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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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…[Read more]

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…[Read more]

Commode duties certainly count in my book as “mucking out “. It is all very scary at the pace with which things seem to move, but lets hope after Friday things will move at a good rate for you and Steve and the action will really start, that too is scary but in a sort of good way, because you feel that help is at hand every one is…[Read more]

Managed a bit earlier night last night, another very hectic day, had to get help in early evening to trim the goats feet, mornings taken up with feeding watering and mucking out, then off to hospital 40 mile round trip then the evenings with much of the same plus all off the extras that come along.

How our lives have changed just…[Read more]

You have mention  “gout”, Terry supposedly had gout (that what are gp said) in his ribs !!!!!!!!

the  myeloma consultant raised his eyebrows at this news,.Terry also has had pain in back and ribs for a number of years, GP said gout for his rib area and wear and tear for his back.

When our emergency A&E admission on the 21st may due t…[Read more]

Terry is still doing well with no side effects to the 2nd chemo treatment (so far so good ) and the pain remains manageable. Sorry about the “commode ” but as you say needs must, Tonight I have just ordered a “older persons high seat arm chair ” for when Terry comes home.

When I read about your…[Read more]

So very pleased that you have transport sorted out, it is a worry how to get our stiff/unmobile men into vehicles, its just another “thing” that we have to ask for help with.

All the very best to you both and roll on next week, I am very glad that you like to chat as I also find it a great help, that some one else understands just…[Read more]

Sorry for the delay, wild weather here in west wales and we lost the internet ( not that  rare ).

Hope Steve is feeling a little better now that the pain is under control.For the 1st time in months terry described his pain as MILD when nurses asked him today, he has at last got a really effective pain management plan in place and…[Read more]

Born and bred in Derbyshire but moved to  Carmarthenshire Wales 13 years ago and run a smallholding.

Good news on your appointment, please keep in touch, I agree this Myeloma at first makes you feel very  isolated no one has heard of it and you think why me/us with this rare nasty little beasty, But when you comes to terms with it (…[Read more]

The spinal brace  in  Terry’s case is only removed when he is in bed.

it was made for him at the hospital, it is like a turtle shell around his front and back ,from just under the armpit area to his hips.(hard plastic type ) a head rest at the back with 2 steel type rods that fit at the front that then go up to a chin rest that keeps hi…[Read more]

my husband was diagnosed on the 22nd May, after his sternum fractured and he was admitted to A&E, he already had a “unexplained spinal fracture ” that our GP was treating with strong painkillers.

Once the ball got rolling ie ct scan bone marrow biopsy the team have acted very quickly.

Hubby is 62 normally very fit and active, he has…[Read more]

Hope you had a good day yesterday, your 1st email really bucked hubby up, the shoes and socks  made him laugh and he said that will be his target also, little steps that will get us through. It will be a tough journey and we will like you…[Read more]

thank you so much for the post and the encouragement, I have printed your reply and will take into hospital to show him tomorrow  this will really give him a boost.

Thank you so much, for taking the time to care I will sleep a little better tonight.

Hope you have a successful  day tomorrow, and to you also the very best of w…[Read more]

very new to forums and never heard of myeloma until last Monday, what a huge shock.

hubby has been suffering with back and chest pain for a very long time, GP treated him for gout ,

Anyway, he has several fractures of his spine and last Sunday his sternum fractured and that’s when we ended up in A&E and the ball got rolling.

Due to…[Read more]