Thank you Tom and Bridget for your supportive messages.
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!? Eh?!
Anyhow first couple of days at home were scary both with ongoing diahhorea and mobility issues. Over the past week his diahhorea has slowed down – now that I've said it out loud it will no doubt bite me on the bum (so to speak). John is in bed permanently so mobility not such an issue until he needs to use the bathroom – this is where we form a conga line and he holds onto my shoulders …. not ideal but works for us until he's more mobile again.
We've had a care package put in place so John is getting lots of adjustments to the house that weren't already done a few years back when he was first ill – stairlift, comode for the bedroom, self-cleaning toilet for the bathroom, more bannisters etc …. its all happening at lightening speed so I'm very impressed with our council. As for the toilet – well I'll never get anything done in the house again, I'll be spending my day on it, 😀 It has a heated seat, and gives you a wash and a blow dry!! How very clever! This ofcourse will give John some of his dignity back and saves me having to sort him out.
Visit to consultant yesterday was to wave him goodbye. John has been attending a hospital 40 minutes drive away, however a new local hospital has recently opened just 10 minutes away so John is reluctantly transferring – phew, lots of money to be saved on petrol and time ofcourse too as well as a shorter more comfortable drive for John.
Velcade is still on hold until his Kidney function stabilises, I'm hoping this can be held off until we return from our little holiday in July. We head to Great Yarmouth – my childhood holiday destination, I've been going since I was 10 months old and love it there, the girls love it now too. Depending on Johns mobility/health etc he'll either be in the cattery with the cat or coming with us … we're all hoping the latter.
His appetite is back which on one hand is great, but on the other I'm running here and there fulfilling his every wish! 😛 At the moment he's almost cleared the butcher out of lamb chops, bless him. So long as he's happy though I'll do what I can to sustain that.
Sending love to all
Angelina xx
Love it Dai!!
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 much admiration
Angelina xx
Hi Dai. Awe, bless you. I'm sorry you are experiencing discomfort and have become locked in the prison of pain.
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!!
I dreaded his "break week" as his mood became very low and he, like you say yourself, crawled into bed and slept ….. and slept. It fascinated me just how instantly he fell asleep. He's always been sleepy with all the breakthrough pain relief he takes along with his normal patches; but with the Velcade in the mix he was a little dormouse and was spending more of his day with his eyes closed than open. I believe this is what caused him to fall down the stairs – his incredibly tiredness – so please do take care.
Its a big old nasty drug which does its job in a brutal way. I know the consultants said to John that if the symptoms became too much then they would stop – this scared the living daylights out of us!! However, since his bad reaction the "powers that be" have decided to look at Velcade once again for John but on a lower dose and only once per week injection. His wonky kidneys have to right themselves first though, but at least Velcade hasn't been completely pushed out of the picture. Maybe your team will look at doing this also?
Keep thinking those positive thoughts, you can do it! We're all behind you waving pom-poms and cheering you on.
Sending love and healing thoughts
Angelina xx
Evening Dai!
Wow, what a wonderful team you have working with you – so quick to act on your wonky bits. I'm so pleased for you that they've already got a plan in place. Velcade will most definitely "get it" I'm sure, its quite a nasty beastie!!
Fingers, legs and eyes crossed there is no suspicious wonky bits lurking, though if there is then the various scans will seek it out and mark it with a "X" for obliteration.>:-( As for radiotherapy well I'm afraid John has never had this treatment so I'm unable to comment on it and feel pretty useless in this department.
You are a wonderful source of inspiration, oozing positivity and your knack of facing whatever comes along straight in the eye is so encouraging. Sock-it-to'em Dai, show that sore chest just who the boss is and wipe it out!!
Sending love and healing thoughts too
Angelina xx
Awe bless you DMC, thanks for your kind words.
I'm soooo pleased your SCT has gone well; John was never well enough for it so its always been out of the picture – his consultant had also told us how awful the treatment is so I take my hat off to you for getting through it. May you continue with good health for many a long year!
John had a hospital stay for a couple of weeks whilst they rehydrated him after all the diahhorea of volcanic proportions! 😛 He's been home for just over a week and what a busy one its been – we've had all kinds of lovely people out to the house offering stair lifts, magic "self cleaning" toilets, bannisters, comodes, bedtables … oh I could go on. This week we've got the workmen in and the moving and handling team coming to show me how best to lift and support John from lying and sitting positions to standing and back again – he's a bit of a lump really! So lots of wonderful help going on which will make all the difference.
His velcade is still on hold until his wonky kidney function stablises, in one way a godsend to have a break but in other ways I worry slightly that the myeloma may just decide to suddenly accelerate, however I'm guessing that if the numbers were all that bad that the consultants would make a move on it to put it right. So worrying knocked on the head and my positive head is back on again 🙂
John is starting at a new hospital next week, building has finally finished and departments are opening – We're told the consultant there is young, blonde and has lovely long legs!! Heavens, John'll never be away – he'll start making stuff up I'm sure just so he can get back into see her! 😀
Wishing you a wonderful week ahead DMC and sending healing and healthy thoughts your way.
With love
Angelina xx
Awe Gaye, bless you. What a rough time you're having.
Hope you get some good news on Thursday with the surgeon, anything that will help is a big step in the right direction. Comfort is paramount so do what you have to do for a bit of relief if thats at all possible.
Sending you healing thoughts meantime.
Much love,
Angelina xx
Thanks Dai, I'll have a wee look at this in the morning. Looking forward to it already, I like to know whats heading our way.
Many thanks
Angelina
Bless you David!
Thank heavens for people like you – you always make me laugh out loud!!
You have the most wonderful, positive, light-hearted attitude to life, its so refreshing and brings a big smile to my face. I love your spirit.
…. and yes, I am impressed that you know the date of your anniversary! 😀
With love
Angelina xx
Awe, bless you David, thank you for your kind words.
John and I met with his consultant on Monday this week, well it was with the head of the department to be precise. I mentioned the Velcade Sub-Cut to him; quite funny really …. he looked at the MacMillan Nurse ….. she looked at him …. frowning faces … eyebrows raised, dropped …. surprise … then with a squinting face he said "oh no sorry, I haven't heard of that". Agghhh!! 😀 Aren't we in the dark ages in this country? :-S During consult they toyed with re-starting John on Velcade once again, but with only 1 injection per week and at a lower dose. For the moment though, they are more concerned with kidney function so Velcade is on the back-burner. He's having more bloods done today to check kidney function yet again and they may admit him to hospital for IV fluids if the numbers are still not good. The stair-lift hasn't been fitted in the house yet, the Occupational Therapist has advised against John using the stairs meantime (he's been upstairs in bed since coming home) so I don't really know how I'm meant to go anywhere with him – maybe he'll sprout wings and fly down the stairs (avoiding all the bumps this time!), maybe should feed him some of that energy drink that sprouts the wings for you?! 😀
Well I can report that John had a diahhorea-free day yesterday – yay!! The washing machine got a break … I'm a real life living Cinderella. So a wee step in the right direction at last.
Off to feed him some pills now, that'll make him happy 😛
Wishing you a sun-shiny day David
With love
Angelina xx
Awe bless you Dai, what an absolutely beautiful message – I've got goosebumps all over. I'm sure those who have lost someone dear can relate to every single word, you have truly spoken from the heart.
Much love,
Angelina xx
Just want to say hi Ali.
As everyone has said before me – this site is absolutely tremendous! You'll get more help, advice, support and answers here than some consultants can provide. I have recently returned after a 3 year break. We're all more or less in the same boat so lean on each other in times of need.
I care for my husband John, diagnosed December 2006. I remember vividly when he returned home from his first consult him telling me that he'd met a lady in the waiting room who had been in remission from MM for 19 years – wow, this gave us both great hope and we've clung onto that hope since then.
I do hope Guy will soon be well again so you can have him home with you.
With love
Angelina xx
Excellent news Eve!!
How wonderful you've got Slim back home safe and sound, what a relief for you all. Now you can pamper and care for him the way you want to and at your own pace without restrictions of visiting times etc. You must be absolutely exhausted carrying so much on your own shoulders these past weeks. I know its not a burden, we all love our husbands/wives and would do anything for them … but its exhausting and draining all the same.
Hopefully with a bit of encouragement, some tender loving and some nice home cooking Slim will be able to gain a bit of weight back again. It will make a world of a difference to him being back in the comfort of his own home in his own surroundings, that itself will help along his appetite for both food and life again.
I'm pleased to read a friend has been helping with household chores, unfortunately the world continues to turn no matter how hard we want it to stop. Please make sure you are not running yourself into the ground, I'm as much preaching to myself here as I am to you … I'm running after John at the moment following his discharge from hospital and I don't actually realise how tired I am until I sit down and stop for a moment, thats when it all catches up with me.
Sending you lots of positive energy Eve and big hugs too
God Bless
Angelina xx
Phew!! This is fantastic news Bridget … what a great week for good news for everyone. Yay!!
John used to take MST and Severedol (I think thats what you take isn't it?). Those were stopped a few years back as his pain was so bad.
Fentanyl patches have worked great for John, took a bit of jiggery-pokery to get the right strength for him; they'll probably start you off on a low dose and increase to suit your comfort.
For breakthrough pain John has Abstral (a wee tablet that disolves under his tongue for instant relief usually when he's hurt himself and needs a superfast remedy), and OxyNorm (tablets he takes through the course of the day when he feels pain). He's also got Lidocaine patches which numb the area they are attached to, for John its the bottom of his back. This combination of patches and tablets seems to work for John.
Don't think it does any harm to have your medication tweaked now and again, and certainly if you gain a bit of "near-normality" back then that is also a big relief.
Wishing you well Bridget and hope you get started on something quick to help with your pain.
Sending love
Angelina xx
Hi Gill
I've just got John back from a 2 week hospital stay – he had 2 cycles of Velcade then like Stephen took VERY bad diahhorea – you may have read my post "Volcanic Diahhorea"?
He was becoming terribly dehydrated and blethering a whole lot of rubbish as his body wasn't holding enough water in so thankfully was admitted for extra fluids and TLC. He was able to produce MANY samples 🙂 though they all came back clear with no sign of bugs/bacteria so it was put down to the Velcade.
Two weeks of fluids has helped though he still had intermittent diahhorea during this time and his kidney function is all doo-lally which is bad for him (he has amyloidosis which affected his kidneys). He is now home and still having intermittent diahhorea though they've given him Loperimide to slow it down (similar to Immodium). He developed low blood pressure also during his hospital stay and managed to pass out a couple of times, again just down to lack of fluids in his body. Yesterday he was back for bloods and review – kidney function is wonky, more bloods to be done in a couple of days though I don't hold up much hope for his kidneys as last night again he was having bad diahhorea – theres no end to the stuff?!
Apparently the Velcade affects nerves within the intestines. I hope Stephen and John improve very soon, its quite exhausting washing and cleaning up each day. I did however collect rubber sheeting from our District Nurse which has helped save the bed and also John is wearing pads to give him a big more confidence and not having him feeling bad about the mess he's making.
Hope Stephen and yourself get a rest sometime soon
Sending love
Angelina xx
Yay!! Great news David, what a relief!! Truly wonderful news, and like the others say – its a great start to the week.
Like Jean, I am also jealous you can cycle 5 miles …. I'd need oxygen waiting for me at the finish line!! 😛
I had my bowel removed 10 years back after suffering severe ulcerative collitis – every appointment was made up of my descriptions in colours and consistencies, and cameras, heavens the cameras, so many cameras – you don't want to go there if you can help it!
Sending love
Angelina xx
