Navigating COVID-19 during chemo and how I’m doing – An update from Holly

Hello everyone. So many of you send me messages to see how I am doing and I am so grateful for them, thank you all so much. I’m afraid I have not been able to write back to everyone and I’m so sorry for this. I wrote a post this morning for those of you who would like to know how I’m doing.

The past few weeks have not been the easiest, for a number of reasons. Three weeks ago I went in for chemo and my bloods showed my hemoglobin was getting low. It was 8.5. Under 8 is the cut-off for receiving treatment so I was still above that, and treatment went ahead, with a blood transfusion planned for the following week. It’s fair to say it really knocked my socks off that week and my hemoglobin must have dropped way below 8 in the following week. I had quite a few days of feeling utterly exhausted, where walking up the stairs would leave my heartbeat pounding in my head or I needed to rest when I walked from one room to another. That, my friends, is low hemoglobin. How important our red blood cells are…

Making tough decisions

I was due back in for chemo and a blood transfusion the following week but with the COVID-19 Coronavirus outbreak just starting to kick off in Ireland combined with the fact I still felt so weak, I called my hospital to cancel. This wasn’t a decision I took lightly, believe me, I thought long and hard about it. Ultimately I didn’t want to risk going to the hospital when my bloods were so low, the virus was kicking off and I was sure in myself anyway they wouldn’t be able to do chemo anyway due to my bloods. My team said they thought this was a wise decision, rescheduled my appointment and I started to lay low at home to try to recover.

Throw an infection into the mix…

What I had planned was a couple weeks at home to rest, eat really well, take all my supplements and ultimately re-charge my blood, the old-fashioned way (i.e. without a blood transfusion). Unfortunately on the day I was due in for treatment, I developed a kidney infection and needed to go see my GP for antibiotics. I did this sooner rather than later and I’m so glad I did, because later that day I developed a temperature of 40 degrees and couldn’t stand without feeling like I’d pass out. An infection combined with low hemoglobin is no fun at all. I panicked a little when I called my team – they wanted me to go straight to A&E and that was the last place I wanted to be.

Did I have COVID-19?

My team were worried I could have COVID-19 because I had a temperature and I told them I felt breathless when I climbed the stairs in my house. They said to me that was two out of three of the main symptoms. In my panic and through the 40 degree temperature haze, I almost thought I did, too, and it was terrifying. But I drew on some inspiration, sucked it up and listened to my instinct. I just knew in myself, somehow, I did not have COVID-19, I just had to listen carefully to my body.

And my body told me it was a kidney infection and low hemoglobin.

I know my team were just doing their jobs, telling me to go to A&E. I know how serious a high temperature is during chemotherapy (please, make sure you are familiar with this if you are a cancer patient, it could save your life). But A&E during a pandemic that was just starting to spread – I didn’t want to go in, I couldn’t risk it. In the middle of the panic of rushing around packing my toothbrush and a few hospital bits, I stopped, sat down and thought very carefully. My Husband and I talked over all the options. Eventually I decided to try stay home and get my temperature down myself. If I did not start to feel better rapidly over the following hours as my antibiotics started to work, I would go in to A&E later that night. But I was going to try avoid that first.

A narrow escape

I took two paracetamol to bring my temperature down, lay on my bed with the windows open and sprayed my face with a cool thermal water spray (such a good purchase). After an hour or two, my temperature had come down and I felt considerably better. Hooray! Our plan was working. We put my toothbrush back in the bathroom and I got into bed at 8pm and slept. The next morning, I was much better again. The antibiotics were working now. Oh thank goodness for antibiotics when you really need them. And so we managed to avoid the hospital visit. Phew.

I improved day by day after that, the progress felt painstakingly slow while I was in it but it consistently happened with each new morning, I was a little better each day and it all added up.

Eventually my energy came back and by the end of last week, I was almost back to myself. We were even able to take our campervan out for a blissful ‘isolation trip’ to Wicklow before the lockdown began.

It lifted my spirits so so much. Isn’t the body an incredible thing? It never ceases to amaze me.

Back to chemo

So maybe now you can understand why it was with a little bit of trepidation that I headed back into my hospital yesterday to start chemo again. The day went well though, and I was impressed with the strict processes operating in the hospital to keep COVID-19 well away from the Oncology areas (if you follow Happy Magazine on Instagram, I was sharing the measures in my Stories yesterday).

My bloods were indeed back up – the all-important hemoglobin was 9.5 – and I got my chemo in the afternoon in a very, very quiet Day Ward.

I would like to say a heartfelt well done to our Oncology Health Heroes, working hard to keep chemo going for those of us who cannot afford to have it cancelled or postponed – I was so impressed by them all yesterday. They’ve all swapped their normal attire for hospital scrubs and face masks (even my Consultant Professor), washing their hands constantly and doing their best to keep the Oncology ward a safe zone for all of us.

Scan on the way

Today it is the morning after my chemo infusion. I am feeling weak and I know it will be a few days before I start to feel better again, but it’s okay. I can do this. I will be having a check-up scan on 17 April. There’s not long to go. The next 15 days will be me putting in all the work I can before my ‘test’! As my Husband tells me, a scan is just like a school exam, you’ve got to put the work in beforehand to get the results. I’ll be ‘cramming’ until then – vitamins, supplements, my complementary therapies, eating well, minding myself, light exercise.

My Health Hero ❤️

Just on my Husband. I am so grateful to him. He is my carer and has been the glue keeping the house together the past few weeks. Doing all the grocery shopping, cleaning the house, doing the laundry, ironing, making meals, sometimes all the meals, every day, for us both and our young son.

He’s doing the bedtime routines, the bathtime routines, anything our son needs when I cannot do it myself. He has made me dozens and dozens of cups of tea and helped me through all of my difficult moments these past few weeks. He’s not a ‘there, there, it’ll all be fine’ kind of guy, rather he shares inspiring and motivating strategy tips, videos, podcasts, snippets that he learns online with me, giving me the tools to keep my mindset strong. He has incredible mental strength.

It was some of these very tips he told me that helped me realise I could stay home and try work through my temperature situation – sensibly – if I didn’t give in to the panic. What a man, right? I know how lucky I am, I really do.

Cocooning

In terms of COVID-19, I am indeed cocooning. I did go for a walk yesterday before chemo because it was the first day I really felt well enough for a good walk, and I knew after chemo there would be no walking for a few days. I kept well away from anyone I passed on the pavement. It did me the world of good. Now I’m tucked up safely at home once more, and I won’t be going anywhere, or seeing anyone other than my Husband and son who live with me. If I do go out for a walk, it will be around the block and very early in the morning, before anyone else is up.

I desperately miss having visitors. I also miss being able to order a takeaway when we are both too exhausted to cook (we’re not taking any chances). A friend of mine delivered a homemade quiche to my door last week and that was such a treat – something we did not have to prepare!

I’ve seen online that Kayla’s Kitchen are still working through this crisis – they make delicious, healthy frozen meals delivered to your door – a really great option if you are in a similar situation to us, or would like to help your own family members who are cocooning.

When I have no energy to be active around the house with the usual chores, I am working on a special Happy Magazine project on my laptop on the couch. It’s lovely to have something to focus on and has really kept my spirits up. More on this soon, I promise.

I’ve also been listening to West Cork, a gripping series on Audible about the 1996 Sophie Toscan Du Plantier murder in Schull, Co Cork. It’s a great (creepy) distraction. When I need some positivity, I’m listening to Thriver Talks, Síle Seoige’s Ready to be Real and Dr Rangan Chatterjee’s podcasts. They never disappoint. I’ve also been baking scones and banana bread!

A cancer trial – in San Francisco

The other thing to tell you all is, an opportunity to join an impressive cancer trial in San Francisco has come up. I found out about it from a fellow stage 4 TNBC thriver who introduced herself to me during chemo a few weeks ago (the universe moves in mysterious ways!) and our oncologist (we have the same one) likes the look of it for us. We got in touch with the trial team, sent our medical files and biopsy samples (which scored well for their drug!) and they are keen to have us both join as soon as possible. This is excellent, potentially life-saving, news for us. Here is some info about the trial if you are interested.

Travel to San Francisco for an initial face-to-face consult and to learn how to self-administer the trial drugs will be essential. As will travel every six weeks for close monitoring of our progress on the drugs. We’ve tried to see could we get the monitoring done here, but it’s so specialised it doesn’t look possible so far. The trial itself, miraculously, is free. We will just need to fund the travel, accommodation and expenses, something we will figure out, I’m sure. But right now, with COVID-19 on the go and travel bans worldwide, we won’t be able to start this trial until things stabilise and flights get off the ground once more.

In my heart I know I just need to trust the universe, trust God, that this will happen if it’s meant to be, but it has also been something worrying me these past weeks – what if it’s all ‘too late’ when we finally get there, what if we catch COVID-19 on a plane trip, what if it doesn’t work for us, what if, what if, what if… Boy, have I learned that ‘what ifs’ are not good for us. When I can, I catch myself and bring myself back to the present, saying, I will not look into the future with my ‘crystal ball’ today!

Let’s (continue) to do this thing!

So that’s where I am at the moment folks. Not the best few weeks, sure, but not the worst either. Just another chapter in the journey. Got to keep going. One day at a time. Do what we can, when we can. Make the most of every day, because every day really is such a precious gift. Don’t miss the special moments. Embrace the laughs where you can get them. Count our blessings. And carry on.

Sending you all love and my best wishes. Stay strong, we can do this.

By Happy Magazine Editor, Holly Kennedy.