The tide is high but I’m holding on…

My last blog was largely about why I found the need to take “time off” from cancer and give myself headspace to be something other than a terminal cancer patient.

Thank goodness I made that decision because this last week has been the complete antithesis of a cancer holiday. What should have been a nice “off chemo” week suddenly became filled to the brim with appointments. Some appointments were pleasant and in line with my wellbeing and feeling good strategy. Others very much less so, and have been the true nuts and bolts reality of living with stage 4 cancer. On Tuesday morning I had a very early start to be at Mount Vernon for another full body MRI. Scanxiety was high but eased slightly by having my pal Louise with me. I felt sick throughout the hour scan which was not delightful and then half way though my hip/femur tumour started really hurting and as I was pinned to a table, I couldn’t move. By the time it finished I was a bit of a wreck, but soon recovered after tea, cake and walks in the sunshine.

Thursday was another early start and a trip to Elstree to meet with the Prof to get the scan results. Despite the sunny morning, the relatively easy journey, having my lovely Vix by my side, the second I saw The Prof’s face, I knew we were in for another punch to the guts.

The scan has showed that old areas of the liver that had tumours are active again. Worse, and more worryingly, there are new tumours that have appeared in the liver. The conclusion being, that the chemotherapy I was on, has not worked. The cancer is winning. It’s an aggressive little bastard and it refuses to let go. The Prof’s face said it all. He doesn’t like to be defeated.

The conversation that followed went something like this:

Prof – I think the next step is IV chemo. Targeted hasn’t worked, homonal hasn’t worked, oral chemo hasn’t worked. The conventional next step is IV administration of a more intensive chemo.

Me – I don’t want it.

Prof – It’s the logical next step to try to control the spread.

Me – I don’t see the point of being made more sick for no positive outcome.

Prof – It’s your choice. People often want the opportunity for more time.

Me – I don’t want more time just to be more ill. I don’t see the point. Right now I can do what I want, when I want. I don’t look or feel ill, by and large. I don’t want you to make me more sick just so I can keep going to hospital for more treatment.

Are there alternatives, can we try targeted again, is there a different oral chemo, can I go back on hormonal treatment?

Prof – There is not enough evidence that going backwards, or sideways, on the treatment plan has any benefit. The NHS certainly won’t approve the cost.

Me – Can we try treating the liver directly – surgery, ablation, cyberknife?

Prof – No – your tumours are small and widespread so there is nowhere we can target that would not compromise the liver functionality.

This went on for a while. It reads a little bit like we were disagreeing, we absolutely weren’t, he is very, very caring and all credit to the man for putting up with me blubbing at him and questioning his every word. I pleaded with him to try some alternatives and told him that I don’t care for “convention” and I want to try something, anything, even if it’s not proven. The one thing that I am absolutely sure of, is that I do not want IV chemo. Not now. I see it very much as the last chance saloon. Once that starts, there is no going back and it’s an exercise in quantity and not quality.

In the end, he was very clear, it was my choice. He kept trying to make me go away for a cup of tea and think about it. I told him I had made my decision. And he agreed “Goswell, you know what you want”. Which is technically not true, but I sure as hell know what I don’t want.

In the end, we agreed on a different type of oral chemo and one of the hormonal treatments that I haven’t already tried. Again, completely unconventional, but there are straws and I am clutching. I will do 3 cycles and we will go again on the scan/monitor/review process. It’s faintly possible that this regime will impact my tumours enough to keep them stable for a while and that is the best I can hope for. Otherwise, the options are becoming limited.

This means I have around 9 weeks to consider what I might do next. In the meantime, ignorance is bliss. I have birthdays to celebrate, summer to enjoy, yoga classes to start and many, many things I want to do. The silver lining (and we looked hard to find it) is that my liver function has held it’s own for the last four to five months. Meaning that despite the invasion of the cancer in multiple lobes, it is still doing what it needs to do. Whilst this continues, I will keep on keeping on.

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That was yesterday.

Today I find myself quietly reflecting on my decision. I am one hundred percent happy with my choice not to agree to the aggressive IV treatment, for now. I am conscious that I may need to maintain a bit of an open mind in the months to come. I have given myself 3 months of hope and denial, and I am happy with that. I have checked myself that I didn’t make a knee jerk reaction borne out of fear and shock. I didn’t. I have spent the two and a half years since I was first diagnosed doing what is right for me, and I’m not changing that now. I have done everything I can to maintain my wellbeing and protect my mental health and this is what I need to do to continue that. The bottom line is that I don’t want to be ill. And yes, I realise that is not a choice I have.

It won’t surprise anybody that the thought of having to explain my choice to my friends and family was worse than the gut punch delivered by The Prof. Once again I was blown away by the support, understanding and love shown to me. Let’s not pretend this is easy for anyone.

I woke this morning with a heavy heart and for a minute considered rewarding myself a duvet day. But it quickly occurred to me, that going in to battle to maintain a quality of life, is not really evidenced by hiding under a duvet. Instead, I got up and went to the Hospice for yoga. I lay on the mat and breathed and told myself that this is what I’m here for, so I had best make the most of it.

After yoga, I met an old and wise friend in the pub for a cuppa. If my purpose is now enjoying the simplest of pleasures, then a hug, a pot of tea and discussing the meaning of life and death, is about as good as it gets.

Do me a favour.

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Big Love, AG xx

#Macmillan

#Breastcancercare

Blondie: The Tide Is High – John Holt

Never give up, never give up
The tide is high but I’m holdin’ on
I’m gonna be your number one
I’m not the kinda girl
Who gives up just like that
Oh, no

It’s not the things you do to try to hurt me bad
But it’s the way you do the things you do to me
I’m not the kinda girl who gives up just like that
Oh, no

The tide is high but I’m holdin’ on
I’m gonna be your number one
The tide is high but I’m holdin’ on
I’m gonna be your number one
Number one (number one)
Number one (number one)

Every girl wants you to be her man
But I’ll wait right here, ’til it’s my turn
I’m not that kinda girl who gives up just like that
Oh, no

The tide is high but I’m holdin’ on
I’m gonna be your number one
The tide is high but I’m holdin’ on
I’m gonna be your number one
Number one (number one)
Number one (number one)

Every time that I get the feelin’
You give me something to believe in
Every time that I got you near me
I know the way that I want it to be
But you know I’m gonna take my chance now
I’m gonna make it happen somehow
And you know I can take the pressure
A moment’s pain for a life time’s pleasure

Every girl wants you to be her man
But I’ll wait right here, ’til it’s my turn
I’m not the kinda girl who gives up just like that
Oh, no

The tide is high but I’m holdin’ on
I’m gonna be your number one
The tide is high but I’m holdin’ on
I’m gonna be your number one

Every time that I get the feelin’
You give me something to believe in
Every time that I got you near me
I know the way that I want it to be
But you know I’m gonna take my chance now
I’m gonna make it happen somehow
And you know I can take the pressure
A moment’s pain for a life time’s pleasure

8 thoughts on “The tide is high but I’m holding on…

  1. Hi Abigail, it’s been a long time since I’ve seen you so not sure you’ll remember me. I came across your posts via your Twitter account and am both saddened and inspired by what you are going through. Keep on keeping on and know that your posts are reaching an audience and making a difference. xxxx Christine @cpayne

    Liked by 1 person

  2. Hi Abigail, Great bit of music you always choose well. sending lots of love and wishing you welll with the next round of treatment . Xxxxxxx

    Like

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