We Talk Brain Tumours

Hello to everyone at another sad time,

it is at it's worst when we hear of others in our community in deep distress. But at the same time these people have helped us all the way and that help is invaluable. My sense of community is in no way diminished by the passing of my Becky. She and I have a persisting affinity with anyone who comes onto this site.

Tonight, me and kid's went for barbecue to our friends who also recently lost their  mum (Becky's best friend). We've had a really good night (bit chilly) and I think we are all moving on, just as Becky and Liz would want us to.

Robin and Jan, Martyn and Doreen, I am thinking of your struggle constantly and I hope that you are both getting every support nthat you feel you need at the moment.

On  a personally upbeat note, our fundraising efforts for Brain Tumour Uk have gone pretty well. Our indoor rowing events in Telford (21st/March ) and in Wolverhampton (24th April) when combined will have raised in excess of £10,000 for the new neuro oncology research unit at wolverhampton university.

You can view photos on www.shermanshots.co.uk and look for wolverhampton row on the gallery. I'm the one with the least hair, and izzy is the last of the four young girls rowing. Earlier,she is seen as one of the cheer leaders.

Our next events are the Bridgnorth walk (22 miles on bank holiday monday) and aSnowdon walk on 27th June.  Then the London 10K on 10th July!

All events in aid of ' Me'therapy' and Brain Tumour UK.

wishing everybody  well,

Martin.

Hello to all you dear passengers on this remorseless train.  I don't get to visit often but here I am today and want to wish each of you continued strength and courage in your difficult journey.

Particularly, I want to add to the many fine words about Martyn and Doreen, two long time passengers who have made life so much more bearable for us all.

I'm one of the oldies on thie train, unable to post regularly now due to eyesight problems.  For those who remember me and my twin sister, Sue who has primary central nervous system lymphoma and hence been a passenger on this train for the last three years, I should tell you that Sue is still in good spirits and comforted by her loving family as she struggles with the disabilities imposed by the chemo and radiotherapy treatments.  It has bought her enough time to see one daughter married and the other bring a gorgeous grandson into the world.  She feels blessed and I am totally impressed by her courage.

Martyn, you and Doreen have been an inspiration to us all and you especially have touched many hearts.  Your sense of humour even in your darkest days is nothing short of heroic.  I take my hat off to you and I send many good wishes your way as you face this part of your journey.  May the warm thoughts of all your good friends on this website, old and new, bring comfort to you.

Love and best wishes.

Jill

Martyn

Sorry to hear that things have taken a turn for the worse, as the other Grade 3 sufferers on the thread we have always held you up as how to cope with this awful thing. We are both thinking of you. Take care

Charlie & Ali

just want to send lots of xxx to Marytn and Doreen..xxxxxxxxxxxxxx   You have always been here for me so   a BIG thank  you to you both. xxxxxxxxxxxxxx

Martin.... I normally post on parents of children with... although not very often!  I noticed that you will be at Snowden 27th June... a bit of trivia but my husband , son and 11 friends will be completing the '3 Peaks challenge' same day... So, if you see a group of very tired , red eyed  wobbly legged people with some kind of identification that they're supporting SDBTT ...you'll have spotted them !!  Good luck with your fundraising, you've done so well .

Martin Brilliant fundraising efforts. Well done to you all. Your family & friends too Lynn deserve a pat on the back....hope they all make it to the top!!!

I haven't posted too much recently as am finding it all too depressingly similar to other peoples struggles. We are getting help now from hospice at home in a bid to enable me to try & get some rest. Not certain it is working yet or if it ever will but  at least I get to lie on my bed instead of the settee for a few nights a week. The hospice nurses have been coming in overnight now for about the last month and this Saturday one of the hospice nurses is coming to us during the day so that I can spend some time away from the house and with my youngest daughter. I must admit that it will be a relief as unfortunately Pete's personality has been changed by the tumour/medication and I am most in the firing line. I know it is the BT making him so unreasonable and grumpy with me but being persistently 'told off' does take its toll. Added to that he is suffering with horrible hallucinations involving snakes (which always were something he had a real phobia about) combined with being convinced we are not at home anymore and trying to deal with this nature of the illness is also tough. I am however travelling to all parts of this country & sometimes abroad according to Pete ......only trouble is I was never very good at geography and so never guess correctly where we are!!!!!!  All joking apart I do struggle as his BT has distanced Pete from me. Don't get me wrong I still love him and I'm sure buried deep within Pete is his love for me but regretably I don't think now it will ever surface.  

Pete has a syringe driver fitted to give him a steady dose of steroids. They did increase to 12 mg for a 5 day period to give him a boost as he was sleeping most of the day & having trouble with his swallowing. They've now reduced back down to 8 mg as he got even more agitated & confused about his wherabouts and the snakes were attacking him. The driver helped make him a bit more alert during the day initially which was good but gradually again he is slipping back to being asleep more than being awake even with the driver fitted so I know it is not going to help for much longer. Eating is more difficult & spasmodic although he still surprises me sometimes with his food requests. (He wouldn't believe that all the bakers had sold out of Croissants when we were in a French town recently on our imaginary travels.  Time of day is not something he is aware of anymore either so thinking up a feasible story at 3.30 in the morning takes some doing &  I 'm obviously not quick witted enough at that time of day as he was still requesting them about 2 hours later. An actress I am not!!!

I do think of you all lots & lots and know that I am not alone in my struggles as whatever stage of the journey we are on it is difficult for us all. I send love and continued strength to you all. I am sorry that I can't tell you some uplifting news, we all need it.

Take care

Sue xx       

Sue, I just want to take my hat off to you - your amazing strength is something to be admired - it is horrible to know that your Pete is suffering this way and has been doing so for so long now.  This illness is truly dreadful.  I hope you do manage to have some you time with your daughter - I guess she could do with it too.  We all know how we take our frustrations out on those who are closest to us but still it must hurt to be constantly criticised - Keep those memories near to your heart,of when Pete was your Pete and showed he loved you - take care, think of you often xxx

Sue - your post rings so true with me at the moment. We are exeperiencing exactly the same thin with my mum. Not the snakes and not the different places. She keeps imaging that people are with her and they're not. She then gets very distressed beacuse she can't find them, or they've left teh room. Likewse time means nothing to her and she's sleeping loads but then is awake early in the morning.

She has been taken off to hospital this afternoon as she has deteriorated again over teh weekend. She is being sick all the time and not eating or drinking so she's gone in for 2 reasons. One because the GP this morning suspected that she would need  a drip within 24 hours unless she picked up so thought that being in hospital would be easer to facilitate that if it's needed. But also they have brought the scan forward and it was easier to arrange ambulance transport for today than it is to guarantee that it would come in time for tomorrow. As she is now an in-patient she may get her scan analysed immediately rather than having to wait for the consultant appt. Mind you they've also brought that forward til Thursday so then we'll know definitely what exactly is happening.

So, difficult times for lots of us - too many to mention. I'm sorry.

Sue, I also think of  you a lot and just can't say how much I admire you coping with what this most horrible of illnesses is doing to your Pete.

It must be so hard for you. You post brought tears to my eyes. We also once had chips at 9am and an Indian at 3pm but that is the least you have to contend with isn't it. Getting a bit of sleep will help you some.

Sending you love and a big hug.

Jill, great to hear from you. I wonder often how you are. xx
Sally, thoughts also with you. Hard days for you I know. Take care.
CHxx

Jill,  how lovely to hear from you again, sorry about the sight problem. You will never know how uplifting your message was, you are indeed a true friend thank you. Jim also rang last night and updated us with Sue's situation.

Charlie and Jenny( as always) thank you both for your kind thoughts.

Robin and Jan, Sue and Pete, Sally and Mum and all others approaching the station, our thoughts are with you.

Doreen and Martyn XXXX