We Talk Brain Tumours

Martyn, hoping you are alright, we havent heard from you in a while

Love to you and Doreen xx

Afternoon all,

Friday we drove from Essex to Dorset and back for a funeral. Tony's childhood best friend (and bestman at our wedding) Mike's father had passed away after a short battle with pancreatic cancer.  Tony has many a tale of Pete a lighterman on The Thames and later he had his own tugboat business.  The port authority has given their blessing for his ashes to spread onto the Thames. Before the funeral we managed to fit in a lovely pub lunch in Wimbourne.

I now find funerals even more distressing than before diagnosis, selfish perhaps but all I can think about is maybe mine will be next.  Tony does his best, but I doubt he really understands, he still thinks I will be around for years........yep he is still cruising down that famous river in Egypt Da Nile!

Anyway come Friday night and I have a banging headache and was exhausted and no chance of a lie-in Saturday as Tony was teaching a two hour karate class (and I was supposed to take the photo's) which started at 9am!!!!  In reality, I only took a few then nipped upstairs to the viewing gallery and watched most of Englands opening rugby World Cup game against Argentina.....yep I love Rugby and I love New Zealand even more so I am in my element right now.

Today we have been out looking at new ponds for our almost finished garden and I have ironed the kids uniforms and got everything in order for the family as I am out with some girlfriends tonight!  A lovely carvery for me and no washing up - HEAVEN! No rest for the wicked though, off to visit my parents tomorrow with my younger sister as its Mum's birthday on Tuesday.

I feel even more exhausted just reading back my post

Love & Strength, to those who want or need it xx

Hi Wendy- it's www.budwigcenter.com we took her there but you can do it from a distance which is cheaper or at least get all the facts from the site and try your best at home. Most people I've told have taken one look at the details and given up but I feel its so worth it as we see such a difference in her. However, it took us months to persuade her to do the diet but now she's got no weight or steroid issues, her skin and hair are better, but most of all the fact that she looks so normal now and can actually do things for herself. I'm sure it's not a "miracle" cure but we couldn't stand by and just watch her deteriorate the way she was months ago. Sue XX

Hi Suziesue, 

just reading some of your posts and interested in the Budwig centre. When my husband was diagnosed grade 3 astrocytoma in April this year, we started the budwig diet from home (as best we could ) and i don't know if it's his positive attitude or age or the diet but he's doing really well. 

He's stopped having the Focc as he hates the taste of it, but were eating organic and non processed foods i have bought all the books "The oil protein diet " etc. So i am just trying to get him back on the flaxseed oil. 

My question is would you recommend going to the centre ? we were looking into it but not sure if it's worth it as we've been doing it ourselves . it does look like a lovley place though and maybe a nice break ? 

Debs - hope you have a lovely night out x

Just looked at my profile, that diagnosis in June seems years ago already!

Geetaral-- it was well worth us going- my daughter couldnt understand very much of what she needed to do before we went and didn't have the motivation for doing the diet.. I didnt get much of a break as she needed so much hands on care while we were there, but then she picked up during the 3rd week and we went to the beach, and to a restaurant.. I felt that it was a good time for me to be with her in case she didnt improve and if the worst happened at least we had "mother and daughter time" but now it's hard to tell she's ill execpt for the fits. It's a lot of money unless you really need to go-- they do a distance programme where you get supplements to get rid of the cancer and build up the immune system.. say it was Sue and Rachel who recommended it as we are still in touch with the clinic and made friends with everyone. It's good you eat organic and have cut out processed foods but you must cut out all sugar and have as many raw veggies as poss and juice the veggies too.. My daughter hated the budwig mixture but then I found she could take it if I added strawberries.

Moving us up

Hi

Ann suggested I put my post on here as there may be other people who can offer some help. Please note the information below is of my mum whom I love dearly. She is in a difficult place deciding if she should go ahead with treatment after the battle she has already had. She is an amazing woman but as well she is exhausted by what life has thrown her. I think on one had she needs a lifeline - some positive to hold onto....... I can think of one or two but overall I know the journey she is on (with us walking by her side) will be sad for us. Although one day she will be with my dad and if there is any peace in my heart... that gives it...THank you in advance

My mum who had survived breast cancer (mastectomy, 6 mths chemo, 15 doses radiotherapy and 10 mths herceptin) has found out she has 4 breast cancer metastases in her brain on the frontal lobe after3 months of a clear brain scan...... and 3 months of finishing herceptin.

Currently she only has slight balance issues, but less energy to do anything and difficulties with her vision (though saying that her vision has been very bad over last 2 years anyway). She had a seizure which prompted the brain scan.

No cancer else where below neck but only stopped herceptin on 21st April so she was clear of cancer below the neck but it is in the brain.

We know there is no cure but she is struggling to know if she has the energy and capacity for further ivasive treatments ie radiotherapy if ultimately the tumours return at some stage. She also if the radiotherapy shrinks the tumours can start chemo for 6 months with a 50/50 chance of survival for 2 - 3 years.

Has anyone had whole brain radiation therapy?

Did you or do you have any side effects?

Is there anything you can tell me about this?

Thanks xxx

Sparkle,

Not sure what you are hoping to hear, but this is what I know:

I made a wonderful friend on here called Sarah (Indie Chick).  She had breast cancer which eventually spread with 5 tumours to the brain in June 2009.  She had whole brain rads and it  gave her another 14 months of life.  Unfortunately due to all the steroids she had taken she developed diabetes and began to lose her sight also.  I hope this has not discouraged you, as Sarah and her family had lots of fun days out together and made lots of memories, she was only 39 when she died after a 6 year battle.

Like any of us who have radiation you lose hair to the area the radiation goes in & exits, so with whole brain, you lose the lot and there is no guarantee of it returning, I have a rather large 'sparse' spot at the front of my head (which I can almost cover with a comb over!).  There is tiredness, headaches & nausea but I did not experience ANY of those when I went through it, I was 41 and I don't know if age/fitness plays any part in that.  I did suffer slightly 6 weeks after, when the radiation peaks inside your head and my brain swelled, so I went on steroids for a short while.

Good luck to your Mum and perhaps there are others on here with more info, as mine was only partial rads and my experience of whole brain was through a friend.

Love & Strength to all who want or need it xx

The reality is that it is my mums decision - and although I can get the facts she is the one who ultimately makes the decision. She is 68 and very tired from the last treatments as they only finished two months ago -(herceptin anyway).

I want to thank you for sharing - I think it is about quality of life for my mum and the fact that what she has endured so far has completely overwhelmed her.

She is like you,amazing and courageous and strong as well as vulnerable to such horrid disease.

I am sorry about Indie -desperately young and so unfair but life is :( As to you love and light

Sparkle