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Hello Julia,
Very glad to hear that Steve is making steady progress, and that he has other visitors it will take the strain of off you. A nice nearly normal day sounds good, we have had a near normal day today a friend came round to help me with a bonfire and stayed for lunch and chatted “garden ” idea’s with Terry, I am just the “gofor ” so that was near normal.
It seams like Lewis is coping in his own way and as time go’s on it should get easier for all of us.
My shift went well, only phoned Terry once, and again that was near normal and it was good to get out and see other people who knew nothing of our situation and didn’t pussyfoot around or give those “sad glances ” do you get those ?
Only go back to work when you are ready, I am very lucky with the support that I have been getting, to be able to start back/stop when I want absolutely no pressure.
Fingers crossed for Steve’s MRI scan,
Sleep tight, gentle hugs to all,
love Ann x
Hello Ann
The result of Steves MRI was encouraging. The dr said that there were no new fractures, and the plasmacytoma had reduced, therefore, relieving the pressure on his spinal cord, which has improved his mobility marginally, but it is still very compromised at the moment. Also his kidney results are going in the right direction too, They are just deciding whether or not to inject some of that ‘plastic cement’ into his spine. So, he remains in hospital for now, they have asked about what we have in place at home, and have said that he will need intensive rehab and Physio. I am really anxious at the prospect of him coming home if I’m honest. Are you managing ok Ann?
Has anyone mentioned stem cell transplant to Terry? It hasn’t been mentioned to us, but when you look at the forum, many people have had this haven’t they?
Oh yes, ‘the glances”!…..since Steve was diagnosed, and the local jungle drums got going, and the news was out there, I have not ventured into the town or the local supermarket….instead I’ve called at Sainsburys en route to the hospital where no one knows me. But I have a hair appointment on Friday for my hair colouring, and it is desperate for doing, so I will have to bite the bullet, and go to the hairdressers…..hope the place doesn’t fall silent when I walk in!
My workplace are also very supportive, which is great, as that is one less thing to worry about. As Steve is at the moment, I cannot see me being fit, or indeed able, to return to work for some considerable time, we will see.
So, bedtime again. Little hugs, night night.
Julia xx
Hello Julia,
Well chemo Tuesday again, hope Steve’s went well, again ours was a very long day, due to transport and waiting for the chemo to be delivered to the unit. So happy to hear that the MRI was encouraging we need all the little or big lifts we can get. It is a worry when at last they come home, we have now got into some sort of routine, breakfast wash dress meds etc, but it takes time, as much as we want them home, the anxious responsibility weighs heavy at first, but we can only try and do our best we are human after all, and it is lovely to have Terry home, little things we are take for granted like watching TV together, much better then being on your own.
No one has mention stem cells at all, in fact we have had little at all information about the state of Terry’s myeloma, which to be honest suits us fine, we no nothing about light chains or other indicators proteins ? or such everything happen in such a rush at the start, and when I ask how things are going, they say in the right direction which I know this makes me a wimp for not asking more, but it suits me just fine.
Good luck with the hair dressers, if the glances start, go for a radical hair colour, then the glances will be different at least. ( here I go presuming that you don’t already have pink or green hair ) hey it brightens the day.
Nighty night, gentle hugs to all
Love Ann xx
Hi Ann
Been to hospital today, have taken your advice, and started to get a meal whilst I am there, the food is quite good, and really inexpensive. I had vegetable lasagne today, it was £2.40! So will just have a slice of toast later, and that will do me.
Steve was ok, just very tired, he’s not sleeping well. He can sit down in reasonable comfort now, which he could not do at home. They have removed his catheter today, and he can walk with his frame to the bathroom, which is a huge improvement. Like you say Ann, little lifts keep us going. I’m sure we too will get into a routine when he comes home. As you say, simply watching tv together, will never be taken for granted again. Is Terry tolerating his chemo ok? I know it is early days, but Steve is coping not too badly, he tends to feel nauseous early evening, but it does pass.
I am like you with regards to information Ann. I did initially load up on information via the Internet, but I too am happy to just know that things are heading in the right direction, I do not need to know the science bit!
They moved him to another bay on the ward today, the other 3 patients in the bay also have myeloma, but they are all in their 70’s and 80’s, nice chatty guys though, so it passes the time for him.
Well, ironing beckons tomorrow …..Can’t wait ! ☹️.
Right, off to comb my purple hair ………….!! Only kidding!
loves and hugs to you both.
Julia
x
Hello Julia,
Well we are back on air again, lost email for a couple of days, BT have been promising us a new phone line for about 4 years but their are only 4 of us and about 2miles of underground cable to be replaced ,so we are not even low priority we think we are no priority not a hope in hell any time soon.
Great news about Steve he must feel loads better to have the catheter removed one more step towards the new normal. So far so good with the chemo Terry has pins and needles in his hands and gets breathless today was his last chemo of cycle 2, so 2weeks break. we have had good news from the ambulance service they will fund the trip to Stanmore and the red cross are taking us. Glad that Steve has other guys to chat to, are they all newly diagnosed as well.
Dinners in hospital have certainly improved and are excellent value and it saves on the washing up. Like the sound of that purple hair, might give it a go get rid of this mousy(who am I kidding ) grey like barbwire mop.
Sleep tight gentle hugs all round
Love Ann xx
Hello Ann
Glad your internet is up and running again, would not like to lose contact with you. 😕
Yes Steve is glad to get the catheter out. He is managing to walk to the hospital bathroom with his frame, and even managing the shower himself. Shame he won’t be able to manage to do this at home. There was a council bungalow advertised this week, about 4 miles from where we live now. I mentioned it to Steve, but understandably he says he just can’t get his head round it, and doesn’t want to rush such a big decision, especially as his mobility may hopefully continue to improve.
I am so pleased that you have secured the funding for your journey to Stanmore, that is great. Hopefully it will be a worthwhile and positive consultation for Terry, I do hope so. Can you go in the ambulance with him Ann?
The chap in the bed next to Steve is newly diagnosed, he is a very young looking 80 year old. Himself and his wife were due to go on holiday, flying to Dubai, then picking up a cruise ship, sailing back to Southampton, stopping off at exotic places en route, then sadly he was diagnosed with Myeloma, so they had to cancel everything.
The chap across is being treated for cellulitis, but he says he has had myeloma a few years.
My hair appointment went ok, and I look vaguely human again. I then braved the local supermarket too, which wasn’t as bad as I thought . Now I’ve done it, I won’t feel as conspicuous next time….maybe?
It’s been a lovely sunny day here today, let’s hope it continues.
love and best wishes to you.
Julia
x
Hello Julia,
We have had a very hot day , it has been very “heavy ” and Terry has found it hard going today, his brace is so awkward and heavy so has spend most of the afternoon in bed were it is much cooler.
the red cross contacted us today about next Mondays trip to Stanmore they are picking us both up at 6.00 am, so it will be a very long day, but we are hopeful that it will be worth it and they can help his spine and sternum.
I think Steve is right to wait re the bungalow, it is a massive decision and when he starts to get more of his mobility back you can make the best choice then, I think back to May the 21st only a couple of months ago how Terry struggled with the pain to get about and now although he is in a worse state with fractures and his sternum and his brace he gets about albeit slow but the pain is not as intense and hopefully he is on the mend now that he is being treated. Is Steve still on his chemo we are on a two week break and its lovely.
So pleased your hair appointment went well that another hurdle over, our lives seems to have become one challenge after another some huge and some little, and sometimes the little ones seems to take more courage, strange that.
Any more news on Steve’s maybe or maybe not operation ?
Hope Daisy has not struggled to much with the heat, we have been forecast thunder storms tonight, hope the power stays on, and the internet. !!!!!
night night,
gentle hugs all round
love Ann xx
Hi Ann
Did you get the forecast storms? It was a very dull humid day here also, we did get some rain, but no storm. Today is fresher (Friday). Well, “……. News!……. Steve is home! They told him on Wednesday, that he could come home Thursday. So he arrived home via ambulance at 6 last night, to our living room stroke hospital ward stroke bathroom……multi purpose gone mad 😳!
Nice to have him home, but a little daunting also, especially getting to grips with the sack full of drugs! Anyway, he was ok last night, albeit the bed isn’t as comfy as the air bed that he has been on in hospital. He is doing really well with his mobility, but still does have some pain. He managed to walk out into the back garden just with a stick today, which was great to see, little things eh Ann? He does keep getting quite emotional, I think it is a combination of being home, and the enormity of it all, and how gravely ill he was when he was in critical care. But, onwards and upwards, hopefully. He is back in on Monday for his chemo.
Ann, has Terry had any days off from taking thalidomide? It’s just that they only sent him home with one tablet for the Thursday night, and when I rang and queried it they said that he was to have a break for 3 days, and that the dr would review it on Monday. Just thought it seemed a bit strange, I thought that he would be on that constantly for the duration of his treatment? Anyway, we’ll find out when we go on Monday.
The Macmillan occupational therapist has been out today, they are going to put a second handrail up our main staircase, and a grab rail in the bathroom for when he can hopefully get upstairs to have a shower.
The Macmillan Physio is coming out next week, but then she is on holiday for 3 weeks, so I guess nobody else will come. He will just have to keep doing his little walks in the house to build his strength up.
They are going to do a vertoplasty on a fracture at the bottom of Steves spine, and will send for him shortly. They insert rods and cement in to strengthen the bone. They cannot do it to the area at the top of his spine though, I guess it’s not safe or something, didn’t ask!
Well, I do hope all goes well for you on Monday. What a long exhausting day it will be for you both, hopefully worth it though.
I’ll be thinking of you.
love and hugs
Julia
x
Hello Julia,
Well what fantastic news, Steve is home you and Daisy must be thrilled, the sack load of medication is daunting at first but again it is amazing how used you soon get to this being the “new norm “. Terry has been on Thalidomide all the time, its strange how consultants have different ideas, but as all the “old hands at this game ” say every one is different. Terry was emotional when he came home, I think part of it is that while in hospital they are “safe ” and home is the unknown what ifs !!!!, but like us its a whole new journey that none of us had planned so we all feel a bit at odds as we go along with our little steps,
Monday is fast approaching and we are a little nervous but it is a wonderful chance and we must make the most of it, it will be a very long day and then Tuesday we are back in Carmarthen for a “review ” after the 2 rounds of chemo . On the outside I am trying to be positive, but inside I must admit that I am a total mess, again it is those dam “what ifs “, but still it has to faced and I expect that sometime soon these reviews may become the new norm.
Yesterday ( Friday ) Rain rain and more Rain it never stopped but we didn’t get a storm, today is a bit overcast but dry.
Lovely to hear from you, enjoy your weekend together,
love and gentle hugs
Ann x
Hello Ann
How did Monday go? I was thinking about you both. I hope it was a positive visit for you, and also your review on Tuesday. It is an anxious time isn’t it ☹️.
We are doing ok just now. Steve had his chemo on the day ward on Monday. That was a long day. The ambulance picked him up at 12.15 (45 mins late), and I went through in the car. Whilst the chat with the dr and the actual injections were quick, we then had to wait for all his drugs from the pharmacy. I left at 4 pm, to avoid the rush hour, although it still took an hour and a quarter to travel 14 miles! Steve didn’t land home until 6 pm.
He is back on the thalidomide now, and has to have an injection in his stomach every day (blood thinner), a nurse came Tuesday and today, but I have said that I don’t mind doing it, so I did it today while they watched, and they are coming on Friday to watch me, then they will leave me to it.
He is doing quite well, eating well, steroid time! His mobility is improving too. He does get very tired though.
So, chemo day again tomorrow. I don’t plan to go with him tomorrow, have one or two errands to run, so will catch up on them whilst he is in safe hands, still get anxious if I pop out when he is home, but at least now he can get out of bed and get to the commode without assistance, which he couldn’t, do 6 weeks ago!
Ann, has anyone told you that Terry can apply for PIP (Personal Independent Payment), formerly disability living allowance. Whilst his mobility is compromised, and he needs assistance with daily tasks, and is under the age of 64, he may well qualify. It is not means tested, and every little helps! If you look on line, there is a number to ring initially, to start the process off, we’ve done it, Never claimed anything in our lives, but have certainly paid all our dues into the system over the years, so why not! Just waiting for some forms to be sent out now.
Well, late again, bedtime!
love and hugs
Julia X
Hi Julia,
What a hectic few days we have had,
Monday the ambulance collected us at 6.00am and we arrived at Stanmore at 11.40 in good time for our noon appointment, the journey was good and Terry dozed most of the way, he had the bed in the ambulance. We were lucky to see Mr Molloy who was lovely, Terry had xrays and examinations and we had good news and not so good news, so first the good news;
The xray showed that Terry has made new bone at the fracture site so it is starting to heal itself, so no need for intervention.
The not so great news; They cant do anything to help his sternum fracture, it will always be collapsed in and so his posture will always be stooped and his head and neck thrown forward, he said Terry will never be able to carry out heavy manual work again and at the minute his spine is in a grey area, neither stable or unstable !!!!.
How ever he can make him a new and better brace and we will go back in 6 weeks for it to be cast, and this should help. Terry was gutted with this news and understandably very upset, his whole life has been very active and manual and involve the love and care of animals both great and small, so the journey back was long and we arrived home just before 9.00pm.
Tuesday we had to go to the clinic for our 1st review and honestly Julia, after Monday I was dreading it, but it went very well and at last some excellent news, Terry is responding to the treatment, blood test for line chains excellent, new bone deposits on his spine encouraging, so round 3 of chemo starts on Tuesday the 1st of August. This news lifted our spirits and we came out very happy and Terry admitted it helped to take away the shock and disappointment of Monday, we know it is still very early days on this roller coaster that non of us want to be on, but you have to savour the good times and those little steps.
Yesterday I was at the dentist for a check up so that’s all well for another 9 months, and today has been spent catching up on jobs. Thanks for the info about the PIP have rung today for the forms, like you we have never claimed a bean. Terry is on the jabs to the tummy and carriers out this task for himself ( we had to ask the chemist for a “sharps box ) they are free if they have not provided you with one. So glad to hear that Steve’s mobility continues to improve, little steps back to independence and the new norm ? Yesterday I bought one of those pill box things that have days and am /pm on them for the sack full of meds I think it will help, the jury is still out on this one.
Nearly time for tea, so love and gentle hugs to all
love Ann xxx
Hello Ann
Wow, you have indeed had a hectic time. What a long day you had on Monday. Indeed disappointing about Terry’s sternum issue, but very good to hear that his other fractures are healing, that is great. So is the back brace to support his delicate back or for his sternum? And will he always have to wear it? If the new brace is more comfortable, then that will be much better for him I hope.
Responding to treatment is soooo what we want to hear….! Yay!
Steve had chemo again yesterday, and I caught up with some errands, and managed to have lunch with a friend which was nice. He was home about 4.30pm, so not too bad. He seems to be tolerating the chemo ok just now, is Terry managing ok on it?
I meant to ask you if they have increased Terry’s thalidomide dosage from when he first started taken it. They increased Steves this week at the start of cycle 2.
I too have got one of those pill organisers, they do help with the ever increasing drug mountain!
Well, listen to this for bureaucracy gone mad! Today ‘the perfect’ bungalow was advertised by our local council, in our preferred area. So, if you remember we were given band A priority 1 on medical grounds……so, you have to express an interest on line, but it did not state whether pets were allowed, so I thought I better just ring and check that first…..can’t leave Daisy dog!
Yes, they said, pets are allowed, but we were not eligible to apply for the property! WHAT!….but I have the highest priority band, why not? Because your husband is not 60 yet, and this is a category “must be 60 or over” and not, “must be 60 or over, or have medical need” property. So I explained our unfortunate situation to the jobsworth on the phone, explaining that Steve would be 60 in January 2018, but to absolutely no avail……I give up! You do try to not think “why us”, but just because I’m paranoid doesn’t mean they’re not out to get me!
And on that note my dear, I will bid you good night!
love and hugs
Julia
x
Hello Julia,
Bureaucracy gone mad, I think the lunatics are running the asylum. email the jobsworth and saying you are a victim of “ageism ” absolutely crazy I am climbing the walls for you, and sometimes it really does feel like the world is out to get you and indeed “why us “.
Rant over,
the little pill pot is great we are now both agreed !!! Terry’s thalidomide has always stayed the same at 50mg and he takes 2 at night.
Chemo starts again Tuesday cycle 3 and so far so good re side effects also on Tuesday he is down for his 2nd bone strengthening drug (forgot what is called at the minute, brain has gone to mush, or it has gone on holiday ). we expect Tuesday to be a long day as we will have to wait for new meds etc, we are trying to embrace (how about that for a feel good word ) our waiting time by reading and doing puzzles !!!!!!!!!!!!! who are we hoping to kid.
we don’t know as yet how long Terry will have to wear the brace another one of life’s little surprises but if it helps what a wonderful thing to have made for you.
Hope you have had a good weekend, don’t let the burocrats ground you down, as always love and gentle hugs to you all
love Ann xx
Hiya Ann
Bit more info on “bungalow gate”….their housing stock for older residents is categorised into two sections, ‘over 60’ and ‘over 60 and/or with medical need’, so, as our priority is on medical need alone, we cannot apply for the housing labelled just as ‘over 60’, even when he is 60, because our priority level based on age alone is way down the list………speechless!
Anyway, hope your weekend has been ok, it’s been showery here.
Yes Steve is on the same dose of thalidomide that Terry is on now, but he was initially only taking 1 50mg tablet, it has now been upped to 2. Does Terry still get back pain Ann? Steve does, granted it is nowhere near as severe than it was prior to his hospital admission, but it does still give him some considerable discomfort at times, he does have meds for it.
Chemo again tomorrow , considering we are doing very little, the weeks are flying by. Still waiting for a date for his vertoplasty. I think the bone strengthening stuff is bisophosphate? Steve will be due a second one soon I’m sure?
Oh, and a bit more news, Lewis has found a little one bed roomed flat to rent, so will be moving out during August! He did intend to find somewhere by the end of the year, but this one became available, and it is an ideal little place for one person, only 10 minutes walk from us too. I am pleased for him, it will give him something to focus on, he has found it very difficult to spend time at home, and has been virtually living with his girlfriends parents.
Ann, I am happy to continue to chat via this forum, but if you would prefer to email me, that is fine, my address is juliashaw@talktalk.net.
Bed time again, have to be up earlier tomorrow, I have a dr’s appointment, and then I have to get back to help Steve get ready for the ambulance picking him up.
Big love and little squeezes 😍
Julia
x
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