As I write this it has been 18 weeks since I became hugely aware of covid-19 and the effect it was going to have on everybody around the world. Society as we knew it was going to have to change as now we have some drastic measures that must be in place to reduce the amount of lives lost from this invisible killer and protect our health system. I’ve always believed we should all try to protect our NHS every day irrespective of a pandemic – respect it, appreciate it and be thankful for it, it will be there when you or your loved ones need it.
It is also 16 weeks since I and we as a family (thankful to have had them beside me) started shielding and, for anyone that wonders, that’s a few steps more challenging and drastic than just the lockdown other people have experienced.
Shielding is for the people that the govt has preempted to be the most vulnerable if they were to catch Covid-19, this involved alot of cancer patients wether on treatment or not. The simple first instructions were stay at home, literally not leave your house and open the window. This became a bit unreleastic and I was then advised that i could use the garden and be around (all be it 2m away) people in my household as we were all shielding and not leaving the house, not even for groceries (thank you for everyone who has supported us with food deliveries, posting letters and any other random bits we have needed doing). Further down (10 weeks) the line I was advised that for my mental and physical health I could go out for short exercise at places and times that I knew would be quiet and where possible not come into passing of anybody and this is where we are still at 14 weeks later. I didn’t leave my room for nearly 4 weeks and I didn’t leave the house (except for hospital appts) not even for exercise for 10 Weeks.
Treatment, well that was all thrown up in the air, had been some reports made suggesting and showing that cancer patients were being categorised into priority if they were to contract covid – 19. Well let’s say being category 6 was not good and might has well have written next too it – you are fucked and we won’t be able to treat you and unlikely would be treated with a ventilator and basically was bottom of the pile, was actually in some other pile (probably called, don’t consider unless we are bored and not got many people to treat).
What did this also mean for my cancer treatment and chemotherapy, for those of you aware my treatment was already a bit up in the air as I had recently just rechallenged FOLFIRI and Cetux, so was clutching at straws a little bit, but hey i’ll grab hold of anything if it provides a little bit of hope.
Prior to my next appointment cancer treatments priorities had also been banded and once again I was group 6:
“Priority level 6: • Non-curative therapy with an intermediate (15-50%) chance of palliation. • Temporary tumour control and < 1 year life extension.”
Sat bottom of the pile so I was preparing myself for a fight at my next appointment to convince them I was still worth a shot and that I needn’t worry about covid-19 without chemotherapy the cancer would kill me over the next few months. An article in the guardian…https://www.theguardian.com/society/2020/mar/19/cancer-patients-coronavirus-outbreak-difficult-decisions
This summarised my feelings very eloquently and from the heart especially the paragraph below:
The decisions needed to be made and I’m pretty sure it was going to be a fight for me to feel they were in my favour and who wants to have to pick between chemotherapy and increase risk of catching a life threatening virus. Off I go to my appointment on 23rd March. It also happens to be the day I get my scan results, which seems to have totally been overlooked by everything else that was happening. Well results weren’t great but they weren’t terrible either some very very minimal growth in 1 or 2 areas so suggestion that the chemo is still perhaps keeping it at bay, however not going to last much longer! The next words though are we arent going to be able to give you treatment due to covid-19 main reasons being safety, staff availability and drug availability. As expected they knew I would not be happy with this and as per Dr Awesome was right, we both knew without treatment I was pretty much a write off it would either be covid or cancer that got me! Dr Awesome makes me aware though that the decision is out of her hands 👐!
Well who’s hands is it in? That would be the oncology lead and director of Cancer Services of the hospital and thankfully for me that man is Dr Strong Name. So Dr Awesome is trying to get hold of him, she tells me to wait outside where I’m not ashamed to admit it I lost it. I just cried and cried and walked around alot and then finally sat myself on a bench and made phone calls and chatted to a member of the team (thank you for that, you know who you are).
Until Dr Awesome let me know she had chased Dr Strong Name down and we could see him now as always Dr Awesome had my back. After he carefully explained all the scary possibilities and reminders of the deadly virus, he agreed that if I was aware of this and wanted to take that risk then treatment could continue whilst drug availability and staff were available.
Like I said chemotherapy is vital. Without it, my disease spreads like wildfire. Treatment here I come on the 25th March. Things are a little different now, I’ve been moved to a seperate building from main hospital and way more distance between chairs and patients and you are not allowed to take people in there with you and hand sanitiser is everywhere (thankfully I brought the hand lotion too).
Chemotherapy seems to go through without a hitch, glad to see familiar faces even though in an unfamiliar setting. Crazy how you become attached to some settings and just the normality and routine of regular places. Well that is round 99 done and dusted!!
Back off to isolation and my room, weirdly the hospital felt like a treat, seeing different people, communicating with people, sat in a different chair, different 4 walls and a drive to and from the hospital felt like escaping. Well as the round of chemo goes on something is not right all goes okay until time for my pump to be removed, which I am now doing at home to prevent and lower risk of infection. So I get to the part to detach chemo line etc and it just won’t twist and won’t undo we try everything we can with what we have at home there is no budging!! Hulk has certainly tightened this one.
So the one thing I was trying to avoid was inevitable have to whizz up the hospital, thankfully they encounter the same problem and it wasn’t a simple fix. Pump detached and now let’s get through the weekend and out the other side of this chemo round.
This did not go to plan and on Sunday I have an uncontrollable temperature but no other symptoms, as normal I take the ignoring action, but this doesn’t work and I’m in a full on fever so time to give them a call. They, like me, want to avoid the hospital but not really any other choice and they don’t seem keen on the wait and watch. So up to A&E I go, I know this will be scary as I will have to go through all the covid area as fever is one of the symptoms, on top of that having to go alone. Very strict entry guidelines on the door and feels very organised and some other world with the amount of PPE.
Thankfully they seem to believe mine is just chemotherapy related so instead of going in the covid Amber or red zone, I get to try and limit contact with infection and head off to a side room, where blood, infection and covid tests are taken. I’m used to the bloods by now but the covid swab that pretty much hit my brain through my nostril was a little strange. Bloods come back and they can’t see a sign of infection, unfortunately until my covid test comes back I have to be moved to an Amber ward whilst I await the results, they assure me it’s all air pressured and won’t put me at any extra risk.
However a Dr comes over and explains to me due to my disease etc they are not sure what treatment, if any, they would be able to provide and would I like to consent to treatment or no treatment! Mate, I have not fought this far to not have treatment. Then the next question, which from what I read I knew was coming, do I want to sign a DNR. This is something I have discussed before for when my disease progresses but we are not there yet and I wanna give both these all the fight I can so NO I’m not signing a DNR. Off to the covid ward I head the amount of PPE is good to see for them, but also doesn’t half make the place a little more intimidating, Dr comes in in full PPE I know or can see nothing about this person in front of me (what a tough task for Dr’s that rely on building that connection to help people feel safe) at around 6am my Covid test comes back negative and all bloods are clear so with some antibiotics I can head home and try and beat whatever this is in my body.
Nurse comes in saying I need to wait for antibiotics. I am not staying here any longer than needed so explain I have them at home so I don’t need to wait, he then says do you not want breakfast before you go. For anyone who doesn’t know I don’t touch hospital food, so breakfast on a covid ward was last of my desires, so I explain no and off I go with my discharge note in hand, straight in the bin that goes less cross contamination stuff the better.
Hands sanitised and off home I go, straight in the shower and in bed to try and fight this fever away. Finally the week moves on, fever goes and I begin to feel normal, thankfully Round 1 (in isolation) done and round 99 complete 😊.