[froghallParticipant]

Hi Pat,

Glad that you have now been able to accept the likelihood of a SCT. We are both in the same boat as it were. I too have increased protein leakage with my Light Chain Deposition Disease. The NAC calculated 3.5g. My potential treatment of HDT & SCT is fast approaching, w/c 11Aug. I managed to negotiate a postponement for the whole of July, as its my 50th and we are going away plus I cried through the whole consultation because I was struggling with the whole process. I am now more accepting and function much better by doing practical things.

So I’ve have been stockpiling PJ’s, knickers, new slippers & flip flops, because I’m not prepared to risk infection from the floor in the bathroom when showering. I’ve hinted at how useful an Ipad might be for my hospital stay- possibly a birthday gift? However  preparing my OH & 18yr old teenage son is the hardest. OH can now cook 3 dishes, which will get them through. I’ve requested his mum to help by making wholesome fish pies, and good old fashioned chicken soup. Son has been taught to use the washer, how to separate the load, and dry. Our chickens have been rehomed/fostered as after much discussion we can’t afford any chicken poo been carried in the house- INFECTION.

I too will be on my own, OH works 12hr shifts days/nights. Our dog is going to spend his days either in doggie day care or at mum in laws. Can’t cope with a very lively puppy now never mind after SCT. As for cleaning, well that’s something that’s slipped as I find  it more difficult to bottom the house anymore. So both OH & son help with the hoovering, dusting and cleaning windows.  The drier has taken care of reducing the need to iron, got it tumbling away even on these hot summer days.

However, I have been able to plan a new bedroom for life after SCT, as by changing rooms with my son, I will get a garden view. My OH has let me choose the colour scheme, theme etc, and I’m having uplifting, feminine colours with all that flutters, hovers and flies in the accessories/wallpaper/fabrics. Plus we have changed to single beds in case I have to sleep downstairs, (where the bathroom is)…..This project has really been enjoyable and I have even managed to do most of the painting albeit it a max of 2hrs per day, over a fortnight. Brother in law doing the papering Friday, carpet fitted mon, and then we can move in……

So hopefully all this will resonate with you, and remember we women as so practical & resilient. We are natural carers, and organisers. Our loved ones will step up to the plate, in which we need to place our trust,  and we can get on with recovering….

I hope you have a lovely cruise, and create even more lovely memories, which is what life is all about.

Sharron

[froghallParticipant]

Hi Rebecca,

I am smiling at the thought of 150 Primani Pants in all their glory !! Only a fellow girly would do that…….LOL

Once again how nice to hear from someone who says it IS doable and that you have had a positive result. As for the ice, I’d would probably be the one sucking on it for over 20mins. During and after my rather lengthy initial kidney biopsy I had some sort of panic/claustrophobic episode given the position I was in, and how many samples they took, (approx. 8). I naturally asked for ice chips, which threw them I can tell you. So there I was face down, being fed ice. Rather like when you go into labour, I even employed the birthing breathing technique to try and hold it together. Maybe I’m just a wimp. I do however currently get mouth ulcers, and throat infections from nowhere, maybe part of the anaemia? So fingers crossed for when the time comes.

I was only thinking last night, back in the dark ages,  for me c1998, I would have trotted down to the local library for a medical encyclopaedia in the hope all these rare conditions would have a mention.  I certainly feel that often I take the internet and its wonderful research tool for granted. I find myself Googling on daily basis all manner of things, and who would have thought we could have instant cyber chats, send messages and hugs too. Simply Marvellous.

Gosh I am sounding more cheerful by the day……Sharron x

Many thanks Rebecca, and long may you continue to keep well and improve.

[froghallParticipant]

Hi,

Megan- thank you, I too am currently in receipt of ESA, and have been since my initial diagnosis of CKD since last June> as its contribution based they have pretty much left me alone, but I guess it will all change in Sept when it runs out, as they will have paid the max of 365 days. As for the SCT its good to hear, as Eve has said that its doable…..I really am avoiding looking in to the procedure at the moment. I’ve been pretty proactive but this has thrown me…..

Eve- I think I’ve got problems. I’m 16 years your junior, and find it difficult to carry my 5.5Kilo Shih Tzu around, let alone 18kg of metal. I totally agree it is all red tape, and sadly so many deserving people give up. I did actually cry yesterday mainly with the frustration of having to justify my ill health once again….

As you both say CAB may be the way forward. But given other peoples difficulties claiming I am going to now wait until my ESA finishes before rocking the boat. In the meantime I am gathering hospital letters etc to put in a claim to my previous employers for an early release of my pension. Every little helps.

Oh and I’ve messaged Ellen, re LCDD. Maybe its time for inclusion in the related conditions section??

Best wishes and good luck to you both. Sharron x

 

[froghallParticipant]

Hi Eve,

Thank you for your thoughtful and sensitive post which gave me some much needed comfort. I am also sorry to hear about your husbands difficult journey…….

Sorry I haven’t replied sooner. We are all getting to grips with the enormity of the decision ahead. Also beginning to worry about finances. I plucked up the courage to ring Macmillan advice line, to basically be told sorry we cant help you as you haven’t got cancer and there are other people who have got cancer trying to get through. Yes, they really did say that, and Oh boy,  was I shocked and hurt. I also had to explain once again what LCDD is, and that the treatment is exactly the same as myeloma, but it made no difference. I’ll see what my lovely oncologist and cancer nurse have to say at my next appt.

Needless to say my journey is going to be one hell of a ride……….

I have actually bookmarked both Myeloma Beacon and Daily Strength, each carry a  little info on my condition, thankyou.

Sharron x

 

• This reply was modified 10 years, 5 months ago by  froghall.

[froghallParticipant]

Thankyou so much Eve for even replying. I do not feel quite so isolated as\I did when I originally posted. However, I did mention to the consultant at the NAC yesterday, that no one had replied to my post….

I do now  have some more info and clarity regarding my diagnosis after my visit. After a highly organised and busy couple of days, a SAP Scan, ECG, Echocardiogram & 6 min walking test to evaluate my physical finess, it has now been confirmed that I do not have any AMYLOID deposits. However my LCDD deposits go hand in hand with Amyloidosis, and are treated in exactly the same manner. I was rather taken aback when a stem cell transplant was discussed as a treatment option. Something which I have not given any thought to at all. Given my health and age, this seems to be the  better route as opposed to the usual chemo combo. In truth I have browsed through the booklet which was given to me about SCT and it has scared me half to death.

At least I have some time to digest what is what and the path I decide to take. During the consult, it became quite clear that LCDD is much rarer, but non the less equally as destructive to our organs. So if anything, by me posting it will have raised a little more awareness of this complex & extraordinary journey I appear to be on.

I would like to point out that the staff/team at the NAC were fabulous, and each and every patient was treated with so much dignity and kindness. There were some very poorly people in the waiting area, and each of us have a truly unique story to tell.

Sharron

 

[Author]

Posts