Been there, survived that, so yes I bought a T’shirt!

Chemo…what a journey. I naively thought at the start (prior to my first infusion) that I would blog my way through the treatment. Ha ha ha haa haa. I started chemo in the first summer heatwave and have now completed my treatment, a.k.a “sentence*” this week, and we have our first snowfall this morning. *One chemo patient described it to the nurse as akin to jail time, I can see why! Free time between the three weekly cycles was spent on enjoying the little time I had feeling well and trying to squeeze in family time to compensate for the whole load of crap times when I could barely do anything. This has been the hardest journey stage for me and the family. It made the major surgery more of a walk in the park, or could that be the painkillers! Seriously, I preferred the surgery to the chemo and still do.

After studying various cancers and treatments at university, chemo I knew was sort of a battle to kill the cancer cells before killing the body. So, it all seemed pretty physical. It was apparent that chemotherapy was a whole lot more than just a physical onslaught after my first infusion. It something that attacks you mentally, physically and spiritually, mind, body, soul - every level. I remember after my first EC chemo on my first better day being unable to do more than listen to the television, because I couldn’t process enough to actually watch it and even then I could only follow tiny bits of tv. Medicine and the oncology team work really hard to stave off the worst of the physical side-effects, with a heap of extra medication. One of the most useful things purchased in chemo was a rainbow (well why be dull) tablet box that had three sections a day. Though I was still on more meds than I could fit into it at the start of the cycle, plus the injections. For me, the cognitive side-effects were the worst and what I found to be the most challenging. I really felt I had lost touch with the world and nothing felt real. Hence, another essential purchase were two wooden daily calendars so I could attempt to keep track of what day it actually was! Having previously this year made myself the most gigantic organising weekly schedule this was quite a come down. The aim every day was to get from one end to the other and try to help my husband and be a Mama as best as I could along the way. Some days that would mean my effort went on unloading the dishwasher or chopping a carrot and reading one book to my youngest. My world became my bed to hibernate off the worst of the side-effects initially after chemo. The hardest part was that I (minus the hair and make-up) looked the same to my Childers, but I totally felt unable to function the same. Even now, I’m still waiting for the last chemo infusion to work its way through so I might wake up and fell energised and more human Bec.

A crap day but the Childers made us Parentals a romantic meal

Things nobody tells you about chemo…it actually really, really hurts when you hair comes out and it will be a day I never forget. I was awake the night before the day of the shave with my head feeling like it was totally bruised from a major battle. There was no place I could find solace on my pillow that night. So it wasn’t a surprise when washing my hair to have it come out in my hands. As a cold person (not in heart, just in hands and well, feet) I couldn’t face trying the Cold Cap to help try to hold onto my hair. Actually as Autumn has come I am really glad I accepted the way of chemo regarding hair loss, since I watched them comb out ice from one woman’s hair after a cold-cap treatment.

So far, I am the youngest person I have seen in chemo, although there was a man there only five years older one time. I suppose that is a good thing as it means many people are cancer free, if not hopefully well. I did manage to make an Active Against Cancer class and again, I was clearly the youngest, equally I was the only one without hair. It is good to see people get through treatment though.

What cancer has taught me and going through chemo is that mental illness is just that a completely rubbish and truly awful illness. It seemed a bit bizarre to be in the position of enduring some pretty horrendous treatment to stay alive, with the knowledge that not so many years ago I was at the point where suicide seemed the best thing to do. I can only look back and see how truly unwell I was at the time, yet because my brain felt like it was processing rational thought, I didn’t feel necessarily feel fully mentally unwell. It’s a bit hard to explain the darkness of depression, because it is a whole body experience, yet you can mentally process whilst poorly. I could function, I could put on a smile alongside meals on the table. You are unwell in such a different and strange way compared to chemotherapy side-effects. I am so thankful for the clarity I have now over depression, seemingly rational thought in a very dark place can actually be quite dangerous, because you process limited information. If you need help, please speak to someone and I would utterly recommend the book “Lost Connection” by Johan Hari. An amazing read or audio book. I'm not saying depressed people are irrational, it is me trying to find inadequate words to explain something very complex. Perhaps as so often summarised, depression lies and it is easy when the storm clouds encumber the sky to believe those lies.

Getting back to things they don’t tell you about chemotherapy is the emotional side. I was thinking I was doing fine and then it would just all creep up on me as my brain desperately struggled to attempt to process what was going on. Cancer is a journey that’s for sure, just not one you would ever choose; more like you’ve been pushed onto a path you don’t want to be on and are desperately following medical advice in order to rid yourself of cancer and prevent recurrence. Every so often the path takes a surprise route and you wonder if you can endure more. You feel a bit like there isn’t time to breathe in this journey, just pushing on with every day and trying to adjust to what is happening to you and the family. For example, I wasn’t even through chemotherapy before I had to start on the injections to shut down my ovaries and trigger menopause. Admitedly, chemo seemed to have triggered the beginning of menopause anyway, but still a lot to digest in an already difficult time.

I remember spending most of the day crying when my husband took the kids out in the Summer holidays. It was like I was suddenly flooded with tears as I didn’t have to keep being the warrior Mama or wife. It’s the darndest thing when you suddenly have time to yourself to find you dearly want to be out and about being a normal Mama, but your body just isn’t able. It’s the old conundrum of when you have a little baby and you desperately want some ‘me-time’ to find that when the baby is out of your hands, you just miss them and want them back!

My biggest low I did share on Facebook, was at the end of the summer holidays; gearing up for a change in my chemotherapy and looking back on the patchwork of normality my husband and I had worked so hard at to try to give a bit of a Summer holidays feel to the school holidays. I had to put a book together for my youngest, which felt a bit of a farce. I remarked to the lovely printer shop man, “it’s a book to pretend we had a great Summer”, quietly adding to myself in my brain “instead of the realities of chemo family life”. That said, I hope the Childers did enjoy their excursions. I was very grateful for the ones I did manage to go on, even though I had to learn very quickly about pacing and balancing. I also learnt that reaching out can be such a positive. The support of my friends and family after that message was truly touching. I haven’t journeyed alone in this and for that I am more than thankful. Whether it has been uplifting messages, people doing my ironing, people helping me to get food on my table, or neighbours taking my eldest to school, I am so humbly and heartfeltly (I might have made that word up, but it’s a keeper) grateful. Truly grateful.

And I was so thankful for the providential timing of our little Legoland trip. That was an off the cuff plan to extend a stay down south but by the time we came to going we all needed some quality family time so very much. God is good, even in chemo. Admittedly, I couldn’t taste any of the expensive food (another chemo perk) but the kids still talk about this time so much and the hotel room was awesome, as you would expect from Lego! Yes, it was also the occasion of celebrating my birthday with less hair than I had at my actual birth!

After the diagnosis of cancer I decided I wanted this journey to be a growing experience and a learning journey. It has been that for sure. I read a bit in a book lately that reflects that we learn so much in the lows of life, because that is where the ground is most fertilised! ** It is also a journey where I have learned to accept help, without being able to then return it. That is a tough one for me and I still do feel like I should do masses of baking for more than a few people!

Whilst the nine weekly chemotherapies of paclitaxel enabled me to juggle being a Mama better to a degree, for which I am so very grateful, it has also been socially isolating. Just to reinforce that, I received a lovely cancer surgery request on my social isolation. I’m looking forward to catching up with friends more whilst regaining my strength. As to finishing chemo, well still in the anti-climax really. I always knew it would be. I was so excited on Monday to know the end was near, but then there is the realisation that you still have to sit in the chair and be infused with it all, so it will be about a week before you feel better again. This cycle has actually hit hard, my body has had a long four months of chemo and is tired. Despite my My reasons to keep going. T-shirt, there is no bell at the local chemo unit, which is something I do totally understand; for many attendees, chemo is palliative, time-buying or has simply become something to keep them alive for the rest of their lives. So there was no big bell ringing kodak moment, but I was plenty happy with the removal of my PICC-line. And I am hopefully lucky enough to be able to ring a bell and move on in this journey of recovery. My heart goes out to those living in different circumstances and for the breast cancer mothers still juggling family and chemotherapy. You are not forgotten in my heart or prayers.

I’m still going to fall into the lovely group of “immunocompromised” for a while. But we will celebrate finishing chemo as a family. Maybe a meal out or a meal in, when I can taste better again and we have a little bell to ring. I am looking forward to getting stronger and spending time with family and friends, and hopefully also enjoying art and crafts. And getting my house a bit more in order! I am definitely looking forward to Christmas (under a month now, eek) and am hoping to be able to have enough eyelashes to put mascara on again and my lymphnodes still in my arm pit***. I’m not bothered about gifts or present for me this year. So much of what matters can be wrapped warmly in arms not in gift wrap. Right now, I am enjoying the little things in life, like having my first bath today in four months now my PICC-line point is all healed.

** Stick a Geranium in Your Hat and Be Happy – Barbara Johnson

***Mostly for practical reasons, as I recon cooking a turkey will be easier with being able to move my arm. I might just hold onto them as it is 4-6 weeks after chemo that the operation needs to be completed. And then they have started talking about radiotherapy but let’s just park that for 2022.