We Talk Brain Tumours

You're right of course, I'll give them a call tomorrow, they are normally very inefficient and we often have to wait several hours to see the oncologist even with a timed appointment and so its nothing new. Understandably no-one feels like complaining because it is the guy who is providing all of your treatment that you are complaining about and so it feels potentially counter-productive!

It was fantastic to go on a "normal" holiday and Ali was so proud at managing to stay out all day. Fingers crossed anyway and I'll get things moving thanks for the advice as always...

Charlie

Good Morning all,

Rona - i do hope your dad is feeling the benefit of the hospice and that you are too, hope you have managed a few peaceful nights!  xxx

Mandy - Well for the first time since new year i went home at the weekend, my poor wee mum was unwell and so on valentines day i took her flowers, red wine and lemsip, made her dinner and talked over her kitchen design plans.  My sister also got the notion to surprise her and came in with valentine brownies and home made ice cream.  I did get upset when leaving as she stood at the door and waited and waved until we left...exactly what dad used to do.  I hope you are doing ok and that the kids are keeping you occupied..how is Josh? xx

The firmeans ball is growing arms and legs now...Brain tumour UK have been in touch and have asked how we feel about the money raised going to the creation of a support centre in the west of Scotland, for BT sufferers and their families...i never even knew there wasn't one.  So that can only be a good thing i guess.

CH - How are you? Is spring nearly there...how is Bluebelle? xx

Martyn - Much love to you and Doreen xx

To everyone else on the train....love, hugs and wishing you much strength

Bx

Hi- Morning all. There is some pancake mix, lemon wedges and maple syrup left over in the guards van- just in case anyone is interested. Best wishes to all - Robin.

HI Becca,

Is the fireman's ball a sort of May Ball? Have you got one of those Just Giving pages for your Mac and fb friends? We can still buy a ticket even if we can't go to the ball!  Just a thought. Otherwise, hope you are going on OK.

BB is either a proper little madam or the sweetest dog in the world, I can't be certain on any day which she will be that day!

Robin, hhmm, not sure about maple syrup, sugar I think but otherwsie sounds delish!

Miggins (aka CH) xx

ugh no - ate 7 last night!  Yes I know I didnt have to but pancakes are sooo good!

Hi all

Haven't posted for a while, just wanted to stop by.

The firemans's ball sounds really exciting Becca and it is good that Brain Tumour UK have specified what the money would go towards, sometimes I wonder how much of the money that people raise gets swallowed up in admin, but that doesn't sound the case for BTUK. XX

The train does seem quiet without Martyn- love to you and Doreen XX

Miggins- Bluebelle sounds delightful!  Hope you are doing ok XX

As for us- Mum is doing alright, still getting very tired, and sick from time to time, problems with memory still, but no deterioration and no specific signs of any recurrance so all in all very positive still.  Scan in March and consulation in April.  It's been 2 years now since her chemo started.

Sorry to have not replied to everyone in person, but I send my love and hugs to everyone on the train.

Love Ali xx

Hello,

Miggins (will need to get used to it :o)) Its the first weekend in March.  The just giving site is a fantastic idea, will speak to the event organisers and suggest it!  Its a dance that is held every year and always has a good turn out...bit concerned that they have hiked the ticket prices up to £10 (its only a wee town and its normally £5) but if everyone goes that usually does then fantastic...all money in BTUK's pocket! Will let you know more!  You will need to add more photos of BB so we can see how big she is now!  I asked Martin if we could get a dog - unfortunately  after his recent Seamus sitting experience, whilst mum rach and i were in Paris...it looks like a pooch is off the cards ( i had warned him that Seamus keeps his own counsel and does exactly what he wants when he wants  :O)) XXXXXXXXXX

Ali24 - Glad things are stable for you and mum at the moment...we had periods like that with dad, where day trips were attempted (not so much enjoyed by him) and evenings spent listenting to his fav songs and watching vids on youtube..will always relish those memories as they were the best of times throughout the darkest daysxx   And yeah your right - it is good to see where the money will actually be going - i raised quite a lot of money through various 10ks in the past three years and have never known what cancer research or macmillan have done with it!

Well the headstone will be layed on Monday, like i have said before..i know its only a piece of stone but in many ways im dreading it, the words have been specially chosen and  images picked to represent what we knew were his favourite things...everything is covered that represents his life.. i just find it sad... i know there will never be enough words or space on a stone that would give room to describe just how wonderful he really was.  Although i know i have accepted it, there is a finality to it too, its hard to believe how much every aspect of mine and my families life has changed.

And i can see that i am off on a rambling path yet again!

Love to everyone

xxxxx

So, the question is:

Have the Red Indians finally cornered Casey Jones? And will they ever let him out again?

Best wishes to all - Robin

ps - just had word from the Bristol outpost that snow is falling

I have to say I struggled with the headstone laying.  I think it was because I wasn't prepared for the 'ceremony' of it, especially as we didnt get the stone until a good 5 months after he died.  Ours was a plaque for the ashes which were intered but we had to carry the ashes and follow behing the vicar and I just wasn't prepared for another mini funeral service.  If I had known I would have steeled myself and my hubbie to it more and maybe not been so upset.  It might be worth finding out what the procedure will be so you know what to expect?  Hope it all goes okay.

Hello to everyone, It's another late one from 'the skeins'. 

I've not read all the intervening posts since I was last on here, but I feel the need to update on our situation.

The day after I last posted (Tuesday 10th) we had a visit from the macmillan nurse. To this point , I had been sceptical as to how well this lady related to Becky's situation and feelings. However, I sat and witnessed a very professional and well constructed exchange between them. It resulted in an unequivocal agreement that Becky wanted to go into the local hospice. Brabara (Becky's sister) and I were taken aback as Becky has always been resistant to any contact with the hospice. She used to go there on Fridays to the day unit as we could not cover Fridays at home due to my work, but she took every excuse to escape. But without doubt she expressed the wish to go into the in patient ward. After probing this, my understanding was that Becky had had enough and wanted to go the hospice in patient ward as she associated this as a place to go to die. Also one of her biggest fears is having another fit and perhaps she feel this would be a better place to respond to a fit than being at home.

The hospice bed became available 36hours later and a whirlwind morning was complted by us having lunchtime sandwiches in the hospice. Since then, she has been superbly looked after in the hospice. I stay overnight on a bed in Becky's room, or i am substituted by my sister in law who is here while Becky's sister has gone home for a much needed break away.

The hospice are monitoring Becky, getting the best control of her pin management and general alertness. She is now down to 6mg dex, but her morphine is up to counteract the frequent headaches. Initially she was very agitated, as she had been at home, but gradually they are finding a better balance and Becky has been generally comfortable. 

I was amazed Becky wanted to go there, but after this time, i feel the care she is receiving is better than we could provide at home. We remain an important part of it as at lest one of us stays over (it's my night off) and is on hand all through the night.

It is not certain that Becky will stay in hospice but i feel it would be very hard for us to give Becky the same feeling of security as she has at the moment. We have to see how things progress from here. Currently, Becky is deteriorating gradually and the hospice are able to keep pace with this and generally keep her comfortable.

I feel this is a real hard time for the two children, who are watching on from the side-lines. 

Becky's friend Liz died on Mon 8th Feb. Her daughter is best friend of our girl Isobel. The funeral is this Monday and izzy, Joe and I will all go to this. Liz's family have been in to the hospice several times this week which has been good therapy for us all.

Love to all, 

Martin.