All I can say is that I'm thinking of you, wishing you well and sending more positive energy in your direction.

Sending love and healing…[Read more]

We had John home for a few hours today, I think he was pleased to be home although he didn't say those words (if that makes sense). He was so completely knackered from the 15 minute journey from the hospice to our house he seemed too tired to express excitement that we'd all so…[Read more]

Thanks for asking after John … he's still in the hospice, ups and downs to be honest. The toxicity has long gone so he's not shouting out, jerking, completely confused any longer. He took some seizures however which resulted in him being transferred to the hospital although…[Read more]

Just a wee thought, suggestion perhaps …. when I worked in the funeral directors we had a family place an order for a bird bath for the garden – it was special in that their loved ones remains could be housed in tubing inside the body of the birdbath (hope that makes sense). This way it…[Read more]

Its the old catch 22 when our loved ones become ill – ill at home means lots of hands-on support to the point of exhaustion though we never complain; ill in hospital means lots of running in and out…[Read more]

My SIL is childless, she doesn't really understand how terribly important it is to involve children in every step of life. She fears sharing feelings and voicing her vulnerability so she'd rather not think…[Read more]

I found a lovely book on Amazon – "Dear Dad, from you to me" by Neil Coxon – bought one for each of the girls. Sounds the very same as what you've been given by your children too – the pages have prompts and particular questions to ponder over then write your answer. I can't wait till it comes, it has been recommended by many buyers…[Read more]

I have sent the cat amongst the pigeons and told Johns family of my intentions – his brothers haven't responded however his sister has already sent a negative text to me about it telling me it is such a bad idea! Grrrr

Anyhow, I spoke to John about it at the hospice today, bearing in mind Gill and Stephens conversation above…[Read more]

Wonderful, fantastic, super-dee-duper …. thanks so much for sharing, this is such a positive, cheery note and just what the doctor ordered for us all.

Well done to you and many congratulations too 😀

Big squeezy hug to you and Janet, I'm so very…[Read more]

You've given me a wee chuckle too …. reading your message I appear to be compiling a memory book for both John and Steve! 😀 Sorry, I shouldn't poke fun at you, however it has made me have a little laugh today (at your expense though). And poor Steve, bless him.

I do hope you are…[Read more]

I really can't wait to get started now, you have all filled me with inspiration and such great ideas about the memory boxes and memory books. I'll need to have a good think about what I'm going to do and how I'm going to do it so I do it right.

Sending you love and healing thoughts…[Read more]

I'm having a wee chuckle. I have always said that when John does "go away" that he'll be back rattling chains at the bottom of bed – he's just that kind of a character, always practical joking and being silly. He's quite a comedian!! So, haha, you are absolutely right – he will be VERY close…[Read more]

Thank you…[Read more]

I think you are right about starting gathering bits and bobs now rather than waiting till later …. I can't imagine life afterwards yet, but I'm sure it will be a jumble and a guddle and time will likely rumble away before I've had the chance to get some memories together and then I'll think its…[Read more]

I had a look at the website you suggested – Winstons Wish – heavens I was in floods of tears reading through some of it, but what a wonderful, fantastically brilliant site. I can't thank you enough for sharing this information, I'd never have come across it otherwise. I remember…[Read more]

You are right about hanging onto the fact that he didn't sign the "DNR" form – he has told the nursing staff that he wants every treatment possible to keep him here – so that is a HUGE positive, and ofcourse shows he's not quite ready to throw in the towel just yet.

The more I think about the memory box…[Read more]

Your love and devotion to Michael comes through loud and clear, I admire your strength and courage and truly believe he is still with you yet. I don't think you are daft at all for speaking with him every day, I think he'd be quite put out if you pretended he wasn't there! I'm a very spiritual…[Read more]

We're going through the mill just now, John is not doing so well. He's been in the hospital for a couple of weeks, was discharged home much too early then ended up in the local hospice. Last night he was moved to the hospital following seizures at the hospice, he wasn't keen to move but if he stayed at the hospice then he was to…[Read more]

And a belated Happy Birthday to you too:-D Hope you had a fun-filled day.

I'm doing lots of decorating around the house whilst John is away. Lots of deliveries too of disability aids for him – the stairlift should go in next week I believe. Busy busy …. but such fun!!

Sending healing thoughts and love too
Angelina xx

Heavens, what a time we've had here at home. I can't tell you how relieved I was when we got told there was a bed at the hospice for John – isn't that awful being so happy to send him…[Read more]

Well you really do know how to pen a good song don't you?! Lovely lyrics, so emotional with so much feeling too. You've touched a nerve with me tonight.:-/

This puts me in mind of John a couple of weeks back – he'd completely lost his marbles and had flown off to Fairyland without me!…[Read more]

3 years ago we used Age Concern to get John insurance to fly to Florida for 2 weeks holiday. Other companies wanted around £2000 and some wouldn't insure him at all. Age Concern however wanted a fraction of that at around £120 so they'd be worth a shot too.

Good luck, its frustrating but worth shopping around.

Angelina xx

I can't imagine the emptiness your mother-in-law will be feeling after all those years of…[Read more]

I'm sorry about your father-in-law not being able to get home to spend his final days, I agree with you, its maddening that the decision is taken away from him, very sad indeed … this also happened to my father-in-law – we decided that if he couldn't go home…[Read more]

Oh dear, your poor mum must feel really washed out just now, bless her. Her lack of fluids will have likely caused the low blood pressure – my John had terrible diahhorea a few weeks ago so he was also admitted to hospital for IV fluids, he passed out on the ward and thats when they discovered his blood pressure was low just due to…[Read more]

It certainly is a harsh drug Dai, but heavens the results seem to be fantastic if your body can handle it. I do hope you'll soon be feeling like your old (or new) self soon.

You are such an inspiration, always finding the…[Read more]

with love
Angelina xx

Love your songs Dai … I agree with Jo, please do keep them coming … they brighten up what is usually a bit of a dreary day. Bless you, you have quite a talent.

Sending healing thoughts and love
Angelina xx

I've had the doctor out 3 times today for John – he's refusing admittance to hospital, although he is on the waiting list for a bed at the hospice. Wish he would do just a little to help himself a bit – needs to take a page out…[Read more]

Wow, what an adventure. Best pack your winter woolies for Edinburgh, its like autumn up here just now, even for us "chooghters"!

Take care of you and yours and be sure to report back when you're safely home.

Sending healing thoughts and love
Angelina xx

John was in the Navy!

I remember 4 years ago reading on this forum about a gentleman who thought navy related fuels were something to do with his diagnosis of MM … a few others had put in their tuppence-worth and the common thread seemed to…[Read more]

My John has terrible teeth since being diagnosed with MM … actually don't know if its the MM or just his age (I'm saying that with a tentative screwed up face!). His teeth have been crumbling…[Read more]

Jen, you are right about doctors over-prescribing drugs. John goes between…[Read more]

I for one will happily stand in line for my copy, I am very fond of country … went daft a few weeks ago when Gold Radio had a Dolly Parton concert ticket competition…[Read more]

Oh Bridget, some mornings I'm completely exhausted … John on the other hand seems completely unaware that he's been jiggling about. I try to pretend that I'm on a bumpy train or car journey so I don't notice the matress shaking so much and its less of an issue. I also…[Read more]

I held my breath whilst reading your post just now, I can feel how tense you are bless you. This disease has so many twists and turns, its impossible to predict whats coming next.

Firstly I'm really pleased Peters recovery plan is beginning tomorrow, the sooner the treatment starts the sooner you'll have him well again. It does…[Read more]

I've had something on my mind for some time now, so thought now that I'm back into the swing of the discussion board that I'd post something about it. John suffers (or rather I do the suffering!) with vivid dreams and terrible twitches and jerks all through the night.

I'm wondering if anyone else…[Read more]

I'm so sorry to read of your desperation. From reading the others posts it appears there may still be options available to Peter. The saving grace is that he is feeling well at the moment and long may that continue. Don't give up, you've come through too much to throw the towel in now … keep fighting and remain positive.…[Read more]

Hope the publishers don't keep you hanging around too long before they get back to you …. did you put a spell on them?!

Sending lots of positive energy your way and crossing my eyes, fingers, toes and legs for a…[Read more]

Have you just been diagnosed with MM? If so, then you'll have loads of questions flying round your head.

You may have already read through the posts here on the forum, in which case you'll see varying stories both about illness, side effects, treatment and ofcourse we're all in different areas/hospitals too. Its…[Read more]

I love your "spring clean" of friends. Its very true indeed that you find out who your "real" friends are when something bad happens in life. John lost many so-called friends along the way … but its no loss really, they were just "hangers-on" as my mum would say. The friends that have remained faithful…[Read more]

Awe bless you, I'm so sorry you are having such a rubbish time with your "outlaws". Please, please don't apologise for rambling .. good heavens thats what this site is all about, we support each other in whatever way we can … we don't always have the answers but a good set of eyes and ears and a bit of understanding too.

I can…[Read more]

Yeh, the toilet sounds wonderful – I'll never leave the house again!! I can see us all fighting over it already, will need to issue a rota…[Read more]

What a rotten time you've had. I do hope your health continues to improve … sometimes the treatment can be worse than the illness itself.

Reading your story was like reading my Johns story. His kidney function is also poor, his back in a state although his 7 broken bones were cemented through…[Read more]

Hand on heart, well done you!

I also found it quite…[Read more]

I've had John home from hospital for a week now – you could have knocked me down with a feather when he told me he was being discharged!! Only 2 days prior the MacMillan nurse had said the nursing team were very busy with him, he needed a lot of support and so he was a long way from home!?…[Read more]

Wow, you have so many talents. Your lyrics are wonderful, deep and meaningful. The girls and I absolutely love angels, we've got dozens upon dozens of books, ornaments, nik-naks etc, so anything involving angels is a big thumbs up from us.

I love your attitude too, you are a real inspiration, bless you.

Sent with love and…[Read more]

All I can add is that John managed 2 cycles of Velcade before all the problems started. Prior to the diahhorea etc. he was coming home from hospital after his injection thinking it was all a big joke as he had no symptoms whatsoever!!…[Read more]