The chemo day unit (ward 36) is a dedicated day ward where you go as an outpatient to get your chemotherapy. It has a lot of soft red seats and drip stands. There is also a bay with four beds, for those patients who need them and an intrathecal room. There’s five to six nurses there each day who will look after you for the day. There’s also a sister and a number of doctors available if needed.
There’s another side to the ward, the Supportive Therapies Unit (STU), this is where you go to be monitored between chemo cycles and receive platelets, blood, etc.. The chairs in here are blue and there’s also four beds in case patients need them. There are about four nurses on this side of the ward who again are assigned to patients during their stay and doctors on hand.
I always feel a lot calmer in STU, I don’t know if it’s because of the blue chairs, or if there’s less tension in that side of the ward because patients aren’t getting their chemo.
Due to my regime, I would regularly go to the chemo day unit every day of the week. This meant that I got to know all of the nurses by name and they all know me. It makes the process that little bit easier when you feel welcomed and can have a ‘a bit of craic’. Ward 36 would eventually feel like my safe place because it meant that I was well enough to be out of hospital and be treated as an outpatient.
My cycles would run for one to four weeks and when I wasn’t on a cycle, I’d spend a couple of times a week in STU getting platelets, blood or just monitoring my blood activity with my specialist nurse. Like the chemo day unit, I spent so much time at the STU, I knew everyone by name and again, it was nice to catch up and have a chat while getting my bloods reviewed or blood products.
My regime is made up of three phases: induction (part 1 and 2); intensification; consolidation and maintenance. Induction is the most important phase and this is where the leukaemia is really blasted. You have a bone marrow test at the end of phase 1 and 2 to make sure the leukaemia is in remission. If it is, it means the chemo is working and you can move on to the next phase of treatment. If you don’t achieve remission at this stage, the treatment would have to change and a bone marrow transplant would be necessary.
I was told from the outset that as a female, the chemo could potentially leave me infertile but if I had a bone marrow transplant, that definitely would leave me infertile. I was relieved when I achieved remission in the induction stages and was able to move on to the next part :)
My mam and Nathan, my partner, have particularly made my chemotherapy experience much easier to deal with. They have both been there for me whether it’s as an outpatient taking me to appointments, visiting me as an inpatient in hospital or when I’m at home, keeping me company, doing the jobs that I can’t and making sure that I’m eating well and protecting myself from infections. Although they’ve been the two doing the lion's share, my other family members and close friends have been there too to help in whatever way they can. I’m so lucky to have such a kind and supportive network close to me.
My wider network of friends have been fantastic too, in person, on the phone and on social media. They’ve kept me up to date with what’s going on in the real world and listened to me go on about platelets and neutrophils and the like. They’re all super kind.
I’ve been in a fortunate position that work have been great during my chemotherapy treatment. They have been really supportive, which has allowed me to concentrate on getting better. I didn’t think I’d be able to switch my mind away from work but when you’re handed something like this to deal with and the treatment makes you so poorly, it’s easy to change your focus.
The bad and the ugly
I’ve had nine different drugs as part of my treatment so far and what I found was the side effects differ depending upon the drug, but then also depending on the person! It was a bit of a shame that I had a particularly nasty reaction to one of the first drugs that I had, at this point I didn’t know as much as I do now, so I found it harder to spot potential problems.
The reduction of white cells, leaving you with no immune system, is something I was introduced to early on. It was the most important factor during my treatment. The risk of infection is so high and it’s scary the impact this can have. The operation to remove my appendix while I had no white cells shaped my journey and this happened as an indirect result of the Vincristine. In hindsight, you wonder if you could’ve done things differently, but everything’s clearer in hindsight, so you just have to take the experience for what it is and move on.
The wound from my surgery took longer than normal to heal because I was still getting chemo. I found that whenever I had side effects from the drugs, I used to get aches in my abdomen too. I wasn’t very mobile to start with because of my abdomen, so sometimes the time between chemo cycles would knock me for six. This is also one of the uglies, I have a scar reaching from my belly button right down my abdomen. I don’t feel too worried because I don’t show this part of my body very often, although when all of this is over, I’ll have to become a swimsuit girl instead of a bikini one :).
I think I’ve had every single side effect going, but generally they don’t come all at once and some haven’t been as severe as the others. There have been times where I’ve felt so unwell that I wondered whether I’d be able to handle what was coming next. It’s those days that are the hardest, particularly if you have to go for another bout of chemo or to STU for a review, when your muscles and joints ache and your digestion is all over the place and you feel sick, all you want to do on those days is lie down and sleep or watch Holly and Phillip on the TV.
Some of the side effects can be managed by pain relief. I have a lot of solutions for my mouth sores, but I’ve found Caphosol is the best. I have cyclizine for sickness, which came about by trial and error but seems to do the trick for me. Regardless of the medicines, nothing beats a good level of neutrophils to fix some of the problems. I have pain relief for my neuropathy, but all this does is stop the shooting pains down your fingers and toes. Neuropathy is damage to the peripheral nerves so my feet still feel numb or tingly all of the time. It’s mostly irritating and they get really cold, but it can also affect my balance and I find they can ache a lot when I walk about. I had it in my fingers for a while, my handwriting was shocking and I would shake sometimes when I tried to do fiddly things.
Some other side effects just have to be managed by your lifestyle, fatigue and lack of appetite being two of them. I am lucky that I have Nathan, who will not let me do too much (or anything some days!). He makes sure the house is clean (particularly when I’m neutropenic) and makes me appealing meals that I will tuck into even if I don’t feel like it. If it was up to me, sometimes I just wouldn’t bother with food because I either don’t have a fancy for it or I can’t be bothered to make something. It’s swings and roundabouts though because there have been times when I’m taking steroids to support my treatment and it’s eat or be eaten. I enjoy those times because it makes me feel like I’m well when I have an appetite.
Some chemo drugs affected my taste buds and I couldn’t bear anything sweet: chocolate, cake, biscuits, the lot. I also went off tea and coffee for a while, which I used to drink all of the time. Salt and vinegar crisps tasted odd too, like I could smell the vinegar but when I put them on my tongue, the only flavour that came out was the salt. I was devastated because they are my favourite. I also found garlic didn’t taste quite the same, it was really pungent and sour. These coupled with my ‘rules’ of no spicy food, undercooked meat, eggs, shellfish, unpasteurised milk, alcohol or takeaways left me limited sometimes. The way I used to tackle it is to eat whatever I fancied (if allowed of course) whenever I wanted.
When I was losing weight, I was fortunate that I like the Ensure Plus (or now Fortisip) drinks that the hospital prescribed me. They are milkshake-like meal replacement drinks... I found I could drink them on their own or mixed with milk or ice cream. I was surprised how much they filled me up, for something so small they were really substantial!
A side effect I’ve suffered with a lot is fatigue and I find it hard to explain because everyone’s tired, aren’t they?! But, it’s not the same. I can have a full 8 hours sleep, make breakfast, get dressed and do some light housework and later on that day I’m yawning so much my eyes are watering and I can’t keep hold of a book or my phone. Sometimes my eyes water so much, you’d think I was crying.
It’s tiredness like no other, you also feel nauseous and like you’ll either be sick or pass out if you don’t stop and get some rest. I generally find that a nap sorts me out, which while I’m off work and don’t have to be anywhere is fine, but I do wonder how people manage to balance treatment for ALL with work too.
Some days it can take me an hour or two just to get the motivation to get out of bed. I don’t know if this is down to fatigue or whether it was just the psychological effect of either knowing I have to go and get more chemo or of not having anywhere to be. It is so difficult to explain to someone when you’re not even sure yourself.
That’s the hard part of the treatment sometimes, you feel ‘out of sorts’ and you just can’t put your finger on why. In any normal day you should feel tip top after all the rest and relaxation time, but unfortunately your body thinks otherwise and you feel an almost constant tension and heaviness on your shoulders. Particularly during the consolidation cycle of intensive chemo, when you’ve had so much chemo, I couldn’t actually remember what ‘normal’ felt like.
I’ve only been in maintenance for a month and while I’m generally feeling well and the side effects are not so intense, the tiredness is still overwhelming. I keep thinking to myself, I can’t have a nap now, I’ll never sleep tonight, but there’s always enough sleep in me to manage it. I’m hoping this will improve as I work through the maintenance cycle and get stronger.
Sometimes the side effects can come much later than you’d expect. I remember my skin going dark with a yellowy tinge and my mum was worried about my liver. The whites of my eyes were fine and nothing was coming out in my blood, it wasn’t until I was checking my trusty list of common chemo side effects that I found that the Cyclophosphamide causes the skin to darken, which I’d had during my last cycle.
As I’ve gone through my chemo, I’ve lost and I’ve gained weight, at my worst I was under 49kg and I’m currently 63kg, 6kg heavier than when I started. Although I don’t enjoy people noticing my chubby cheeks and some of my clothes are now tight, I’m not in a place yet to start worrying about that kind of thing. I know that things can change in a heartbeat so I’d prefer to be heavier than lighter so I’ve got something to lose if I need to. There’s more important things to think about right now and losing weight will be something I can tackle when the treatment is over.
My veins don’t look too pretty when they get hammered as much as they do. With two lines coming out and two trips to ICU, my veins have taken an assault and the usually plump ones are now battered. I also have lots of bruises from nurses taking blood and sub-cut injections, GCSF (to boost white cell production), Tinzaparin (blood thinner) and morphine (pain relief). The bruises can last for a long time. I am still harbouring one that I got in February!
The baldness is pretty ugly. It’s not just your head, it’s your eyebrows and your eyelashes that make you look like a cancer patient. I didn’t know how to paint them on but I managed to learn how to use makeup to create them, but do often think about men and how they deal with this side. I had no worries about my head because I have my beautiful wig.
My nails were pretty gruesome looking too, they pretty much died half way up so the ends of my fingers and toes became really sore. They didn’t look too pretty and they hurt. I was also very conscious of infection because they often looked inflamed.
All of the things you have to endure and adapt to during chemotherapy is what makes us feel weak and makes us question our strength, so it’s hard not to focus on this during conversations and fixate on the negatives, but without chemotherapy, things would be so much worse. I don’t think I would actually still be here today.
So for every ache and pain, and every jab or scar, I am thankful that I have the opportunity to be cancer free. My hair will grow back, my digestive system will start working again, my scar will look better with time, my feet will stop tingling and my veins will be plump again. In the meantime, the chemotherapy is kicking cancer’s ass for me and I’m grateful for that. I am, however, still hoping that we find better treatment for those who need it in the future so they don’t have to endure all of this stuff :)