Wow! Doesn’t it feel like we are in the middle of some disaster movie, and you wake up every morning thinking you have had this weirdest dream and then realise this is reality.
I have never known anything like this and never want to again, at the beginning of this year I do not think any of us could have seen this coming. I think this will change our lives forever, the number of people affected and who have sadly lost their lives is a staggering number and our hearts go out to all of them.
Usually we see our families a lot and not seeing them is very difficult. We have used video calls to both our Mums and family members which is a great way of keeping in touch and seeing each other.
We had before the initial lockdown started to reduce how we were socialising and also taking care where we went. Mostly I did the shopping to reduce the risk to Simon and he just went out locally and to families houses.
However we then received information that he was one of the identified 1.5 million high risk people, it was quite surreal even if it was not totally unexpected. it was via text message on the Sunday evening simply saying he was a risk, to log on and register with Gov.co.uk. It was a strange moment and one that was unsettling, Simon was now going to be housebound for 12 weeks at a minimum. The following day I went to do a needed food shop, but just by doing that it meant that we had to separate ourselves for 14 days, this meant sleeping, sitting, eating etc. We are very fortunate that we do have room but Simons mood dropped at this thought and so a radical move had to be thought of.
When we began this lockdown we had been booked to go away in the van and so I said “why don’t we set the van up on the drive, with awning etc, it will make us feel like we are away. And so this is what we did, Simon actually slept in the van, the neighbours thought this was highly amusing.
Some things were organised really quickly, our GP practice phoned and trialled video calls with Simon, they also put arrangements in for prescriptions to be done over the phone and that they would be a priority for him. The Oncology team changed his appointment to a telephone appointment which duly took place. We had decided for Simon to have a three month break in treatment, this was with agreement by the Oncology team and something they recommeneded by them due to the effects of chemo on him. The plan was that he would have a scan in May and see from that result what the next plan is. This comes with anxieties as to what is going on inside him during this time. I cannot stress how the mental anxiety if the greatest issue now for Simon, his side effects of the chemotherapy are reducing, fatigue still blights him but he is getting around and able to do so much more than he was, but his mental health is something that we deal with on a dai
Whilst his healthcare needs were met the one thing we had difficulty with was food shopping, as a high risk person we were told that Simon would be given priority food deliveries from supermarkets, this has been a challenge to arrange, we did receive the Government food parcel, this was a great surprise. Whilst we were waiting for the cogs in organisation between Government lists and supermarkets to get things sorted my sister did a food shop for us. However after two weeks and some media interest we have managed to succeed in getting slots for food delivery. This makes life easier and whilst I am extremely grateful to our family for helping us am glad that we have this sorted and so reducing the risks to family members having to go to supermarkets more often.
Like most of you we are enjoying the change in the weather and spend time gardening and really just pottering, we cannot do anything else and feel privileged to have some outside space to go into. I do think our garden is going to look amazing this year. This does not distract from the fact that we were going to use the time Simon was off chemo to have some camper van adventures and be free from hospital appointments, the lockdown has put pay to that and it is very difficult not to feel bitter about our situation and cheated. I know we are actually safe within the boundary of our home and are fortunate to have a garden to be in.
Until 6 weeks ago we were frequent flyers at the hospital and to suddenly have that break whilst was good in a lot of ways it actually creates anxiety, you feel suddenly adrift with no lifejacket. This week Simon called to check on scan dates and follow-ups, it just was going to give us a way point to feel more secure. He was told that he his scan would be at the end of May however they would like a set of bloods including CEA (cancer markers) just to keep tabs. The lovely Registrar said she would call us with the results. This created a feeling similar to scanxiety, not sure why but we both felt anxious that the cancer markers were going to show something. After a couple missed calls the dreaded results were in. Simons cancer markers were raised, in fact they were the highest they had been for four years. This shows that something is growing, So an urgent plan for a scan in the next week is being put into place, with the need to get Simon back onto some chemo regime quickly, we then hit a problem of Covid19. With this a lot of chemo has been halted, new chemos not starting and the risk of chemo vs Covid19 needs to be assessed. On top of this we have been told Simons oncologist has changed, new Consultant is looking through all of Simons notes. We will see what decision they make.
This news has been devastating for us both, we are scared and worried about what the next few weeks will bring us, Coping with cancer is one thing but Covid19 thrown into the mix has given us an extra hurdle to work around. So we live in lockdown still , marking time and waiting for the date and time of the CT, this will then have to be reported and a clinical decision on what happens next made. We feel that time is against us and have so many questions. As always we will regroup and sort out a plan.
Onwards and upwards Mr C