Hello everyone

Thankyou HecticFae for sharing your story. This will help many many people in knowing they are not alone.

What a beautiful and eloquent post.  My heart goes out to you.  Sending so much love xxx

That was a lovely read, I am just back from the Hospital, as I had a 08:00 Radiotherapy session. I also have a GBM4 tumour, in my frontal lobe part of my brain. was having radio and chemo, but Dr rang to say stop taking the chemo, as it is making my white blood cell count low. now on radio only with bloods taken every other day.

I like the broken head explanation, I think i might use that on the Grandchildren. 

We are always here, and take what you want from our replies.

you take care

Glenn

Thank you for the very kind reply Wishing you a wonderful & positive day one filled with all things fabulous,& filled with love So sorry to read your story life must be pretty tough for you,upsets me to read about your son,it must be so hard on you no matter how you approach it & I wish you all the love in the world all the peace in the world,and the strength in the world to get through this Have a beautiful day as best you can & thank you again x x 

Thank you so much for the lovely & kind reply So sorry to read about your son,and your situation my heart go's out to you also x x May you have a wonderful day today,both of you,may it be filled with all things wonderful,and with peace & love Thank you for being here,all the love in the world to you x 

Good morning to you Madesp Wishing you a wonderful day,filled with hope peace and so much more,thank you for the kind reply,and for being here peace always

HecticFae thank you for your kindness.

All I can say is that you are in the best position in your case as the tumour was removed. My son only managed palliative radiotherapy as they only removed 50% of a very large tumour so outlook was never going to be good and we couldn't take him abroad as be was advised not to fly.

You have a choice now to look at alternatives. I find USA take different approaches and try more tailored treatment than the UK. I joined the forum on an  American site for Brain Tumours and found the Americans BT patients are given their pathology notes do they can go and research their own treatments.I found this forum so very interesting even though I could not apply any of it or save my son. They are much more informed and in my opinion live longer. My son  probably had his tumour a very long time but because he'd never had a previous scan it is difficult to say when it started. So by the time the symptoms came it was already so large and infiltrated much of his brain. 

You have a chance to look at what else is out there. Grab it if you can. The NHS  does a one-size-fits-all approach and won't look at the positives of any other treatments unless it has been proved by a clinical trial.

I'm talking about articles on repurposed drugs that are shown to be effective with GBM but pharmaceutical companies are not interested in doing trials as the drugs are cheap to buy therefore no money in it for them.

Gosh I can go on and on but enough said for now. I ve given enough to chew on. 

Wishing you a very positive outcome and good health always. You are in my prayers.

Good morning to you Glenn,I am sorry to read your story so sorry indeed,and more so with the white cell count being on the low side it is a balancing act isn't it trying this trying that,in order that balance can be found

I hope so much that all will be well with you that your cell count will increase,and that if needed you can always try the Chemo again,as and when needed it is such a fine balance trying to get things right,and can be very hard on us indeed in many ways

Those early appts also when you are tired,can be a pain,and your tired with not much sleep and so on

I hope so much that the radiothearpy will help you,and not be too unkind on your cell count,and that you will come through this current situation in the best possible way

I had 4 hours sleep,so I am pleased about that those steroids seem to keep you well to me they do,as if you are running a marathon,with worn out legs,as if running up a hill and not getting very far etc I find it funny that you are told to rest up,yet those things do the opposite and I feel like the old Benny Hill tune or rather hear it in my head,when simply trying to make a cup of coffee or tea Sillyness on my part aside,I hope that all works out in a postive way for you,that your cell count will raise,and soon Wishing you the best of days may today be a good one for you,and I am glad that you like my silly term of Broken headed Dr I am not sure when I see him again soon he well,but well it is meant in a nice way Bye for now and until the next time,all the very best of wishes for improved health and cells for you,thank you for sharing your experience with this illness,mine is almost at the back coming from mid section,and I am still none the wiser Have the very best day that you can,and weekend also,as it will soon be upon us and I hope that you will soon have much improvement I really do Thank you for being here...

The steroids played havoc with my sleep for ages, all the way through my radiotherapy I was awake at like 4am everyday. Oddly not long after the radiotherapy finished I started sleeping longer through the night, whether that was due to eventually getting used to being on them for a sustained period of time or whether it was the tiredness of the treatment finally catching up with me it would be hard to say! 

Dear Mad

I am so sorry to read this,I apologise for my lateness in replying also,& should I get disjointed in what I say I apologise beforehand

When I was in the hospital some what not with it anyway I do remember Dr's coming to a lady who was in there privatley and they told 

her she would be a candidate for proton thearpy,also some thing about a knife gamma knife or some such this is all I heard,as they all 

sounded excited about this,as did the lady and they moved her to a private room No idea what transpired after this,as I  did not see her

again,when I was doing my physio walk about thing,a nurse told me that many have it,what ever it is,and many recover well,it is done

the therapy thing either one of two ways 1 being you paid for it and or two based on the projected outcome,but most of all as you say

for research and drug companies,now as to whether or not this is true I do not know,but I asked my Neurosurgeon, would I be able to 

have some thing like it Perhaps it is because I do not have extra money,or perhaps because I am a grade 4,or perhaps I am unsuitable

due to the heart attack last year I do not know,but I was told simply that no this was not for me,that some drug companies paid for some

or would allow them onto a trial,but critera had to be met etc so on so forth

I had seen a video,which a lovely kind nurse showed me on you tube I think it was which a young chap,with a stage 4 tumour had,and

how he went there to help people as poorly as he was,and the nurse said to me this type of younger person needs credit as he had the

illness,and was in many ways  was better placed to help others than some of the dr's etc,as he came across as being very self aware 

with great insight into his condition,and could explain things he had undergone,his treatment his life how he got by so on so forth in

a way that undertandable,and at approx 24 years old had had his for 12 months,it came out of the blue,just a headache and a few days

of feeling a little like I did,then he was admitted for surgery and chemo etc and radio thearpy,and I think was part funded by a hospital 

but am not sure on that one,his insurance helped cost wise etc,and I think from what I can remember,yes he did get a little funding for

promoting the hospital who looked after him He has such a positive outlook also,and is a very kind and caring young chap,who is declining quickly now sadly

With regard to your son I am so very sorry to have read this so very sorry indeed,you would think that perhaps scans would be done

quickly and so on,but I find that from friends who have other illness the wait for one,is overwhelming unless of course you can pay 

which many can not do so.so perhaps this is a factor to also look at Some people with other illness seem to become very ill waiting to

get what was once a simple scan,as the nhs seems to be over whelmed and not just due to the covid thing also which is so very sad indeed 

I am so sorry for you and your son and wish that there was some thing more that I could do say to help you and help you cope it must

be so worrying for you and so upsetting my words perhaps will not bring you any help nor comfort,as I am new to it all in this sense,and

have no idea,what I am talking about,nor the terms and so on but I am truly sorry Another nurse told me that at one time the old polio

vaccine was used,as were cancer cells to perhaps acclerate the healthy cells,and kick start the immune system tricking it into thinking

that it could repair itself and at some stage many years ago when GBM was some thing usually not touched,due to risk or lack of interest from the drug companies made some dedicated Dr's re think re evaluate the gbm one and some times the polio one worked well

I really have no idea,it is just some thing they were discussing remembering old times etc,and the ways of treating this back then if possible

All the grades and so on go right over my head,as does the catergory the nature of the whys wherefores and so on,it seems to be that

it is an exacting science where grades are matched with what is found,and then taken from there but again,it is over whelming fo me

I worked for many years as a Theatre sister but retired 5 years ago,I have never been in theatre with any brain related condition,other than accidents trauma and so on and most of what I did was in other areas 

The Americans seem to be very informed indeed perhaps more so because of the way their insurance works how it is covered etc an so forth,as it is very different there than here,and yes they can have most of their information to research what they have no matter what that is,and then they can take some control in some ways where as here not as much..

I am going to get some sleep now if I can as to whether I will we will have to see

From the bottom of heart I am so very sorry to learn this about your some so truly sorry

Many heaet felt thanks for the help and advice that you have given me with all what is happening for you x  All the live in the worldd to you both.NOW and always God Bless you and take car of you and keep you safe

x x x