‘The day before the oncologist’

Apologies for my absence over the last couple of days, it’s been, well , very difficult.

As the title suggests we have been building up to the day that we have been dreading ever since I came around from the anaesthetic 7 weeks ago. The conversation with the oncologist. I know that many people who are fighting the disease feel the same, and although my personal situation could be worse it is still an anxious period, as there are still some unknowns and complications particularly as I will undertaking chemotherapy with a stoma (little simon).

The outcome of tomorrow will define our lives for the next few months and potentially for ever.

Being analytical (which sometimes I wish I wasn’t) I have spent many sleepless nights in the last few weeks wondering ‘how is this going to work?’ .

By that I mean if I am on the same ‘regime’ (oxaliplatin infusion & Capacitabin tablets) how will Little Simon affect the success rate.

For one the chemotherapy causes virulent diarrhoea, bad enough with an intact and in place colon, take that away and discharging ‘water’ through my side is going to seriously cause me dehydration problems.

Secondly (this is my analytical brain at work) I already know that absorption is an issue with my stomach/ilium, hence the restricted diet eat al.

This also extends into certain tablets that I can/ cannot take as they will not be absorbed during the brief passage through my system. Mmmmmm, this stresses me greatly.

You see ‘cappy’ aren’t exactly small (the above picture represents a complete cycle) The first time I had them I didn’t know if I had to swallow them or stick them up my backside. Now you see where I’m coming from, ‘they don’t dissolve, QED they won’t be effective’ let alone getting wedged in little Simon. This along with other morbid thoughts regarding my mortality have conspired to take me to a very dark place.

No end of ‘keeping busy, cycling, or otherwise active’ has been able to lift me through this enveloping fog of depressive anxiety. Despite being surrounded by loving support from friends and family it can at times be a very lonely place.

Once again I have dipped into the superb support provided by MacMillan both from their clinical expertise and the psychological support they are able to provide, but ultimately they can’t make it right, and right now that’s all I want. I want someone to say “it’s all going to be ok”, but they can’t.

We hope that after tomorrow we will know the direction we are going. I like to have something to aim towards, that may be physical recovery, or in the case of chemotherapy it’s a target date when you complete the cycles.

The blog here on in will reset the counter, and will reflect my next challenge namely chemotherapy ‘Cycle 1 day x’ and so on and so forth. It promises to be different to the physical recovery, tougher, much much tougher. My resolve will be tested to the absolute max.

I hope that you choose to stay with me, your thoughts and good wishes are like the metaphorical 12th man in the football pitch.

Here we go…

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Day 51 – ‘A sense of normality’

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‘The day of reckoning’

20 Comments

  1. Good luck Simon. All your concerns are natural, but your oncologist should be able to answer them. They will have seen it all before. Do your have a clinical nurse specialist (CNS) to whom you can air your concerns? I’m stage 4 bowel as well but haven’t had any surgery only chemotherapy (about 35 cycles of Folfiri now) every fortnight.

  2. Steve Boot

    Dear Simon and Ali, we have been with you from the start and will stay with you throughout. We still very much look forward to the celebrations we talked about right at the beginning. All of our very positive thoughts and best wishes are with you for tomorrow. With love from both of us. xx

    • Simon

      Thanks Steve, we will have that celebration I promise you. Come hell or high water 😎

  3. Andrew Rowe

    Good luck Simon. Thinking of you and Ali. Great blog, love reading them. Xxx

  4. Mel

    I have read every blog written so far and think both you and Ali have been amazing. You can and will beat this you are the most determined and positive people I know and I think you are both inspirational. My sister was diagnosed with breast cancer 2 weeks ago and I know there is hope. Together you will kick the ass out of this horrible disease. Sending you both massive hugs stay strong love to you both xxx

    • Ali

      Sorry to hear about your sister, sending best wishes back to you and your family. X

  5. Mel

    Thanks Ali and hope all goes well tomorrow x

  6. Mark Bullard

    We are with you cheering and shouting, waving our flags with Simon written on them, some flags are big and some are small. Did you see what I did there. Lol. End of the financial year is due it is hectic in work at the mo but then it is Easter, then Mel and I will come and visit for a cuppa, if you will have us?

  7. Tracey HoneyC

    Good luck Simon tomorrow – I will be thinking of you both – onwards and upwards again you go Simon xx it must be so hard but try and keep positive – you will do this again xx

  8. Clare

    Will definitely stay with you Simon and Ali. You’re both (all) doing so well thus far, l’m full of admiration and respect for you both. Onwards and upwards, keep up that good fight you’ve been putting in, you will NOT be beaten by this ghastly enemy. Thinking of you so much and good luck for tomorrow and the rest of this next part of your journey. Xx

  9. Pauline williams

    Oh simon, as the saying goes “if wishes were horses, then beggars would ride” all our good thoughts, wishes and love goes with you as you set out on the next stage of your treatment. With Ali at your side she’ll keep you grounded and her immense love for you will hopefully keep you strong. We’re with you all the way Simon. God bless!!! Xx

  10. Bruce

    Simon, it’s clear from your blog that you’re being extremely courageous and strong and I’m sure this will put you in the best possible frame of mind for the chemo. You’ve done this before and you most certainly can again! Best of luck with the oncologist. Bruce

  11. Ruth Billen

    Dear Simon And ali, your honestly throughout is amazing, tomorrow is another step forward and we will be cheering you on, take care, Ruth xx

    • Ali

      My darling Ruth, we are so privileged to have our fabulous families surrounding us with love and support. Xx

  12. Mel

    Well Simon you would have been proud of us today we flew the flags for you on the interserve corner and recieved a wave from the Queen. In true traditional style we ate a cream tea afterwards and took a selfie for you. You were definitely in our thoughts, missing a royal visit well I never. Hope all went as well as can be expected today xxx

  13. sally

    Sending love. hugs and strength to you both … xxx

  14. Steve Boot

    So, got chatting with Mel today and learned that if I tick the “notify me of new posts via email” link (below) I will get an email every time you update the blog. For the last 50+ days I have been logging into the blog five, six, sometimes more times a day to see if / when you have updated it. How foolish do I feel now. Still, you should be pleased to hear I have logged onto your blog nearly 2500 times so far!!!!! 🙂

    • Simon

      😂😂 50 times more and you get a set of steak knives Steve! . Blog to follow….

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