Just A Little Guidance

Evening all,

A little bit of insomnia has led to me finally reading all the Myeloma literature I was given in hospital. It is pleasing to note, that for the most part, I was actually listening to what my medical team were telling me, as most of this is not a surprise to me. I was listening to the Doctors of UCH, so much in fact, that at this moment on time, and I’ll hopefully be able to confirm tomorrow, I am choosing to believe my Doctors about the future improvements to my bones through my treatment and not the ‘Myeloma UK’ literature, which unless you dig, does not seem to mention improvements at all. There is just a lot of guidance about living with the pain. Let me assure you, I have no intention of ‘living with this pain’ in the long term. I was told that it was going to improve and go and thus it is going to improve and go. It has to. I am fairly certain it is starting to get better already, albeit at a snails pace and trust me, I am being nice to the ability of said snail.

Despite this slight blip, the guidance is actually really good. Plus my friend speaks highly of this charity and Rac knows her stuff. Since my diagnosis, I have been asked a lot of questions about Myeloma from friends, which I cannot answer, and I think the ‘Essential Guide’ sums it up for you all quite nicely as an introduction, should you want to know more. The guidance will be able to answer your questions better than I can about the medical stuff (Big Sister is especially going to like the ‘Blood Annex’, though we could probably just get that from Haema-Dad). The guidance will not be able to offer more in terms of my personal outlook and wit, but I think you already knew that.

A few things to note, I am on a trial so my treatment is slightly different and the prognosis section should be avoided at all costs because the stats are taken from all Myeloma sufferers and as most of them have a good 30-40 years on me, it makes my odds sound horrific and scary. Oh and I am a ISS Stage Two – IgG – Lambada, with lytic lesions (6 of them I believe).

So, the essential guidance can be found at the link is below:

http://www.myeloma.org.uk/files/2913/3767/6373/Myeloma_Essential_Guide_1_June_2011.pdf

If you then want further reading after this, I recommend the Info Sheet about the bones. It explains how Myeloma is different to other cancers and how debilitating the bone deterioration can be. Clearly, I only think you should read that one when you need a little ‘pick me up’.

Do not be alarmed about abusing the website. Anticipating the massive increase in visits to the Myeloma UK charity website – this blog really has given me delusions of grandeur – I just made a wee (and I mean wee) donation to the charity, so you can read their well researched guidance notes guilt free.

Hopefully sleep now.

EJB x

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