And the Big Man said………..

This is a little late in posting, because I found myself, as always after the checks, totally spent, emotionally and physically.  I have been really nervous about this latest round of checks.  Probably a deal more nervous than I would care to confess, particularly to myself.   On top of the anxiety, the inability to plan beyond a few weeks has brought a strain that has been constant. That anxiety has been fed both by my own health, as well as the ongoing family situation.  All in all, exhausting and wearing.

As usual, and based on the experience of recent months, I have refused to book any travel or make any plans for immediately after the checks.  I have had to rearrange or cancel travel too often and it feels as if I am tempting fate if I do book travel.

As usual, I had to fast from midnight before heading into the hospital for the blood draws and the start of the whole check process, on Thursday.  Before I left, I had a few minutes online to make sure there was no untoward news from home.  I start and end every day in that way.  There was nothing from Scotland, but I was terribly saddened to learn that yet another woman, Donna Peach, whose blog I follow, has been taken by breast cancer. As her husband told us using her own words, she had danced into the light.  The fact that she is the third person I know personally within less than three weeks to be stolen by cancer, is a stark and unneeded reminder that this disease is aggressive and unpredictable.  Seeing the sad news of Donna’s death hit me additionally hard on the morning of my own checks, as I selfishly felt myself interpreting this as a “sign”, which did not bode well for the day.

So I am very happy to report that as far as my own checks are concerned, it is good news.  And for once no little provisos it seems.  I have been dancing around NED these past months and he has been almost there but not quite.  I did not quite get the clear “we see No Evidence of Disease”.  Rather, I have had these little snippets of “hmm, it is probably not anything sinister but…” There is a huge difference between NED and not quite NED and it is very hard to communicate how different they are.  In the same way there is a huge difference between No Evidence of Disease, and Evidence of NO Disease.  And that is what would make life look very different.  That is a discussion for another day.

These checks involved the usual bloods, prods and an unseasonal bonus ultrasound which pegged out a number of little shapes.  I almost prefer not being able to see a screen as I am always compelled to look and analyse.  I even seemed to get a discount, perhaps for good behaviour, or more likely for being a frequent flyer and clocking out so many hospital miles!

My surgeon examined me thoroughly, reviewing the ultrasound and saw nothing to be concerned about, noting a number of small cysts, and sent me packing.  Not before he admired my toenail colours though.  I told him that this was my auspicious colour and therefore I had a clear expectation that the checks would go well!

auspicious toes

Then I saw the Big Man, Dr W2.  Again a lot of prodding, and questions about my fall.  I blamed Tamoxifen for my clumsy toes, to which he countered, “You’re not on Tamoxifen any more”.  I explained that I meant Taxotere and the neuropathy which has never entirely disappeared and left me with clumsy feet. As well as clear memory and confusion issues which I had just demonstrated unintentionally!

The upshot of the bloodwork is that, although my tumour markers are still a bit high, they are not rising.  One of the reasons I was especially anxious about these checks is because it would provide three tumour marker readings.  And three results will show the start of any trend rather than one result out of context, or an A to B result.  If you want details we are talking readings of 30.2 then 27.8 and now 30.  So this shows relative stability and not a rapid increase.  The fact that is above the reference range (or “normal”) is quite probably related to taking warfarin.

He also commented on the toenails!  Note to self – get the same colour next time, it seems to work!  The biggest indicator of the day came from the words of the Big Man (my oncologist) himself.  He told me that he wants to see me again in SIX months.  Not three months which I had been expecting to hear.  Which I had not even dared to hope that he might say. No he clearly said SIX months and calculated the meds I would need for that length of time. Six delicious long months.  This means that I can start to think about planning my life again.  This is a biggie, as I had already progressed onto six monthly checks nearly two years ago, and then the embolism followed by the raised tumour markers meant that I was called more often.  It felt like a huge step backwards at that time.  So this progression to six months is a Big Deal and hearing those magic words made me realise just how huge it has been in my head.

The checks were tough for another reason.  For almost as long as I can remember, my friend and I had planned our checks for the same time, so that we could support each other and be naughty cancer rebels in the waiting rooms. We have both been through unexpected extra scans, and scares and know how to be there without either dramatizing or trivialising what it is like.  She was not with me this time.  She has moved out of the region and we are both now going through these in our separate ways, still supporting each other online and equally outrageously.  I missed her far more than I had realised I would.  And when I got back to the comfort of my room later, I found myself weeping unexpectedly.

So the headline, in the words of the Big Man is “come back in six months”.  Not three months, not tomorrow, but six months. Six. Long. Months.

I now have to buy a new suitcase, to replace the one which was damaged in the return journey from Scotland.  I will make sure it is big enough to stowaway NED and keep him locked in captivity for as long as I can keep him there!

DSC_0073

And in the meantime, I can focus on the important things, especially when they are images created by and bathed in the soft light of the late afternoon sun. And particularly when they are captured by my New Camera.  And that is another happy story for another day. 🙂

Excess baggage, more about starfish and dreams of chicken

There are many things on my mind as I pack, now at the end of an intense  week in Cambodia, ranging from intense strategic discussions, inspiring and humbling accounts from our programmes and a harrowing backdrop of the all too recent genocide in the Khmer Rouge years. Captain Paranoia is still with me constantly, but the events of the week have meant that he has had to compete for my attention.

At the outset of this week, I was present at an address by the Minister of Education here in Cambodia.  He gave a very powerful speech, apologising for veering away from the prepared words and sharing his own history about the Khmer years and their impact on education in the country.  He brought the realities of the genocide to life and I was riveted by his account.  Then he told an anecdote which struck an incredible chord with me.  He told us of one day when his wife had woken him urgently.  He was very upset, and told his wife she should have left him sleeping.  He recounted that he had been dreaming that he had been eating a chicken and it was so delicious, and he had been so hungry.  He said to his wife that she should have let him sleep until he had finished eating the chicken!  What an incredibly visual account of the horror they were living through.  His point was that, in the midst of that hell, he was able to escape in his dreams and no one could intrude on his dreams no matter how little control people were able to have in their lives.  It reminded me of my own starfish dream and how that had lifted my spirits and given me an escape from the preoccupation of the upcoming hospital checks.  It is indeed testament to the strength of the human mind.

However, despite that inspiring example of the chicken and my own private starfish collection in my mind, I am being mysteriously, or not so mysteriously, blocked from planning beyond these upcoming checks.  This is not unusual it happens every time.  Usually though, I only have to book a return ticket home afterwards so there is no great issue about that.  This time however, I should (if all goes well, fingers and toes tied in knots, touching any chunks of anything resembling wood and many other gestures of hope) head straight to India after the checks to see my family in law for the first time since I was diagnosed.  But despite several attempts to book my ticket to travel after the appointments, I have been completely unable to complete the task.  I don’t even have a reservation due to difficulties in booking online and the prospect of having a useless ticket if there is anything other than NED ahead.

After our meetings finished, I managed to fit in a visit to the popular Russian Market, initially to pick up some Cambodia silk which a friend had asked me to bring back.  I found myself drawn in to the glorious colours and somehow left the shop with silk sets for my close in laws too.  As I carted the heavy bags out of the market, I was wondering how many kilos I had purchased and whether it would be less than the 3 kilos which I think I had “spare” on the way over.  Then it suddenly dawned on me that I subconsciously broken through this block and managed to project myself into the “after the checks” unknown.  I will probably have excess baggage but at least I have been able to look ahead.  Now I just need to book that ticket!

And in a further coincidence, as I walked along the quayside yesterday evening in Phnom Penh, I passed the Tourist Information Office and there in front of me was a promotional poster for visiting Cambodia.  And the image on that poster, with its starfish and pristine ocean was incredibly similar to the image which I am recalling regularly from my dream!

What a funny old world we live in, with surprises and connections all around us.