We Talk Brain Tumours

Dear Pam

My thoughts are very much with you and your family at this time.

Much Love

Respect

xx

Dear Pam,

I am so sorry to see that your soulmate Tony has passed.  Your story was inspirational, you showed so much courage.  May your lovely Tony rest in perfect peace, free of any pain and suffering and eternally in your heart.

Thinking of you and your family

Nic xx

Pam, I am so sorry to hear the news about Tony and my heart goes out to you and your family.

I have followed your story over the last few months and you are one of the most inspirational women I have ever come across.

Take care lovely lady xxxxxx

Sarah xxxx

Hi All

Feeling very reflective this evening.

I was trawling back through the posts to see if I could find the one where Anne gave dates for her Yorkshire Hike. Totally frustrated,  because it would have taken me hours (MacMillan...this new format is a nightmare)....I gave up and I clicked on the very first ones. There you were Debs-  Sept 20 2009 and dear Martyn too.  I found my first despairing post exactly a year ago this weekend and the reply from Joanna. Thank you dear friend.

I truly do not know how I would have coped without  this forum throughout the past year and I know that a lot of  people,still read, even though they may not post.

I received my first letter from the Hospice today offering me counselling ( maybe 7 months is when they think you need it most?) but I have always felt better offloading on here with friends who know exactly how it is.

Its a sad time for many out there tonight...but I hope it  helps to know you are not alone.

 

Love to all

Cathi xx

Funny you should say that, Cat.  This afternoon, I did much the same thing and found myself hunting back for November last year and the days running up to Ali's passing.  It brought back a lot of memories (and so much love from your wonderful people), and a fair bit of man weepage.

I also share your thankfulness that WTBT exists, I would be utterly lost without everyone here to share my highs and lows.

Not feeling alone is the single reason for my sanity and well-being.

So that's due to you, Cathi.  And Debs, Joanna, Naomi, Martyn, Beedarsh, Pam, and so many more who's names I struggle to remember (I'm a mere man after all).

Love to everyone and hoping for a peaceful weekend.

Cathi,

Here are the details for the walk, it's on March 17th

http://uk.virginmoneygiving.com/team/PeaksWalkForDan

Dear Pam You don't know me but I have been following your journey with your beloved Tony and wanted to say I am so sorry. My OH doesn't have a brain tumour, he has leukaemia but I have followed you, Tony and your family all along the way. You have been truly inspirational . Huge hugs to you and your family. Take care. Heather

Pam - so very sorry to hear the news of Tony's passing earlier today.  The way you have cared and fought for Tony every step of the way has been truly inspirational to us all.  He was a very lucky man to have such a wonderful dedicated, devoted wife and family.  So pleased you were with him at the end, holding his hand.  This now is my only wish (and of course for a peaceful and dignified end when he time comes).

Now's the time to look after you, be kind to yourself.

With much love and hugs xxxxxxxxxxxxxx

Dear Pam,

 

Wanted to let you know that you and your family are in my thoughts,

 

Love

Julie   xxxxx

HI Everyone

Thank you so so much for all of your lovely thoughts and good wishes. It made a very sad day so much more easy to bare.

It was such a strange day, almost surreal.  Not because of what we did, although that was strange enough, but because we were doing it in a world in which Tony no longer existed, not physically anyway. It's not something that I thought about constantly, just every now and again it would hit me. Tony's job would take him away from us so much but we always knew he was somewhere and now he is nowhere. Sitting here typing this now it still feels strange. I suppose it will become less strange over time, all part of the grieving process.

The worst part was telling his poor elderly parents. Of course, seeing me on the doorstep at such an early hour they guessed straight away. They are so old and fragile now and looked like two little birds caught in the headlights of a truck as they opened their front door in their pyjamas. Bless them. But they stayed strong. I then drove to tell his brother (we all live five mins from each other). They all decided to come to the house and sit with him for a little while until the undertaker came. So we actually had a lovely hour, sitting with him on his bed in the lounge drinking tea (not him obviously!) and telling stories. Even in this sad moment, we managed a little laugh to think of things he's done or said. We all kissed his head and I sat holding his hand. His Mum said some lovely words. How truly awful for them, to lose a son. 

The undertaker asked us to leave him and his colleague with Tony whilst they transferred him to their van and we all stood in the kitchen and watched the undertaker's van take our Tony away. We had a gin and tonic in his honour and raised a glass to him as he left the house for the last time. Not sure whose bright idea it was to have a gin and tonic at 10.30 in the morning but it gave me a headache that stayed with me all day!

We have a little annex flat in the garden and Charlie decided to disappear there with his girlfriend for much of the day and sleep. Fay and I pootled really. We both had our laptops out and would read messages to each other that people had sent via email and Facebook. This gave us both such a lot of pleasure and comfort. I stripped his bed and we took all of his bedding and bits and bobs (bedpans, urine bottles, catheter equipment, etc) to the dump and all of his remaining medicine to the pharmacy. I called to arrange for the bed and hoist to be taken. They can't take it for five days! So we must sit and look at his hospital bed, the place that he passed away, for five whole days. How awful is that?

Of course the day was mainly taken up with talking to people, his friends and work colleagues, family and my friends who all wanted to know that me and the kids were OK. People are so very kind and I hadn't realised just how loved he was by so many. I spoke briefly to the undertaker about the funeral plans and now that he has passed we can start openly discussing arrangements without fear of feeling inappropriately early. 

On an emotional level it was a very strange day. I reverted to my usual coping strategy of being little Miss Organised and started sorting out the practicalities. Every now and then it would hit me like a train and I would bury my head in something nearby and have ten minutes of crying, then almost instantly bounce back and continue with what I was doing as if nothing had happened - almost like a spoilt child throwing a tantrum stopping the moment they get the chocolate! The change was instant. It was very much the same for Fay too. If a stranger had observed us through the window for a while he would surely conclude that he was watching a house full of schizophrenics. Crying, laughing, hysterical, calm, rushing around, lounging around - a day of contrasts indeed. Charlie didn't leave his room much at all but his girlfriend would pop out every now and then to tell us he was OK. Bless her.

But many were right. None of us could eat. We ordered a pizza take away and I forced myself to nibble on a piece of it but it came straight back up. I have a constant headache and suspect it is mainly due to hunger but the site of food is just too much. I am going to try one of Tony's fortifying drinks today if I still can't eat. Obviously, I can't sleep either. 

So I now face my second day without him. I made him promise me that he would come back and live with me in spirit. He's promised to haunt me until I am ready to join him 'up there'. He wasn't one of those people, generous of spirit, who wanted me to move on and marry someone else - he didn't like the idea at all so I've told him he has to make his presence felt if I'm going to stay faithful. Yesterday morning the GP arrived to verify the death and his driver drove straight through our front wall. Later in the day I had a hairdryer accident and a bottle of hairspray exploded in my bedroom and melted a big fat hole in the carpet. Then out of the blue, not two hours later the builder called to ask how things were going. He said he wasn't sure why, we just popped into his head and he thought he'd call to see how Tony was and whether we needed him for anything. Really? Most people come back as a butterfly, a shooting star or a rainbow. Tony comes back as a building project manager! Well, at least in death he is doing what he wanted which seems to be exactly the same as he did in life. He did always love his job though.

Well, I'm going to try to get a few more hours of sleep and get some strength to face the day ahead.

With much love to everyone here. I hope you are all having a good day today. I suspect mine are only going to get worse, for a while at least.

Thanks again everyone for your wonderful support. I really would be in an asylum by now without you guys. 

Pam

x