Holding our nerve

There are many twists and turns in this cancer “journey” ( I actually hate the term journey but for now I cannot think of any other thing to call it).   When I last left you we were waiting for the results of Simons CT scan which was done following an increase in cancer markers.

Time dragged waiting for the call,  the difference in the current times is that we had to forego a face to face consultation and this was done over the phone.  We have a good relationship with Simons oncologist and I know that we have to operate in these ways currently but it was not the same,  and I feel he felt the same. It must be incredibly difficult for him to give negative news over the phone, but as always Dr S gave us his time and expertise.

So the detail of the results,  Simon has seven tumours/nodes currently, in the scan 2 months ago three of the lung tumours had started to alter and grow.  Now, all seven are growing,  they appear to have all woken up from their chemo induced slumber and have started to do what we dreaded they would do.  We were expecting at this point to be put back on chemotherapy but currently that is not going to be an option.  I just need to clarify at this point that even though due to COVID19 there is a stop on new chemo treatments unless absolutely clinically required this is NOT the reason no treatment is going to be given at this time.    The treatment options available for Simon are limited, and when I say treatment I do not mean curative, we are trying to hold things if possible or slow progression. As Simon is feeling the benefits of being off treatment and is feeling well the team do not want to start treatment until it really need to be started,  its a bit like Russian roulette but we are having to hold our nerve a bit. They need to take advantage of its effect and we need to hit the cancer at the optimal time.  This chemo can only be given for a relatively shorter period than his last regime and so timing of starting is the essence.

The hospital team are going to keep a close eye on Simon, so its blood tests every two weeks, chest x-ray in four weeks, phone consultation in four weeks and repeat CT in eight weeks,  this way if things are getting out of control we can reassess the situation.   We are buying time with this,  whilst we have Simon in the best health he has been in for 12 months (apart from the magnificent 7 growing in him) we should be enjoying life, making memories going places……….oh hang on a minute we are on lockdown.  This is a cruel twist of fate that we have Simon feeling good, I have retired, we have a camper van on the drive and we are stuck.

I feel frustrated for us both, whilst we are so fortunate to have a beautiful home and garden, I can see every day the effect this is happening on Simon,  making memories does not always have to be done away from home,  and we are making the best of things but I would dearly love to be away in our camper van, seeing family.  We feel deprived of family time,  time that Simons children can spend with him.  Both our families and Simons Mum and Sister have not been able to spend time with us.

These are challenging times for everyone, and the world we now live in is different, and will remain so for a long time,  this time has affected us all.

We have no bucket list,  we have no grand desires, we just want to do simple things.  Sadness and fear take over us,  nighttimes being the worst time for Simon where he gets gripped with fear.  I feel lost at the moment,  scared of the future, being on my own and mostly being without Simon,  I try to put those fears to the back of my mind but they haunt my dreams.

We decided a week ago that even though Simon is one of the “shielded” people we would take advantage of having Dartmoor literally on our doorstep.  We can walk onto the moors from our home and do so for up to an hour every day, even the days when we do not feel like going out, we go.  The moors is perfect for our mental health,  we feel the fresh air, we are watching the lambs and foals appear and this has generally saved us.  We count ourselves as fortunate to be in this beautiful part of the Country.  It is also a place we can very safely go and see and have contact with no-one.  Yes this was a risk but actually the benefits far outweighs the risks to us.

We are watching and waiting to see what happens in the coming weeks, we are hoping that things do not grow too quickly and when restrictions are lifted a little we can venture a little further.  We know when Simon goes back onto chemo it will be a tough cycle regime and so his health will deteriorate with the treatment.  We await restrictions to be lifted, we keep Simon well and look forward and not back.

As always, onwards and upwards my Mr C

TTFN