Hi Tom,

I was advised by a MacMillan nurse to apply for DLA because of my limited mobility and extensive bone damage. I put in for it expecting to get the lower rate but they gave me the higher rate and a nice new car.8-)

From what I can tell the DLA is mostly a mobility based allowance… if you qualify they give you the full allowance…[Read more]

Excellent news Liz… I bet Kev feels much better just knowing that the treatment is working and working so well at that.8-)

I missed my second infusion of Cycle 2 and had to make do with just the one (infusions are set for Day 1 & Day 8… no swapping or changing, its either 1 & 8 or nothing). My light chains were at 525 when I came off…[Read more]

Hi Sue,

As Maureen said, you did everything you could for Michael and although you must have felt helpless these last few weeks you and your daughters were there for him and you were there until the end.

Now it is your time. Time to allow the shock and the loss, time to grieve and time to grow into whatever you want to be. It won't be…[Read more]

I too had heard very good reports so I asked a Doctor who was treating me in the Day Case Unit (for a suspected DVT) and he said that he personally had one and would recommend it… so I bought one. It arrived from Amazon and I tapped it and unwrapped it, eager to use it and, yes I know I am letting man-kind down, I read the instructions on the…[Read more]

Thank you all for your replies and your support.

I finally got through to the senior lead nurse today who told me that my lead nurse (Jenny) was off for the rest of the week but she offered to go through my bloods results:

HGB 10.8 (from 11.8 but still good)
WBC 3.0 (from 3.4)
Neuts 0.8 (from 0,77)

So very little movement with my…[Read more]

And good health to you my friend.

I can feel your frustration Keith… at least your consultant is trying to trace the reason for your non-production of platelets, so let's hope that one of the avenues of exploration is fruitful.

What are/were your PP's at the last reading? As you say, if you can see some evidence of reduction then you…[Read more]

Hi Sue,

The decision not to move Michael to the hospice has sealed the deal… he will pass at home and his family will be there at the end. I know how difficult it has been for you for the past few months but I am sure that this is the way that Michael would have chosen… it would certainly be my choice… no, it is my choice. I want to go…[Read more]

Hi Susannah,

How are things generally? Are you getting enough support… the right kind of support and how is Michael coping without treatment?

Have you managed to visit the hospice yet?

Keep in touch when you can. 🙂

Dai.

Bumpety Bump.

Hi All,

Thank you for your continuing support and encouragement.:-)

I am feeling a lot better in myself, GCSF injections completed, 3 antibiotics finished so it's wait and see on Monday whether or not my Neutrofils are up and over the 1.0. I have another rest week before Cycle 3 and so the Neuts have to get up to at least 1.5 otherwise…[Read more]

Small things, little things, gentle things
Things that describe the way that I feel
Not sunshine or shadows
But smiles and side-glances
Little romances I know to be real

😎 😀 🙂

Dai.

Hey Tom, ho Tom, merry, merry, down… all in the Forest so green-o. 😀

Great news my friend… I am so glad that one of my contemporaries is getting a series of green lights… onwards and ever upwards. 😎

Most people on longer term remissions get on with their lives and drop in now and then… very understandable too… but you are…[Read more]

Hi Carryanne,

While you are feeling relatively fit and taking hygienic precautions etc., you can carry on more or less as normal… but there will be certain times where you will have to take extra care, especially where germ carriers are concerned.:-(

I am assuming that your CDT treatment will be a complete success and that you will then…[Read more]

Hi Keith,

I do hope that you manage to get home tomorrow… I am sure that the sense of release you get from leaving the confines of the hospital will act as a physical boost… it does for me.

I was admitted last Monday am after my bloods and a consult with a temp of 39.3 but fortunately they got my temp back to normal within 2 hours……[Read more]

Hi Tom,

I realised that I have Face-Time on my main Mac… I will check it out and set it up… it will be interesting to see who in the family have got it already. Thanks for the reminder.8-)

Dai.

And what a night… the Dex buzz kept on working until 4am when I finally zonked. I woke at 6am and took my meds (I am on 5 different antibiotics this week… down to 3 semi-permanet from next Tuesday – in the meantime I have had to resort to a chart because of the distribution during the day with med-takes at 8am – 2pm – 6pm – 8pm & 10pm. It's…[Read more]