Hi everyone! This is my first time using this site and to be honest I never thought I would have to!!
Back at the beginning of December, I had a couple seizures which they thought was a TIA. After investigations I was diagnosed with a grade 1 brain tumour and told I would need an operation in the near future. Until such a time I was advised to carry on with life as normal. Which I did! I was very active and I would run around 15K/week and walk. I loved walking 20 miles across Dartmoor.
In February 2021 all this changed. I very quickly lost my ability to speak and I lost control of the left side of my body (a bit of a hardship as I’m left handed). At this point I was told my tumour had changed and I was diagnosed with a grade 4 brain cancer. I had an operation to remove most of it on 22 February 2021, followed by a 6 week course of radiotherapy and I was given a trial drug because my tumour was tested and came back as unmethylated.
I had my MRI scan following this and was given the results last Monday. Despite the original tumour shrinking, I now have another one on the opposite side of my brain. So I am waiting to go onto Chemo Temozolomide. Despite the fact I was told that this was not the one that worked so well with unmethylated tumours hence the reason I was given the trial drug in the first place.
I am devastated. Coming to terms with this when I was such a fit and active person. Trying to explain it to my family and support my partner trough this (I’m a 55 year old woman with 2 sons and 2 grandsons with both my parents still alive!) has been heartbreaking. I still feel so well too!!
I don’t know how long I’ve got left, I keep thinking will I make to Christmas? I’ve got a holiday booked for August and I’m supposed to be going up to see my son and 2 grandsons in early July; however I don’t know how I’ll feel as I will have started my chemo by then. Cancer is so cruel!!
Hi and welcome to the Online Community. I'm so very sorry to read your post and that having undergone surgery and chemo you've now been diagnosed with another tumour.
I've a different cancer to you and had never before posted on a forum such as this but the support received here from strangers, who have now become friends, has helped immeasurably.
The Macmillan Community is organised into dedicated support hubs. I see you’ve joined our Brain Cancer group this will be a good place to connect with others making the same type of cancer journey.
It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. You can amend or update it at any time. I would use this, your first post, as it is so informative.
The Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team.
Sending you welcoming hugs B xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
HI Kazlar
so sorry to hear of your diagnosis.
My husband (51years old) was diagnosed with a GBM4 last Sept so I can relate to the journey you are on. After his surgery he completed 6 weeks of chemo/radiotherapy. It was TMZ that he took for the 6 weeks and coped well on it. He was offered a second course in Jan but he declined all further treatment at that point.
Timescales seem to be such a grey area and seem to vary vastly from person to person. Everyone's unique.
take care.
Love n hugs
Wee Me x
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
