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Hello Ann,
yes, we have had some blustery wild weather too, bit better today though. So pleased that things are moving for you. Have they said if Terry’s mobility will improve as his treatment progresses, so that he can lie down? As you say what a weird condition it is, very personalised to the individual it seems love.
prior to diagnosis on 2nd June, I was working full time, I am a Finance Manager in a large secondary school. Steve, ironically worked in the care industry, working in the community on reabilitation of the elderly. He has also worked in residential homes for the elderly, and in a facility for profoundly disabled young adults.
Somehow I feel our ‘working life’ has come to an abrupt halt. Like you say, plans change!, let’s face it, if we are given ‘precious time’, it has to be about other things, not work. Freaks me out a bit, as I am by nature a control freak, and oh boy, do I feel out of control just now!
I contacted the hospital today and raised my concerns about transporting him to his appointment next week, and they are going to send an ambulance for him, so that is a relief. Our consultation is at haematology at the Hallamshire hospital in Sheffield. Can’t come quick enough.
All the best to you both, hope you both keep well and strong. I will log on regularly to chat if that is ok, I find it helps.
julia x
Hello Julia,
So very pleased that you have transport sorted out, it is a worry how to get our stiff/unmobile men into vehicles, its just another “thing” that we have to ask for help with.
All the very best to you both and roll on next week, I am very glad that you like to chat as I also find it a great help, that some one else understands just what it is all about.
Keep strong.
Love Ann x
Hi Ann, hope you are both ok. how is Terry doing? We are still playing the waiting game, but trying to keep our spirits up, despite having to get Steve a commode……you can imagine his reaction to that! But needs must just now!
Take care
Julia x
Hi Julia. you to are burning the midnight oil !!!
Terry is still doing well with no side effects to the 2nd chemo treatment (so far so good ) and the pain remains manageable. Sorry about the “commode ” but as you say needs must, Tonight I have just ordered a “older persons high seat arm chair ” for when Terry comes home.
When I read about your “commode” and our “high chair” I have had to smile, or else it would have been a cry, what we have become in less than 3weeks, still we need these items so that’s that.
Take care, just of to bed.
love to you both
Ann x
Hi Ann, yes I find myself staying up late, or being unable to sleep just now, understandibly so, I guess.
As for your chair, I have saved a leaflet on one of those electric rise chairs, which fell out of the radio times! OMG….
Looking back I think Steve has had this for a number of years, as he had repeated attacks of gout going back at least 3 years, but again, nothing would have pointed us in this direction, so I guess, if nothing else, we have lived these years in blissful ignorance!
He is ok in himself, but his mobility is really bad.
Thinking of you both.
Julia X
Hi Julia,
You have mention “gout”, Terry supposedly had gout (that what are gp said) in his ribs !!!!!!!!
the myeloma consultant raised his eyebrows at this news,.Terry also has had pain in back and ribs for a number of years, GP said gout for his rib area and wear and tear for his back.
When our emergency A&E admission on the 21st may due to Terrys sternum fracturing a ct scan picked up several fractures of his spine, you are the only other person I have heard of who has mentioned gout, how strange!!!!
Glad Steve is ok in himself, I am sure his mobility will vastly improve once they start the treatment, Terry had a little walk today along the hospital ward, and his mobility and posture was much better in his spinal brace, although it is murder to wear, it seems to be doing the trick.
Lets hope we all have a good week to come.
take care love
Ann x
Hello Ann, I’m burning the midnight oil again. So pleased to hear that Terry has managed a walk today, things we all take for granted eh?
Yes, gout….well, our gp diagnosed Steves gout over the phone, as we couldn’t get an appointment! He had a wicked time with pain in his feet, which they then said was tendonitis. Spent a small fortune on various insoles, gel, copper etc! Last Summer we even changed our car to an automatic as he was finding it difficult to press the clutch pedal down! Hindsight eh?!
The Macmillan service are coming out tomorrow to assess the house for any mobility aids. We could not have a worse house for mobility issues……it is a four storey Victorian terraced, steep steps back and front, and two narrow steep staircases internally, even a step down from every bedroom…..I guess you don’t think about mobility issues when you buy a house when your young do you? Ironically we were only saying the other week that the house was far from ideal to see us into our old age, and maybe we should consider moving!
Anyway, onwards and upwards, best wishes and hugs to you both.
Night Night.
Julia X
Hello Julia,
Managed a bit earlier night last night, another very hectic day, had to get help in early evening to trim the goats feet, mornings taken up with feeding watering and mucking out, then off to hospital 40 mile round trip then the evenings with much of the same plus all off the extras that come along.
How our lives have changed just like yours and at the moment we seem to be doing much the same thing. ( except the mucking out bits ). Yesterday morning had a call from the OT department at the hospital to talk about Terrys mobility needs re Aids etc, so I was measuring steps height , width how many etc. double sockets and positions for the hospital bed, gaps around the loo for a frame, and on it goes . I will be interested to hear how today went with your house assessment. Also interesting about the “gout”, we also spent a small fortune on back supports etc.
Yesterday evening Terry had his first treatment of ” Bisphosphonate” via a drip this will be needed once a month to help built up his bones, and this afternoon had another dose of “chemo” so far so good and his next one is Thursday and that will complete cycle one. How strange one gets used to talking about this treatment , only 24 days ago we lived in ignorance bliss and never in a million years would I have thought we could be having these type of conversations, chemo, mobility aids, etc, but on the plus side at last we know the real reason for all his pain, for all this time and can get the right treatment, No MORE GOUT, Rubbish and pulled muscle codswallop.
Best wishes and hugs to you both too ( not to hard on the hugs though for Terry and Steve, just yet, we need to take care of those bones, until we can give them a really good bear hug when we get our men back fit and well ).
Love Ann x
Hello Ann
So pleased Terry’s treatment is going well, hopefully Steve’s will be moving soon, he has been uncomfortable today with sciatica type pain.
Your days sound busy, mine are a bit strange really, not working, can’t even walk the dog unless there is someone to watch Steve, and certainly no goats to look after! But as for ‘mucking out duties’ does ‘commode’ duty count? 😝
The lady from Macmillan came out today, she was really nice and helpful, but it made it all too real, so,I found it hard. Anyway, they brought a shower swivel seat out, but as I had a fixed shower screen in place, I have had to release that, to allow the chair to fit. When I say ‘released’ it, I simply took a Stanley knife to it! So, until I get a shower rail and curtain fitted I will just have to mop the bathroom after we have showered! As suspected the staircase is too narrow for a stair lift. They are going to install a second hand rail on the stairs, and one just outside the bedroom too. It was a bit scary when she started talking about wheelchair access, or rather lack of it! It all seemed to be moving too quick, and in a negative direction, but I guess they look at the worse case scenario.
I am hoping that his mobility will improve when his treatment starts, fingers crossed.
The Macmillan Physio lady is coming out tomorrow, so I’ll let you know how we go on.
“Gentle” hugs to you both, keep strong.
Julia x
Hello Julia,
Commode duties certainly count in my book as “mucking out “. It is all very scary at the pace with which things seem to move, but lets hope after Friday things will move at a good rate for you and Steve and the action will really start, that too is scary but in a sort of good way, because you feel that help is at hand every one is trying their very best to help and get it sorted.
Saw the consultant today ( he only looks about 12, I am sure he is not ) and Terry is having another “chemo ” on Friday which will finish the 1st cycle, how quickly this seems to have come around, when at the beginning nothing much seemed to happen, here we are on the 14th June talking about finishing the 1st cycle, and on the 14th May we lived in blissful ignorance until the 22nd May and that bombshell. Told Terry about you “releasing” the shower screen and he laughed and said that is the sort of thing that I would do, well why not we have more important things to think about than the right way to do something, just get on and get it done I like your style.
we really hope that the Macmillan lady can help Steve with some physio and I am sure that once your treatment gets under way that Steve will start to improve when the pain goes away and get his mobility back.
Gentle hugs (we like that saying ,thank you ) to you both
love Ann x ps you keep strong also x
Hiya Ann,
I do look forward to writing and receiving our posts. X
Hey, who needs DIY SOS if you’ve got a Stanley knife!
Well another day over, just going through the motions, bit of cleaning, washing etc. Steves dad has been here most of the day today, which is tough on him, but he likes to come.
The macmillan lady has given Steve some crutches today, he has been shuffling round with a stick, but hasn’t been downstairs since the weekend before last, he feels a bit safer with the crutches, just terrified of falling.
My friend came down at 6, so we went a little walk with my dog, just half an hour, but it got me out of the house.
Our son, Lewis, is handling it in a weird way….he simply cannot be in the house, he goes to work, comes home, showered and then always has ‘something to do’ or ‘somewhere to go’…..part of me gets cross as I could do with him being here, but then again, he says it breaks his heart to see his dad this way, so I guess he has to do whatever he has to do to cope. Not so easy for us to ‘run away’ though is it Ann, even though we sometimes feel like doing so.
Well, I’ll sign off for today.
Take care.
Julia
x
Hello Julia,
glad you got out of the house for a bit of normality, it seems at times that our world revolves around the Myeloma (which is true at the minute ). I am sure your son will work through the shock and when treatment starts to happen will feel more able to cope, we find it hard seeing our Hubby’s in this state it must be equally hell to see a beloved dad, who is always the strong one in this state. Well every thing crossed for your appointment tomorrow lets hope you get the answers and the action starts to happen will be thinking of you both tomorrow and sending positive vibes up North, look forward to hearing from you sending gentle hugs and love.
night night
take care love Ann x
Thank you Ann for your lovely post and kind words. I will Let you know how we go on at our appointment tomorrow. Been waiting for it for what seems an age, and now it is nearly here, I am terrified.
Hope Terry is doing well.
love and little squeezes to you both!
Julia
x
Hi Ann
Just a quick update, still a bit of a waiting game but at least we are in the system now. MRI scan on Tuesday, bone marrow biopsy on 28th June, then back for all results and hopefully a plan on 6th July, Steve is really not well at all at the moment, pain, fatigue and nausea. Ambulance crew have asked me to put a bed downstairs as it was too dangerous transporting him last week, so we are going to do this on monday. How are things with you?
Julia x
Hi Julia,
Sorry to hear that you are still waiting but you are in the “system” and at last things are starting to happen. Terry had his 4th and final chemo on Friday that completes cycle 1.
The hospital bed should be arriving with us on Monday, so Terry should be able to come home Tuesday, he is quite worried about coming home about how we will cope although he is looking forward to it he has had a few bouts of breathlessness side effect of Chemo and Thalidomide and his sternum fracture isn’t helping, also the spinal brace is bulky an tight so no wonder he is finding it hard to catch his breath sometimes. We really hope Steve will soon start to feel better it is a worrying time all round without feeling unwell. Remember to take care of yourself through all of this Julia, as friends remind me that I must do so, as they rightly say our men are relying on us and we must remain fit and well to help them ( easier said than done sometimes ). Try not to worry and remain positive, have a good rest, night night, gentle hugs
love Ann x
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