MAY/ JUNE 2021

Its took a while to get things sorted for Simons treatment to start, part of the delay was due to us, we had a couple of trips in the van booked and we wanted to have those before treatment started.

We managed a quick trip away in the van before Simons treatment started, its something that we have found takes us away from the pressures of this disease and we relax and enjoy camping life. We didn’t venture far, in fact we stayed in Devon.

On our return we knew we would be getting onto the treatment train again, and this soon happened. Last time Simon was on IV treatment this was given via a PICC line, this time things have moved to a TIVAD (Totally Implantable Venous Access Device), this is implanted into his chest and makes life with chemo a lot easier (with less hospital visits etc). I am on quite a few cancer forums (for patients and carers) and researched TIVAD’s and what they were like being fitted, “felt like I had been hit by a bus” was a regular comment, I did warn Simon this happen and wow didn’t it just, however he didn’t have long to recover as the following day chemo started.

Simons treatment routine is three days on, 12 days off, this is a chemo treatment called FOLFIRI, day 1 in hospital for irinotecan infusion, followed by folinic acid and flourouracil infusions, he is then fitted to a pump via the TIVAD for 2 days of 5FU via a pump. Nausea, fatigue, Neuropathy are now our bed fellows.

Simon has today started his third cycle, we await an oncology appointment next week to see if there is any change in his CEA, this is done every other week and for now is a marker to see of this chemo regime is making any difference. His next CT scan will not be until the end of July, but as his CEA has risen in in line with tumour growth, his oncology team and us both agreed with is a good and easier marker to establish any possible changes.

I have titled this blog as “Return of the old routine” but of course the one thing that has changed this routine is COVID, and for several reasons, sorry for the list of things but this is the easiest way to do it:

  1. Simon has to wear a mask at all times whilst in hospital, so does everyone I hear you cry, yes they do, but this is sat in a chair for four hours being administered chemotherapy, he has lung mets that make him breathless, but NOTHING would stop him wearing a mask to keep himself and others safe.
  2. My part in his chemo is radically reduced, because of the restrictions in people visiting patients in hospital I am only allowed to accompany him to the ward, with agreement from the ward sister I can see him to his treatment chair, make sure he has everything and then I have to leave. I would have normally have sat with him through the whole experience, now like all the other patients having chemotherapy he sits alone.
  3. Visitors and lunch, Simons love for food and snacks, my Sister who also works at the hospital has previously provided Simon with a hot lunch from the hospital restaurant, this provided us both with a break and loved seeing her arrive with his chips and gravy!
  4. Volunteers, due to COVID restrictions the volunteer who made refreshments for patients is unable to work and provide this service. We have known Debbie for 5 years, have loved having contact with her, her presence and care for patients and their families is missed. Its these small things that mean so much and the flask I now have to make for Simon is not the same as the presence of the lovely Debbie with her trolley of drinks and biscuits.

There are so many aspects of a chemotherapy ward. The staff absolutely make this ward, from the admin teams on the front desk to the HCA’s and nursing teams who welcome the patients warmly, administer chemotherapy but also provide a huge service in listening, advising and sometimes just sitting with a patient with their hand resting on the patients hand and saying nothing but providing silent yet immeasurable support.

Its very strange that we have got into this routine of treatment, a familiar and totally unwanted routine I have to say, but this is giving us time, there is no cure, we just want to halt this growing for a while, we want more time. Its hard seeing Simon having the totally devastating effects of chemotherapy. Never underestimate the debilitating treatment cancer patients undergo to extend or save their lives.

Looking after our mental health

Its been very important to us both to look after not only our physical health but also our mental health. In November 2019 I hit my lowest point, not only was I working full time as a Service manager for the NHS but I was also trying to make sure Simon was looked after, the house kept tip top and lastly looked after myself, with the help of my GP practice I was signed off work and put on antidepressants. I was diagnosed with reactive depression and mentally exhausted, not only did I have an extended break from work I also resigned from my 34 yr NHS career and took early retirement. I did not go back to work and in March 2020 I officially became an NHS pensioner.

The medication worked to help settle me, it ensured the peaks and troughs of my mental health were levelled out, this worked well and has helped me meander through the past 18 months of emotion. However I have felt in recent months that my mood was muted by the medication, whilst it suppressed any low moods it also had the effect on me to enjoy life. It came about when Simon was taking a selfie of us and he asked me to smile and I actually felt I could not, I felt all emotion in me was locked in and I could not release this, it was very frustrating. I spoke to my GP, she was concerned that this was not the right time. However I explained the following; I want in these coming months to be able to relax, to laugh and cry, I felt the medication was muting my emotion enough for me not to tell Simon things that are important. I need him to know how happy he has made me, how loved he is, how he mended my broken and critical heart. I wanted us to live to the full, laugh at the ridiculous, and for me to feel myself again.

So, a month ago, I with the agreement of my GP reduced my medication, to come off this, it will take months but slowly I feel like I am waking up from a trance. The sunshine feels brighter and warmer and I am able to smile on photos again. I have friends and family (and GP) to help me through this, and I have Simon, I need him to see the best of me. You had better watch out Mr C as I’m back!

So as always, we move onwards and upwards.