What to expect next

HI JustLooking

Sorry to hear the scans have showed some potential  progression. These are such cruel tumours.

G showed the first signs of true progression in Oct/Nov 2022 just over two years from his initial diagnosis, surgery and 6 weeks of treatment. Further chemo was offered but when we questioned the oncologist he said in G's case that it would have a 1:3 chance of slowing progression and at best buy a few months. He also mentioned that fatigue was the most common side effect. G weighed up the pros and cons and ultimately decided against taking further chemo. It was a decision that as a family we supported because to be blunt, if fatigue had stopped him from being able to go out for a run at that point, life would have become unbearable for all of us. 

In the end, G lived for a further 11 months from that appointment. We were passed off to the local palliative care team at the end of Feb 2023 and to be honest that was the best thing that could have happened to us as a family. We got to know the local community nurses and community hospice team and when the end of the journey came we were surrounded by people who knew G and knew us. That made a great difference.

Everyone is unique so just because this option was the one G opted for, it doesn't mean it is the right one for everyone. Talk it over with the oncologist and ask them to be honest. Ask what they would do if it was them.

Sending love and light and hugs and strength 

Wee Me xxx

Thank you so much for your response Wee me. It helps to hear about your husbands experience when he had reached a similar point in his journey. I hope you and your family are doing well. 

My mum is so anxious and struggles to even go to her hospital appointments. Last week she had a panic attack in the waiting room and left. She also doesn’t want to know anything about her prognosis which makes it so difficult. I’m just really starting to worry about the next few months! It’s going to take a whole new level of strength im sure. 

Thanks again for replying - you’re helping so many people through such a difficult time. Take care xx 

You'll find the strength when you need it, Just Looking. 

G got so stressed about scan appointments and oncology appointments. Most of his appointments were video appointments which made it slightly easier in one way and harder in others. I insisted on going to scan appointments with him and he hated that but I didn't feel that he would get there on his own or that he would actually go if I didn't go with him. 

Towards the last few months it was a cross between dealing with a petulant child and someone with dementia and it took more patience than I knew that I possessed.

He became fixated about his prognosis and was convinced that he  still had 6 months. Even when we were sitting together listening to the oncologist at that last call telling us that he might only have a few days, maybe weeks, G was convinced that he still had 6 months. Ok in that instance he was right - he got 8 months. 

To be honest, I wouldn't focus on the prognosis especially if its upsetting your mum. This is a journey that takes as long as it takes no matter what a dr was to say. More than once we were told to have our final conversations as the Dr thought he only had a short time. In the end, I couldn't tell you what that conversation was because everything changed overnight. Just be mindful that on this journey, things can change dramatically in a heartbeat.

Please remember that this community is here to support you and you're not alone on this journey. We've got you.

Love n hugs

Wee Me xx

It is heartbreaking to read that G thought he still had 6 months.. ans absurdly satisfying that he got 8.

You are wonderful Wee Me!

M

and now I'm blushing, M.  Thank you

love n hugs

Wee Me xx