words on occasion. It was worse if he was tired too. 

At one point the Dr did say that the pressure in the brain shifts and that that could be causing it. Once there was tumour re-growth the changes became more obvious. 

Everyone's experience is similar but different and it also depends on the area of the brain impacted by the tumour. In G's case it was in Broca's , the control centre for speech, language and understanding.

A GBM journey is an emotional rollercoaster ride but hang in there. You're doing great. Please remember that we're here for you. You're not alone.

love n hugs

Wee Me xx

Thanks Wee Me 

The last 24-48 hours have been pretty tough to go through.

I've seen my other half doing a lot of 'slow-motion' moves and a lot of stargazing (looking around without any focus on anything in particular).

Took her out for a little trip and a bite to eat - although I was doing most of the eating. It was heartbreaking to watch her struggle with dinner.

Legs look like they are beginning to feel like dead weights for her given the struggle to get into the car / up and down the stairs, and can hardly speak any words. Interrupted sleep in the night and sleeping a lot in the day (something she's never really done before). Right hand has started to shake too now.

All very distressing, and am fearing that bad news is really on its way. Holding it together mainly for my 2 boys and love of my life when she's awake but to me it looks like she's dying right in front of me.

We have a monthly follow up appointment with the doctor tomorrow and I'll be relieved that he can see how she is to give a more medically informed view of it.

We're currently 9 months in since diagnosis/operation.

Thanks for listing / reading!

Hi Rockwell,

It sounds like you are having a difficult time at the moment.  When you see your doctor tomorrow it maybe worth speaking to them about getting some help with aids around the house to help her and you move around as you will need to prevent falls if she is having difficulty weight bearing. We were referred to the local hospice and they quickly supplied equipment. 

It is such a hard thing to see and process yourself. Remember we are all here when you need to ask questions or rage and vent. We understand. 

Sulubee

It's an emotional rollercoaster ride for everyone involved but you are doing a great job here.

Might be an idea to mention the star gazing moments to the Dr. G used to zone out and turned out some of those moments were focal seizures. Weirdly the initial sign of one coming on was that the hairs on his arm used to stand on end then he would zone out for a few moments. I was told if any lasted more than 5 minutes then I was to call for help. Tweaking his medication brought them under control for a few months.

Meal times were always difficult in here. As G's journey progressed he struggled with his cutlery, refused help and threw a tantrum if you tried to help him. I began to dread them as they often ended up like a chimps' tea party.

If you don't already have any contact with your local community nurses and local hospice community time it might be an idea to ask to be introduced to them. We met ours  at the end of Feb 2023 and they were a Godsend right through to the end of our journey at the end of Oct 2023. if nothing else its a local contact for you that's there 24/7 should you need someone. Your gp should be able to make the introductions.

Folk steer away from the word hospice as they assume it means the end but it doesn't. They are there to support you and your boys through the journey and can offer all sorts of help as well as the obvious nursing care. It's worth a thought.

Hang in there. Remember we're here for you anytime. You're not alone here. We've got you

Sending love and light and hugs.

Wee Me xx

Well, it's been a tough few days alright.

The doctor recommended a stayover at the hospital based on the symptoms he was seeing, which thankfully were the ones I'd seen last week.

Unfortunately the scan results came through an I'd feared, and my darling wife's tumour has regrown.

We now have a follow up appointment later this week to talk about the options for the next step.

Upsetting and emotional times.

Hate this, just hate it.

So sorry to hear this but one step at a time here. Between now and the appointment write down all your questions. fears, concerns and take those notes with you to help make sure you don't forget to ask about something that's important to you both.

G first showed signs of regrowth in the scan done in early Oct 2022. He was still with me for another year. While regrowth isn't good, its not necessarily a sign that the end is nigh. At G's appointment in Feb 2023, the oncologist said that from the scan images he could see he thought we had a few days, maybe a couple of weeks and handed us off to the local palliative team as I mentioned before. Even in Aug 2023 when G was admitted short term to the local hospice, the doctor there said to have our last conversations as she thought he had little time. G passed on 27 Oct 2023.

These sadly are upsetting and emotional times but the fact you're showing these emotions is a sign of strength and resilience so please don't be too harsh with yourself here. This is a tough journey to support someone on and you are doing an amazing job.

Sending you a huge virtual hug and lots of strength.

love n hugs

Wee Me xx