We Talk Brain Tumours

I don't know whether anyone else has had this happen, but I keep finding envelopes with cards just appear on my doorstep from neighbours and people who live close by.  Why they think they can't ring the bell and have a bit of a chat (or even a cuppa) I don't know.

I am sorry, Pete, that I am having to make this post by replying one of yours but it is a while since I came to the site and there seem to have been a lot of changes so I can't work out how to make a new post.

I just wanted to let the WTBT people know that my beloved husband Paul died peacefully at home on Thursday night, 17th November after battling GBM with typical courage for more than three and a half years. He had been deteriorating gradually for the last few months but there was a sudden, shocking worsening of his condtion during the last 5 days. On the previous Sunday he was still sitting in his chair and enjoying the Grand Prix but  by Tuesday morning, he was bed bound and obviously very poorly.  He did become very agitated during the last couple of days but once the syringe driver was started and the right levels of Midazalam and Morphine given, he was calm. I still thought there would be a few more days before the end but on Thursday night at 10.25 pm he passed away quietly just a couple of hours after my sister and brother in law and my daughter arrived. We, and Paul's much loved little Jack Russell were all with him when he died.

I had wonderful care and support from our GP, Community Nurses, Palliative Care Support Team and the staff of St Giles Hospice. Today I have made the arrangements for the funeral which will be next Monday morning.

Although I haven't visited WTBT in recent months and I am probably not known to many of you now, I wanted to place on record my appreciation of the group. In the early months after Paul's diagnosis in April 2008, I made some wonderful friends and received so much help, support and advice.

Kind regards to all.

Sue

Ah, Sue.

So sorry to hear of Paul's passing, but comforted that he passed peacefully and with his family around him.  You both had a good fight and managed to keep dignity until close to the end.

We too have a huge thanks to be made to the local care team who helped us so much.  Care like this is worth everything.

We also had the family dog here as well, who oddly got very happy and waggy.  I like to think that some of Ali made it into her, so I give her special greetings whenever I see her now.

The paramedics in summary said in their documentation that Ali lived at home with husband and dog.

The dog is my in-laws dog, so we all got a good laugh out of that.

Strength and peace for the coming days.  Both for you, and for all.

Sue, I am so sorry to read of Paul's passing. My thoughts are with you and your family.

Pete - my neighbours scuttled in doors when they saw me in the early days (or found something very interesting to do in the car until I'd gone in). It has taught me that it is better to say "I don't know what to say" than to say nothing at all.

SWorthey - gosh, you're amazing to do all of that while caring for your dad. Well done you.

Briarwood - what a lovely tale about the rose bush! It really made me smile so thank you for taking the time to write it.

JMS - someone told me at some point during this journey that the grieving and the sadness never really alleviates, you just find ways of coping with it. Once it has been a year since dad left, I will stop thinking "This time last year" which I hope will be easier.

Thank you to all who commented on my post last night, wishing me well. Today has been a better day. I'm worried about my mum - she is so tired and feels very angry at dad. I understand why - after all, she has been robbed of at least 20 years' good retirement with him - but I miss him so much and haven't felt angry once that I am struggling to support her with her grief, which I realise is so much greater than mine. She will start going to a bereavement support group at the Hospice next month, I hope it encourages her to talk about her feelings.

Love to all.

Naomi.xx

Sue,

Sincere condolences, love & strength to you.  Peace be the journey Paul.  I have no experience of this other than reading everyone else's journey here, but it seems Paul was spared the long drawn out end that some have endured, perhaps it is kinder but what do I know!

I am glad that everyone seems to have gotten good support from their local health network.  As for the people who shy away, you are right, when my husbands close work colleague lost his partner of many years at only 39 years old from a brain  embolism, I had no idea what to say to him.  I just knew it didn't matter what I did say, it wouldn't stop his pain or hurt.  Having to make the decision to switch off life support must be one of the worst decisions you'll ever have to make!  We had gone out with them for drinks and meals and I used to travel on the train with Denise to work for a few years before we moved. But you are all right, it's better to just say "I am sorry, I really don't know what to say to you right now" at least you are making contact because just ignoring people is more hurtful.  

I never realised how awful colds could be, this is my first proper cold since I was diagnosed - so I've done well to dodge one for almost three years but boy has this floored me.  Headache, no sense of smell or taste, coughing, sneezing, diarrhea................oh its had the lot!  I have my middle child off school with it, he slept in till midday yesterday and is still asleep now at almost 10am.  I am going to curl up on the sofa with a lemsip and a throw and put the tv on for some background noise.  Even my dogs are both curled up asleep!

Love & strength to all who want or need it (germ-free of course)

Ah Debs.

Probably a tiny bit too much information there, but I really hope that you feel better soon.

I'm trying to sort out a little paperwork each day (I can't really face doing it all at once).

I'm absolutely gobsmacked that the DLVA just want me to return Ali's driving license with nothing but a covering letter before they'll cancel it, they don't even need a death certificate reference number!!  I mean, how tempting would it be for someone to get the hump with someone and send their driving license away and how much trouble could that cause for driving, car insurance, not being able to get an MOT, etc.

Pete, be grateful I only shared information and not germs ;)  I agree, that's a little worrying about the DVLA.......open to all sorts of abuse!  Perhaps most people don't know that though thankfully!

Good luck with your paperwork.

Love & Strength to all who want or need it xxx

Debs..hope you feel better soon and thanks for reminder about SD Christmas cards.

Just had a magazine delivered from International Brain Tumour Alliance(www.theibta.org). Must have clicked on something when I was trawling the web in desperation months ago. I so wish I had had it then..lots of articles from Patients, Carers, Researchers, Surgeons etc. Their mantra is " Greater knowledge, Greater Collaboration, Greater hope"  ...and so say all of us.

Love to everyone, especially the new passengers. We are all here for you. You are not alone.

Thinking of you on Friday, Pete.

Cathi x

Debs - take care of yourself.  Was it the cold that was making you dizzy last week? 

When i contacted the DVLA via phone they were so empathetic, Paul had surrendered his licence when he was first diagnosed, we were informed he had to do so.  Maybe because they are a government department they have access to public information and death notification is a public record so can be accessed by anyone.  i don't know but wouldn't like to think anyone could just phone up and cancel your licence. 

Love to everyone - hate this new way of not being able to go back and see everyone messages as i type joanna x