Hi everyone
I am just trying to navigate myself around the site. Still struggling, but thought I would try and make a temporary place for the WTBT folk as we are all wandering round like lost souls at the moment- don't know if this will work- but worth a shot while Mac try and resurrect the old thread
Love Ali xxx
People ask if I ever down or dark thoughts, well today when I read all the posts about friends visiting or not, I just cried. Sometimes it hits me that all that I am reading now.........I too will go through and as will my family and it breaks my heart for them more than me.
So no wise words other than as I am now, I wouldn't want my friends to see me at the end, all bloated from steroids amongst other things. But that is because I am vain and I know Tony wouldn't worry about putting my makeup on or straightening my hair (unless I give strict instructions to my daughter to do that in case of emergency!). Sounds silly that I would be vain, but .....I am brave enough to admit it.
I think perhaps I let go and cried today because of the impending MRI, the fact I am fast approaching the 3rd anniversary of my surgery and that my oncologist gave me 'statistically speaking 2.5 to 3 years'.
Anyway, no time for the doldrums, I have lemon & herb chicken to prepare for dinner and I seem to have broken my dyson. The brushes won't turn at the front (yes I have declogged my daughter & my own long hair from it lol). Oh well another job for Tony to do when he gets home, at least I have a good excuse for no vacuuming being done, always a silver lining if you look for it :)
Love & strength to all who want or need it xxx
I'm right with you on this one Debs, I too have been moved to tears.
Having decided to take a break from printing my son's wedding invitations ( they have decided to get married in April) I've read the last few pages. It suddenly dawned on me that Dan's wedding day could be the last time some of the extended family, his old school friends etc might see him looking relatively well. Or even (as I'm learning how quickly this disease can progress) for the last time
.Back to the invites I go with a gusto of enthuiasm that they must have the most brilliant day but also a very heavy heart.
Anne x
Oh Debs/Anne
What a thickhead I am. If I had thought for a single moment that this subject was going to prompt such a reaction I would never have put it on here. Perhaps this is what the Carers Only thread is for. I should have thought it through more thoroughly and left it on there instead.
Anything I say now to attempt to reassure you is absolutely pointless. I am not in your situation and am totally unqualified so anything I say in an attempt to recover the situation would potentially come across as ignorant and just add salt to the wound.
My immense apologies for doing this to you.
I'm now off to slam my head in a door!
Much love to you both.
Pam
x
Pam,
Don't you dare beat yourself up about this. We all know that we're all in different stages of our journey, with some running faster than others. Debs has been all of our fairy godmother for longer than I can remember, and she has a long way to go as well.
We all have ups and downs and there's times when someone's circumstances causes us an emotional response. This is all part of sharing our stories and experiences with one another.
Our golden mantra is "no holding back, everything is appropriate". I'm sure that Debs would not want anyone to hold back on expressing their hopes and fears just on her account (and neither would I).
Debs, we are all thinking of you and care deeply for you.
We love you, always keep that in your heart.
Hi Everyone
Can't sleep! Grrrrrr!
Pete - thanks for that. You're right of course. But it isn't nice to think that you've said something that has had a negative effect, however unintentional. And Deb is a fairy godmother of legendary proportions!
Thank you so much for sharing your stories with me. It is so interesting and reassuring to see how other people have managed the end of life stage and although there are many different stories, it has made me realise that I need to start thinking about how we would like the end to be. And that it is completely within my control.
I stayed with Tony at the hospice until quite late last night and, for a little while I thought he had come back to me. We'd had a few little chats about some practical things, e.g. bank accounts, builders, curtains, etc. - the usual stuff so I thought I'd broach the subject of who he would now like to visit him and what his view on visitors was. Unfortunately I got nowhere.
I decided the best way to approach it was to list out some of the very close friends that I thought he would definitely like to have as visitors. Unfortunately, the first on my list, his friendship with his old schoolfriend Jon, is complicated by the fact that said friend's wife took offence at something minor that was said over 20 years ago (I asked her what part of Australia she came from - she was from New Zealand!) and has since refused to spend any time with us. So Tony just said he was going to refuse to see his friend anymore because of wifey. And started to get really agitated about the whole subject (it would seem that this aspect of his behaviour is still skulking around in the shadows). Not really the response I wanted. I did get myself tangled up in a little debate with him about it until I realised that the whole conversation was pointless and I changed the subject.
Thankfully, I don't really feel that anyone is coming with the 'circus attraction' approach which was a concern. Tony has many friendships that he dips in and out of once a year, sometimes less. Circumstance generally dictates the frequency with which he sees his friends but I know that they are there with genuine feelings of concern nonetheless. He has friends that only appear during the football season who are then replaced during the summer when the cricket season starts. He has friends that he only sees when they are passing through from one place to another. Unlike my friendships which are constant and would continue at the same frequency despite circumstances and time, Tony's friendships are structured differently to my own. It certainly works for him. But then I don't think men tend to fret if they haven't heard from their best friend for a while (I phone my best friend every day, more if she hasn't called me back!), his is a much more laid back approach to friendship.
Since he's been ill, there are a lot of people who have stepped up and see him all the time. They weren't the ones that I would have expected but it's lovely that they have. Some I thought would step up and have completely disappeared - they will not be receiving an invitation to visit, although to be honest they haven't asked.
I feel that a lot of them who haven't seen him for a while are coming to say goodbye and I have to allow them that. It seems to be an important part of the process for some. He is very much respected and loved.
There is only two people I feel are coming with the wrong motivations and they are both bible bashing Christians who just love the sound of their own 'Jesus has come into my heart' voices. Sometimes I suspect they are using christianity as an excuse to talk about themselves for painfully long periods of time. There's an awful lot of "I believe" "I think". "I would like" "My relationship with Jesus" to their conversations. It's a complete yawnfest.
I have decided to continue to let people come and, if they go away with anything less of an opinion of Tony because of where he is now then they have to live with that. I don't think that will happen though. However, I'm prepared to take the risk.
If I'm honest, his condition is changing so quickly now though that I will review the decision regularly but, for now, they can come. Despite his confusion there is still so much laughter when his friends are there and I think the children are right to want that to continue. Let's keep the laughter going for as long as possible. That's always been his philosophy and who am I to tell him it should be any different now?
Thanks again for your posts. They've helped me such a lot. Not in the way that I had anticipated, so much more than that.
Now going to see if I can get back to sleep. :o)
Pam
x
Pam, you are only a thickhead if you think you needed to apologise, consider yourself slapped upside the noggin for any such notion. We can all write about our hopes, fears, worst nightmares, good times, bad times and the much needed rants.
Sorry it took so long for a reply, have had my head stuck in html code changing the image viewer on the clubs website to a lightbox.......took me ages as I don't concentrate too well for extended periods of time.
Please don't think you need to censor what you write on here for fear of upsetting the actual "headcase" amongst us, there maybe times when I am quiet for a bit or don't join in, after all I have no idea what it's like to be a carer, as you guys probably don't understand what its like to be the patient. That's just the way it is, we balance the thread out, both sides of the coin.
I like the fairy godmother image, alas I am more like a fairy elephant, a bit overweight and not exactly elegant LOL
Please please all take note of this, I do NOT offend easily and I can see that things are VERY different for carers. Keep doing what you are all doing, you amaze me.....oh and keep sharing!
Much love & strength to those who want or need it xxx
Ditto,
I use ths site because I want, no NEED to know the facts. Warts and all and God knows this is one ugly disease. If I was distressed or offended I wouldn't read the posts.
I'm sick and tired of people telling me that my boy is "strong and a fighter, he'll beat this. You'll see". It's as though they're all living in some bloody romantic film where Elizabeth Taylor comes riding in on a horse with a cure. Voila, Dan doesn't die and we all live happily ever after.
Please continue to tell it as it is, As upsetting as it may be to read, there is comfort in knowing we are not alone.
Wishing everyone a peaceful and relaxing weekend.
Anne
Hi all
Like you Anne I also need to know whats ahead. I was terrified when I first started reading the posts about 10 mths ago. But have found so much information, compassion, love, laughter and tears, I wouldn't have it any other way. I love everyones honesty....
Hope this makes some off you smile, Chris has recovered very well after his seizures on Christmas eve, so we decided to try our regular walk this morning with one of our best friends. Fab forecast so decided to have a picnic. I made some chicken tikka for sandwiches last night so as I took the children to school this morning I asked Chris to slice the chicken. I also got some smoked salmon pate out and put some baguettes in the oven.
Came back and the chicken was beautifully sliced on the bread and the baguettes were out of the oven. Chris went to the village shop whilst i put everything in the picnic basket. Couldn't find the pate anywhere so assumed Chris had put it in some obscure place and it would turn up eventually.. We set off in the car and I asked Chris if he'd seen the pate. No he hadn't seen it
About 10 mins later he asked was it in a round tub? Yes it was have you moved it? well......
Yes you've guessed it he had put it on the bread instead of butter....... and he hates smoked salmon... Not to worry ( maybe he had invented a new sandwich filling.) Well after a fab walk around a beautiful reservoir we sat down for lunch in the beautiful sunshine. God the taste was disgusting....... We tried to eat it but ended up just bursting out laughing. just the tonic we needed. our dog was over the moon though. Thank goodness for soup and cake
Love and peace to all
Denise
Oh Den and I know we are not supposed to laugh at others misfortunes but gawd I nearly woke my kids up laughing at that. My first smile of the day, thank you. I am truly weird as I will eat smoked salmon, but hate cooked fish (other than seafood/scampi) and I truly detest pate of any description. Perhaps Chris was in the Heston B's school of sandwich making with his very experimental (or just mental) combination.
The picnic and walk sounded wonderful, my friend took me to Canterbury on Wednesday.....wish I had taken my 'proper' camera and not our pocket one, but she told me I couldn't embarrass her like a tourist! Our dogs usually get some leftovers too, I know we shouldn't) but they are only dried food and a little treat every now and again is good for the soul, even for dogs I am sure :)
My middle child was the only one home last night, he came downstairs around 9pm looking awful, felt warm on his mood (his childhood name for his forehead that I still use to tease him now he's almost 16) sore throat, headache......great! Managed to get him to take some paracetamol and he curled up on the sofa with his Mum. Was quite nice actually laying there watching some terrible film on Syfy lol
Off to the town later with the husband when he gets home from his early karate training (they leave at 5.30am!) and I've just seen the wicked frost we've had last night, very pretty in the garden and a good opportunity to nip out and clear a few dog waste parcels I didn't do yesterday while they are easy to remove ;)
Hope everyone has the best weekend they can, considering the circumstances we find ourselves in. Love & Strength to all who want or need it xxx
Good morning my friends.
Just a very short note to apologise for not contributing to the thread recently, but I have gone from calm to a very bad place! It seemed to start last week when I was informing institutions to erase Doreen even further from my life, bank accounts etc! Then this damn 'Man Flu' which of course is far more serious that anything the female gender contract!! I am trying to distinguish between lonely and alone? I don't need people around me, but I feel so alone. The girls are coming down today and how I am so looking forward to it. It was the visit to the solicitors yesterday! Many of you will have been in the same place I'm sure and will have now emerged. I will shortly I know. I haven't had the courage to read back, but do hope there hasn't been more bad news?
Thank you for being here and I wish you all lots of love and good wishes. Martyn XXXX
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