We Talk Brain Tumours

sending love and hugs to all and especially to friends who are losing their loved ones xxxxxxxxxxxxxxxxx

hugs to you all.

 my hubby diagnosed this april siezures - brain tumour was due op on 8 th may but postponed as now found nodules on both lungs. Had pet scan urgent last monday no results as consultant on holiday! have bio op if they have itu bed 8 June for lungs.

i feel so angry and lost in the system.  dwp are not sure if we qualify for disability help - hubby was self employed until seizures so no money coming in. we are falling through loop as he is 65 and qualified for pension last september

we have been told that he need supervison at all times because of seizures - they happen at night in his sleep.

just would like a diagnosis so we can be posotive with his condition.

sorry to ramble but love to all your family

Andrea

Dear Andrea

I am sorry you are joining us.  We will provide as much support as we can.

Naomi - when you say GP has ruled out DVT - has a doppler scan been performed?  If not please ask for one.  Lymphoedema is unlikely in people with BT as lymph glands are not involved however, you could ask to see the lymphoedema nurse (you could ask to be referrred anyway they may offer some help)who may offer some advice.  Often the swelling in the poor side is due to poor circulation and the reduced movement so elevating the limb when sat down or in bed will help.

Paul is still in the hospice, managed to burn his arm on Saturday when he spilt his soup and it pooled under his arm, also feeling tired and generally unwell due to the Chemo.  We are counting down the days now - plan is to have him home on Thursday.

Love to all

jms xxx

Hi Andrea...sorry as always when someone has to join us...but welcome.

I am sure you will qualify for DWP...dont think it matters if you are self employed. I remember at diagnosis of feeling frightened and out on a limb and nothing was happening fast enough. Speak to everyone you are in contact with -GP, Occ Theraphist / MacMillan Nurse/Social Work and shout that you need help. Every area has a different name for the people who can help you.... it is possible that they too are waiting for clear diagnosis. 

Keep posting....there are lots of people on here who will have helpful advice for you.

Cathi x

That's our experience as well.  Until a full diagnosis is made, we felt that we didn't have much in the way of emotional or practical support from the medical services.

But since then, everything has happened smoothly and we've had a lot of support.

Jane passed away this morning at 7am. She started the process at 9 yesterday morning. Her spirit left around 10 last night and her body finally followed this morning. I was awake with her until 3am, woke up from the silence and was just in time to hear her last heartbeat with my head on her chest.

Feeling numb so I am now watching Juno with my friends who have been with me since last night.

So sorry to hear Jane has passed.  I lost my husband Friday morning and know that feeling of numbness.  Love to you xxx

Oh Dutch.  So sorry to hear that Jane is no longer with us.  She couldn't possbily have anyone better to care for her in her time of need.

Your story continues to be a source of inspiration to us all.

Peace be with you.

So sorry to hear that Jane has left us. You have been a wonderful loving partner to her, and as Pete said..an inspiration, to those of us still on this lonely train.

May both Jane and you now find peace.

cathi x

Dear Tiggywinkle, i am so sorry you have lost your dear husband. I lost my husband to the same terrible disease on Friday, January 7 this year and I know just how hard and painful it is for you and what you are going through. I hope you have friends and family who will be with you to help as you are going to need people to see you through this terrible time and beyond.

Although I am down the road a bit further the events of that day are so vivid in my mind and I'm so sorry that you are now having to go through this terrible heartbreaking, and painful time that has taken your loved one from you.

Please be sure that  if you feel like pouring our your feelings on this site - and I've found that when there was no one around to listen to me or hold my hand getting my feelings down in writing did help.

There will always be lots of other folk who are travelling on the same journey albeit at different stages who know only too well the pain you are feeingsyl..

I'm sending yuou a huge hug,

Love Mags