We Talk Brain Tumours

Oops - by the way, I am doing a 13 mile sponsored midnight walk tonight with my 13 year old daughter to raise funds for the hospice, fingers crossed the rain will hold off and I have enough energy, I was at hospice from 7 this morning as mum started ringing me at 6!

Good luck and well done SWorthy and your daughter.How difficult is it to get a nurse in at night for a night shift? Can you get it free?

Hi Janique,

We have been offered Marie Curie but we don't yet need night care but we have applied for nhs funding for homecare to come and shower/bath her.

Sharron x

Wendy-- My daughter was VERY difficult to persuade to take the alternative supplements, as there are so many pills and potions to take on top of all her meds but we colour coded them all to match a printed out schedule, so she can see easily what's what. There are immune boosters, cancer-eating enzymes.. all sorts! Well worth a try but very expensive! It will have a cumulative effect, so although the last MRI showed growth we can see such an improvment in her that we are really hoping that one day a scan will show a reduction.  It's certainly made my life easier as I'm now at home here in (hot and sunny!!!) France with hubby instead of on Rachel's floor in england!! For a while anyway, she's depressed on her own again and has to do all her own cooking and look after the kids again. If she goes downhill I'll have to go back over so I must try to make the most of this respite and relax! Hard as I cant sleep for worrying. If you want further advice on the treatment I can PM you but others on here took one look at the site and said it wasnt for them-- it's for anyone who has the time, patience and money really-- friends fund-raised for our daughter and we are so happy they did as its given her a chance. Love Sue XXX

Hi new to this, Pam you sound so much like me with all your research and disscusions with your oncologist. I've just played the Radio show to my hubby and we're gonna speak to his oncologist asap, nothing to loose! Thanks xxxx

Hi Debs R

Thankyou for your reply - I am pleased to hear that i can still help others on this site.

I don't read evrything as it goes to fast for me these days but I always try to reply when I can relate to a post.

I do believe that Steve would have survived longer on PCV because when he was on Temozolide he was fine when having it with radio but didn't like it at the much higher dose and during that treatment his tumour grew 1cm so assume this treatment didn't work for him.

When we changed to PCV the tumour stayed the same size and he tolerated it quite well.

Steve was still coherant right to the end and was still trying to fight it - obviously, the tumour was affecting his memory, speech, seizures etc but we could still communicate and he still controlled what happened to him.

When he became completely immobile this caused him many problems as he then became at risk to infection and blood clots.  Over 12 weeks he fought off Cdif and two chest infections.

The cause of death was pulminery embolism/glioblastoma - blood clots to the lung which came from the immobile leg.

I do believe that if Steve had of been mobile he would of had more of a chance of a longer survival because when he was walking - but with difficulty - he never gave into it.

When we enquired about a trial for PDT I believe it was with the Yorkshire Laser Centre - see www.pdtforcancercure.com.

Hope this helps - it worth investigating.

Take care

Lol Ann x

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Pete - good to hear from you. I was getting concerned. Dad has all his meds in liquid form via syringe now as he has difficulty swallowing. He was given paracetamol this afternoon (after he bashed himself getting out of bed - or at least trying to - multiple times) and he was making a real fuss. I was giving it to him and he kept shaking his head. I gave him the first half no problems, then gave him the second half. He was grimacing and pointing to his water, I asked him to promise me he'd swallowed it. He nodded and when I turned to get his water he spat the whole lot out, all over the floor. My first instinct was to scold him but then I realised even what medications he takes are out of his control and he's just exerting a bit of it. I did point out to him that it wasn't acceptable and he wouldn't do it in his own home. Later on, when I was feeding him his lunch he held my hand and said sorry. Bless him.

SWorthey - I have spent all day at the hospice today with mum and dad. Mum is hysterical with fear at the thought of dad coming home on Tuesday. I can't judge her as I am not living this 24/7 but in my heart of hearts I like to think I could do it. Dad is desperate to come home, when he can speak coherently it is all he talks about. He is frightened he has been sent to the Hospice to die and is suspicious of everyone in there. My dad has started having accidents too as he has very little warning he needs to go and is unable to control when he starts going. Mum had just got him in to clean clothes today and he had another accident. She burst in to tears of frustration and dad kept saying sorry. Heartbreaking.  It took me, mum and a nurse to get him changed again and I wonder how she will cope when he is home. I think he will have to go in to nappies as bizarrely I feel they will give him more freedom. I am most worried about his swallowing/choking as the episodes are getting increasingly frequent and as he is immobile nothing is flowing, so to speak ....

To end on a positive note, now dad has been moved in to his own room (with en suite - I've told him he's gone 5 star) I feel happier taking the baby back in and they enjoyed some good quality time together today.

Love to all.

Naomi.xxxx

That was meant to say going in to nappies will give him more dignity, not freedom. What a stupid thing to say. As if anything about this disease equals freedom. Eugh, cross with myself. :(

SWorthey, my mum and cousin did 7 mile torchlight midnight walk for St Helena Hospice this year. They said it was the most amazing and moving thing they had ever done. Good luck, hope all goes well for you and your daughter.

Evening all!

I do hope no one takes offence at me posting this link, but a very good friend of ours from Glasgow has travelled to Birmingham and has run The Birmingham Canal Canter Marathon today, (4 hrs 51 mins 41 secs) to raise funds for Brain Tumour UK.  He has run half marathons before but never a full one and he rang me in tears afterwards to say he was absolutely shattered - but he said he'd do it and he did. If anyone wishes to support his efforts - thank you. He is going to present my husband with his certificate.  Love Debs x

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=STEVENCRAVEN&pageUrl=2

Just to say love to all & Sue would love the website - I would definitely like to take a closer look at what's involved. Thanks

Wendy XX