This post has sat in my draft notebook for a while-I needed to be in the right frame of mind to write it the way I want to. Quite a few weeks ago, I wrote a post detailing my Hodgkin’s Lymphoma journey so far, up to my post treatment scan, so this is an update on that.
I’m going to briefly go right back to the beginning, with an analogy of how I’ve seen my journey as a trip on a boat. I ‘set sail’ on 6th November last year with my first chemotherapy, and that voyage through 12 treatments felt like a long, but fairly straight journey. There were a few rough seas along the way (like pre emptive nausea and allergies to dressings), but through the whole thing the end-a new normal- was in sight.
I finished the treatment, waited 6 weeks and had my scan, then waited another 2 weeks for results. During that time, my little boat had reached the shallow waters on the shore of the new normal. My hair, eyebrows and lashes were returning and my thoughts were turning to my return to work (in fact, I ‘returned’ to work in May, albeit not physically due to shielding). Then, on June 3rd at about 12 noon, a tidal wave came and swept me and my little boat back into the deep. That tidal wave took the form of my consultant calling me for my follow up and results. The first thing he asked me was how I’d been feeling, and the answer to that was fine. (Better than fine in fact, I’d been doing Joe Wicks PE with my kids and could do 40 seconds of most of the exercises with no problems.) He then asked me what symptoms I’d had prior to my diagnosis. At this point, my heart sank-this conversation wasn’t going where I had imagined it would. After a clear scan at Christmas time, I was expecting a brief chat, followed by making an appointment for a couple of months time. Instead he informed me that my scan wasn’t straightforward, and that it had to go to a multidisciplinary team meeting for review.
I was left in that horrible choppy sea for two full days until I got a call to inform me of the outcome of the meeting. Those days were horrid, I felt so sick-must have been all those waves. Then I got the call, I had relapsed already and was going to start on a new treatment (Brentuximab Vedotin, for the medically minded) asap, followed by a stem cell transplant once it cleared up. Thanks to Covid-19, I had to receive all of this news by telephone-I even had to return consent forms for my new treatment by email.
So now my little boat is back in a much stormier feeling sea, and this time the journey ahead is shrouded in mist with an unknown destination. So many uncertainties, questions, concerns. What if the scan at Christmas wasn’t really clear? What if this treatment doesn’t work? Can it still be cured? My anxiety is in overdrive-some days I float along and the seas are calm, others I manage to hit both a storm and a whirlpool in the same day and fall out of the boat with an almighty splash! Unfortunately there is very little help available for the emotional side of things-Covid 19 strikes again-and it is a case of getting on with it and taking a day at a time.
4 weeks on and I have had my first treatment, and will soon be having my second. I’m feeling a little less seasick now, and the falling off the boat days are fewer. Yesterday, though, I woke up feeling like I’d gone overboard without a life jacket and waves of anxiety were overwhelming me for no explainable reason at all. I felt like it all day, and nothing distracted me-only the reminder to myself (thanks Mr C for wise words) that this day will be over soon and there will be a new one. He was right, I made it to the end of the day. As I was reading my son his bedtime story, there was a knock at the door. Mr C answered, and a friend (one of my fellow football mums) had a gift for me from another friend who lives in the next village. In it was a beautiful thing that she had made, and a very thoughtful note-she too has cancer, though a different type.
It was this beautiful guardian angel. The note and gift brought a tear to my eye, but I suddenly felt the strength to be able to clamber back into that boat of mine, ready to continue my journey and start another day. Coincidentally (or not?) purple is the colour for lymphoma. I have hung the angel in my craft room as a reminder to keep going-whether that is gently bobbing on the waves or doggy paddling whilst clinging onto the boat for dear life. My friends from church have also been a great comfort with their words, and I am grateful for that too, as well as all of my other friends and family who have encouraged me.
Today, I felt able to write this post, and hopefully it will help me to keep on moving forwards and process exactly what has happened-because I had no symptoms, it took a while for it to seem real, and even now it feels a bit like I’m in a nightmare and I’m just waiting to wake up.
Sorry it wasn’t a cheerful post, but it is an honest one-there are some crafty posts coming up too. Also, I really wish I could draw, as I have images in my head of my boat journey that I can’t put down on paper other than in words. (Stick people just aren’t the effect I’m going for!)