Hi Gaye,

Just in case you look in… today's weather (Wednesday) is better this morning in the south but has the promise of showers later, so if you are venturing in to the garden get out early. 😀

I imagine you are now limited to your normal medications… plus any extra needed day by day… I hope that you are both comfortable and stable…[Read more]

Hi Eve,

My Velcade experience has had its drawbacks in terms of side-effects but to be fair it has worked very well… spectacularly well in fact, in the reduction of my kappa light chains… which is the primary purpose after all. I went from 246 to 13 after 2 cycles and 13 to 11 after the next (under 18 is the Complete Response marker so the…[Read more]

Hi Keith,

I am sure that there is relief all round that you have moved through the sticky bits to home-base.
Take your time with your recovery… but you know that.:-)

I have enjoyed quite a few good walks over Loftus and Saltburn Cliffs in my time, having a good friend who lives on Loftus Cliffs… the air along that coast is bracing…[Read more]

Today (Monday) and Thursday for infusions of Velcade and then 3 weeks off (including rest days and holidays). I am going to have to whinge and bear it because unfortunately the first two infusions of this cycle (5) have left me feeling awful… which is strange because the strength is the same as Cycle 4 and that was a breeze (apart from the…[Read more]

[i][b]'You have to understand that those people who are currently undergoing treatment cannot make plans as far ahead as November! Because with the best will in the world they simply do not know if they will be well or undergoing a treatment which makes them feel like sh**[/i]* '[/b]

Min has hit the nail on the head in my case.

Which is my…[Read more]

Great news from you Gill and Stephen,

I truly hope that this freedom from pins, needles and their associated attachments is combined with freedom from MM and a meaningful remission.

The best of luck with the blood-works.

Dai.

My Lovely Gaye,

You were a great strength to me when I first came to this site and you remain a great strength to me now.

I can do no more than accept your decision, as much as I would like it to be different… but I know that that would be wrong, just because I find it so hard to think of a world without you in it.

I am sure that the…[Read more]

Ah well (Mk XCCVIII),

I finally got Doppled and the Doctor was very thorough. Its definitely a DVT and quite a large one by all accounts. I had a nervous moment when he decided to track up into my stomach… but all clear… the DVT is in my upper leg (my bet was nearer down but what do I know).

So continuation on Enoxoparin until my…[Read more]

Hi Sarah,

I'm banned from driving (by Janet) until they sort my leg out. I was completely and utterly surprised on the way to the hospital, via the scenic country route, when Janet burst into tears saying 'poor, poor Sarah, what she must be going through'. I had to get her to slow down (she wouldn't stop) to wipe her eyes and she followed up…[Read more]

Hi Mary,

You and Theresa are often in my thoughts and much more so over this week-end when we lost one of our own, Gordon,,, to this damned disease. Like Patrick we never had direct contact and received all his news from our dear friend, his wife Sarah.

Please raise a glass of the black stuff to your Dad on holiday and I hope you thoroughly…[Read more]

Min has hit the nail on the head IMHO. We are subjected to a 'one size fits all' and, thanks to NICE, we also have to have certain treatments in a certain order – for instance:

When I started treatment the order of play was:

CDT – SCT – Velcade – Revlimid

+ various experimental treatments at differing stages of development…[Read more]

Why Eve…

If I had a suspicious nature I'd say that behind the flattery you were trying to volunteer me for a job… a specific job that entails putting across the Myeloma patient's perspective on the provision of laboratory services and laboratory tests… not to a Myeloma InfoDay, where you are surrounded and supported by like minds… but…[Read more]

Sarah,

From the second you told us that Gordon was coming home I have been waiting on this post. In the meantime I have been willing strength and positive thoughts, simple prayers and my kindred love towards you both.

I wish I'd known Gordon… I thought of him so often this week-end… in the bed in your living room with the amazing harvest…[Read more]

Hi Keith,

The home bit threw me… rather you than me was my first reaction. Not because of any hygiene or general health issues, I am sure that you have everything covered in that respect… I was thinking more along the lines of being left alone to get on with it. Still, I can see the benefits of being surrounded by familiar things… and…[Read more]

Hi Ivan,

I think I will be the third person to raise the matter of going to work in such a variable environment re: people and bugs and germs etcetera… perhaps it might be judicious to ring your bleep holder (if you have one) or your lead nurse or failing that anyone at the centre where you attend for your MM matters.

I really would seek…[Read more]

Okay – Blog On!

I have my consult on Monday, previous to starting my next cycle of Velcade = Cycle 5. Cycle 4 slipped by almost unnoticed due to the kerfuffle with my left pin but overall it was a very good cycle… by far the best regarding side-effects… its just a matter of seeing if the reduction in strength (Velcade – from 2.1 to 1.49)…[Read more]

Hi Gill and you too Sue,

I came away with another course of 'Enoxaparin': (self-administered – into your tummy – blood thinning injections for those who do not know) a 7-day course this time against a 5-day course previous. That's all they had to offer because the Doppler gang insist that they are full to the gills with patients waiting to be…[Read more]

If I recall correctly Amelie you are a friend and work colleague of Johns.

Does he live alone or does he have support network at home.

I was wondering because if he is single then there is a chance that he will be attending these consult meetings on his own… if this is the case could you not offer to attend… as a friend, to take…[Read more]

The thing is we never know, perhaps we will never, ever know just how important we all are to other people on this site.

Life experience has taught me that sometimes the most irritating off the wall comment or observation perceived by most of us… can speak clearly, concisely and directly to someone else…

There are certain people here…[Read more]