Hi Ann
I will look for the drug information sheets, thanks. Communication with regards to Steve’s drug regime, has been a wee bit sketchy, I think that is due to him being on critical care. Also, whilst he has seen many dr’s, I haven’t been there for their rounds.
My trip to the hospital is a 30 mile round trip. I try to time my visits to avoid the tea time rush hour, or it can take an age to get through the centre of Sheffield. Like you, other than my son, I have no family, I am an only child, and had lost both my parents by the time I was 32. I do have cousins, but they are in Manchester and Scotland. Thankfully, Steve has a large family, so whilst I do like to see him most days, I could miss a day, as I did today, at least the option is there.
All being well, they are hoping to move him to the Northern General hospital tomorrow afternoon, into the care of the renal unit. He is nomadic between 3 hospitals! I will go in the morning, hopefully before they move him.
Well, it is getting late again, and Daisy is snoring her head off, so I guess it’s bedtime.
Best wishes to you both as we undertake this journey together.
Love, Julia & Daisy! 🐶 X
Hello Ann
Your posts keep me going, and make me smile 🙂.
Steve is still nice and stable, but is still in critical care, due to his dialysis mainly. They have been able to reduce his oxygen somewhat. He has been allowed to sit up 30 degrees, so that has made him more comfortable.
His dad, brother, aunt and uncle are visiting throughout today, so I am having a day at home, to try to catch up with things. Like you say, normality is indeed weird, being in this situation. Do you go to the hospital every day Ann?
Our dog, Daisy is a Dogue De Bordeaux (Turner and Hooch dog!). A huge, ageing, soft lump of a dog, bless her.
Your poor sheep, hope they don’t develop an identity crisis!
So, where is your bed ?? I don’t know, here is mine taking up space, and yours is AWOL !
Yes, like Terry, Steve is receiving excellent care. His treatment is somewhat stalled due to his current situation, but he is on the steroids and thalidomide.
Much love to you both.
julia xx
Hello Ann
Terry seems to be doing really well, that is great news 😀.
Steve is still on critical care, but more stable. Despite being on oxygen and dialysis, they did take him for his first radiotherapy treatment yesterday morning. The MRI had shown a tumour, caused by the myeloma, in his upper thoracic spine, which has pushed one of his vertebrae out, causing pressure on his spinal cord, hence the pain and mobility issues. They dont seem to have mentioned surgery again, as yet. He too is on steroids also. They have allowed him to sit up 30 degrees, so he is a bit more comfortable, and has managed to eat a little bit, which is good! as he has lost so much weight. Good job he was a well made guy to start with! Like you say, things have certainly got moving now!
Eating at the hospital does seem a good idea Ann. I did use to do that when my mum was ill, and I was going to the hospital every day from work, so I don’t know why I didn’t think of it again! Just been in such a state I guess. I have eaten better the last couple of days though. I haven’t been to the hospital today, Lewis and Steve’s friend went this morning, and I think some of his siblings may have been this afternoon. I’ve cleaned up a bit, took the dog (Daisy) for a little walk, just feels so strange ☹️.
I have hoovered around my ‘elephant’ today 🐘 !
Love and baby hugs to you both. Xx
Well, Ann, I wish I could say that things had settled down, but sadly not. Steve was not very well through the night on Tuesday, and when I got there on Wednesday, things were not much better. They had done his bone marrow biopsy, they took it from his sternum. They had catheterised him, got him on a fluid IV drip, plus anti sickness. I was there for 3 hours, and he began having breathing difficulties whilst I was there, he was on oxygen on the ward when I left at the end of visiting. It had been their intention to move him to Weston Park that night to put him on dialysis overnight, and begin radiotherapy in the morning, surgery seems to be on the back burner for now.
I got home about 8.30pm, and received a phone call from the ward at 9.30pm, saying that they had transferred Steve into critical care due to his breathing issues, and his low blood oxygen levels………panic stations, back to the hospital we went.
Oh dear, he was not in a good state, but what a state of the art area critical care is, never seen so many staff or machines, one to one nursing, absolutely amazing place and staff. We got home at 2.00am
Been back again today, he is still needing oxygen therapy, and he is on dialysis. They think this has happened because he was being pumped full of fluids on the ward, but due to the fact that he had to lie flat, and has been immobile for some time, plus the fact that his kidneys are not working properly, the fluid has built up and settled in his chest cavity. As they could not commence the radiotherapy, they have started chemotherapy today.
The haematologist spoke to me briefly today, just confirming the diagnosis. She gave us all the ifs and buts and whys and maybes, but whatever, we’ve got to just get on and deal with this. So, once things stabilise, and hopefully he gets put back on a normal ward, the treatment will continue. I do think he is in for a lengthy stay in hospital though, but is in good hands.
So, things havent quite gone according to plan, but then this diagnosis wasn’t in the plan either!
Tomorrow (or rather today), burning the midnight oil again, is another day, so onwards and hopefully upwards.
Hope your bed comes, and you get Terry home soon, if not, pop over to Yorkshire and borrow ours, which is now a white elephant stuck in the living room!
Best Wishes and gentle hugs.
Julia
xx
Hi there Ann,
Well what a day we’ve had! Taken by ambulance to Weston Park this morning, they then decided that they didn’t have the equipment to get him onto the scanner given his mobility issues, and excruciating pain (he was really bad today, feeling so ill too). Anyway they managed to get us a slot at the Hallamshire, so the ambulance took us there. They did his MRI, then the doctor who had looked at it came to see us. He confirmed that it was Myeloma, didn’t elaborate on stage/grading etc, he was more concerned about what was going on with Steves spine. There was a couple of areas on it, one in particular, which was putting pressure on his spinal cord……so, they have admitted him! So we left home at 11.00am, and I got back at 7.45pm.
They put a fluid IV Line up, and gave him some steroids,,but unfortunately he vomited them up very quickly. Which is another story…..I am absolutely petrified of being sick myself, or being in the vicinity of someone else being sick….(emetaphobia, is the clinical term I believe), so holding the bowl for him nearly finished me off, to the point where the poor nurses had to sit me down with my head between my knees to,stop me from throwing up and/or fainting! I guess I’m going to have to man up! Honestly, I can deal with copious amounts of blood and gore, commode duties don’t phase me, but vomit, now that is a whole different level.
They took him for a CT scan at 9.00pm, and they are going to make a decision tonight whether or not to operate, in the meantime he is laid flat and is not allowed to get up for anything, no wonder he has been in such a state, and we have been struggling on at home. So, scary as it is, I am relieved that he has been admitted. Ironically our hospital bed was delivered today. Has yours arrived yet Ann?
On a lighter note, your sheep shearing antics really made me chuckle, I bet your collie dogs were glad they weren’t in the vicinity, like the advert!
so, lots of news today, I have just had some cheese on toast, having not eaten all day, and it is now 12.30am, so I really should try to get some sleep, no shortage of beds here, got 4 to choose from…think I’ll give the hospital one a miss though!
My thoughts are with you both, speak again soon.
julia
x
Hello Ann
Our bed should be arriving sometime tomorrow, steve’s dad is coming up to wait for it, because we are at hospital. Whilst the downstairs bed solves the transportation issues, it does mean that ‘sponge down washes’ are the order of the day for the foreseeable, not forgetting the commode duties also! Steve may not feel as isolated if he is downstairs though. It is scary having them at home Ann, especially with severe mobility issues such as Steve’s, and all the tranclements that this needs, the house fast resembles a hospital, making normality even harder (if that is possible!) Good to hear that Terry has completed cycle 1 of his treatment, have they managed to do his MRI yet?, or give you any indication of how many cycles he will need? Has his pain improved?
Sorry, too many questions, it’s just that you are one step ahead of us!
Anyway enough poorly talk…..what about this scorching weather eh? My poor dog doesn’t know what to do with herself, she slept on the bathroom floor last night trying to keep cool!
Hope all goes well for you when Terry comes home. I will post again sometime tomorrow.
Take care, both of you.
Love 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
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
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 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 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
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 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
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 Ann, Thank you so much for replying, it really does mean so much. My husbands pain is sort of under control, but his mobility is very bad, has not been downstairs for 4 days, as he feels too wobbly to tackle our very steep narrow stairs.
He finds it almost impossible to sit down in comfort, so he either stands with a stick, perches, or lays down, I do hope this improves for him when his treatment begins. I must contact the hospital in the morning as I think I will need an ambulance to get him to his appointment, there is no way he will be able to get into my car, and certainly don’t want to start pushing and pulling on the already fragile bones!
His name is Steve by the way, and he is 59. He is from a large family, eldest of six, his parents are still going strong too! I have an amazing network of friends, so we have a lot of lovely supportive people around us.
Ironically we were both thinking of retiring next year, then WHAM…..best laid plans eh? But like you say we don’t want it, but we have it, so it is what it is!
Well, it is 11.40pm, guess I will go to bed and try and get some rest.
Hugs to you and yours.
Julia
x
