We Talk Brain Tumours

Mandy-will be thinking of you next week. Yes it will be a worrying time but your strength and love will get you through. x

Mandy,  our thoughts will be with you both.

Every good wish.  Doreen and Martyn. XXXX  XXXX

Hi all,

Just wanted to post this for those who who have children who are 18 and over (or a husband/wife)and are on DLA or ESA. If they are contributing by being on the council tax register, you as a family may be entitled to a 25% reduction on your council tax.

Also, if anyone in your house, no matter their age, is on DLA you are entitled to free loft and cavity wall insulation which will help reduce heating bills.  one reputable company that is doing this is: www.markgroup.co.uk The company are excellent.

Know this has nothing to do with BT, but so many of us have money concerns.

love to you all Peabs  xxxxxx   

Hi Mandy

Sorry that I brought back bad memories with my recent post as you have enough to cope with.  I hope that all goes well next week with your daughter. I am thinking of you & send my best wishes for the best possible outcome. Take care x

Thanks PEABS for your helpful post. Every little helps as the saying goes. Don't you just wish there was just one SINGLE place you could go to which gave you a PLAIN & SIMPLE list or explanation of what you might be entitled to given your set of circumstances. Always there are so many different depts to approach & so much form filling it does my head in!!!  

Sue, no apology required - I just wanted you to know how much I feel for you xx  And yes - form filling does my head in still!!!!!  I keep saying you need a 'key worker' who sorts everything out and maybe this would stop a lot of fraud and maybe the people who really need the benefits etc would get them more easily instead of fighting all the way.  Right, off my soap box before I start - again!

Hi Martyn - hope both you and Doreen are keeping as well as you can.  Take care xxx

Good morning,

Just having a Sunday catch up while watching the London Marathon. It was so nice to see some good news from a couple of people but sad to see that some of the people I have known for some time now are facing difficult times. Suetoy, Mandy sending you both love and wishing you strength. 

Not much to report with us. Paul told me yesterday he felt "a bit woolly around the ages" which for someone who always says he feels fine probably means he was feeling pretty grotty. He asked could he have some Dex yesterday so I've given him 4mg and he said he felt better last night. Last time we saw the GP we did talk about Dex and the GP said that because Dex can give the patient a sense of euphoria, it can be difficult to identify whether the drug is actually working on BT symptoms. Paul's next MRI is on 4th May so we'll know about 10 days later whether there is regrowth in either of the tumours.

Hello to new people and big hugs to all my good friends here. Martyn, you are as ever, doing a sterling job!

xxxx

Hello everyone,

I've not been on for a couple of weeks because of organising the two Brain tumour UK rowathon events (and training for the ordeal). I will catch up on the pages shortly, but I want to let you know how we have got on.

Yesterday was our big event in the shopping centre in Wolverhampton. We had 30 people rowing:

10 full marathons / 8 marathons / 3 x 10k / 2 team marathons of four each.

We started rowing at 9.00am and the last group started at 1.00 pm. The last group finished at 4.45pm. Along with us we had a terrific team of supporters, cheering on people as they came to the finish point, feeding us drinks on our way and crucially, spreading the word of our cause to the people of  Wolverhampton. On the day, we colleceted £775 in our buckets and when all the donations, sponsorships  and justgivingdonations are in we hope to exceed £5000.

A friend of mine took loads of photos and if you want to catch a flavour of the event, check the gallery on http://www.shermanshots.co.uk/#/gallery/brain-tumor-uk-wulfren/

Thank you too for those from here and from the brain tumour community on facebook who have encouraged me with this. I'll keep you posted as to how we did.

ps. I broke my personal target of three hours, completing the marathon distance in 2h.59'32" (close run thing!)

Martin.

Hi Martin

Well done,  I expect you used the saved seconds to get you breathe back!

Worn me out just reading about it!

take care

Ann

Wonderful achievement Martin, well done to all of you - added bonus for yourself breaking your own personal target too!  Well earned rest I hope today - sit back and watch the London marathon knowing you've done your bit already!

Thanks Sue - can't now wait til Wednesday, it's all dragging on so long and without even an explanation - not even a leaflet - bit strange really just to be told you've a bone tumour and then no info.  Katie has started to ask questions but we know nothing so they can't be answered.  Very unfair on her.  Anyway she is complaining of a similar pain in her other leg but I've told her she's become paranoid but we will have to mention it!!!  I'm sure it's simply pain from compensating though. 

I think Peter used to try and say he felt like Paul, though I can't be totally sure, but that was my interpretation - hope the Dex does help.  Now the anticipation of results looming - fingers crossed - always an extra stress on top of everything else.  Take care both of you xxx

Fantastic effort Martin.  5000 is very impressive. You should feel proud.
The pics gave a good impression of all the effort you all put in - and especially breaking your personal best.

Hope everyone is doing as well as possible.
CHxx