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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
Hello Julia,
Hope your bed gets delivered on time and it will make life easier for Steve, Terry is on sponged down while he is in hospital and this will carry on when he comes home for a while at least, the delivery driver of “hospital bed ” rang today saying he could not deliver as they didn’t have a mattress !!! so Terry is still in Hospital while this get sorted we had all geared ourselves up so are very disappointed , hey that’s life. Terry’s not has a MRI scan yet as he is still unable to lie flat, but our consultant made the decision to go ahead with all the treatment anyway. Regarding the “chemo” (VTD) cycle’s it will either be 4 or 6 and he is on a 3 week cycle. Which goes something like “chemo” twice a week for 2 weeks thalidomide every day and steroids in batches of either 2 days then a couple of days off then another 2 days of steroids or sometimes 4 days of steroids then a fairly long break. So far so good with the treatment he has had very little side effects, ( no sickness or hair loss ) although his feet have swollen a lot and he has been a bit breathless. His pain has vastly improved but seems to be on a shed full of drugs ? His mobility has greatly improved this happed when he got the spinal brace, and today did 30 mins walking (along hospital corridors ) unaided and 11 steps up and down again without any help, which is brilliant. The little things that now make us happy !
We are having the scorching weather and little people in fur coats really don’t know what to do with themselves, our collies are stretched out again on the tiles in the kitchen, we have friends staying ( our old neighbours from Derbyshire ) and they are a godsend, Sue is cooking meals, Fred is doing running repairs to fences etc. We have had a few laughs over this weekend as the sheep needed to be shorn ( I missed the contract shearer a couple of weeks ago, being on my own couldn’t get the sheep into the trailer to take to the neighbours sheering point ).
So on Saturday we decided that they needed to be shorn, and the only way was by hand, so Sue and I got the very old hand shears out, and it is a case of “should have got to spec savers “, it is still work in progress but the fleeces are nearly off, and our small flock are much more comfortable. Really hoping that all goes well for the MRI tomorrow and that Steves pain can be got under control.
Take care have a good rest, gentle hugs.
best wishes
Ann x
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 Julia,
What a dreadful day you had yesterday, I know this will sound a strange thing to say, but at last Steve will get the attention and treatment that he needs and hopefully they will get him out of pain, please keep me updated as and when you can with the situation, I too felt a sense of relief when Terry was admitted , although at that point we didn’t know it was Myeloma, never even heard of the dam thing. The next day the consultant said he was 90% sure that it was myeloma from the xrays and ct scan ( No mri as he cant lie down ) then it was all systems go.
Our hospital bed wont be delivered until Monday at that has yet to be confirmed, so Terry is still stuck in Hospital and today is his birthday, our friend made a cake and it was all very jolly, not how we would have planned it, but what the heck it will be one to remember what with the weather and the venue.
Take good care of yourself Julia, and keep positive things will start to happen now that the experts are involved.
Will be thinking of you both and sending positive vibes up to Yorkshire, gentle hugs and squeezes.
love Ann x
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
Hello Julia,
Hope you have had a better day today, and Steve has returned to a normal ward and is feeling better it is good that he has started his chemo, if things had gone to the original plan he would still be waiting for his first consultation, so at last treatment has started for him.
It looks like you are in for a lengthly hospital stay, ours will be 5 weeks on Sunday !!!, Terry and his consultant had a chat yesterday and seeing as he will still be in hospital on Monday have decided to start round 2 of the chemo again, he has had 4 days on high dose steroids and still continues with the thalidomide, but remains well and fairly side effect free, they are happy with the bloods and his kidney function has greatly improved. I really hope that Steve also has the good luck with his treatment re the side effects.
How are you ? If I have one hospital visiting tip to pass on it is this;
If your hospital has a canteen that is open to all ie staff and visitors and the food is good, try and get your main meal there as often as you can, it saves cooking and you have to look after yourself so you can look after Steve and its one less thing to have to think about. Take good care of yourself and love and best wishes to you both, gentle squeezes
love Ann x Ps would love to be able to fetch your white elephant we would give him a very good home and be very kind to him.
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
dear Julia,
Here’s hoping that when you receive this email Steve has continued to improve. The stress and worry you must be under will be great, but he is in good hands if the care and attention and gutsy determination to get Steve well again shown by the professionals is as good as the care we have been shown here in Wales he will soon be on the mend.
How strange it is to continue with every day tasks, dog walking is a good stress buster what sort of breed is Daisy ( we have a sheep Daisy, she is a spec saver special ) our neighbour said don’t let Daisy near a mirror , because the poor thing wont know what she is. !!!!!!!!!!!!!!
Take care of the “elephant ” still no news on ours !
In our thoughts and positive vibes, love and gentle hugs
Ann 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 Julia,
So very pleased that Steve is stable, and making steady progress, at least the treatment of steroids and Thalidomide will be starting to kill the myeloma ( have the hospital given you the fact sheets for these 2 drugs, if not download them from the Myeloma uk web pages, it is interesting how they work ). Yes I go to the hospital every day it is very exhausting it is a 40 mile round trip but takes 45 minutes each way, our tiny twisting welsh roads, there is only the two of us, the rest of Terry’s family are all in Derbyshire, and mine are all gone apart from my brother who lives in Derbyshire, friends are great with phone calls and a couple of our local friends have visited terry on a couple of evenings to help pass the time for him.
Daisy sounds delightful , I love your description of her sounds a bit like me on a good day, I to look forward to your posts, I feel that it is only other going through this journey that truly understand, others try to imagine but you have no idea until it happens to you and yours.
Our elephant is on its way, so is Christmas, fingers crossed it will be this week, take good care of your elephant as hopefully it will be put to good use soon.
take care and gentle hugs to you both
love Ann xx
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 Julia,
Hope Steve managed to get his move, and is making steady progress. we are all geared up for the bed and mattress delivery tomorrow , if this happens Terry will come home in the late afternoon, I am so excited that at last after nearly 6 weeks in hospital he will be home and maybe we will start to return to a new normal, which next week will be 2 visits by ambulance for chemo on Tuesday and Friday and the same the week after plus visits from the district nurse, so every thing crossed, have a good sleep take a leaf out of Daisy’s book.
Gentle hugs and love to all of you
Ann x
Hello Ann
I do hope your bed arrived, and Terry has managed to get home to you.
They have released Steve from critical care this afternoon, back onto the haematology ward, where he was originally admitted to, He is certainly better than he was, but he was a bit tearful today, I think the enormity of it all has well and truly sunk
in now. I know he is worried about his mobility, he still hasn’t been able to get out of bed, but it is early days, and he has had a big setback. I have told him that this is a marathon, not a sprint!
I am not going to the hospital tomorrow, his mum, brother and sister are going, also an ex colleague, so plenty of visitors. I will have to try to catch up with some housework, if I can find the motivation !
Best Wishes to you both. X
Hello Julia,
Bed are all the equipment arrived yesterday, and Terry came home around tea time, after nearly 6 weeks he is finding it all very strange and comments often on how quiet it all is, how all the hedges have grown and various jobs that need doing, and has been tearful also saying that he will never be fit enough again to look after the place, we must have telepathic powers as I said exactly the same thing its a marathon not a sprint, its not easy though is it.
While Terry was in hospital we also had weepy moments it is a hell of a thing to take in, and the thalidomide can have an effect on mood as well.
I hope that Steve is progressing and when you thing in the scheme of things although he has had one hell of a set back, if things had “gone to plan ” you would still be waiting for your 1st consultants appointment on the 6th and waiting for treatment to start, while now he has started the fight back.
Our sheep dogs all reacted very differently to Terrys return;
Brodie aged 12 and very shy, creeped sheep dog style on his belly and then put his paw up, all very touching.
Bryn also aged 12, carried on as normal in mental mode has someone been away !!!!!!
Meg aged 7 the one with the brains whirled around then lay flay belly up all squilly wiggly,
and Paddy aged 5 (only 3 legs ) cried in delight never took his big brown eyes off Terry and has tried to stick like glue to him, all very tearful all round, I bet Daisy will be the same on Steve’s return.
Take care, love and best wishes & those gentle hugs to you all.
Ann x
Hello Ann
So glad that Terry has finally got home.
Aww your dogs……I adore dogs. Prior to getting Daisy We had 2 springer spaniels, Lucy lived till she was 15, and Meg was from rescue, she was 10 when we lost her. Daisy is 8 now, which is old for her breed. Most nights about 10, she sits at my feet, looks at me and just cries, it breaks your heart. I will have to restrain her when Steve comes home, as she is really big and powerful, and doesn’t know her own strength, no gentle hugs there!!!
I haven’t been to hospital today, but haven’t been that productive at home either! A friend popped in for coffee, I took Daisy for a little walk, and did a bit of ironing. A friend asked me to go for tea, so that was nice, and a bit of normality.
We both normally work, but are both off sick currently.
Steve has text me a couple of times today, the Physio ladies made him stand up today, he couldn’t manage it unaided, and was wobbly, but he hasn’t stood unaided for weeks and weeks, so like you say, little steps. He still has no appetite, but he needs to eat more to get some strength back, again, ………early days.
Have they taken Terry’s back brace off?
Well, late again, onwards and upwards….cuddles to you both and your doggies.
Julia X
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