[bandityogaParticipant]

Bloods were checked yesterday and lambda light chains have now risen to 267 but not concerned as all other bloods, kidneys etc are fine.

Ian walked 2 steps with zimmer on Friday so we are hopefull he will get more mobile. Meeting with consultant on 19th to discuss discharge date. Meeting with social services on 13th to discuss changes to house, carers etc. Can't wait to get him home as I spend most of my life running to hospital and spending hours there. I am also giving up work as I am now 60 but will not get my pension until 64 and three quarters.

My daughter is treating me to a short break in Nice at the end of August which is a present for my 60th. Looking forward to it.

I will try and attend the myeloma support group in Perth on 14th as I think it will be interesting.

Maureen

[eveParticipant]

In my thoughts Mareen,
Love Eve

[EttaParticipant]

Well done Ian you will get there I did took me a while to even touch the Zimmer frame I was so frightened.
I am now able to walk unaided but very slow,get the physios to come to the house and you will come on leaps and bounds.
Hope you get home soon and I hope Maureen enjoys her break god speed .etta

[bandityogaParticipant]

You too Eve. Hope you are both well.

Maureen x

[bandityogaParticipant]

Hi Etta

How was your mobility affected by the myeloma? Ian is not getting SCT because he is not mobile. Her will get physio at home 3 days per week so hopefully it won't be long until he is walking.

Ian doesn't post but perhaps he will when he gets home.

Thanks for your kind words.

Maureen

[DaiCroParticipant]

Hi Maureen & Ian,

I know we joked about Ian racing around the bed and getting into bed at different sides ect, but now we are into the real world and two steps, however aided, is real and tangible progress… real enough to start allowing Ian the chance to come home.8-)

It will come and soon enough… soon enough for you to get a lot organised and set up to allow Ian the best chance of serious progress once he gets home.:-)

I am delighted for the both of you… well done and the best of good fortune in all your home-bound endeavours.:-D

Dai.

[MariParticipant]

Dear Maureen,

It's a long hard journey, but the nerve supplies do improve and things we would consider miracles do happen.

I think this is a little way down the line for you, but Steve found hydrotherapy a wonderful help and we were grateful that his physios were able to arrange time in a pool for him. The water is so supportive and really helps to strengthen muscles.

I am thinking of you and hoping for a good recovery for Ian. Have a lovely time in Nice and Happy Birthday,

Much love,

Mari xx

[bandityogaParticipant]

Dai

I keep telling Ian I need him home to do the gardening and ironing lol. Seriously it will be so good to have time in the house together and I'm not rushing about looking at the clock all the time before visiting hospital.

Hope you are progressing well.

Maureen

[bandityogaParticipant]

Thanks Mari

Did Steve have a compressed spine and how long did it take him to walk after his operation. I do think miracles can happen and feel positive about Ian's mobility.

Sorry Steve is going through a bad time but do not give up hope.

Love

Maureen x

[MariParticipant]

Hi Maureen,

Yes, Steve had a plasmacytoma at vertebrae T8,9 and 10. He had a laminectomy where the top part of the vertebrae were removed along with the tumour. The tumour had been pressing on his spine and he lost the use of his legs. Learning to walk again was a long gradual process. He was lucky, he managed to walk a few steps, with help, only three days after his operation. They did catch him very quickly after the compression, he had the operation within 48 hours. However he seemed to go backwards and he was not walking as well a week or so later. He had no feeling in his legs and from about his diaphragm downwards. This gradually returned although i think he still had some numbness in his calves and feet. At first he could only walk a few steps and it was very slow. I suppose it took about 12 to 18 months before he could walk anywhere near normally. He found hills, either up or down challenging and he would tire easily. He improved over the months, and he was able to walk long distances.
I do hope that Ian is able to get back to walking to regain some normality,
Love Mari x

[bandityogaParticipant]

Mari

Ian's had compression of the spine at C6/7 and T1/2. He had an operation to remove the tumour and 2 pins were put in his back to support his spine. I don't know why he wasn't given plasmacytoma. One of the pins had to be taken out as the wound wasn't healing fast enough for him to restart chemo. He has had a bad bed sore which has delayed physio but he is making good progress now and should be out of hospital soon and physio have said he should walk again.

I hope Steve is doing better and they find a cure for this awful disease.

Love Maureen x

[mhnevillParticipant]

Dear Maureen

So glad that Ian is expected to come out of hospital soon. I remember so well doing my first few steps after having the similar operation to Ian. It felt like climbing a mountain and I had to have a special "pulpit" Zimmer to give me additional support as I had already had four hip operation! At that stage my plasmacytoma had't led to the diagnosis of MM. That came later after biopsy and blood tests.

I have always found I made more progress with the physics who came to the house. After that initial operation I was back walking on elbow crutches within a couple of months. Not great distances, but enough to begin to feel moe independent and to dispense with Carers.

I had a second episode of losing my mobility. Although I could do a minimal amount fairly quickly, it was only the impetus of my daughter moving tomLuxembourg that got me to request my latest physiotherapy at home. It has been like a miracle. I still use the elbow crutches out of the house, sticks inside, but can't believe how much more I can manage. DOING the exercises is the key. I have now been to Luxembourg twice, flying with my electric scooter. There is life at the end of all the treatment. You just have to hang in there.

I'm certain Ian will come on in leaps and bounds once he is home.

Love to you both.

Mavis x

[VickiParticipant]

Maureen,

What wonderful news for you both and what a hell of an uphill battle it has been for you. I have nothing but admiration for you both :-). Mavis is so right, doing the exercises can only improve your lot so as tough as it is, set a little regime. You won't know yourself with Ian home and no rushing to the hospital, that will be so great for you too 🙂

Best of luck and long may the progress continue x

Vicki and Colin x

[bandityogaParticipant]

Hi Mavis

Ian thinks he should stay in hospital until hethe doctor thinks he will not get any better but we have a meeting on Monday 19 August for a discharge date and I hope they talk him round. I think he has been in hospital too long and is a bit frightened he might not get enough support.

I am exhausted travelling to hospital every day and will hae to cut back if he decides to stay in. He has been told he will get physio at home three times a week and we have a hydrapool near us. He has to transfer into a car next to get home but I don't see that as a problem as he can walk a little with the zimmer and get up on a turner.

I'll let you know what happens after Monday.

Maureen x

[bandityogaParticipant]

Thanks Vicki & Colin

it has been along time and I can't wait to have Ian home. He will get physio 3 times a week and I am going to ask if he can use the gym as an ouptpatient in FVRH. We also have a hydrapool near us so I hope he will be able to use it in the near future.

Hope you ar bot well.

Maureen x

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