We Talk Brain Tumours

Pete, that bereavement leaflet reminds me of the one I was given before I started radiotherapy.  I had already been told I would lose a significant amount of hair, so this pamphlet type thing should help.  OH MY GAWD, the illustrations looked like something from the 60's with the way the scarves were wrapped etc.  It also told me that bold jewellery can distract from the fact you have no hair - IN WHAT BLOODY UNIVERSE IS THAT THEN!  Sorry it was so bad I almost cried laughing, well if it wasn't from laughing I would have been crying anyway.  Needless to say I binned that leaflet as soon I got home.

Why don't hospitals ask for patients input into these so called info sheets etc.  The info I got was cold hard facts about RT and stupid wear Pat Butcher ear-rings!  I found it all so removed from my situation. I wish I had we what we have here, offered before my surgery and treatment because although I knew medically what was going to happen, I felt so alone and lost at the time.

Three cheers for WTBT!!!!!!!!!!

Righto, off to finish my cuppa tea and to keep telling myself I am NOT peckish, I am NOT peckish ..... oh sod it, I AM peckish but I shall resist the urge to snack!

Love & strength to all who want or need it.

Nikla,

It sounds as though you're fully aware of the process and you have a remarkable grasp (more so than I ever did).

I hope that you get the reassurance that you're seeking.

Evening all, just a quickie! Oh please!

Doreen's sister just rang. She had put a brief notice in the local Ruthin, North Wales paper, this is where Doreen was born and raised. She was informed that Doreen's friend Lovaine, who was the same age and who she had been in school and the church choir with, had passed away 9 days after Doreen after a long battle with?  you've guessed it, a brain tumour!!  Martyn XXXX

Martyn, what a sad coincidence.  Hope you are looking after yourself properly xx

Hi Shelley

My hubby was diagnosed in May 2011 and I too look after him full time. It is what I wanted to do and that was never in question. However, after a few months it did all start to get on top of me. I am not naturally a person who asks for help easily (as are many on here I think) but I eventually had to. I was exhausted physically and emotionally and it started to effect my relationship with Tony. Plus, we weren't used to spending every waking moment together, it was an awful lot of stuff to get used to in a small space of time.

I eventually managed to organise six hours of respite care a week. A sitter comes in and keeps Tony company while I go shopping or get my hair done, cinema, anything. Those six hours kept me going for a long time. 

My lovely friends on WTBT who knew better than me kept telling me to ask for help but I just couldn't at first. Not now though, now I ask for EVERYTHING! Because before I was worried that people would think I'm a bad wife, or a failure but now I just think "I want to enjoy my time with my husband' and to do that I have to be fit and healthy, happy.

If you haven't already, you should apply for NHS Continuing Care to help fund the additional support you will need to take care of him at home. You may not feel you need much support now but that may change at some point. And don't forget Disability Benefits and Carers Allowance.

Taking care of my husband during his illness has been the hardest thing I have ever had to do. Despite all of that, I would not have wanted it any other way.

With much love

Pam

x

Hi Nikia

Your posts remind me so much of myself about six months ago. I was asking so many of the same questions. I'm a little more dog eared these days!

Pete's advice about the second opinion is spot on I'm afraid. I spent a few weeks pre-occupied with this too. The truth of the matter is, unfortunately, with these types of brain tumour there has been no medical breakthrough in terms of treatment since temozolomide which is an oral chemotherapy. And that was far too many years ago now. There is absolutely nothing on the horizon as far as I can tell. Most of the clinical trials I looked at were focusing on getting a better understanding of the existing options rather than researching new ones.

So, if your hubby is prescribed TMZ then you are pretty much getting the most up to date treatment available.

Tony's tumour was deemed inoperable so he didn't get the debulk. So it was straight to the six weeks of targetted radiotherapy combined with oral chemotherapy. After this, he was then put on oral chemotherapy - five days of tablets, once a month with a review at the end of the sixth cycle. I completely agree that this seems a little generic as it seems to be the route that a large proportion of BT sufferers are offered but the radiotherapy plan will be designed specifically to target your husband's tumour shape, size and position and I suppose that's as personal as they can get.

From what I can gather the only other options in terms of actual cancer treatment is PCV which temozolomide replaced and Avastin (which is not licensed in the UK so will need PCT funding approval before it is prescribed). Tony wasn't offered any of these so I haven't looked into either.

There was a flurry of excitement in our house for a while after we heard the radio 4 programme about clomipramine and, after much battling we managed to get it prescribed. But the side effects were just too harsh so we sadly gave up on that. I know of other people taking it though who aren't suffering side effects so it just wasn't for us. It was a very very long shot anyway. Although the oncologist has just agreed to put him back on it for a while at a much lower dose. 

Welcome aboard. So sorry that you're here. I absolutely would not have survived without WTBT and so glad you found us.

Pam

x

Martyn what a sad coincidence indeed. Or is it.......

Tony was also in a church choir...........

Food for thought.

:o) x

Well Guys

It looks like we've reached THAT stage on the journey. Tony saw an oncologist a few days ago and it was decided that his deterioration was such that it was clear the chemotherapy is no longer working. So they have decided to withdraw all treatment now and let things take their course.

We have been put in touch with the palliative care team who will guide us through the next and final stage of our journey. So a whole new bunch of people to meet, a whole new system to navigate, a whole new list of drugs and equipment to get familiar with and a whole new routine. It's beginning to look like the format of one of those crazy Japanese endurance game shows! No prize money though.

Tony is being completely brave. He isn't afraid to die, he's just very sad about what he will be missing. 

Many of you will know our journey recently has been one of great drama and difficulty and I am pleased to say that this now seems to have passed and we have reached a calm. 

There is lots of love, cuddles and affection. I describe it as being very similar to the emotions you feel when you first fall in love. Butterflies in the tummy, never wanting to be apart, holding hands and saying lovely things to each other. It is lovely from that perspective. 

The contrast couldn't be more stark from last week even.

He will be moved on Monday to the Countess Mountbatten Hospice in Southampton for an assessment. This is to ensure that the care package in place at home will be an appropriate one. He will then come home for the final stages. 

After spending so long in a state of fear and panic we now realise that there is nothing to be afraid of anymore. So we are just going to enjoy the time we have left.

Tony is a force of nature and is already arranging one long party. Every day until he dies he says. Great for him but exhausting for me having to whip out the Iceland prawn rings every day!

He's also still intent on investing in a racehorse and going on a holiday to Switzerland - no idea where that one came from. So he isn't taking this lying down at all.

With much love to you all wherever you are on this journey. I will keep you posted on developments as they happen and will no doubt be seeking your guidance and support as we move forward on the train.

Pam

x

Joanna

I hope you found the strength to get through yesterday. I have no doubt there was love. There is certainly plenty coming from this end.

I hope you got to say goodbye to your Dad in the way you wanted to.

Thinking of you now and hoping that you are doing OK.

Pam

x