WJ grade 3 Astrocytoma cdkn 2a/b HD

A day

2026-03-31T12:59:59Z

Just an interim blog. Tired today, and itchy eyes; very annoying; I keep rubbing them like I’ll get three wishes.I do feel the cold a bit more these days, who knows-I must be getting old…er. A nice glass of orange juice in front of me, h...(read more)

Results

2026-03-06T11:48:09Z

Well it’s been seven months off chemo, and my bloods are still lowish for chemo but the MRI show it stable which is nice. June next hope everyone is ok please leave a message rather than just visiting x(read more)

Maggies

2026-01-19T23:15:51Z

Went to a maggies session, something to see how others are. I felt young there. Mixed personalities did get to me as one person butted in on everyone. Was annoying. But nice to see fellow patients and what they’ve been through. I enjoyed it exc...(read more)

Better

2026-01-13T23:40:42Z

Bad belly has gone and had results for my chemo. Blood works were out again. Iron level was low. Platelets were above a hundred but that’s no good for chemo. 49 th birthday was qu t happy birthday me. Goto wait 6 weeks again now before next b...(read more)

Bad belly

2026-01-03T15:10:06Z

Well went to A n E on New Year’s Eve. Stomach pains, after seeing not a lot of anyone. Useless people. They said it’s most likely gastro. I knew that. Hopeless. Just drank plenty and ate small(read more)

Christmas

2025-12-23T17:21:12Z

Well before the Christmas holiday chaos begins, I wish you all a happy seasons greetings and a happy new year. Be safe, be strong and remember someone thinks of you. Your not alone x(read more)

Tiredness

2025-12-22T12:53:55Z

Very tired today. No chance to diet etc but I should be moving about a bit more(read more)

Maggies day

2025-12-11T14:16:08Z

Had an invite today for a Maggi’s meet up. Tea and cake. I think for a change I will visit and share with anyone who turns up. I think it’s just a brain get together. It’ll be nice to meet up with people going through this. If anyth...(read more)

MRI results

2025-12-06T12:24:31Z

Well my bloods are still low, so another chemo break and an MRI in March ( the beginning of the year is a bit hectic apparently). My scan shows as no change which is good (read more)

Bloods n MRI

2025-11-28T08:54:06Z

Well my platelets are just below the norm, but better than before. I have my MRI on Monday, it’s been a while, then Thursday’s it’s oncology day(read more)

Bloods

2025-11-25T18:41:26Z

25/11/26 had bloods today to check my platelets. Results Thursday most likely(read more)

Cycles

2025-11-24T11:09:29Z

I keep reading people stop their cycles of chemo after 6 months. I’ve been on mine since I started. Is that normal. I had tremazadol and that didn’t work at all. They then started me on lomustine. I’ve been on that ever since. They ...(read more)

Checking in

2025-11-24T11:08:37Z

Nov 2025 - so I’ve been having blood test and everything has been down for the last few months; so no chemo for me. All but my platelets have returned to normal, and I’ve found the lumps on my left hip. I’ll get these checked by my ...(read more)

White cells

2025-11-24T10:22:35Z

Nov 2025 - so I’ve been having blood test and everything has been down for the last few months; so no chemo for me. All but my white cells have but returned to normal, and I’ve found the lumps on m left hip. I’ll get these checked b...(read more)

My diagnoses is not hd

2025-11-24T10:19:02Z

Ive tried to delete the hd (homozygous deletion) but with no luck. I’ve emailed twice but don’t want to mislead. Mine is a non deleted(read more)