The only period of my life where I have repeatedly used the phrase “I don’t want to be here anymore.” The most gruelling process I have ever experienced. Chemotherapy is clean poison and is the sole reason I have been so poorly the past few months, the cancer isn’t what is making me poorly. Nobody can prepare you for what your body goes through during chemo, it is completely different for everyone, which makes it so scary. The doctors warn you of the hair loss, the sickness, potential weight and appetite loss etc, but never did they tell me the chemo would be excreting from my toes and underneath my fingernails, or that I would be vomiting foam and bile every time my chemo was finished.
After my whirlwind of diagnoses, multiple consultants and a couple of operations, my consultant had made a treatment plan for me. When I first heard the word chemotherapy, I always just thought that was one thing – literally one big supply of something that you take to try and cure cancer. But there are SO many different types of chemotherapy drugs. As my sarcoma is stage 4, she has had to prescribe a concoction of four different chemotherapy drugs. How on earth does she know which ones I need and is my body going to enjoy all four??? All rational thoughts at the time, but have you ever been in a position, in your life, where you have to read through the potential risks and side effects, knowing that one of them is death and still had to sign your name along the bottom??
They were going in full wham with the chemo to see what my body can tolerate. My treatment plan typically follows a flowchart of every third Monday, I have 3 days of chemotherapy as an inpatient, followed by 16 hours of fluids and then a weekly outpatient appointment for a top-up drug in between. The protocol for my sarcoma is 9 cycles of this chemotherapy – so in theory it would be roughly 27 weeks of cycles, thus 7 months of treatment and I’m free? That feels like a very long way away, but I can catch up with my life again. It will fly by! Wrong. This is ONLY the first part of my treatment – scans will be taken throughout to monitor the effectiveness and progress of the chemo, and more treatment such as radiotherapy and surgery will be determined at the end of the chemo. More treatment is inevitable because my cancer is so aggressive, they want to ensure it is completely gone and doesn’t return. There are absolutely no guarantees with chemo, it won’t definitely get rid of the cancer, and even if it somehow does, it could always come back at any point.
I’ve now completed five cycles of nine. They have stopped my weekly top-up drug, and have removed one of the four chemo drugs I was having, too. This is just the protocol for my cancer, it doesn’t necessarily reflect the effectiveness of the drugs. I have two tumours, one on the right side of my skull, and one in my right leg. I don’t really know about these as they aren’t visible and I no longer have any pains there. As the chemo goes into my PICC and through my veins, it should be just as effective at getting the tumours as it is the rest of the cancer.
When I go home after having my chemo, I become ‘neutropenic’ within a few days. Chemo destroys not only the cancer cells, but also every other cell too. This means your neutrophils are abnormally low (or 0), basically the white blood cells which fight infections. For ten days after my chemo I have GCSF injections in my leg, to bring my white blood cell count back up (they are SO painful). During this time, I had noticed that surgical procedures and injection bruises were taking months to heal, because my body just couldn’t do it alone. So when I’m at home during these days I’m really vulnerable, and if I show a temperature of 37.5+ I have to go back in to hospital, as it means an infection is brewing and I can’t fight it off. This is incredibly inconvenient and happens EVERY cycle, and I have to go to an assessment unit in Leicester, wait to see a doctor, wait for my blood results, wait for some antibiotics and fluids, and then if there is a bed available, I’ll go back over to my normal ward and probably stay in for at least 5 days. Sometimes I have been home 3 hours and had to go back to Leicester with a temperature. This cycle I had to have my PICC line removed, they literally just pulled it out of my veins but I didn’t really feel anything! The line was carrying a bug and made me incredibly poorly for nearly a week, with a temperature of up to 39.8, so that was the last resort after they tried to save it with antibiotics. This will now have to be surgically reinserted again before my next cycle.
In terms of side effects, I have really struggled with the chemo. The first four cycles I had horrendous sickness. There became a point in each cycle I was being sick every 15 minutes, every time I ate I was sick, so I wasn’t eating for weeks on end. The doctors had prescribed four anti-sickness drugs already, but the only way I could cope with this was to sleep through it. I would be lying if I said the sickness didn’t wake me up repeatedly to vomit, but it helped me ignore the feeling. I remember during one of the earlier cycles, being on the bathroom floor, crying to a point I couldn’t catch my breath. I had just been sick for the billionth time that day, and my mum was trying to reassure me and remind me of the positives, but all I wanted to do was slip down the plughole and never return. I honestly could not imagine a time of ever feeling well again. I didn’t want to spend the foreseeable future feeling like I was dying, what kind of life is that?
Mouth sores. Ulcers. We hate them, especially when they’re covering every inch of your mouth and down your throat. Fair to say, I have been in such agony with these, that I haven’t been able to speak for days, and ended up crying my way through eating an ice-cream!! They are horrific! Because of this I would end up not eating for weeks because of the sheer pain. When you have spent that long not eating, your stomach starts to create acid, which of course has to come out, so either way, eating or not – I was still being sick. I really had the choice between vomiting what I had just eaten, or vomiting acid.
I will speak about hair loss, weight and appetite loss in another blog post, but these were all instant side effects of chemotherapy. I was deteriorating by the second, all the muscles in my legs had gone, I have spent so much time in bed that I can barely walk now. My legs wobble and give way if I even try and walk to the toilet. I am constantly examined for bed sores which luckily I haven’t yet had, and I receive a daily injection to avoid DVT. Some cycles I have had foam underneath my fingernails, I have lost the sensation in my fingertips, my nails are STRONGER and longer than EVER (weirdly), my lips and skin are incredibly dry and pigmented (so I look quite tanned), and my senses are immensely heightened to the point where the smell of someone’s dinner has me vomiting, and my taste buds have completely changed, or I can’t taste anything at all. The chemo can damage the kidneys, so I was on fluids and hydration in order to flush out the toxins.
Anaemia is so common every cycle. Chemo destroys my red blood cells, so I end up very fatigued and dizzy. This is fixed with a blood transfusion every time, I am SO grateful to anybody out there who has given blood, it is such an important thing to do and is honestly lifesaving. Not everyone is eligible to give blood, but if you are this is something you should consider making your new year’s resolution!! I also tend to have platelet transfusions when those levels are low. My periods did stop as soon as my chemo started and I lost all my body hair (yay) and still feel as smooth as a baby – little perks! I am actually considered menopausal now and receive hormone tablets to stop the horrendous night sweats I’ve been having, where I end up changing my pyjamas and bed sheets three times every night.
So all in all I have 2 weeks of sleeping and feeling extremely poorly, and a couple of days of feeling well before my next cycle. My mum and dad take it in turns to sleepover at the hospital with me, as there is a spare bed in each room so you don’t have to be there alone. They have been an absolute God send, and have been caring for me 24/7. Without them, I wouldn’t really be able to do anything. There will be so many things I haven’t mentioned, because I suffer with ‘chemo brain’ which is essentially short term memory loss due to the chemo, but all I know is that whilst this so called drug is supposed to be saving my life, it is making me horrifically poorly in between. Let’s hope my body doesn’t let me down, and that chemotherapy is effective in fighting my cancer! I’m just happy to be home for christmas and spend some time being well with my family, my favourite time of year!!
daisy x x