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. 🙂

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12 thoughts on “And the Big Man said………..

    • Thanks Catherine, it really was beyond my expectations so I am really happy with the checks this time 🙂 And the camera – well, I have heaps to tell about my new toy! I have worked out how to switch it on but can’t make it go yet 😉 More soon 🙂

  1. I am so happy for you! That is fantastic! Enjoy your travels. I know what it is like not to plan, not to book trips, but I am optimistic that I can fly to a graduation in May, take a Switzerland excursion in August and fly to my son’s wedding 2000 miles away in September. I am just grasping onto hope and faith that my May and August scans will be clear. I’m glad you got that wonderful six months news!!! xo

    • Thank you so much J – as you know, these moments are precious and we just cannot take planning for granted in the same way any more.I am luxuriating in the fact that I have six months, and so appreciate it. I am crossing fingers and toes for your scans to be clear, and that you can firm up plans for the graduation, Switzerland trip and for your son’s wedding 🙂 Keep holding on to that faith and hope – love and more faith and hope from my side of the planet 🙂 xox

  2. So glad to hear things went well. These appointments can be pretty darn stressful can’t they? My doctor doesn’t even do markers, so… I’m sorry you missed your friend so much, but I’m glad you are keeping in touch. That’s what matters most. And thanks for mentioning Donna. We will not forget. Take care, my friend.

    • Thanks, Nancy – oh they are so wearing! And yet I know I am really fortunate in that most is done in a day, so I usually have little or no added waiting time. Yes, the whole markers debate is an interesting one………… I am having bloggy thoughts about NED too.

      You are right, we will not forget Donna, and so many who are being taken too soon and too cruelly.
      Thanks and warm hugs to you across the seas.

  3. dear philippa,

    i am thrilled about your SIX MONTH hiatus from checks. wow – that’s huge, and i am happy you are goint to run with it, packing dear, darling NED in your (new!) suitcase. i can just imagine how bereft you felt without your dear friend being with you; good you both can keep in touch to remain good supports for each other.

    losing donna has hit us all so hard; you, losing three friends in such a short period of time must feel devastating. but i know all of them are sending you their love and shining their very special light right to your heart to give you big hope, big love, and happy travels.

    love, XOXO,

    karen, TC

  4. Philippa,

    I’m thrilled that you are NED and that you have “graduated” to the six-month checkup. The anxiety of the tests, it seems, never go away. I’m glad you will be traveling with NED. Loving that picture with the warm sunlight on the wall. Fabulous!

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