We Talk Brain Tumours

Tall Gentleman Tries Seduction Everyday?

Debs we are also awaiting weekly blood tests. It's getting as bad as waiting for MRI's.

Good Luck tomorrow.

xx

Hi SD,

I must first apologise for only just spotting your post, we are still getting used to this new site and at my age I don't like change!

I have no experience of brain tumours as secondaries although like you I am my wife's carer.

I'm sure there were some folk on the old thread who were dealing with similar and hopefully they will all find their way here eventually.

What dosage of steroids is your wife on and is she also taking painkillers?

The oncologist or MacMillan nurse should be able to put you in touch with a palliative consultant who are experts in pain relief, they are very often anesthetists and we know from personal experience how helpful they can be.

Best wishes to you both.

Hooray,

Our little China has arrived and a barmaid as well! In one hand a pint of guiness, in the other a duster, how much better can it get?

Is anyone else finding this site very slow? It takes an age to refresh for me, probably be quicker now the barmaid's arrived.

Cheers all,

MartynXXXX

How come we're back up to 5 stars - flippin site not much makes sense!

Hi guys. 

Not enjoying this new site and it is sad to find the old thread has not been transferred over. The site shut down right over the period I needed something constant in my life and now that it is back it has changed so much.  i really don't want change at the moment, too much has changed in my life these last two weeks.

As many of you know Harry passed away on the 12th September.  We had his funeral on the 17th September, very quick but I needed to lay him to rest and I also had our daughters 3rd birthday on Monday 21st and I just couldn't deal with her birthday and have funeral still looming.  I hope that I gave Harry the send off that he would have enjoyed.  Truely shocked at the huge number of people who attend his funeral, I have been advised there must have been about 300 people who came to pay tribute to Harry.  Certainly not everyone got into the crematorium, and a number of people where outside.  Harry was a true gentleman, touched a lot of people and very much liked/loved by many, he even got decent obituary in the sports page of the Birmingham Post http://www.birminghampost.net/midlands-birmingham-sport/west-midlands-sports/rfu-news/2009/09/17/tributes-to-bournville-rugby-club-stalwart-harry-tempest-65233-24710721/.

As for me, I feel like I have a massive hole in my life, I miss him so much and really can't imagine where i go from here.  I know that they say as time goes on it gets easier but at the moment life just feels so raw.  I just want my Harry back without a bloody monster brain tumour.

Amelia is doing really well, we have had two sessions with a child bereavement person and she is more than happy with her, but did express it was time to deal with me so I am booked to see a bereavement support person next week.  For amelia, her daddy has become a star and she loves this, we saw the stars for the first time on Sunday night and she was so excited that daddy was 'sitting' on a star with her penguin who she gave to daddy while he was at the hospice (I had placed penguin in the coffin with Harry but Amelia didn't know this - she has just assumed that penguin went with daddy).  On her birthday we released some balloons for daddy with some of her friends, again she was excited that daddy would catch all the balloons. Wish my thought patterns worked like a 3 year old.

It saddeneds me to hear of new people diagnosised with BT and I am finding it hard at the moment to read the continuing journeys so many of you are still on.  Unfortunately my time on this incredibly long train journey has come to an end, I wish it wasn't as I would still have Harry with me. 

Everyone here has been fantastic in providing me support, although I wasn't around much on the site in the last 6 months.  You, or should that be we, are all amazing people on here and big thanks.

(((((((hugs))))))))))) to you all.  Got to go before I cry again

Love to you all xxxxxxxx

Oh Nicky, I'm so so sad for you and little Amelia - I'm crying with you just now no doubt.  You really are such a brave lady.  The obituary was funny and lovely - something to keep and treasure.  I am still finding it unbelievable that Harry is no longer here, but a shining star ... Harry is up there shining away and you're certainly a shining star down here.  I understand you need to get off our train - but we are always here for you, I'm sure you know that - but keep in touch by FB (they haven't changed that recently!!) - and hopefully we'll meet up again soon - take care my friend xxx 

Hi All Not certain if this will work. I hate change, ironic when you think about all the changes that have happened over the last 14 months when I entered the B T World.

Anyway have missed you all. Lots has happened since the site was 'off air'. Pete had his operation on Wednesday 16th. The second debaulk was successful but at the moment Pete is still in hospital & he has severe weakness in his left arm & left leg. Also eyesight not good but am hoping that these things are only temporary due to swelling in the brain following operation. He's very grumpy with me at the moment, hates hospital food & hates even more the fact that he is dependent on others to help him. They may transfer him soon to another hospital for his rehabilitation. I'll keep you posted IF I can negotiate this new site. It will be a small miracle if I finally manage to work out how to get this post on!!!!!!!!

Glad the train has found it's regular passengers & welcome to new travellers too although I realise most of you have been travelling on other trains whilst we have been travelling on ours. Hopefully Martyn will be able to retrieve the original reference to the train so that all becomes clear to those that did not previously use Share to post.

Hope all is as well with you as it can be

Love Suexx    

Cor Blimey it worked !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I only wish that the other miracle that I pray for would work too.

Nicky,

I am sorry I didn't get to meet you or Harry earlier and am so sorry for your and & Amelia's loss.  I am not a particularly religious person and the following quote comes from one of my favourite films (Cool Runnings).

Peace be the journey.

I worked as a pre-school assistant until my surgery and treatment and one reason for wanting to get back is the beautiful outlook on life that kids have, I wanted to be inspired by them again.

Take care and I wish you the strength to get through the hard times until you reach a place where memories of Harry make you smile instead of cry.

Nicky, what an amazing obituary. You don't need me to say that your seat is permanently reserved for you. xx

Sue, I was thinking about you when this site was down last week so long. I'm still looking for one thing that is better about it. Any nominations gratefully received. I'm sorry to sound such a moaner - I know Mac will have done it with the best of intentions but I think people in situations like ours need a working stable system not our choice of smiley yellow faces. OK OK moan over.

I hope things go better soon. I think I said before, our ns told us it often takes longer to recover after a second operation. So glad you have found us. Take care of yourself too. The time after an operation is so tiring also for those of us looking after our loved ones.

Love,

CHxx

Good morning to all,

Hi Nicky,

About 10pm last night I sneaked out into the garden to have a crafty coffee, Doreen can't have one after about 4pm due to you know what!  It was a cloudy sky, but one very bright star was shining through and practically lit up our garden, it was transfixing.

After a short time it disappeared and the darkness returned. It was as though it had dropped by to say hello.

You know what I think?

Love and very best wishes to you and AmeliaXXXX  mustn't forget Milly, wuff wuff.

Martyn XXXX