Bless you Kay, what a time you're having … though I do get a lovely warm glow from you, I feel your wonderfully positive attitude and fighting spirit will see you through this rough patch.
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 thoughts
Angelina xx
Hi Dai and Gill …. Gill, you can uncross those fingers now 😀
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 hoped for. He finally got a ride on the stairlift (which makes a HUGE difference to him). Once upstairs he got into bed and slept like a baby for almost 3 hours before starting his usual diahhorea spree, bless him. He'd had none for 3 days but typically today it was back with vengeance!
I had thought pain would have been an issue, but today I am happy to report this was not a big deal, the diahhorea seemed to take centre stage.
He's now back in the safe haven of the hospice. The nursing staff are very pleased that all went well and they will ofcourse report to the doctor, there were murmurings of perhaps coming home permanently soon – wow, that would be nice for all of us.
Just wanted to report how things went today and to let you know your crossed fingers did the job Gill!! Bless you x
Sending love and healing thoughts to all
Angelina xx
Hi Dai, hope the sun is shining on you and you are keeping well?
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 brain scans showed up clear which was a relief. He was anxious to get back to the hospice so thats where he's stayed since, 4 weeks now.
His blood pressure is extremely low so the doctor is trying to work some magic – the magic being that they've reduced some pain medication and heart medication to try bring the pressure up again, however as you can imagine its had the knock-on-effect of him feeling pain – the old "rock and the hard place" strikes again! The diahhorea (brought about by the Velcade) is still ongoing, this ofcourse drains John of what energy he has and ofcourse doesn't help with his fluid intake so his bloods are off due to his wonky kidneys.
He is quite weak, breathless on doing very little, needs lots of physical support to get around as his legs are like skinny little pins (or wheelchair is best really) ….. and I can tell he's losing confidence in himself and wonders and questions if he'll ever get home or if he's going to die – this isn't like him at all. The doctor has allowed him (all being well) to come home for a couple of hours on Sunday – the girls are already excited about daddy coming back so that will be VERY nice indeed – he'll finally get to try out his stairlift and new toilet – we had lots of work done whilst he's been away in the hope he'll get the chance to use them.
The hospice is just fantastic Dai, I can't praise the staff enough for their patience and support shown to ALL of us – the girls are always made very welcome, they love the play room with huge TV, playstation games, toys etc …. , and with me they are always willing to sit down and discuss anything thats on my mind …. if John had been in hospital he'd have been "thrown out" long before now.
Hopefully Sunday will go without a hitch and he'll be confident and comfortable about leaving the "cocoon" of the safe hospice environment – I'll let you know.
Sending love Dai and healing thoughts too
Angelina xx
Hi Roz, bless you for feeling so lost, I feel for you.
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 allowed the remains to move with the family should they decide to move house in the future. We've also used the "ashes to glass" people who make jewellery (rings etc) from remains which means your most treasured person is with you always. Just a wee idea, sincere apologies if I have upset you further.
Sending you love Roz and wishing you much brighter days ahead.
Angelina xx
Oh Min, bless you …. I'm just on catching up. What a rotten time you are both having! I'm so sorry for the strain you are feeling, I truly am.
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 with your "bananas, eggs and pyjamas" worrying as you go hoping the professionals are caring for our loved ones in a way similar to ourselves.
From reading your posts above it appears Peter has turned a little corner, thank heavens. Slowly but surely all the wonky bits will return to near-working order again. A good sleep will help be of huge benefit to him, his tummy will settle, his mouth will repair …. just a little step at time.
Its awful watching them suffering and feeling so incredibly helpless … I think thats the worst part of being a carer for me anyhow, just stroking Johns head or hand at times and feeling completely useless (although I know he benefits from the soothing feeling), but I still feel quite inadequate.
I think you are right to put your kitchen on hold, theres just too much going on for you at the moment – best to concentrate on Peter getting well again, the kitchen can wait it certainly won't do any harm to put down one of the many balls you are juggling.
You are doing a wonderful job Min, Peter must be so incredibly proud of you. I am hundreds of miles away and just a face and name on the screen but I'm mentally cheering you both on with pom-poms and pig-tails!!
Sending you love Min, and healing light to Peter
Take care of [i]yourself[/i] too
Angelina xx
Awe Min, bless you ….. I'm a big softie too, and theres nothing wrong with having a heart its a quality some people aren't blessed with.
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 about it … but then we're all different. The decision is ultimately lies with John and I, I won't let my SIL put a spanner in the works. We've decided putting together some memories will do the girls more good than any harm and I think we know our children better than anyone else 😛
I LOVE your "Memories Book" – how wonderful Min that you started collecting all your bits and bobs from so long back, what a totally brilliant thing to do. I chuckle when Erin asks if I had electricity when I was little!! (I'm only 38!!!) or did I have a computer and were there any cars?! 😀 Maybe I should start writing one too! She calls my childhood "The olden days" !!! 😀 Ahhh, you've got to love them.
Sending love and healing thoughts
Angelina xx
Evening Dai
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 on Amazon, I'm so pleased I've started my search …. just have to find a box now.
I'm sure the girls will absolutely adore having such a treasured keepsake from daddy …. it'll be so nice for John to share his stories with them now, and then in years to come they'll have the stories to share with their children too about their grandad. Ahhhh, lovely. I've even ordered up 2 books for myself "dear mum, from you to me" that I'll fill in for the girls too. What a great idea!!
Wishing you well with your book Dai, and yes you just never know when God is going to telephone down and ask you to join him, what an honour though.
Sending love and healing thoughts
Angelina xx
Thanks Michelle.
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 about Stephen not liking the thought of a memory box/book being done behind his back. So I thought I'd best tell John what my plans were and asked what he thought rather than working on it without him knowing (thanks again Gill and Stephen).
Great news is that he thinks its a great idea too. He wants me to get photos of him in his Navy days so he can write stories (well I'll probably do the writing for him) and tell the girls about when he was out at sea! I'm so overjoyed that he didn't shoot the idea down like his sister.
This has fueled my little fire of inspiration. I'm now on the hunt for a suitable box and book … amazon here I come!
Sending love and healing thoughts
Angelina xx
Holy Smoke!! Dai this is WONDERFUL news!! I'm so happy for you I could burst – yay!!
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 happy for you both
Sending love and healing thoughts too
Angelina xx
Oh Tom, bless you, thank you for your lovely message.
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 right about the blip … infact we've been here before – John wasn't expected to last his first 6 months, his DJ friends all got together back then and did a fundraiser to get us to Disneyland Florida with the 2 girls before John passed on (he had a wish to see the girls faces in Disneyland before he died), then just to spite us all he's lasted 4 extra years!! Kidding aside he's done really well over the past 4 1/2 years, he's been a poor soul during this time though and I do wonder just how much more his broken body can tolerate. I do know that he's not ready to give up just yet though so that is very positive.
Onwards and Upwards Tom ….. 😉
Sending love and healing thoughts
Angelina xx
Hi Shirley, thanks for your message, bless you.
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 too
Angelina xx
Bless you Mavis, thank you for your lovely words.
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 indeed and VERY much alive making "ooooooooh" ghosty noises! 😀
Sending love to you
Angelina xx
Hi Bridget, I hope your pain is better today …. or I should really say gone shouldn't I?! Poor you, I hope the doctors/specialist nurse can adjust your medication to a suitable level, its all a matter of tweaking till you get to the right level. I think they try to start you low and build you up rather than the other way around.
Thank you for your reply also. Teagan is just a wee innocent girl who's never known anything different other than daddy being ill – she was only a few months old when he was diagnosed. Erin on the other hand is having help at school in the way of time out with a teacher/counsellor – not quite counselling her but playing games, drawing and chatting about her worries. She was 5 when he was diagnosed so remembers the daddy who used to run around the garden and work all the hours God sent, the loss for her is greater. The school have been great with Erin, Teagan hasn't needed any support as yet.
Everyone has given such good ideas about boxes and books and I really feel I can't wait to get started. The sooner the better I think and it shouldn't do any harm. If family feel hurt by my request then I believe it is their problem and they can't see the big picture, what matters to me more than anything is that my 2 girls feel secure and have some wonderful memories of their daddy which will hopefully be provided by his friends and family.
Sending love to you Bridget
Angelina xx
Ahh Min, bless you. I hope you and Peter are both feeling better today, though please don't go beating yourself up that my situation is worse than your situation because you have grown up children and ours are still little…… its just not the case. Life is terribly unfair yes I agree, though its the hurdles you jump that make you a stronger more able person don't you think? Its hard to see at the time though but afterwards on reflection I personally believe I can see some growth (in myself anyhow and also in the girls). Teagan and Erin are both very sensitive yet understanding wee girls. They have such compassion and empathy for people in wheelchairs and who are physically and/or mentally disabled. They will help anyone given the chance so they have my heart swelling with pride constantly. I don't think they'd be this way if they hadn't experienced their daddy's illness, so in an odd kind of way his illness has been a blessing on their little lives.
Oh I know the photo books you are referring too – aren't they great?! I've had calendars done in the past and have looked at the books but never had them done. What a great idea! Thank you for this suggestion. Everyone has given me such inspiring ideas, I feel something positive is coming out of something that is actually quite negative. So thank you also for your message!
Sending love and healing thoughts
Angelina xx
Tina, bless you. Thank you for your reply too.
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 not the right time and not do it.
I like the idea you have of putting together your life story in an album, looking back on the happier times of holidays and Christmas's when life seemed so much simpler. I love looking through old photos too, a flood of smells and sounds come flowing back which lets you relive special moments. This is something the girls both love to do, they've always got the photo albums down from the shelf asking lots of questions which is great for sharing experiences, wee flowers.
Thank you for your kind words Tina, sending that strength and love right back to you also.
Angelina xx
