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
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 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 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 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
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 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 Ann
Steve is doing ok, thank you. Glad your hospital visit ran smoother than your previous one. I haven’t been to the hospital today as his mum and sisters go on a Saturday. I have had a pleasant, (almost normal) day. Had a bit of lunch out with a friend, then went to some other friends for a take away tonight. Somewhat spoilt now, by the fact that it is past midnight and my neighbours dog is howling and barking the house down. They recently lost their other dog, so when they are out it frets…..it’s not the only one! Anyway, late or not, I’ve just text them! Grrrrr.
Lewis seems ok, but spends very little time in the house. He will go and be anywhere than at home, out of sight out of mind strategy I think. He does go to the hospital twice a week, but finds that extremely difficult.
I hope your shift at work went well. Don’t know when I will feel able to go back to work, my current note runs out at end of July.
Steve had another MRI scan on Friday, so we’ll have to see what they say about that.
Well, bed time, night night. Gentle hugs to you both.
Julia
x
Hello Ann
Hope you are both doing OK.
Yep, my emotions are on a roller coaster ride also. Ranging from “we can do this” “onwards and upwards ” to…..total and utter despair and self pity. I think it is probably quite normal in the early stages of diagnosis and treatment. There is a cancer support centre just up the road from the hospital, I keep saying that I will pop in just for a chat, but haven’t plucked up the courage yet, but I will, soon. Unfortunately I am prone to being a glass half empty sort!
Steve is still in hospital, but picking up a little each day. He has chemo on a Tuesday and a Friday. He has had 2 units of blood this week, plus a calcium infusion, and all the other oral drugs. He is chronically constipated, so every 4/5 days they give him an enema 😮.
The main man did the ward round today, and had a chat with Steve, he was realistic, but positive, so I think that helped him. Also, Physio had him on his feet for a little while, albeit with a Zimmer frame. They have implied that he will need intensive rehabilitation with regard to his impaired mobility.
It has been really warm and humid today. I didn’t take Daisy out until 6.30pm, when it had cooled slightly, she hates it when it is hot, she lays on the bathroom floor to try to cool down! And true to form, she is now snoring away!
Night Night for now.
Love Julia x
Hello Theresa
Hope you are both well. Thank you for the further information . Is SCT offered to all myeloma patients? I don’t think it has been mentioned to Steve as yet, but I never get to see the dr’s as there rounds are in the mornings before visiting time, and certainly Steve has not mentioned it. I guess this procedure gives them the best chance of remission ? My husband was only diagnosed on 2nd June, so like Ann says, we are novices, and still trying to get to grips with all that this shock diagnosis brings.
Best wishes
Julia
Hi Ann
We have a shower over our bath at home, but Steve can’t climb into the bath, he couldn’t even manage with the swivel bather that Macmillan brought us, so sponge washes were the order of the day!
We put our name on the council house register 3/4years ago, don’t know why, just a forward planning option I guess. Anyway, I was advised to submit a change of circumstance/medical need statement, which I did do a couple of weeks ago. I received a letter on Saturday, they have changed us to Band A1 priority until 26th September. This means that if a suitable property, such as a ground floor apartment or a bungalow became available, and I applied for it, there is a strong possibility that we would be offered it. Sounds great, on the surface, but…….firstly my chosen area is limited, and they rarely become vacant. Secondly, there is a real possibility that neither of us will be able to return to work, and the rent would be £98 per week. Thirdly, and maybe selfishly, giving up my home, despite it being totally unsuitable for Steves mobility problems, really makes me sad, as I feel like I am not in control, and our life, and all that we knew, is slowly being taken away from us 😪. Sorry, been overthinking today!
Well, Ann, I never thought for one minute that you may have to fund your own ambulance. When they thought Steve may need surgery initially, he would have gone to the Northern General in Sheffield. So there must be a surgeon there……that isn’t as far as Middlesex is it? It’s worth an ask at least.
Steve was taken off dialysis the night before they discharged him from critical care. They have left all the tubing in, but up to now he has not been put back on it. He still has his catheter in though.
I saw him yesterday, and he was generally ok, but extremely tired, and still a bit low in spirits. I am going again tomorrow.
well, a long post tonight eh? cup of tea time now.
love and hugs, speak again tomorrow.
julia & Daisy xx
Hello Teresa
I hope things go well with your husbands SCT. How long has he had Myeloma?
I don’t know much about the treatment, well not in much detail. I never get to see the dr’s as their ward rounds are in the morning, and visiting starts at 2. But breathlessness is a side effect of thalidomide I believe.
Best Wishes to you.
Julia
Hello Ann
It is quite alarming how much assistance they need at home isn’t it, I don’t know how we managed before he was admitted. I must say, I am really scared at the prospect of them sending him home with the limitations he has just now. He was feeling really nauseous yesterday, but he had had some chemo on Friday, so maybe it was from that.
I’ve been today, and although he didn’t feel sick, he was really fatigued. They had wheeled him into the disabled shower this morning, which he enjoyed, as he hasn’t had a shower for 3 weeks, he was absolutely exhausted afterwards though.
Good news about your appointment for Terry in Middlesex. I hope they can do something for him. How will you get him down there Ann? They haven’t mentioned surgery to Steve, not since the first day he was admitted.
Heres hoping that things continue to improve for us all, it is certainly a journey !
Love to you both, and your doggies.
Julia xx
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
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
