When my oncologist received my biopsy results showing that I’d relapsed, I was still trying to wrap my mind around it but he did not waste a single second. He drew up a timeline of the new regimen right away; explaining to me in detail how he planned on treating and ultimately curing my disease for the last time. I am to expect much more aggressive chemo this time followed by an autologous stem cell transplant as is the protocol for relapsed and refractory Hodgkin’s Lymphoma.
Basically my new course of treatment will take place in four stages:
- CHEMOTHERAPY: Two cycles of ICE chemotherapy – To determine whether or not the cancer cells are still chemo-sensitive (Responding to the chemo)
- STEM CELL COLLECTION: If PET-CT scan comes back negative (Cancer cells are gone), High-Dose chemo will be administered, a combination of Etoposide and Cyclophosphamide followed by stem cell collection.
- STEM CELL TRANSPLANT: Finally and the most difficult phase of all includes administering BEAM chemotherapy for 5 days in preparation for the transplant.
- ADCETRIS: An immunotherapy drug which will be given over 9 months following the stem cell transplant.
…and then (fingers crossed) I will be cured – for real this time!
My doctor was very honest, he told me this was going to be incredibly tough and will get tougher as I progress through the stages. I was told to expect much worse side effects and ABVD (the first line regimen that I had last year) in comparison, was a walk in the park. Sounds terrifying, I know, and many would think it is horrible to be told that but I cannot emphasise the importance of knowing what to expect before it happens.
TIPS ON HOW TO MENTALLY PREPARE FOR CHEMO:
Walking into chemo without knowing exactly what drugs you will be given and all the possible side effects of those drugs is like walking the plank blindfolded. I cannot stress on how much easier it is when you know what side effects you could experience before you actually do.
- DO YOUR HOMEWORK: I recommend anyone going through treatment to get all the information needed from their oncologist and then to do their own reading at home. In fact, if you know what your treatment plan is then go ahead and do your homework before you see your oncologist. When I was diagnosed the first time, I read up a lot on my treatment plan, side effects etc. before going to see the oncologist for the first time. Doing so helped me organise my thoughts and feel more prepared, thus diminishing fear of the unknown; but most importantly it became so much easier to follow all the information being presented to me during my first onco visit and asking important questions that I would otherwise have not been able to formulate had I been hearing all this new information for the first time. Also, take notes! This will come in handy when you’re sitting at home later trying to remember just what your oncologist said exactly. When I relapsed I didn’t have the chance to be prepared the same way I was the first time and when I went back home I was more confused than ever. So, during my next visit I asked my oncologist to repeat everything he told me earlier and I wrote everything down in a notebook to refer to if I needed to get back to it later – One of the most useful things I did!
- YOUR BODY IS UNIQUE: Being prepared and knowing all there is to know comes a long way but it is just as crucial to remember that your journey with cancer will be one of a kind; the way that your body responds to the chemo is different from anyone else’s. For instance, with ABVD treatment some people said they suffered from a LOT of nausea and vomiting while for others it was breezy with very little fatigue and were able to go on with their normal daily routine. Personally, I barely had any nausea and never threw up but suffered from immense fatigue and body/muscle pain which I had to be put on painkillers for. Listen to other peoples’ accounts on what happened with them but never expect to go through the exact same thing, because again, your body’s reaction to the chemo will never be identical to anyone else’s.
- DON’T FEAR THE FEAR: When the day comes for your first chemo session, I won’t lie, you will be scared. Don’t try to pretend you aren’t afraid because it is okay to be scared. The reason for your fear is your love for life and wanting to make it through and that fear is what will save you throughout this entire ordeal. The day you lose the fear factor is the day you’ve given up; the day you’ve lost the fight.
- BE POSITIVE: To tell you I am always super happy and positive would be a massive exaggeration so I won’t preach about feeling good all the time because let’s face it, we are going through one of the hardest things imaginable and it’s more than okay to just have a bad day. That being said, if your bad days far outweigh the good then you might benefit from therapy. Remember though, be kind to yourself, you deserve it. That is the best advice I can give. Ask any doctor, chemotherapy can only do so much when it comes to cancer and the rest of it depends on you. When you are in a bad mental state, you are depriving yourself of the best care possible. Derive happiness from the little things around you. If your life, like mine, is interrupted by the cancer and you find yourself lacking any motivation, have something to look forward to each day. Create little goals for yourself and achieve them. Sometimes after chemo when I am way too exhausted to do anything, getting out of bed and showering is a massive achievement. When I am very nauseated but still manage to eat two meals a day, I add a point to “Team Rachele” in the Rachele vs Cancer fight.
From the moment cancer came into my life I could see how easy it is to fall into a downward spiral. I discovered early on that there is so much that I can’t control. Instead of fighting this feeling, I’ve learned to accept it and instead focus on things I can control: my attitude, my positivity and being mentally prepared for whatever comes my way.
“There is no hope unmingled with fear, no fear unmingled with hope.” – Baruch Spinoza
In my next blogpost I will tell you all about my experience with ICE chemotherapy. Stay tuned and thank you for reading! 🙂