[bandityogaParticipant]

Ian's latest blood results show that his lamda light chains have risen from 135 to 210 so if they continue to rise he will be back on CDT. Bed sore has not healed yet so what next? He had to stop the CDT to let the bed sore heal so it was always a possibility that the myeloma would return but also hoped that Ian has gone through enough and something would go his way. Thank goodness for this site as I know more about the condition and the questions to ask. I am getting a print off of Ian's blood results each month. All other bloods are fine as is kidneys etc.

I am trying to get him transferred to Glasgow to get more intesive physio and get him home as soon as possible.

Maureen

[eveParticipant]

Hi Maureen

Still cannot get over Ian being in hospital for 8 months,you are going to have to ask to see consultant,see why he is not progressing in his movements,I do know of someone who had a hip operation after SCT and it never healed over.:-( If its only one bed sore,how come it has not healed plus there are no other bed sores, it might help if you get on the phone to Ellen.

You must be tired out,not just with the worry,but also with the way things are progressing,I want be daft and tell you,you must rest,because it does not exist at this point and time for you.
Ask the sister to make an appointment with the consultant who is looking after Ian,and find out why no progress…….:-S

Lightchains on the rise,you would think we are on a bit of a roller coaster anyway,without them telling you one minute will not need treatment for a few years then,next minute,here you go again.
They might decide on different treatment if its Velcade it is easier on the body.
Good luck Maureen,you will find after a period of time,you take in the news,and it does not knock you for six,its just another problem to add to the equation ,it just makes you angry that they do not include you on the list of need to know people. Love Eve

[bandityogaParticipant]

Hi Eve

Ian is being turned in bed every 2 hours so there will be no more bed sores. He is making progress with mobility but we do not know if he will walk as the tumour compressed his spine and when he started taking steroids which attacked the tumour, his spine started collapsing. Had operation, pin put in to support spine. Been in rehab since March. Spoke to consultant today, he is going to look at bed sore tomorrow and see anything can be done to make it heal quicker but it is a slow process. Also asked about transferring to Glasgow but he doesn't think Ian will suitable . I have phoned Glasgow and I am waiting on a reply.

Ian is now learning to transfer from bed to wheelchair .When he can master this and get into the car, I am taking him home. Can't come too soon.

Love Maureen

[DaiCroParticipant]

Hi Maureen,

Instead of the nurses turning Ian in bed every 2 hours why doesn't he just get out of bed… transfer himself into his wheelchair… a lap of the bed and back and into bed via a transfer on to a chair on the opposite side, back on to the wheelchair and into bed… job done, two birds, one stone etc. 😎

Like Eve I am amazed at how long the medics are taking… have they quota's to fill? The reluctance to contact Glasgow and putting off the simple procedure of examining his bed sore makes me a tad suspicious. 😉

On a serious note I would talk to the consultant when he examines Ian's bedsore and inform him that you intend to take Ian home as soon as you are satisfied that Ian can make himself mobile by way of transfer from bed and chair to wheelchair. 😎

I appreciate that it is only speculation but I believe, as I am sure you do too, that Ian will improve in leaps and bounds by being home, surrounded by family love and familiar things… everything else can be covered in the 'Day Case Unit'. 🙂

I wish you both well in your homeward bound adventures. 😎

Dai.

[eveParticipant]

Hi Maureen and Dai

The problem is we're the paralysis starts,plus he has to build up top muscle ,as you know Dai with Myeloma muscle becomes none existence,plus you have to look at the practical side,of number 1 and 2. Maureen does not mention this.

Once Ian goes home,you have added complications ,practical,physical and mental well being,all this should be being dealt with in a good hospital ,so he is able to adapt once he is home,I can understand Maureen's frustration,he is not in a hospital that is addressing his whole needs,

It's time to question the consultant in charge of all these things. Love Eve

[bandityogaParticipant]

Hello Dai

Ian cannot get out of bed unaided yet so it is impossible for him to get out of bed and into the wheelchair. His bed sore is healing but it was quite deep and bed sores do take months to heal. The consultant says Ian can go home anytime but Ian wants to get the physic in the gym and be able to transfer from bed to wheelchair then car. I don't think that is too far away. He is also incontinent but is also starting to feel movement there too. Occupational therapist coming to the house today to see what we need to change.

We have come a long way and not too concerned about light chains rising as he didn't have all cycles of CDT but it will stop bed sore healing if he has treatment. It,s a vicious circle.

On a lighter note, I will soon receive my bus pass. Also looking forward to going down to London in July for my daughter's a civil partnership.

Maureen

[DaiCroParticipant]

Hi Maureen,

My reply was made with my tongue stuck firmly in my cheek… I know the score regarding most of Ian's conditions having been through most of them myself… I had the Occupational Therapy Survey Team come and have a look-see which culminated in several grab bars as well as non-slip door mats and the like. My bed-sores (2 – the first hardly noticeable and the 2nd only difficult because of its placement) had their status raised yesterday at the Day Case in an effort to deal with them before and while I started my 10 day rest period. 😉

I appreciate that Ian's mobility problems are more difficult than mine were… if that makes sense, I had one DVT in the Summer of 2011 & one in the Autumn of 2012… both had me hospitalised and both put my mobility back by a few months each time – the difference between me and Ian is that my mobility problems were reactionary, whereas Ian's are proactive… long-term and starting from scratch. 😛

I hope you enjoy your daughter's civil partnership Wedding in London. My daughter and her partner brought their civil Wedding forward by 18 months last October for my benefit – just in case I kicked my clogs in the interim. It was as real as real as could be and an absolutely beautiful occasion.8-) 🙂

Janet has her Bus Pass… and more importantly her train pass. She can travel the 18 miles from our rural village to Nottingham in 18 minutes for £4:00 (return) whereas it would take a journey of 18 miles from Village to Nottingham in 1 hour 30 minutes (return) with petrol costs of approx: £5:00… with 'the train taking the strain' being the main benefit. 😀

I sincerely hope that things move smoothly, for the both of you throughout the summer and that Ian is home and settled by the end of the autumn. 😎
Regards and best wishes 🙂

Dai.

[bandityogaParticipant]

Dai

Kind of thought you were having a laugh but wasn't sure. Occupational therapist came yesterday. Need to make a few adjustments to the house but nothing drastic. Wet room, remove carpet in bedroom, hospital bed and ramp out the back. Thinks Ian will be able to transfer from bed to wheelchair and car within 4 weeks then he can come home. Ian is concerned about his bed sore if he is at home. Carers will come in 4 times a day.

Lunch arranged for my 60th next Sunday so Ian will get out of hospital for a few hours.

We don't get a reduction in train fares here only bus pass.

Hope you are keepiong well.

Maureen

[eveParticipant]

Hi Maureen

Dai fooled me,should have known, (its the way he tells it ) 😛

Well you are getting organised !!! While all this is going on,do not forget,yourself,I know how hard it can be to take alittle time for yourself ,but you do have to find some time:-)

I hope it all goes well,Enjoy your meal out.Love Eve

[mhnevillParticipant]

Hi Maureen

Glad there seems to be some light at the end of a very long, dark tunnel, for you and Ian. Yes, it will be hard when Ian comes home, but let the Carers take the strain. Hope you have some good ones. I have been very fortunate the two stretches I have needed them.

Look forward to hearing about Ian's homecoming and your daughter's Civil Partnership.

Happy Birthday when it comes.

Mavis x

[CarolsymonsParticipant]

Maureen
How long did I take for the CTD to bring down the lambda light chains? 3 weeks into treatment but mine are stubbornly staying at 435, no change-bit anxious!

Carol

[bandityogaParticipant]

Carol

Ian had 4 cycles of CDT and had to come off it to heal his bed sore but his light chains are now stable at 210.

It doesn't happen overnight, be patient.

Maureen

[bandityogaParticipant]

Hi Mavis

My birthday was 23 June and it went very well. Meal was lovely and Ian was glad to get out of hospital for a few hours.

My daughter's ceremony was in London on Saturday. She was stunning and I shed a few tears both for her and Ian. Champagne went to my head and was up dancing until the wee small hours. I was glad to have a break from the hospital.

Ian should be coming home in 4-6 weeks and I will have to give up work and get everything in place. I'll keep you informed.

Maureen x

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