Young adult with glioblastoma diagnosis

HI

sorry  to hear that you are having to change oncologist but I totally get it too. You really need to be under the care of someone who is on your wavelength and on the same page as you. 

We had the misfortune to be bounced around between 3 or 4 separate oncologists over a two and a half year period. The initial meeting was face to face in Sept 2020 and we never saw another dr face to face until November 2022.....  the last video appointment we had was in Feb 2023 and I knew when I saw which oncologist had popped up on the screen that it wasn't good news. He only ever appeared when something had changed. Total care lottery.

I really hope you gel with the oncologist on Monday. Having someone on the team that you can talk to and trust is so important on this journey.

love n hugs

Wee Me xx

Thanks Wee Me - sorry to hear about your experience with oncologists I suppose Covid didn't help with face to face appointments.  I'm not a fan of video consultations I think you lose so much not being in the room with someone even though its obviously a lot more efficient time and travel wise.  

We met he new oncologist on 4 March and he is much better than the previous one, so I'm glad we instigated the change.  The cancer nurse is amazing, she was on a day off when we had the appointment but still joined on Zoom - there are such wonderful people working in healthcare. 

So M is starting to feel more side effects from his treatment, has lost his hair on the scar site which has bothered him more than I thought it would.  He is extremely tired and very grumpy - hard to know which is down to the treatment and which due to the general situation and fact he is having to travel to Oxford 5 days a week which is an hour each way journey time. 

He has also had a couple of instances of numbness on the left side of his lip - this worries me more as this was one of the symptoms which led to him seeing the doctors and his tumour diagnosis. The cancer nurse reassured him it could be a sign his brain is recovering and putting out signals again.  I of course worry this is a sign of regrowth.  He also tells me he has had some issues with short term memory loss which again I worry about.  His last MRI was on 19 January so I presume it could have started growing back - not sure how I stop worrying about things like this. 

We are seeing the oncologist on Monday (face to face ) so its a question for then.  I am also going to speak to him privately as I have some questions about M's treatment after he finishes radiotherapy,  M's tumour is unmethylated and I have read that chemo doesn't work well with this type so I want to discuss further - not something M wants to think about and I understand it but I feel I need to be prepared.  I will avoid direct discussion of his prognosis - I don't think me knowing and him not knowing would work at all and its not something I can un-know. 

On a more positive note we are off to the theatre in London tomorrow to celebrate M's birthday so finally something joyous!

You're right - there are some awesome people working in health care. Glad to hear you've found a team that you relate to. That makes such a difference.

G lost a line of hair around his scar too but it  grew back quickly once the radiotherapy stopped. In his case it initially grew back a lot darker than his hair had ever been but eventually went as grey as the rest (well what little he had LOL) 

The mood swings and low moods are hard to live with but please try to bear in mind that its not him. Blame the GBM Steroids too cause personality changes. G was horrible on them!

I'd encourage you to ask all your questions. The clearer you can get things in your head puts you in a stronger position to support M.

happy birthday to him when it comes. Hope you enjoy your theatres trip. Love a trip to the theatre. I'm going to see Hamilton in Edinburgh next month with my daughter. Looking forward to it but suspect it could be an emotional day as we watched the show on Disney+ with G a few times. Phantom was his favourite. Me...I love Les Mis. 

sending you all a huge virtual hug and lots of positive energy

love n hugs 

Wee Me xx

I am going to post something positive now.  M finished his 6 weeks radiotherapy today and while appreciating this is not the end of the journey it does seem like a huge relief and M is looking forward to a few lie ins. 

A couple of weeks ago I did speak to the oncologist alone and it really brought home that there is no certainty in any of this and seems a case of trying one thing and when that stops working trying something else.  The real awful point is when there is nothing else to try. 

That said M is well with really quite mild side effects from the radiotherapy.  We saw the CNS afterwards and discussed delaying the MRI until after our holiday.  We have booked to go away for a week at the end of April and `I think it would be great to have that holiday without the MRI and any associated results hanging over us.  Hopefully that's what they'll do.  So M only has 2 doctors appointment in April (whoo hoo) he is seeing a neurologist to review his prescription - he has been on phenytoin for 4 months which isn't good and he has been referred to a geneticist to do a full body scan. 

Today is a good day for our family and for now that is enough. x

Hello!

I am so sorry to hear what your going through, 

My name is Julia and my mum was diagnosed in October with a stage 4 Glioblastoma, and I am still myself very upset and find it hard to process everything, 

but I hope you and your son are doing well and congrats on your updated news! I am glad you can go away and have a happy time despite what is going on. I am 22, and I was wondering if your son wanted someone to talk to, then I would always love a chat:) I know how frustrating it can be to feel like no one understands and maybe this would make him feel better. 

you are definitely doing an amazing job and don't feel selfish for having worse days, I was like that too but it takes a massive toll on families too. We can get through this, as difficult as it is.

I hope you have a lovely easter and sending you lots of hugs and strength!

Julia xxxx

Really pleasing to see you're getting your head around this whole situation. It's positive for me to see  High five and all that! I'm genuinely pleased for you and thanks for this news.

HI Julia, thank you so much for your message and so sorry to hear about your mum's diagnosis. This is all such a shock isn't it. 

I will mention your offer to my son but he hasn't always been very welcoming of these type of suggestions to date to be honest..  I however think it would really beneficial but I have to respect his wishes. 

He also may want to wait a month or so as we are trying to have time off from this until the next phase of treatment starts early May.

i'm sure you understand and I do hope you are getting the support you want and need, I have found it difficult not knowing anyone on real life (as opposed to this virtual world) who is going through this as its so complex and different to other illnesses.  

Take care and look after yourself along with being there for your mum. x

Back again although not much has changed since M finished his treatment.  I still can't seem to stop googling content on brain tumours, nerosurgeons etc.  I have started therapy to try and help me live with this, to get to the point where it isn't the first thing I think of when I wake up or last thing before going to sleep.  

We have had M's next appointments through - just 2 trips to Oxford each month and 5 day cycles or chemo each month.  We are still waiting for the mri appointment (I requested it be delayed until early May so after our holiday) - thats the one that will cause me sleepless nights until we get the results.  

M doing well thought but very frustrated by hair loss to the point I just had to say to him just accept it and be grateful you are a man who had very short hair anyway.  Sounds harsh but he wanted to buy some crazy product claiming to speed up hair growth. Hmmmm 

Lovely to hear from you again

I hope therapy helps you here. It is such a gruelling emotional journey that I'd encourage you to take all the support and help you can. I didn't take up the offer of therapy until after G passed. My key coping mechanism was journaling. It still is. 

Please stay away from Dr Google. He's a scary dude! One thing I have learned over the past three plus years is that no two stories are the same. There have been countless people sharing their tales on this forum. All the Dr Google stuff is based on best guesstimates and published averages. No one is average. We're all unique and this journey will be unique to M. 

You made me giggle when you mentioned M's frustration at the hair loss.  And they say women are vain about their hair! LOL.  For what its worth, G's missing strip if hair grew back quite quickly after the radiotherapy stopped but it grew in a different colour. He was already quite bald to be fair but the hair he had was grey. He was originally blonde/light brown in colouring but the new stripe grew in dark. It settled down in time and went as grey as the rest.  Suggest he buys a cool hat instead of hair products that cost the earth and do nothing.

love n hugs

Wee Me xx

Just got back from a week's holiday in Germany which was much needed and I think M enjoyed it although when you are 22 a holiday with your parents isn't the most exciting prospect is it! I pondered for ages over holiday insurance and ended up not buying any which did play on my mind but suffice to say all was ok and M is still doing really well. 

We are back to reality with a bump though as he has an MRI in Tuesday and starts chemo again Wednesday - then oncologist appt Monday 13 May so few worried days next week until we get the results. 

It has been lovely having some time away from medical appointments but has made me notice even more how mundane M's life is right now. 

I've also been overeating `(comfort eating?) and have put weight on, I've recently been diagnosed with osteoarthritis which is painful. 

This is causing me embarrassment & shame as well as affecting activity levels.  I know this isn't about me and I know I need to get myself healthy to support M and any deterioration in him but that is easier said than done.  All feels a bit like it's one thing after another. 

I have been having counselling each week, am 4 or 5 sessions in - not sure it's working tbh.  I think I just feel all at sea with how I should be feeling and behaving.  I know it sounds strange but  after the shock of the first few weeks and the worry it all feels a bit flat lately yet how can you go back to normal with this bubbling away in the background.  

Having said all that I know we are lucky in how M is compared to many other patients at his stage in their treatment.