Alton Towers?

I've never been, to Alton towers that is, and I'm not entirely sure I want to go either. When I was first diagnosed lots of people said you feel like you're on a bit of a roller coaster. Its a pretty accurate description, the highs are high and the lows end up very low.

You'll be pleased to hear that despite lots of talking and discussion about treatments and prognosis, I managed NOT to cry, I think thats pretty spectacular! After all this was the first time of meeting this lovely doctor at the hospital this afternoon, and I didn't want him to think I was some kind of lily livered pathetic old woman. Oh, no I was a "Gladiator" albeit one who talked a lot as I was quite anxious, and in stressful situations I tend to talk faster and gabble ( more than normal), he said I kept answering my own questions and at one point told me to "shut up"!!

As you have gathered I liked him straight away, and he has worked with DR H ( he has now retired...sadly. More of him later). In fact we ended up talking badminton for the first five minutes, nothing to do with Cancer! He has also done a lot of work with the PARP inhibitors I was talking about before, so he hasn't entirely ruled them out for the future.

He ran through my history, and asked me how I was feeling, all the usual stuff, and then he got serious, and said he would talk dispassionately and try not to be brutal. At this point I really thought that I was in for some very bad news... I felt so sorry for him, he was such a nice guy and i felt a real connection, and its so hard giving someone news that they really don't want to hear.

So, now for the facts:

I have a chronic disease.

I will never be cured.

I'm sorry if that's really shocked some people, but it's nothing that I didnt know already. Still not good to hear it said out loud, but there we go.

We studied the CT scan and looked at the swollen lymphnode in the base of my neck, it's about one and a half cm (think normal nodes are about a centimetre). When he examined me, he couldnt feel anything, but that's neither here nor there.

We talked about Chemo, and whilst that's more than likely in the future, he said that he really wouldn't want to go down that route now. Many reasons, partly because I am so chemo sensitive (due mostly to carrying the BRCA2 gene. ) I would probably end up very ill again, and as my bone marrow is still so supressed I would have no immune system and therefore open to infection and I'm afraid you can become neutropenic and die... lets not go there.

 Neutropenic sepsis is a potentially fatal complication of anticancer treatment (particularly chemotherapy). Mortality rates ranging between 2% and 21% have been reported in adults. 

Systemic therapies to treat cancer can suppress the ability of bone marrow to respond to infection. This is particularly the case with systemic chemotherapy, although radiotherapy can also cause such suppression.

We are not ruling out radiotherapy, apparently it would be 'easy peasy' in that area of the body, although it is close to my windpipe ( maybe that would stop me talking?). However a little crazy to go ahead with that at this present time when we don't know if there are any other smaller tumours elsewhere. 

Of course, this node may not even be a tumour, so far all we have is a slightly swollen node, but the rising blood counts appear to indicate something's not quite right somewhere.

I hope I'm making a bit of sense, its all supposition, but everyone needs a plan of action, me more than most. Although Steve did say out of all my favorite games - it's the one I 'love' most,  It's called "Wait and See".

I am asymptomatic (showing no sign of infection), which is obviously good, and i currently am enjoying a good quality of life. Yes my CA 125 is going up, but at the moment it is still low.

It would be mad to give me Chemo, to make me very ill and actually not wipe out the cancerous cells anyway. As Dr B said, we have to find the balance of the quality of life and the cancer- and as such the quality is winning by far, so until the disease starts to take over again, lets just monitor. 

I dont really have a choice. 

Having an ultra scan in two months, this is just a non invasive way to measure the tumour in the neck and also a blood test, again just to keep a check on the CA125. 

I'm not giving up, far from it, I have to keep myself as fit and as healthy as I can, which I intend to do. I'm apologising in advance if you ask how I '"really am" and I cut you short- unless I've got a stinky cold or a sports injury, I'll probably say FINE, thank you and change the subject!

Totally changing the subject, if you are not on FB you'll have missed the 95 photos that I uploaded- just as well! I had such an amazing time in the UK last weekend, really good to spend time with family and friends, some whom I haven't seen in years. Cousins included! 

Thank you everyone for being so kind (and rude) and just normal (and abnormal), and I'm already looking ahead to the end of May when I see lots of you again at our next meet up.

Back to Dr Hima....

Island Friends Together
Another Sri Lankan evening, set at St  Georges school on March 11th -7:30-8pm. bring your own wine/beer etc. Tickets £25
Tel 07797717680 or
07829818443

(Advert in tonights JEP)

Lastly my lovely yoga teacher gave me a little scroll -

“NEVER GIVE UP
No matter what is going on
Never give up
Develop the heart
Too much energy in your country
Is spent developing the mind
Instead of the heart
Be compassionate
Not just to your friends
But to everyone
Be compassionate
Work for peace
In your heart and in the world
Work for peace
And I say again
Never give up
No matter what is going on around you
Never give up”

― Dalai Lama XIV

 He gives up an hour a week to take a class at Macmillan ,and he wondered why I was looking a bit down last week, so he thought that may help, bless him.

Still no pictures .... and its taken me two hours to write this post, so totally brain and finger dead now!!... KBO x