Lions, lesions and Lonsurf

The wait for CT scans seems to come round very quickly, but two monthly scans now I suppose are going to come around at a pace.

This time we had a three week wait for results, this was due to normal waiting time and Consultant annual leave, this time actually passed incredibly quickly and we used the time well. Firstly, we kept the information that Simon had had his scan to a minimum of people, this stopped the endless asking of questions, so taking the pressure off us, secondly we booked a trip in the van!

The weather in Devon has been has been amazing and so we had beach days which were great, but also I looked around for things we could do. I came across a campsite in the middle of Longleat Estate, and so booked it, I also booked for us to do the “VIP Lion Experience” which was an up close experience in the early morning with the lion prides, one of their “Carnivore Keepers” gave us the tour and all the information, it was fascinating to see this amazing creatures so close. It was tempting to put your hand through the bars to give their heads a rub, but I thought better of it.

The time away was amazing, the weather incredible (if a bit too hot!) and mostly it got us away, time to forget the worries, we talked, walked and laughed a lot! Making memories, using our time wisely.

So we got back to rain, and the wait for the video call, I have to say I am really liking how these difficult times have made changes appointments and new technologies have meant we do not have to travel, park and sit in the hospital. Mentally this is better for us.

The Appointment. We had sort of been lulled into a false sense of security as Simons health had been good, his tiredness had subsided and we both thought we were going to be told that the growth rate was small and we were to be given another two months off treatment. Sadly this was not the case.

All the lesions had grown, and whilst the growth rate is at a steady pace Simons CEA (this is the cancer marker monitored in his blood) has doubled in the past few weeks, it is now the highest it has ever been and so the cancer is moving at a pace now. His lung lesions being the bigger. We had a discussion about the treatments available, we have two options left, Oxaliplatin and Capecitamine (CAPOX) together, or Lonsurf. Lonsurf has a less of a success rate in halting the growth, it also has less side effects, the CAPOX treatment Simon had four years ago, and the side effects are cruel and difficult.

Simon will for now go onto Lonsurf, he has a face to face appointment next week to sign consent forms etc, he needs pre-chemo bloods re-run and then we will get the tablets. One thing about this drug is it is taken in tablet form so this is easier than an infusion, he can also for now have his PICC line removed.

How do I feel? How do we feel? Numb is the first word I would use, anxious, scared……… a whole host of emotions, none of them positive. We are thankful that we have had the summer (well, post lockdown) to do things and we have used that time well, day trips, nights away, our campervan has been such a crucial edition to our lives. We now that Simon will start to have effects of the chemotherapy, but as always we will make the best of every day, and if we can we will get away as much as his health lets us. We will have to be careful, back on chemo puts his health at risk again, and the risk of the dreaded COVID will mean we will take extra precautions.

The summer weather and our time has lulled us into a false sense of security, the old Simon came back, his energy levels improved and for moments and even days we forgot, but cancer has a terrible way of reminding you that its never far away and trying to control our lives. We know it will win the final battle, but we wont let it win easily, and we will keep looking for trials, research and treatment options. We are very good at picking ourselves up, we allow a short periods of time to reflect on bad news but we do not let it control our lives, but this one has seemed difficult. Simon feels this is one step closer to the end neither of us want.

We will regroup, we will get bak on our game, we will fill every minute we can with love and laughter.

Onwards and upwards Mr C, the path has suddenly become steep but between the two of us we can get there.



Campervan trips and long waits


Another year draws to a close


  1. HoneyC

    I cried reading this but that isn’t going to help you both – keep climbing and making memories xxx love to you both xxxxx

  2. Mel

    Love the memories you are making, the laughs you are having nothing can take those memories away. You are both amazing and I for one am privileged that I have some great memories too. big virtual hugs sent. Xxx

  3. Rosemary

    I replied but I don’t think it posted.
    Wanted to say words seen so inadequate but we want you to know we are with you both all the way and send our love. Keep sharing the love you both have and make memories xx

  4. Jennie Wills

    Thinking of you both, keep up the fight, bloody COVID has a lot to answer for 😢xxx

  5. Lin

    Went through something similar to this nearly 10 years ago. My husbands primary cancer was never found but after removal of lymph nodes, chemo and radiotherapy which took him right to the very edge of existence itself, I’m very happy to say he survived. The whole experience was horrendous dictated by hospital appointments and the after effects of treatment. Eating became very difficult so a PICC line kept him nourished.
    It was a living nightmare, life totally revolving around everything that comes with living with and treating this insidious disease.
    I thank Derriford Hospital with all my heart, they were/are amazing.
    Sending massive hugs to you both. Thinking of you.

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