We Talk Brain Tumours

Charlotte,

I am gob smacked that your mother as an unqualified practitioner is allowed to give IVs and I would get your mother to question that. Is she being monitered by district nurses and so on? Where do you live? I am a registered nurse and we alone are only allowed to give IVs with training- nursing assistants are not allowed. I would get your mum to look into that. Has your mum got any paperwork saying that she has the skills and the authority to do it?

As for your dad not being able to receive the 6 weeks chemo and radiotheraphy after his infection, I can understand that as his immune system is already compromised. Its so frustrating but I can see why he isn't allowed to have it.

As for dealing with the mental and emotional state of your dad, its a very difficult situation. Every single person has a different way of dealing with their situation. Its even more difficult for your dad as he is clearly so independant normally. He is having to come to terms with his illness, the loss of his driving license and the loss of his independance. It will take time, that is if he ever accepts it. If you, your mum and your family can support each other, you can help him deal with the changes. There are support groups out there that can help YOU as a family and if your dad wants support you can help him there. Thinking of all you there at this difficult time.

Julie, its a very difficult journey this isn't it? When you talked about taking flowers to Alans mums grave, I did shed a few tears. Its a cruel cruel diease this......

As for my own situation? Things are getting trickier. Hubs is no longer able to read, he also finds it very difficult to communicate to us. Thing is he can understand everything we say, its getting himself understood. He can talk for a bit and then he just talks as though he's had 14 vodak red bulls!! He does get very frustrated and we just have to help him suss out what he wants to say. He's got a scan being done tuesday then the following monday we see the oncologist where we are hoping that we can get the results. The thing is at the moment, he is still able to dress himself, wash himself, look after his personal needs etc, but its the other things like phone calls....I have to talk for him now, I have to read all his mail, stuff like that. He knows what is happening to him and he is aware of how frustrated he gets and how he sometimes snaps at us because of this frustration. He can't go on the computer now, he used to enjoy that,.....its all that sort of stuff. He also struggles with his mobility now which he is trying to come to terms with. He is still able to walk though with a stick and he has to take his time, but at least at the moment he still has that.

We had 20 good months before this latest wretch made a return. We have been fortunate. I would say to new people coming here, never give up hoping. There are several people that are breaking the odds out there. Never give up, never stop believing. But on the other hand,never take time for granted and live one day at a time.

Love to all the regulars on here. Thinking of you all.

Just wanted to pop by and say I am still reading posts when time allows and think of you all a LOT.  Yesterday another BT warrior lost his fight.  I met his wife on here and we are now Facebook friends.  My heart hurts for her and her girls.  Peace be the journey Byron, by all accounts a very special man indeed.

Hope all is as well as can be expected with the passengers on here, new & old (time wise not age necessarily).

I think I may be one of the people Julie was referring to when it comes to beating the odds.  I was given 2.5 to 3 years in Jan 2009, so as you can see I have passed my expiry date and in Jan 2012 had another clear scan - no significant change or enhancement to surgery bed (as good as it gets) and don't have to go back till Jan 2013 unless things change inbetween.  I do feel incredibly lucky, yes life is a lot harder with me not working and having 3 fashion & gadget conscious teenagers, but my husband and I are making the best of it, which is all anyone can do.

remember: WE ARE NOT STATISTICS, WE ARE UNIQUE INDIVDUALS

Love & strength to all who want or need it.

Forgive me if I have attacked this website from the wrong direction! And advise how I do go about getting advice please!!

Hi folks, I was diagnosed back in Sep 11 with a Grade 3 astrocytoma left frontal lobe.  After 3 cycles of PCV chemo, a further MRI has shown that the bad boy indeed continues to grow.

I'm 42 years old, in otherwise very good health, and other than getting forgetful (isn't that just age related?) I had no idea anything was wrong.......(other than an inability to navigate websites perhaps!)

Now my consultant would like me to undergo radiotherapy, which I have never been sold on - my quality of life is excellent (apart from a slow divorce!) I'm far from resolved as to having treatment that may help, but equally, may not!

So, any anecdotes as to those that have had / declined radiotherapy, and how it went for them? Other treatments that folks have heard of, yet to try and wanted to?

Thanks for all your interest, and best wishes to all!

motleyruss

Debs, so sorry to hear of Bryon.  It's always so difficult to read of someone else's passing.

And Motley.  No, you've attacked us by the right direction!

I'm afraid I have no personal experience of your problem, but I'm sure that someone will be able to advise you, or at least to offer some support.

You're right to be concerned about radiotherapy, as it affects different people in different ways and may or may not give you continued good quality of life.

You also need to weigh up what options you have if the condition grows worse.  It might be that the RT will be more affective when you're strong and won't help you out of a dark hole.

However, I'm not talking from experience here, but trying to give you things to think about and discuss further.

Best regards.

Cathi and Zanandu - thank you so much for your responses. It's been another tough day but it is really comforting to come on here and see that people have taken the time to offer their advice and support. My dad has become much more accepting of me - the trouble is, he has now turned against my mum, claiming she doesn't care any more. It's just an appauling accusation, as she has dedicated all her time and energy to caring for him over the past few weeks, barely having a second to herself. But he has always been someone who cannot express his emotions other than by getting angry and I guess this is him now taking his anger about the tumour out on other people.

Zanandu, I know, it is unbelievable that my mum is allowed to do the antibiotics but we were literally given the two alternatives: either he stays in hospital or a family member trains to do it at home. He does have a port so she is not actually injecting him, but it is still a complex process. We are desperately trying to find some sort of support service so that my mum doesn't have to continue doing it three times a day. You are right about the importance of the rest of the family supporting each other - my mum and I are getting each other through this, I just worry about what is going to happen when I have to go back to work next week (in Germany). I am sorry to hear about your husband's difficulties with speech, mobility etc., these sound similar to my dad's. It's awful because not being able to read, go on the computer etc. has such a negative impact on someone's quality of life. I am happy for you that your husband had 20 good months before this. I don't know how long my dad has left, but I question whether he will be able to get much out of that time as there is very little he can enjoy any more.

Cathi, thanks for the tip about the time it takes to get outside support in place - we are in the process of this now, we have been referred to a Macmillan nurse. We have not yet done the Carer's Assessment or Home Care Assessment offered by social services - does anyone have any experience of these? You say that the hurtful comments are par for the course for BT carers - I guess it is kind of reassuring that this is normal! I can't even feel sadness about  the prospect of losing my dad at the moment, I am just too agitated about what he is going to say and do next.

On a more general note - I don't know if everyone/anyone on these boards is familiar with Ben A. WIlliams' book, Surviving Terminal Cancer? I eagerly read it a few weeks ago, thinking it could help my dad - I think it is probably too late for that now but I would urge others to read it as it is a very well-written and informative account of how one GBM patient successfully defeated the disease by being very proactive about researching and obtaining promising new treatments.

Best wishes to all.

motleyruss,

I had RT following the total resection of my grade 3 Oligodendroglioma, right frontal lobe 3 years ago.  It's only now 3 years later that I have started to experience a very light tingling in my left hand (which to be honest I thought my tumour had returned and was causing it) only in Jan of this year I had yet another clear MRI - I know I am lucky.

My short-term memory is shockingly bad, but it's no worse than straight after treatment, I only had 6 weeks in between surgery & RT so can't say if its worse or not.  The loss of hair (and fact it hasn't ever fully regrown) was the biggest downside to me, Buttercup my tumour was located right under the hairline, so I have to be very creative with my comb-over now !

I breezed through treatment (then again I breezed through surgery) not meaning to sound flippant, but I followed all their advice, starting using the aqueous cream from day 1, drank lots of water etc.  I had no nausea, no headaches and no fatigue (unlike the chemo!).

All I can say is, I don't regret having the RT but if you can get proton RT that's even better.  It doesn't destroy any healthy brain.

Hope that helps & waving to all on the train.

Love & strength to those who want or need it xxx

Hi motleyruss, my son was diagnosed with a  Grade 3 astrocytoma in 2004  when he was 35.
He had surgery followed by 6 weeks of radiotherapy and managed to work whilst receiving the radiotherapy. The hospital gave him the latest appointment time each day, so he just left work early. Apart from losing his hair, feeling a little tired than usual and putting on weight due to taking the steroids,  he managed fine.
He wasn't allowed to drive and so we took him each day. 

Eventually after 4 years, he was discharged from oncology and life carried on. Unfortunately the tumour showed signs of regrowth last year, so he has had a course of chemo, in the form of tablets which he took daily at home for 5 days each month for 6 months. His latest scan showed signs of shrinkage, so we wait for next scan in May and see what happens. Hope this has helped you.
Kathy  

Good morning to all

I'm sorry I'm not playing a supporting role, but finding it just a little difficult at the moment. I had a big shock yesterday, when I found that one of our dear friends who was one of the original members on this thread 6/7 years ago, passed away in the past few days from this dreadful disease. She was in her 30's with a young son.  She was   Juleigh  and her profile is still on the site. 

Good wishes to you all.  Martyn XXXX

Martyn,

You most certainly do NOT need to apologise, you have been a tireless supporter of this thread and have had your own share of heartache to deal with and no one here understands more what that's like.

I am sorry to hear of your friends passing, peace be the journey Juleigh xx

Thank you Debs.

I just never imagined it would be like this! I suppose the past 9 years took over my life, and it will take a little longer to emerge from it? You are an incredible person and I am privileged to have you as a friend. Long may that remain. Love to you and all our friends here. Martyn XXXX