Campervan trips and long waits

Time is as ever moving really quickly and as we are now out of lockdown (partially!) and life is beginning to move,  life does feel weird doesn’t it, would we have imagined that the world would be the place it is today last Christmas.

When we last spoke we were waiting for the scan results, which we now have,  everything is slowly growing as we expected, but as before not growing enough for the start of the next chemo line.  This is down to growth rates and also the dreaded COVID19. Simon was seen in person as he has developed a lump in his neck, which is a newly cancer affected lymph node,  Simon also wanted to discuss headaches that he has been having.  He is not a person that suffers headaches at all and so thought we should raise this.  His Consultant has requested a head CT to rule out brain metastasis,  just the thought of this terrifies me,  but we are hoping this is not the case.  The head CT was requested as urgent and four weeks of waiting we are still waiting for the scan.  I have had contact with the hospital and have been told there are long waits for urgent and planned scans.  His next planned 2 monthly CT is due in two weeks and we are not sure when that will now be.  This to me is terrifying,  in Simons Consultants own words to me via email “What you are experiencing is something that I have got used to over many years. This makes managing the care of my patients difficult or impossible”.  How terrible is this for a Consultant who cares deeply over the treatment and care of his patients to have to admit.  I asked for the CT report to be sent to us,  I wanted us to read what had been said and tumour size etc,  this is important detail for us to know what actually is going on and our Consultant is happy to give us all the information we need.

The start of new treatment is still limited in the South West, something we both struggle with. There is a growing campaign on how the delay in treatments, referrals etc  due to COVID19 would cost lives,  I do not want Simon to be one of those numbers.  We know we have to start treatment at some point and I do not want the cancer to “take off” in growth and suddenly time and any chemo option is taken from us.  We know the next treatment option is NOT curative, it will be a holding treatment and so will give us time.

The changes due to COVID are affecting us in as much as I cannot attend the hospital with Simon  for any appointments,  his last appointment I attended virtually via the magic of Facetime (I was sat in the car waiting for Simon). We are all making changes in this year, and when people moan about standing 2m from people and wearing masks in shops, believe me its a small price to pay. 

However we have got away…….yes we got away and stayed in the camper, not just once but twice!  First trip away was a wonderful site in Devon, we had a chilled couple of days relaxing and walking.  then the following week we went further afield.  We stayed near Newbury and visited Highclere Castle and Bletchley Park.  Both places we both wanted to see.  I am not afraid to admit it but I am a Downton Abbey mega fan,  it is a programme that i love to watch and they are a bit of a stress reliever for me,  when I want to chill out, I will watch the series.

I love this photo of Simon sat on a well known bench from the series.

Bletchley Park was one of Simons top places to go to and it did not disappoint, it is packed with information and we feel we need to go back to read more of what was on display. A truly fascination place.

We continue to plan day trips and are looking at where we can go next, to be honest going away has filled me with anxiety, on our first trips away in the winter (yes we camped in the winter) not only were we hampered with bad weather but Simon was ill every time we went away and I felt the responsibility and anxiety of having an unwell husband, camper and awning to pack up and get him home safely. I am trying hard to not let this stop me wanting to be away and the last two trips have helped on my gaining confidence.

Simons health on a day to day basis is good, fatigue is something that seems to be getting worse, he most days has to have a rest in the afternoon now, if, for now this is the only side effect of what is going on then I will live with his resting, I know worse is to come. His mental health remains a daily battle for us both, anxiety is a demon for him and nights can be very tricky to deal with. His mood can change quickly due to this and we roll with how this manifests itself and deal with it.

I will make it my lifes work to ensure he is kept safe and as well as I can, if only I could magic some CT scans it would make life a little easier.

Onwards and upwards Mr C

TTFN