Cycle 2 – Houston we have a problem

You know its going to be a tough blog when the wife steps in.  Tonight Simon is very tired, nauseous and feeling the effect of not only the chemotherapy but the tail end of a difficult week,  he has left me to tell you about how our week has been.

First of all some background “stuff”, the chemo cycles are like this:

  • Tuesday – Appointment with Oncology to see the medical team and blood tests
  • Wednesday – Called re test results, including CEA
  • Thursday – Start chemo

On our first appointment, a month ago now, Simon had been getting on and off what is referred to as “right upper quadrant” pain, the decision was made at that time for Simon to have a base line CT scan,  this has taken a month to come through and was due today.

Some science stuff , CEA – anyone that has been through bowel cancer treatment will be aware that there are certain blood tests you can have done that can measure carcinoembryonic antigens (CEA) in the blood.  These are usually proteins that are produced by certain types cancers.  Very scientific but for us we just concentrate on a number,  under 5 is normal.  Prior to Simons initial surgery in 2016 his was 11, and since then it has consistently been about 1.5-1.75, even prior to the surgery in Basingstoke,  now you have the detail lets get to this weeks appointment.

Everything was going pretty well, we were happy, Doctor was happy and we were going through our usual checklist of question and answers, “How have you been”, “what side effects did you get” and so on.  We were just getting to the “right we just need to do your bloods and will include the CEA” when the Doctor eluded to Simons CEA being 4.5 at his last blood test.  Now this is as you will see .5 below normal level, but for Simon this was a high reading, in fact we both took a sharp intake of breath when she said it.  This one sentence started a chain reaction that neither of us would or could have predicted that stayed with us for 48 hours,  which like an horrendous nightmare is still lingering in the shadows for us both.   Immediately all sense of reason and logic left Simons body,  fear griped him and we got him through the blood testing phase.  We knew we had to wait for the call regarding his bloods for 24 hours and so we went home.

Neither of us slept, but I had to go to work the following day,  Simon had promised to call me as soon as he heard anything.  Mid Morning I got a text saying that “bloods shown I am dehydrated, coming in for more bloods, no CEA result as yet”.  As I work in the hospital it was easy for us to meet, bloods done and Simon sent home again to wait.  Mid afternoon, I get a text “blood results call me”.  My heart sinks,  we have a relationship that gives us a sixth sense about each other but it was obvious this was not going to be a good call.  Two lots of CEA,  6 and 5.5,  so again this had risen and I could hear on the phone he was absolutely terrified.

One thing you need in your armour when fighting this disease is people who have your back for you,  we have a whole army of people who are with us through this and who perform miracles.  I called on two of my Lieutenants,  one, Jane my sister who by the time I got home was in the house with Simon talking to him. The other Lieutenant I will get to in a while.

Franklin D Rooservelt said in his first inaugural speech in 1932 “The only thing we have to fear is fear itself”.  Well,  I have seen what fear can do to you,  and I am not talking about being scared of a spider, creepy film, or the cat has bought a mouse in but REAL FEAR.  In Simons mind this cancer was back it had grown so big this was going to be it, the end, that was it.  He was in a grip of excruciating anxiety and fear and though we talked through things logically we could not break down or get through to him.  When oncology had phoned with his results they had said that he now urgently needed his CT scan which was 48 hours away.    We had a terrible nights sleep again,  but we knew Simon had to take his first lot of chemo at 8am in the morning, just as we were getting up my second Lieutenant called my mobile,  could we be in the hospital within the hour as we could have his scan.  For once the stars were aligned and the traffic lights green and we got into radiology in good time,  TH we owe you big time for your continued support, and the army of radiology team that not only got Simon through the scanner but everything reported.

Simon and I have a rule that has been the same for the past few years,  I get told the results first,  this is Simons coping mechanism and what works well for us.  When just after lunch the phone rang and I could see it was the hospital I took the phone into our study to talk.  “There are some areas that show inflammation but the radiologist has reported this is from his body recovering from surgery but the report has concluded no sign of disease or recurrence”  and breath……  I asked questions, but I actually cannot be sure of what was said,  all I do know is the CEA will be done again in three weeks but to chemo continues as planned.    I had to tell Simon this results,  he was upstairs, he appeared out of the bathroom not an ounce of colour in his face and shaking from head to toe,  “its ok Simon,  the scan was ok”.

I am sorry for the long winded account of the week,  but even in words it does not portray the fear this disease strikes into the very heart of us.  Through the past few years there has not been  time where we both feared the absolute worst,  until this week.  We are both wounded by this week, mentally and physically exhausted,  can we stop this train and get off it for a day please,  we will get back on to continue this journey, we would just like a break from it all.

Onwards and upwards Mr C,  you ain’t going anywhere yet!

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16 Comments

  1. Pauline williams

    Having heard a little from TH about the background to this blog I didn’t think it would affect me so emotionally but it has.. My heart goes out to you both. You must feel you’ve been out through the wringer. So pleased to hear the gods were gracious. My love to you both and I’ve already told TH she’s my superwoman too!!!!! Xxxx

  2. Tracey HoneyC

    Awww bless you both – I’ve seen Simon wound up like a coiled spring on a few occasions but last week I could see the fear in him tenfold and at times like this he won’t listen to reason, only to his own brain telling him the wrong thing. I had to come and see you before the CT as a friend and give you support but once Simon went in, I could then see how much all of this is taking out on you Ali – you both definitely need to get off that train and have some respite. Let’s hope and pray that the next cycles of chemotherapy are kinder to him with no upsets.

    You’ve got great family support and friends x we are all here for you both x

    Onwards and upwards Mr C and I concur with Ali – you ain’t going nowhere as Ali wants to go to Barbados again next year lol 😄 xxx

    Hope you feel better tomorrow Simon 😘 x

  3. Clare

    Keep going you two, you’re doing brilliantly. You are both such an inspiration. How you are handling all this, from what I can tell from your blog, is amazing. So proud of you both. Stay strong and keep up the battle, you will come through, I am sure. You’re such a brilliant team. Thinking of you and sending all our good wishes.

  4. Steve Boot

    Hey you two, we were fooled from Simon’s last post into thinking it had been a good week but can see how far off the mark that was. We are focusing on the “report has concluded no sign of disease or recurrence” and sending you best wishes and positive vibes. This is an awesome, honest and often raw window into your lives and we say again “you are both inspirational!” Love and hugs
    Steve and Marie xx

    • Ali

      We knew tonight’s blog was going to be the harder one to write. We are focussed and moving on. Thank you for your continued support, xx

  5. Now, my oncologist says that they don’t rely on the CEA reading as a marker, they look at bloods and how the patient (i.e. you and me Simon) is feeling. I can only dream of having a CEA marker as low as yours! When I started treatment back in October 2016 it was 6717, yes that’s not a typo, 6717. It started to drop immediately I started chemo and we got it down to 45 in 8 months, but it’s been going up since May 2017 and last week it had hit 650+ Progression to liver mets has been confirmed now (I have 3 monthly scans) but everything else is stable (lung nodules and one bone met on my skull). The tumour in my sigmoid colon is not visible on any of my CT scans, so have no idea what’s happening ‘down there’!

    Hope you feel much better in the morning Simon, and thanks for the update Ali.

    • Ali

      Gill, we have learnt through this that everyone affected by this disease has a different set of results, symptoms etc. This is chemical and psychological warfare, this week was an psychological affair where we let the cancer in a little to far and gave it too much power over us both. Best wishes to you from both of us x

      • Gill

        Thanks Ali. You are so right about the psychological aspects of this disease. Personally I just want to ‘nuke’ the little bu&&ers and get rid! But the worry over blood tests, CEA levels and neutropenic sepsis, regularly takes over. I am trying to train myself to only worry about things when they happen and not to get too far ahead of myself! Don’t overthink it! Easier said than done though.

        Best wishes to you both. Hope Simon’s feeling better today. x

  6. Andy Rowe

    Simon/Ali, I know we don’t see you these days but we are thinking of you both and are rooting for you. Try and stay strong, huge respect to you both. Xxx

  7. Rosemary and Francis Polglase

    Read your last two blogs one after the other….so sorry to hear the second one….all I can add to that one is I know the feeling…it’s frightening ……went thru similar ……..but look at me now…Simon you will get through this …..take a step at a time…lots of love xx

  8. Tracey Bentley

    Sending big hugs to you both ❤❤

  9. Jane Melizan

    Simon, Bruce sent me the link to your blog last week, and so I had a bit of catching up to do. Of course he had been filling me in verbally so I have always been aware of what was going on. But your blog has moved me so much by your brutal honesty and bravery, and the humour that you have both been able to muster. I have been quite emotional reading about your journey. I can only imagine how tough this last week has been on both of you. Please know that we are both thinking of you so much and send over the airwaves our positive thoughts and energyro you both. Jane Melizan

    • Simon

      Thank you Jane, this gives us strength. It’s an understatement to say ‘it’s tough’ but it is. This last week has again been a rollercoaster (hence my absence) but you run with the good days when you get them

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