We Talk Brain Tumours

Thanks Janique and Debs

It's nice to know that people are out there rooting for you. It can be such a lonely business all of this caring malarky. Even when I'm surrounded by well meaning friends and family I can feel so alone at times. This situation is not one for sharing and I strongly believe that, unless you are going through it yourself, people can't really understand.

Fortunately, the news is now a little better. The PCT have agreed to increase the carer visits to four a day. The extra one, to get him ready for bed, will really help. I have asked them to move his morning one to 6.30 a.m. instead of 9.30 a.m. as it's a long time for him to hang on to go the loo in the morning. Fingers crossed that will happen too. They have also agreed to arrange a night sitter on Tuesdays and Fridays so that I will at least get two nights of continuous sleep. I burst into tears when the lady from the PCT told me. You'd think I'd just won the lottery the way I blubbed. I felt like I'd won the lottery if I'm honest. Apparently the hospital were not impressed with him last night as he spent much of the night screaming for me. I'd like to think it was because he was missing me but it's more likely he wanted me to hand him his iPhone! 

The Clinical Nurse Specialist has referred him to the Countess Mountbatten hospice in Southampton which I initially thought was too far away but now realise it's the only one covering an enormous area and is actually the closest available! Shame on us as a society. How can this be????? But I had a long chat with the doctor there and they now understand Tony's condition and she gave me some advice on how to tweak his medication to make life a little easier. I also had a call from the Palliative Care Nurse, Lynda, who was soooo lovely and she is going to arrange for emotional support for Tony so that he has somebody he can offload all of his frustrations too. I am convinced this will calm him down.

So things are starting to improve and today was a massive step forward. We surprised him by putting some tropical fish in his new aquarium and we lit the fire for him as he always likes a roaring fire so he would come home to some nice things. He is currently working his way through a box of Roses and is calm and content. Long may it last. 

Love to everyone.

Pam

x

Debbie the wedding photo was beautiful, I am so glad it went well and they managed to raise funds for BT

Pam - so glad you are getting some support now and you also have contact details if you need more - I would have loved to have a full nights sleep, even now I rarely manage it.

Those going for scans soon - my thoughts are with you - its the worst feeling ever..

For me Christmas was different but still good, unfortunately my dad continued to deteriorate and died last night - 5 months after Paul's funeral.  His funeral will take place next week - 10 years to the date since my mum died.  Its quite weird the way things happen

Love to all

Jxx

J

I am so sorry to hear about your Dad. What a year you've had. You poor poor thing.

I am sending my love and big hugs to you. I hope you have plenty of support to see you through the next few weeks/months.

Pam

xxx

Dear Jxx

sincere condolences for your fathers passing last night, what a terrible year for your and your family.

No words can express the sorrow at this time.

Deepest sympathy

love from jmd xxxx

Well, it's 6.30 a.m. 

I've just been downstairs to help him to the toilet and make him an sandwich and, in return, he has thrown his extremely full drinking cup at me which has hit me square in the mouth. So now I have a lovely big fat lip. Well at least it will match the puffy eyes. All I need now is a broken nose and the look is complete.

So much for big steps forwards and improvements in his mood.

What a hell on earth this disease really creates.

Pam

x

Morning Pam

I know that already that it won't be a good morning for you..... so sorry that Tony's illness is making him so difficult for you, i can imagine how it hurts you..... this disease is a $%@&*+^

I wish is was there so i could give you a hug and make you a cup of tea as i can't  please accept a cyber one

keep strong you are doing a wonderful job

love

Pam

x

Good morning all.

Yesterday went exceptionally well. The coffin was an oval basket type with lid and one beautiful arrangement almost filling the basket surface containing birds of paradise and other flowers which I don't know the names of! We had decided to make our own ways to the crematorium and meet Doreen there. When I turned into the Ollerton Road from Newark, who should be in front us, but Doreen in the hearse, that was eerie! I quickly overtook and fortunately arrived before her. I did tell the funeral director that he was travelling too fast for Doreen as she suffered from car sickness if riding in the back! We went into the beautiful Chapel to Abide With Me. The service etc was excellently delivered. It was a very rainy and cloudy day, but just before the committal the sun came out for just a few seconds and shone through the window and illuminated the basket. I could hear the gasps from the others. I know it was purely accidental, but wonderful anyway. We remained seated while 3 Little Birds played and glad we did, as I think if we'd have left to it, that might have been a little more upsetting. We had many donations to the MacMillan Nurses. I'm sure that Doreen would have approved of the way the day went. Both daughters and I would like to thank you all for the wonderful support you have given us over the years. I will try and use my experience to help others on this thread. I think I may need a few days or so to adjust to to the new situation, but I promise you all that I will try and do my bit on here.

I haven't read back today, hope there is no bad news regarding other travellers? Lots of love and the very best wishes to you all my friends. Martyn XXXX

Joanna,

So sorry to hear the sad news about your dad. May he rest in peace and may the new year bring you some peace and happiness.

Love and thoughts with you and yours.

Ange xx

Hi Martyn.. I was hoping to make the service but was down south. so sorry But I did say a prayer for you all and will continue to do so..   The next few days and weeks will seem like a big blur so be kind to yourself..

Lots of love and keep in touch Jenny ( girl from essex living in Yorkshire )

xx

Martyn, I am glad Doreen had a fitting send off, she was a remarkable woman and you were just as remarkable in your love, care & dedication to her these past years.  Be gentle on yourself and I for one will feel safer when you are back driving the train xx

Joanne, I am so sorry for loss, peace be the journey to your father.

Jenny, just waving hi as a girl born in London but brought up and living in Essex!

To all my fellow passengers, I wish you well as we head into the unknown of 2012.

Love & Strength to all who want or need it xxx