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 …[Read more]

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 ha…[Read more]

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 gam…[Read more]

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…[Read more]

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 mu…[Read more]

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,…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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 t…[Read more]

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…[Read more]

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 h…[Read more]

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…[Read more]

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…[Read more]

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 e…[Read more]

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…[Read more]

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,…[Read more]

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 t…[Read more]

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 Ho…[Read more]