I haven’t been writing because I’ve struggled to find the right words. More than that though, I don’t like negativity and feel I’m letting myself down if I can’t put a positive or atleast humorous spin on things. Finding the funny side of recovery and chemo isn’t easy. The bad days, awful at the time, fade fairly fast once the good days kick in too which is hugely positive but they are such an important part of the journey that I need to write them down.
It’s been a hard few months, I won’t lie. Post surgery was tough going and treatment is gruelling. I was healing fantastically well but I then got a staph infection in one of the scars that set me back and has left one side mildly disfigured. Nothing that I cant happily live with but it shows how fragile the human body can be.
It’s very strange to feel completely healthy before the cancer was removed, only to feel like I am in an ongoing battle with my own health now treatment is underway. I feel sick, I look unwell on many more days than I don’t, I’m a stereotypical cancer patient all of a sudden.
I haven’t returned to work since surgery in September and I have an unending respect for all those people who manage to maintain their working life through chemotherapy. I can’t begin to imagine myself behind a desk; I don’t have the energy, the strength or the stamina to even contemplate a few hours a week when just washing school uniforms or keeping us fed knocks me for six right now. The 21 day chemo cycle must be difficult for other people to understand because I very much shut myself away from anyone but my closest friends and family, so when I do emerge again on the handful of good days in the cycle I seem fine to anyone looking on. My bald head looks like a lifestyle choice rather than a side effect as I skip along the street with no other visual side effects and my mood is positive, bordering on hyperactive! I had a catch up with one of my managers and I totally understand why he was so surprised that I havent returned atleast part time to work. And his shock when I explained that it could easily be another 9 months before I return at all was obvious. I try to explain that before my 5 perky days, I have had 10 dismal days so nothing has been done at home, with the children, with financial management, food shopping, cleaning. Life is very literally put on hold. My 5 or 6 great days are spent not only catching up on the backlog of the previous 10 but also preparing for the next 17 days when I will be exhausted at the end of the cycle and the nausea will again take over at the start of the next cycle. And I still have 3 and a half weeks of daily radiotherapy to come at the end of chemo which I know will leave me with an unbelievable fatigue.
Friends and family continue to astound me with their unending support and patience through this part of the process. With chemotherapy comes steroids, and with steroids comes an inevitable dip when you stop taking them. This results in extreme anger or crippling sadness and it can last a day or a week. It’s not pretty. I have always tended to shut myself off and cut people out when I am not at my best. I fight against a self-imposed obligation to be the best version of myself for the people who love me and when I am absolutely the worst version, the last thing I want is to inflict that on others. I know they love me regardless and constantly reach out to me on my darkest days, more able than me to see that it is temporary and just a side-effect. But I havent yet mastered the art of letting people see all sides of me – I am if nothing else, a work in progress. Most of my adult life was spent in a relationship where I chose to close myself off from everyone but my partner during bad times which I know now was so very unhealthy and created a lot of issues that could have been avoided had I understood the strength you can gain from your support network.
Chemotherapy also carries the dreaded risk of infection. After cycle 2, I developed a seroma on my left side (a build up of fluid around my surgery site, caused by the removal of 23 lymph nodes). This was the second time I’d had a seroma so didn’t worry as quickly as I should have. The seroma grew and became infected, spreading through a body that didn’t have the strength to fight it off. I went to bed on a Wednesday evening with a temperature touching 39 degrees, knowing full well I should have taken myself to A&E but just too tired to face it late at night. I woke up on thursday morning, praying my temperature had settled but knowing it hadn’t before I even picked up the thermometer. I had already spent the day in the Emergency Department on the previous Sunday with what was, in comparison, a mildly increased temperature. 4 hours and IV antibiotics was enough to send me home on that visit. But not this time.
Having given pints of my blood so far for various tests and investigations, I have learnt that there is really only one thing you are interested in during chemotherapy and that is your CRP level. This is basically an infection marker and the results determine how many truckloads of antibiotics you need this time. I found out recently that if you have full blown flu your CRP will be between 30 and 50. Thursday evening in A&E a lovely young American nurse informed me that my CRP was 186. I should have gone in Wednesday evening.
So I ended up staying 4 days. The worst possible timing as it meant I missed my daughter’s Christmas show that she had worked so hard on with her drama group. I was devastated. She’s almost 12 now and I have been a single parent for half her life. I have never missed the big stuff and only dropped out of a handful of minor assemblies in that time. I spent 2 days of my 4 day stay, in tears.
My previously mentioned, self-inflicted isolation was at its strongest while I was in hospital. I hated being there but couldn’t bear to call friends in either. Hospital visits are horrible and should be avoided at all costs if you ask me. So I spent my 4 days being told off for disappearing! I wandered the hallways and grounds, got coffee and hid away from the ward, easily killing 3 hours at a time and only coming back for 4 hourly IV medication. They were not impressed with my absences but gave up after day 2 when they realised I always came back and wasnt a flight risk.
Ending up on the ward has resulted in me crossing my fingers daily that I don’t get another infection. But if I do I will stop telling people not to visit me as it can be a very lonely place.
I met a wonderful woman during my stay. My neighbour on the ward and she had been through an almost identical breast cancer diagnosis and treatment 4 years previously. She was now back in the caring hands of Torbay with, what they described to her as, an unrelated cancer not stemming from her original breast cancer. Lungs and liver; inoperable; terminal. In her late 60s she seemed resigned to the fact that it was her time and, having lived each day since her BC treatment ended with the view of it being a gift, she was accepting of what she considered her fate now.
We had a conversation that seems morbid out of context but it was actually a real wake up call for me. Not just in that it really showed me the reality of my situation but it has also forced me to take a good look at myself and my future.
In the midst of our many conversations she asked me to consider how long I realistically need before I know my children would be okay without me. See what I mean about it seeming morbid! This lovely lady has lived her life since BC to the absolute fullest and this was made so obvious by the constant stream of family that sat with her during our 4 days together. They laughed and reminisced and held their tears until they left her side, all clearly heartbroken by their impending loss but so happy to be near her in the time they still had. And she was right to ask me the question and make me think.
My outcome was 15 years. Minimum. My daughter will be in her late 20s, hopefully established in whatever career path she follows and possibly even a mother herself by then. My son will be 24, the same age I was when my dad died. He will be qualified to follow his goals and hopefully established in a relationship or with enough quality friendships to support him. They would cope and they would be okay. 15 years is realistic and acheivable with my diagnosis and my age if I pick my life up and continue to live in the same way I always have once treatment is finished.
But it’s not enough for ME.
I want longer. Much longer. I want to see my children marry, hold their babies in my arms, be an active and present grandmother. I dont want to leave them.
So I have to make changes. Big, impactful changes. To not address my own lifestyle and remove all the parts that increase my risk of recurrence would just be so wrong. To carry on living as I have done is selfish.
I have set goals for myself, with the help of a great friend who has always encouraged me to be the best version of myself. I think she sees a potential in me that I have ignored or just missed all these years!
In 2025 she and I are going to walk the South West Coast Path. 630 miles of beautiful shoreline in 30 days. Those that don’t know me may see it as a very long way off and may wonder why we dont just do it sooner, those that do know me understand it to be a realistic timeframe and, probably, quite amusing given my lack of fitness! For me it is more than all of that. From the first day of diagnosis for anyone with cancer, there is a quiet voice, ever present, saying “5 years”. 5 years cancer free is your goal. Then 10, 15, 20. The rest of your life lurching towards scans to find out if all this horrific treatment was enough.
I don’t want to live like that. I don’t want my family to live like that. I am 40 in 2 weeks time and I need to embrace the life I have been blessed with. I’ve always done my best to give my childrens lives meaning and purpose, imparting the little wisdom I have in the hopes they will fill their futures with the things they love. I will never stop doing that but I have realised there is plenty of room for me to encourage myself in the same way.
So to all those that support me through treatment, I have to thank you in advance for the inevitable support I will need after this. Encouragement to get up and go, positive words to help me believe in myself and later on, requests for sponsorship when we’re finally ready to walk off the 5 year voice in my head.
I am off to chemotherapy today and the next set of drugs. 3 more cycles to go but again, not knowing what to expect so a feeling that I am starting this treatment again. The kids still have a week off and I am praying that I am able to do atleast something else with them before they’re back at school.
That said, if anyone wants to take them to see cats, please feel free as I can’t think of anything worse to sit through!!
The Never Ending Ironing Pile 