Living after treatment

HI Purplebadger

a warm welcome to the group. So sorry to hear about all that has been going.

I can empathise with how you feel. In fact its pretty much what brought me to this community over 5 years ago now. I supported my late husband through the 3 years of his glioblastoma journey. G was 50 when he was first diagnosed and we'd been  together at that point for 32 years.

G had surgery followed by the 6 weeks of treatment and declined all further treatment after that, a decision that I had to respect. Three monthly maintenance scans became the normal routine for the next two plus years and while they are necessary they bring their own "Scanxiety" with them. 

if your husband recently finished the 6 weeks of treatment please bear in mind that the radiotherapy continues to have an impact for a few weeks post treatment. G still suffered fatigue for about a month after his last treatment then began to regain his strength. He was diagnosed in Sept 2020. he was a fitness freak, marathon runner and  was able to continue to run throughout the majority of his journey. In fact he set personal bests at all his competitive distances up to and including marathon in 2022. Your husband's energy levels should hopefully improve over the coming weeks.

I wrote a couple of community blogs for MacMillan that might resonate with you. Here's the links

Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

 “I’m fine”: how do you really cope as a carer? - Macmillan Online Community

Have you tried expressing yourself? Creativity and coping with member Wee Me - Macmillan Online Community

Everyone copes in their own way once the activity of all the hospital visits slows down but it takes time to adjust and to process everything so please be gentle with yourselves. Be led by what your husband needs/wants but also ensure that you take time for yourself here too, Taking "me time" is essential to help you cope as this is a gruelling emotional rollercoaster ride and it takes its toll. I personally drew a lot of support from this group and a couple of others within the online community - Glioblastoma multiforme brain tumour forum | Macmillan Online Community and Cancer carers forum | Macmillan Online Community.

My own key coping mechanisms were yoga with some reiki combined with meditation, journalling and simply getting out for a walk to clear my head. Coffee with a friend always helped too. G's key coping mechanism was denial which was hard to live with but it was his way of dealing with it all

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

If there is anything I can to do support just ask. I'll be open and honest with my replies.

For now though I am sending you a huge virtual hug and lots of strength. You are coping so much better than you give yourself credit for (you'll just need to trust me on that one.)

Love n hugs

Wee Me xx

Hi Wee Me, thank you for replying to my post.

Thank you for the virtual hug, sending one back to you.

I have found it very difficult to open up and talk to anyone. When we first got the news, I didn't read anything, or tell anyone because then maybe it wasn't real, the less I knew.

When people ask, how are you doing? How do you answer but say 'I am fine' how do you explain the terror, sleepless nights and nightmares. Only someone like yourself would understand.

My husband is a proud hard working man, now he is unemployed and not able to drive. What will he do now?

I work from home, so when he became ill, I did not have an employer to worry about but it does mean we are home all the time together. I walk the dog, which is my time out.

I may need to reach out to you again, as I feel I need to understand more of what will happen next and maybe a chat, maybe I do need an outlet.

Thank you for the links as well.

Love and Hugs

Purplebadger

Hi, how are you doing? 

My partner is recovering from his second brain surgery and we're waiting for his next scan. I've felt a lot like how you feel so I wanted to let you know you're not alone. I've got through the last few years by having a schedule, researching healthy living and trying to live in the moment and appreciate life. We schedule our life around days out, time together and things like meals out. We discovered a book called Radical Remission (there's also a podcast) , which helped change my outlook. Don't listen to the doctors when they say it'll come back, they always say that and no one knows how long someone has, there are survivors but they're not studied. Hope is one of the most important things and having that in the back of your mind does depress you so try to change that (and give radical Remission a read!). We started a modified ketogenic diet which has lots of evidence that it helps with brain tumours and seizures (they put children on this diet at Great Ormond st).

We're also working through the Headway brain injury recovery book which can helps regain skills and learn about adjusting to this new life.

Please message me if you want to connect. Best wishes!

Hi EvieP,

Thank you for your response.

We are coping really well at the moment.

I have put all the details, from the doctors, that are rattling around in my head and enjoying time with my husband.

He had a rough patch, where he just was not improving, movement and talking and I had come to the conclusion he will never be able to do more than that. But in the last week, he is walking, coming out with me, having long conversations and I tend to forget that he has anything wrong.

But then reality hits and we see the doctor next month, as well as a scan.

I will definitely look for the book Radical Remission, it will be worth looking into that.

Concerning food, he is very set in his ways of what he wants to eat and when, any mention of other options or changes is not up for consideration. He does have a salad for lunch, so it is not unhealthy but difficult to offer alternatives.

Thank you for reaching out, sometimes I am not sure if I want to talk about what is happening but maybe it will help to open up a bit.

Best wishes,

Hello 

I found your message so similar to my current backup 6 weeks  and have to start trying to be normal.  But I cannot do driver nor so out along. As words understand everything but the use of letters in after at times. I am things to adjust and be as normal as possible. 

When I am feeling stronger I can planning to things to try to help the the online links .