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 Julia,
Hope Steve has had a good “chemo day ” Terry also has his chemo on Tuesday and Fridays.
Today went well, the ambulance arrived at a good time not to early, everything ready in the chemo unit, only had to wait half an hour for transport back, job done. It has been cooler here today,how has it been with you and daisy.
I have been meaning to ask how is your son Lewis coping now, that Steve is in hospital. So very pleased to hear that Steve is progressing with little steps, the amount of drugs Terry takes is amazing I bet Steve is the same. Terry has had the bone strengthing infusion and also the calcium drip, and is about ready for another bone one. I am still hoping to try to do a shift tomorrow evening for a bit of normality but how it will pan out will be anyone guess I have not worked for 7 weeks, so if I get there will I even remember what I am supposed to be doing, brain seems to have gone to mush !.
Try to have a bit of nice normal weekend if you can, easier said then done I know.
gentle hugs all round sleep tight
love Ann x
Hi Julia, How are things with you,it is very stressful for you to have to worry about your home and Steve’s mobility needs, you and me both are over thinking things these days, must be the ups and downs of all our emotions, mine can lurch from one end of the scale to the other within the hour, so many what ifs and as the myeloma website says no two people or myeloma’s are the same.
Yesterday was the start of Terry’s 2nd cycle of chemo, the 1st one as an outpatient what a difference from having chemo on the ward. The ambulance turned up at 9.30 our appointment not until 11.30 so we were one hour early, the day unit were running late so 12.30 before we were seen, then his bloods from the day before were a bit high in inflammation reading !!!
So had to check with his consultant if the could give the chemo, yes they could, then we had to wait for meds then the wait for the ambulance to pick us up at 3.15 home about 4.15, both of us really shattered . The journey didn’t do Terry’s back or sternum any good at all, being bounced around, and he questions how he will cope with a 4 hour plus trip to Stanmore ?. The worry never seems to go away , today he has been very breathless again although he has enjoyed sitting out in the sun, and then an afternoon of Wimbledon.
Lets home that Steve’s mobility improves so that you can stay in the home you love ( it is not selfish) and then you both can decide the whats and ifs of moving, and I totally agree that money issues start to creep up on you. I only work partime a couple of evenings a week but have not been doing for the last couple of months, so I am going to try a 5 hour shift this coming Saturday evening, not sure its the right thing to do, but will give it a try as its only a couple of miles from home, again over thinking made me say yes I will give it a go.
Hope you are keeping positive and not suffering my strange low mood/worrying couple of days I am normally a glass is three quarters full type of girl, so am finding this very odd, but hey Julia we are living in very odd times.
Sleep tight love to Steve and Daisy
gentle hugs
Ann xx
Hello Julia,
Hope you are finding that Steve is a little better each day, and I bet he enjoyed that shower, sadly we only have a bath, so it is still top and tailing for Terry, we need to look into getting a walk in shower or something, our big problem is water pressure so we may need a pump !!!.
Have been on the phone a lot today re transport by ambulance to Stanmore, in the end I was advised to ask for funding from the health board that gave the funding for the consultants appointment in the first place, so that request has gone through and should hear by next Wednesday so fingers crossed again ( At this rate I will end up with a crossed fingers syndrome or some such ). If they don’t give funding have been advised to try St Johns ambulance service and the red cross. Yes what a journey we are on, had our first visit from the district nurse today to take Terry’s blood for the chemo and her office number is listed on our who we need to contact list, we have never been so popular in our rural “No thro lane ” we are at the end so our farming neigbours and other rural dwellers know who is visiting us before we do. Hope you and Daisy get a bit more normality this week, forgot to ask is Steve still on dialysis if so how is that going. Love and gentle hugs all round
love Ann x
Hello Teresa,
Yes the doctors have put the pins and needle down to neuropathy and the bresthlessness down to the thalidomide and/or his fractured sternum. He starts his 2nd cycle of velcade tomorrow and Friday, thanks for the good wishes has your husband had any other bone marrow biopsy since December and do you know when/what the system is for going for SCT, sorry to ask a lot, but my Hubby only diagnosed in May and Julia’s hubby a little later, so we are complete novices on this journey as you may have gleaned from our posts, so any tips/advice would be very welcome.
kind regards Ann
Hello Julia,
Glad to hear that Steve has started physio as you say little steps. I have been a little blind to what Terry can and cant do, I had not realized how much needs help to wash and dress and just how bad the side effects of the thalidomide are for him, the breathless side of things makes him very tired, and the pins and needles in his hands are a worry to him, still I think he has only 2 more days to take them, we will get more info on Tuesday when he starts the 2nd cycle of chemo,
Had some good news on Friday he has an appointment at the NROH at Stanmore in Middlesex on the 24th July to see a consultant about his spinal fractures and if they can do anything for him. Fingers crossed. Terry is still wearing the brace and it is very uncomfortable so we both hope that Stanmore Hospital can help.
Poor Daisy missing her dad, it is bad enough for us and we know what’s going on, 3 of our sheep dogs are from the rescue, Brodie, Meg and Paddy and originally they came over from Ireland, a very kind group of people rescue them from “death row ” in the Irish dog pounds, then a Welsh recue centre bring them over to Wales and England to give them a better chance at finding a home. We are a soft touch, but there’s nothing wrong with that, if more people loved their animals the world would be a much better place.
Glad to hear that you went out for “tea” it makes all the difference that bit of normality.
Take care and gentle hugs and hope Steve continues to make steady progress,
Love to all
Ann xx
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 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 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
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 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 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
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 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
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
