Hello Julia,
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 trying their very best to help and get it sorted.
Saw the consultant today ( he only looks about 12, I am sure he is not ) and Terry is having another “chemo ” on Friday which will finish the 1st cycle, how quickly this seems to have come around, when at the beginning nothing much seemed to happen, here we are on the 14th June talking about finishing the 1st cycle, and on the 14th May we lived in blissful ignorance until the 22nd May and that bombshell. Told Terry about you “releasing” the shower screen and he laughed and said that is the sort of thing that I would do, well why not we have more important things to think about than the right way to do something, just get on and get it done I like your style.
we really hope that the Macmillan lady can help Steve with some physio and I am sure that once your treatment gets under way that Steve will start to improve when the pain goes away and get his mobility back.
Gentle hugs (we like that saying ,thank you ) to you both
love Ann x ps you keep strong also x
Hello Julia,
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 like yours and at the moment we seem to be doing much the same thing. ( except the mucking out bits ). Yesterday morning had a call from the OT department at the hospital to talk about Terrys mobility needs re Aids etc, so I was measuring steps height , width how many etc. double sockets and positions for the hospital bed, gaps around the loo for a frame, and on it goes . I will be interested to hear how today went with your house assessment. Also interesting about the “gout”, we also spent a small fortune on back supports etc.
Yesterday evening Terry had his first treatment of ” Bisphosphonate” via a drip this will be needed once a month to help built up his bones, and this afternoon had another dose of “chemo” so far so good and his next one is Thursday and that will complete cycle one. How strange one gets used to talking about this treatment , only 24 days ago we lived in ignorance bliss and never in a million years would I have thought we could be having these type of conversations, chemo, mobility aids, etc, but on the plus side at last we know the real reason for all his pain, for all this time and can get the right treatment, No MORE GOUT, Rubbish and pulled muscle codswallop.
Best wishes and hugs to you both too ( not to hard on the hugs though for Terry and Steve, just yet, we need to take care of those bones, until we can give them a really good bear hug when we get our men back fit and well ).
Love Ann x
Hi Julia,
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 to Terrys sternum fracturing a ct scan picked up several fractures of his spine, you are the only other person I have heard of who has mentioned gout, how strange!!!!
Glad Steve is ok in himself, I am sure his mobility will vastly improve once they start the treatment, Terry had a little walk today along the hospital ward, and his mobility and posture was much better in his spinal brace, although it is murder to wear, it seems to be doing the trick.
Lets hope we all have a good week to come.
take care love
Ann x
Hi Julia. you to are burning the midnight oil !!!
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 “commode” and our “high chair” I have had to smile, or else it would have been a cry, what we have become in less than 3weeks, still we need these items so that’s that.
Take care, just of to bed.
love to you both
Ann x
Hello Julia,
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 what it is all about.
Keep strong.
Love Ann x
Hello Julia,
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 he isn’t topping up with Oramof.
This myeloma is a strange beast, Terry cant lie down that is one of the reasons he is still in Hospital because they have the right beds, the consultants have been unable to get a MRI scan yet because of this problem, but are doing a great job with getting on with it anyway. I am sure that once Steve starts his treatment you will both feel better and see rapid improvements.
Terry is 62 and his parents are still going strong also next week the are celebrating their 70th wedding anniversary, we also have amazing friends who ring and offer support it means a great deal at times like this, because it can seem a very lonely place to be. Life is very strange with both of you thinking of retiring next year, this WHAM will give you the push you need to say YES we will do it when Steve is well on the road to recovery because if one thing that this WHAM shows/tells us is life is for living and lets do it and enjoy it and not worry about the what ifs, because Myeloma is hell of a wake up call that nobody sees coming. When Terrys sternum fractured on the 21st May, we had just accepted an offer on our smallholding as we wanted to have a last shot at running a small farm while we were both young enough (I wont say fit enough because terry has not been fit for a long while.) So we have pulled the plug on the sale , and have come to terms with what we have is more than enough work as I am finding now that its down to just me, so when Terry comes home we can really enjoy what we have and like you and Steve take things a bit easier and enjoy life, it might not be the life we had planned, but heck plans change and there is still plenty that we can all enjoy.
Terry had 2nd chemo treatment today , so every one pulling all the stops out and we remain positive.
Love and hugs to you both, and you will find it easier to rest when you get the ball rolling and the treatment starts, please keep in touch.
love Ann x
Hello,
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 ( and it is still early days for us and you,) and get all the info and stuff from your consultant or the myeloma info line who posted us details in order as and when you want them ie “newly diagnosed”. We came to accept that we don’t want it but we have it, so lets give it a run for its money, and see how it likes to be on the receiving end of some powerful drugs and treatments. ( silly I know but it works for us ).
saw terry in hospital this afternoon, and so far so good, no side effects at all from the chemo yesterday, still eating like a horse. roast pork lunch, and cheese and biscuits for pudding.
He will start with the thalidomide tonight and high dose steroids in the morning so fingers crossed.
Try and keep busy and not to much thinking only positive thoughts, as it wont be long before the ball gets rolling and the fight back begins and as our consultant said it is treatable and you can get a good many years that are good years and new treatments and clinical trails are always coming along .
so the best wishes and the very best of GOOD LUCK for next week, only 10 days to go.
kind regards
Ann x
Hello,
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 his head up.
We saw the consultant today who had not seen him in his “Iron man outfit” and he was well impressed with how his posture had improved while in the brace. But more importantly it has made My “Hobbit ” feel very much more normal.
terry had his 1st chemo today and keeps telling the Myeloma cells, its their turn for a good kicking, see how they like it.!!!!!!!!!
Hope this helps, good luck
kind regards
Ann
Hello,
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 lost height and has a stoop and strange body posture (he says he looks like a hobbit ).
Last weekend started 4 days worth of steroids, and his starting his chemo tomorrow on a treatment called VTD or is it VDT.
On Friday he had a spinal brace fitted and WOW what a difference his head if off his chest he can breathe better and feels more normal. They have his pain under control (still in hospital) .
He is now very positive and I am as well, we know the situation but as a complete novice to myeloma, never heard of it before 22nd, I contacted the Myeloma phone line and ONLY read the facts on the Myeloma uk.
Two lovely ladies contacted me by the forum and gave me great strength to “eat and sleep “, once you get over the shock and anger it is a relief (hubbys words ) to know what is wrong with you, get it treated and get on with it.
The myeloma “gang” all seem very positive, very welcoming and very helpful, my advice is ring the help line, they where just what I needed, sent out information and understood.
we are just at the start of this journey, like you, so will wish you all the best wishes, positive thoughts and the advise from the forum ladies was stay strong, it is a tough road that we will travel together.
Hope this may have helped.
kindest regards
Ann x
Thank you for your encouragement, and yes we woman are very strong when we get the “bit between our teeth “.
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 get through it together.
thanks and best wishes again, please could you keep us up to speed on your progress if you don’t mind.
positive thoughts
Ann x
Hello,
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 wishes.
Thank you again
Ann x
