[quote]His feet are numb which is completely manageable but the tenderness in the soles of his feet are the killer. The worst thing you could take away from Chris is his fitness and it is this that is the hardest thing for him to cope with.

I feel we have had no luck at all along the way, drugs not working and now not recovering well from the…[Read more]

Hi Clare,

I hope someone comes along soon that will direct you to all things Barts and that you are suitably impressed.

Two things:

1. Your Mum has been blessed with an excellent return from her CDT by getting her PP's down to 5… well done her. 😎

2. The SCT process (the end bit, after the stem cells are returned) is unpleasant, no…[Read more]

Hi Eve,

You are quite right, the Elephant interferes far too often, especially when you ate running out of options.

I think he enters the room as a baby elephant, something akin to Dumbo without the oversized ears about the time of the relapse from the first (for some of us only) SCT, That's when you take note of the treatments and options…[Read more]

Hi Tom,

Mid-June seems far off but its only 7 or 8 weeks away… the time will fly but try to enjoy it as much as you can. The further you go along the MM path the more you will want to jam the brakes on.

There are plenty of blogs about the experience of SCT's and even some excellent recollections and SCT 101's… but unfortunately they…[Read more]

Well that brought a smile to my lips when I needed one… 😀 😀

Now, I've got to get myself one of those. 😎

Dai.

Thanks for the tip David, I will try that approach and see if it works. 😎

Dai.

I think Keith knew that this stage was near but was hoping that there would be one last treatment that might extend his life by a few months. More than anything he wanted to be well enough for one last holiday with Sue… Cape Verde was his choice but anywhere would have done.

He started Bendamustine a Cycle ahead of me but it didn't take due…[Read more]

Hi Maureen,

I have been following Ian's progress and I am so glad that he is doing so well… but… while I can understand stopping treatment to allow Ian's body some respite by way of letting him recover from his bedsore etc., I don't understand why treatment has not continued now that the shingles have gone and he is on the mend. kappa…[Read more]

Hi Ann,

Welcome to the forum, I am genuinely sorry you had cause to seek us out but now that you are here I am sure you will find us supportive and willing to share the sum of our experiences. The first thing I should say is that you will never be guilty of the act of 'it's just me'… I assure you that will never be the case. Big things,…[Read more]

Hi Tanya,

I am so glad that you were able to be with your Dad at his peaceful passing… and that you had the support of your husband and your Mum-in-Law in the immediate aftermath. From your opening post of this thread it seemed obvious that your Dad knew that his end was near and the gift of flowers, for the first time ever, was his way of…[Read more]

Hi Tom,

Glad you are on the mend but take care to finish your AB course and don't go jumping in puddles… as yet.:-D

What you need is a [b]'Work Onesie'[/b] TM… [quote]Made of a rainproofed but breathable soft Nylon outer skin with a brushed Raylon inner, the [b]'Work Onesie'[/b] is extremely flexible, promoting an ambient skin…[Read more]

Hi Jean,

After suffering 2 spontaneous fractures, small but painful nevertheless, one on on the very top of my left arm and the other about 10 inches away on my scapula, I was given a meeting with a consultant from a neighbouring and bigger hospital, QMC. I should say that by the time this meeting took place both fractures had more or less…[Read more]

Hi Tom x Tom (I'm a Thomas too but go by Dai),

I have seen that the symptoms are listed and a nurse mentioned a sheet last time… she asked me if I was given one and I said no… she said I would have one to take home but I never got it… I will ask for one next time I am in.

I don't think it is proper flu Tom, I don't have any of the…[Read more]

I had my 2nd infusion of Zometa last Tuesday, tagged on to my 2nd infusion of Bendamustine Cycle 4. I had similar side-effects to those described as fitting to "Zometa Flu' after the Ist infusion but nothing drastic and the side-effects disappeared after a few days. This time it has been different.

First off I have to say that I have no way…[Read more]

Hi Terry,

I remember you posting last year, as a football fan your name earned instant recognition.:-)

Yes, the waiting around is an awful time… the not knowing, the struggling to let go of the remission status and the reluctance to fully accept that you have indeed relapsed. If it is a blip then your relief will be profound… but if…[Read more]

I want to see how my treatment is going before making any plans. My daughter Amy, a professional singer, has been abroad for the past three years… Feurteventura, Majorca, Barcelona and now Cape Verde… but the good news is she is coming home for the summer season and perhaps the autumn/winter season too. Most of the family have taken…[Read more]

Hi Jo,

Like Helen, Eve and the others I too had been wondering where you were. I put out a call for Keith and was mindful to put one out for you but I wanted to wait another week to allow for holidays etc., with it being Easter and all. Then you tell us you have had pneumonia… I wasn't worried about MM as I am with Keith but you were…[Read more]

Hi Jan,

I discussed the MUK 5 trial with my consultant again this last Monday and she was quite adamant that the trial had not yet reached Nottingham… this being so and with her stating that the Bendamustine needed watching because the reading was up slightly, makes me wonder why she did not raise the question of the 'Endeavour'…[Read more]

Thank you one and all, your support is invaluable to me. 🙂

It wasn't cowardice but I didn't ring in today. The treatment has hit me harder than before over these last two days and when I started the day my Dex kicked in and I was snappy and short tempered. I apologised to Janet the first time… for snapping and for the snaps that might…[Read more]