HI

thanks for the update. Delighted to hear that you had a great trip to Germany. Not a country I've been to...yet. A change of scenery is always good. I know what you mean about our grown up sons not finding it the most scintillating holiday with us. I have to admit my son and I get on well. he's my gig buddy for concerts and recently I joined him for a week in Austin TX to go to the motogp weekend at COTA. It's all about making memories to last a lifetime.

Hope all the appointments go smoothly. I always found the time between the scan and the chat with the oncologist the most stressful time. I'd love to say you get used to it but you don't. It's just one of the joys of this rollercoaster ride that keeps giving. Will be thinking positive thoughts for you all.

I hear you on the over eating. Its understandable and to an extent allowed if it helps you cope. Don't be too hard on yourself here. You're going through more than you realise. Perhaps now that the weather is improving you can get out and about a bit more. It's been such a long dark winter and wet Spring. A little fresh air each day works wonders for the soul.

I had counselling via our local hospice after G passed away. The jury is still out for me as to whether it helped or not. I knew though when I was getting really anxious about going to the sessions that it was time to draw a halt to them. I've not ruled out future counselling if its needed but for now I'll stick to journaling. That has always been my Go To.

Please remember that this community is here for you. Reach out anytime. 

sending love and light and hugs

Wee Me xx

Thanks Wee Me - it helps so much to be able to connect with others who are going through similar - it means so much to me. Your trip to Texas sounds fab 

Hugely stressful day yesterday.  Took M to Oxford to start his first cycle of chemo post radio/chemotherapy only to be told they couldn't give it to him as the insurance company hadn't approved the claim.  Couldn't get hold of my nurse contact at the insurance company so left a message and had no choice but to drive home (one hour!).  When I got home she had emailed me with the pre approval for the treatment which dated 2 May so (6 days ago!) - it appears the whole things is the clinics cock up. 

I was (maybe still am) so frustrated and angry - waste of time, waste of petrol, the fact that I'm really busy at work and essentially had most of the afternoon off for nothing.  Not to mention if there is any risk to M of delaying the start of this cycle which I appreciate but I can't get into as I just don't know the risk.

I know were are hugely fortunate to have private cover (it was pure luck that children are covered on my insurance through work until they are 24) but it still makes me worry about the lack of joined up care. 

Not to mention this is yet more admin I need to do to follow up with the clinic that they have the approval and try and avoid this happening again.  I don't know if others feel similar but I do worry about dropping a ball as there is so much to cover and sort out  - all while trying to hold down a full time job - which lets face it is paying for his treatment so I need to try and keep it

Our month off treatment is well and truly over!   Feel a bit better after my ramblings... 

HI

sorry to hear things didn't go to plan the other day. The admin and bureaucracy involved whether its private or NHS can be a nightmare and is so draining. I hope you get things sorted out quickly.

I'm going to put my team manager head on here from a work perspective - no matter how busy you are, work can wait. Family comes first. I continued to work full time throughout G's journey and on reflection I should have perhaps stepped back for  a bit sooner than I had to.  I get that continuing to work is a help as that's something that's still "normal" but work will be there when you get back to it. 

Please take care of your wee self here as well as your son as this is a gruelling rollercoaster ride and its mentally, physically and emotionally exhausting. Please don't underestimate the toll its taking on you. 

love n hugs

Wee Me xx

Thanks Wee Me x

So we are back at the oncologist Monday for our monthly visit - fortunately M is stable although they aren't going to increase the chemo dose for the 2nd cycle because he did suffer quite badly with fatigue and some sickness.  We have an ophthalmologist appointment tomorrow - he has these every 3 months and Friday we have a meeting at the university about his hope to return there in September to finish his course - he had to drop out last November when we got the date for his craniotomy. 

While I know we are hugely lucky that M is on an even keel I am struggling a little today with the mental worry of this. I still catch myself thinking he's beaten this and it won't return - he is just doing so well.  Is he in remission - is that even a thing with glioblastoma?  I do still wonder if I should try and speak to the oncologist on my own to ask these kind of questions - the ones M doesn't want to hear the answer to.  Then I think this isn't about me and what is the value in getting these answers.  So I come on here and have the typing equivalent of verbal diarrhoea . It does help with the processing. 

Therapy tomorrow, I've had a 2 week break which has made me even more certain that I want to finish this.  I"m no longer getting anything out of it - although to be fair he has helped me with how I think about this and think things through. 

HI

lovely to hear from you again. Glad to hear M is stable. Hope you get on ok with the oncologist on Monday. I always found those appointments quite nerve- wracking.

Having days where this all feels too much is perfectly normal and I'm glad you reached out here. Hope its helped. We're here for you. We get it. There are so many layers to supporting someone on this journey that its ok to feel overwhelmed at times. 

G remained on an even keel for just over two years. Not sure that you can truly call it remission but we had that time where things didn't get that much worse and the scans didn't pick up much regrowth if any. 

I hear what you're saying about wanting  to hear that answers that your son doesn't want to hear. In hindsight I feel our journey would have been a little easier if we hadn't been given a prognosis for G as he far exceeded it. The weight of knowing that there were possibly X months to go was a lot to bear. In some ways it might be easier not knowing. Live each day as it comes. Let's face it, in this game called Life none of us really know how long we have.

By knowing a prognosis which turned out to be inaccurate we put ourselves, G included, through the emotional pain of three rounds of "lasts". It cast a shadow over Christmas, birthdays and anniversaries. In fact he had 4 "last" birthdays the way things worked out. That's tough to cope with.

I understand about the therapy. I'm still undecided if it helped me but I recognised that when I was getting anxious about going that it was time to draw a line under it for now. If you decide to do the same, you can always pick it up again further down the road.

For now, there are no rights and no wrongs. There are only things that you can cope with. As I've said before, don't be too hard on your wee self here.

sending you love and light and lots of positive energy and hugs

Wee Me xx

Hi, I have read your posts and really feel for you.

My wife "hid" her symptoms for a long time. She is 50 so I guess her chances of beating this were always a little low... initially I was upset that we didnt do something (or know) sooner, but the fact is it likely would have not made any difference other than to make us worry longer.

Ignorance was bliss in hindsight... and now, today, I am glad I didnt know. I cant imagine worrying for years on end... I'm struggling with the 6 weeks enough as it is...

For your son, he is young, and while the prognosis for this is not good in many cases, the fact is that there are some successes and there is no right or wrong answer in "knowing"... 

I enjoyed the time of "not knowing"... most of the time I'm happy I didnt know. Other times I just feel nauseous in my ignorance... the "rollercoaster" and all... but for your son, the fact that he is wanting to get on with life must be a good thing and enjoy him and the time for right now.

Do the checks... ask some questions, but my feeling is that they "dont really know"... unlikely they will tell you "remission" because thats a big commitment for them to make and with the levels of knowledge here they would be unlikely to make it would be my guess... so dont take it as a total negative.. take it as being cautious if you dont get a "remission" comment...

For you.. I'm sorry! I came on here to rant a little on my post and found my writing and feedback helped immensely. I didnt feel so alone... I hope you dont (although we all do  regardless)... but you are not!

Wee Me and SSR - I can't tell you how much your comments have helped me in how I view this.  Now upon reflection and what you have both said I see that it is better not to know - we are all going to die one day - I wouldn't want to know my date if I had the option.  I can see the similarities here.  

I am lucky and have very good friends & family, my mother is a retired nurse and my best friend a doctor (obs & gynae but it still helps ) and a fantastically understanding employer.  That said it so helps to hear from people who have direct experience of glioblastoma - I think its such a pernicious form of cancer its not always easy for others to understand.  And like you SSR coming on here and typing furiously for a few minutes does help me process it. 

So thank you for reading and for commenting and supporting me. 

Back to Oxford this afternoon for an ophthalmologist's appointment....

I haven't been on here for a while - in fact I've actually been better at dwelling on GBM less and getting on with life more - obviously I know that is because M is stable and things are on an even keel.  I am very aware how lucky we are with that - especially having logged back onto here today and caught up on some of entries.

M has just finished his 3rd chemo cycle - they upped the dose this time and while he has tolerated it he has been very very tired.

We are just waiting for his next MRI appt which will be this or next week - that hasn't half rolled round quickly. 

Not sure if I mentioned that M has also diagnosed with tuberous sclerosis, it was brought up at his very first appt at the John Ratcliffe Hospital back in October due to 'concerning brain cells (nothing to do with the tumour) so he was referred for a genetics appt - this was in May and then we had a letter in June to say he did have it and is being referred to St Georges Hospital in London for specialist care. 

At the moment I'm at the 'so what' stage of this as I can't see how it changes anything at all.I suppose I need to keep an open mind and hope this can add  something positive to his treatment options although oncologist thinks this has nothing to do with the tumour and is totally separate.  More mind scrambling. 

A colleagues wife died last weekend, she had been diagnosed initially with breast cancer about 6 years ago which spread  and she had a craniotomy 3 months ago to remove her brain tumour.  I never met her and was quite shocked by how much this news affected me.  I had thought I'd shed all my tears on this but have been back to playing sad music in bed and crying myself to sleep.  That probably sounds very odd but I try to keep this sorrow away from M so find doing this quite cathartic.  I suppose its all so close to our situation it really hits home.  

However as I said at the start of this post things are ok in the main and in the nicest possible way not needing or wanting to come on here for a month is a good sign. 

`Love and best wishes to everyone else.x

HI Pushkin,

Just to say I can totally relate to the upset of hearing other people's serious illness especially if it's the C word. I'd like to think I was always a fairly empathetic sort of person but now it really does hit very heard when I hear of someone newly widowed and having some idea of what they've been through and have yet to come. 

I'm also another one who puts on sad music just to get the tears flowing as a form of therapy. It needs to come out at some point so doing it in a sort of controlled way I think is a perfectly sensible thing to do. The only problem being when you're out with other people and music triggers you without you wanting a cry at that moment but that's just life I guess.

Sending a hug,

Chris