• Claire Allison

I went to parkrun three days post op, still with my drain in situ!

I laughed when they took me into the little room of sadness, as I called it. I don’t remember if I laughed out loud or in my head.  It had a small table in the middle, with a box of tissues on top. Surrounded by low comfy chairs. I mean you know straight away when you see the box of tissues. I turned to my friend and said ‘well that’s me screwed then’. Then the consultant came in and she was doing that sympathetic head tilt thing and the look on her face confirmed my diagnosis. I don’t think I was supposed to laugh, they didn’t seem to find it funny. But I’d gone from being one of those women who thought ‘why would I get cancer?’ to one who thought ‘why wouldn’t I get cancer?’  I’d had a really rubbish six months leading up to my diagnosis. Loss of vision in one eye on two occasions led me to the stroke clinic. I remember sitting there crying as they told me I had dangerously high cholesterol and needed to go on lifelong statins and blood thinners. I wailed to the rather uninterested stroke consultant ‘but I’m 47, I run marathons, I’m vegetarian and most of what I eat is organic. I don’t smoke or drink and I’m not overweight’. None of that mattered as I was bundled off into the system for checks on my heart, lungs and vascular bits. ‘Why me?’ became ‘why not me?’. I coped throughout that ordeal, stoically going to every appointment bravely and without fuss. I started seeing a much nicer stroke consultant, a lady I knew from my village. She was so kind to me. Then once they’d decided what was what, I fell apart. Anxiety over my health led gradually to anxiety at work. I began to feel like I was a fraud, that I wasn’t capable of doing my job, that one day very soon someone was going to suss me out and realise I was a terrible nurse. I wasn’t of course, I was fine. I just didn’t feel it. My partner of three years initially tolerated me being on statins but started to nag at me to look for natural ways to reduce my genetically high (as it turned out, thanks genes!) cholesterol. He became critical of my compliance with the hospital doctors and medical treatment. Of course having worked in the NHS for 30 years, I had more faith in what they had to say than him. When that relationship ended I was devastated. I remember having coffee with a friend, and she told me that it could be worse, I could have breast cancer. I still laugh at that now. Somehow in the middle of all the stupid ‘old peoples’ medication, heartbreak and severe anxiety, I noticed some small spots of blood on an old t-shirt that I wore in bed. Brushing it off as old stains that hadn’t come out in the wash, I did nothing.

The next day, a new old t-shirt worn in bed plus my bra had more small spots of blood. I thought it was strange but I’m a bleeder now because of blood thinners, so wasn’t too alarmed. I went to my GP anyway, taking my t-shirt and bra with me in case they didn’t believe me. Not only did they believe me, they referred me without hesitation to my local breast care clinic. That was August 29th 2019.

I first went to the breast clinic on September 3rd, one year ago today that I am writing this, so understandably it all feels very raw still. The staff in the breast care clinic were amazing. Different to any other department that I had been to. They were so kind, and so lovely. They didn’t mind that I cried most of my way through the appointment. I knew something was up when they asked, rather incredulously, ‘you didn’t come here alone did you?’ I knew then that it wasn’t good news. Ten mammogram squeezes, one breast exam, an ultrasound scan and three biopsies later I walked out, and headed home to my kids. Luckily they were out at cadets, so I had time to compose myself. I’d lied to them and said that I was at a stroke clinic appointment. Rather stupidly I overreached for  the washing up liquid, and pulled something in my boob, around where the biopsies were taken. More blood than I was comfortable with came pouring through my dressing. I cried again, scared that I’d done some awful damage. My kids (then 14 & 17) came home to find me sobbing over the dirty dishes. I told them the truth in the bravest, most positive way that I could. One nearly fainted and the other threw up. I can’t remember which one was which.  And thus  began the roller coaster ride of having breast cancer. I was called back the following Thursday (results day is always on a Thursday, a day I grew to hate). They confirmed what I already knew and said I needed more biopsies to see if it had spread to my lymph nodes. I needed a mastectomy, and it would be done within two weeks. My friend stayed with me so that I could tell my kids. They were amazing, so brave and positive. Fast forward another week, more biopsies (10 in total, my boob was varying shades of green/yellow to purple/black due to blood thinners) followed by an MRI (I cried through that too, not good when you’re prone, gravity and all that), chest X-ray and more appointments. I dismissed reconstruction straightaway. I have utmost respect for those women who do choose it, but I just wanted to get back to normal as quick as possible. Out of the three options only one was available to me, the implant. I didn’t have enough tummy fat for that one (lockdown has seen to it that I probably do now…) and the muscle flap rotation thing wasn’t good as I’m a runner. It was an easy choice for me, I told her to get rid of it and take the other one too. She couldn’t of course, but my feelings towards my remaining boob are unchanged. If I could go flat I would. She couldn’t spare my nipple so I didn’t see the point in trying to make a fake one.  My friends and family were incredible. I didn’t tell my elderly parents until I had all the information at hand, about three weeks in, they were shocked. It must have been hard hearing that their daughter had cancer. And that she’d had two mini strokes, high cholesterol and split from her boyfriend. Everything that I’d tried to shield them from came tumbling out. The worst had happened, none of the other stuff seemed as bad in comparison.  People often describe people with cancer as fighters, or survivors. That we are fighting a battle, one that we either win or lose. I’ve always felt extremely uncomfortable with this thinking. For me, my experience was that I was very passive in the lead up to surgery. I was told when to turn up for hospital appointments, and I did as I was told. I wasn’t fighting anything, my surgeon was. She was the one who got rid of the cancer, not me. I just went with what they told me. I hated the implication that if you were cleared of all cancer in your body, that you had won the fight. And that if you died you had lost the fight. This just made me so angry, for the people who had died from this vicious disease. Because they lost the fight, did that mean that they hadn’t tried as hard as me to fight cancer? No, absolutely not. I challenged anyone who said this to me, except maybe my daughter who felt that I was strong and a fighter. I didn’t want to dent her idea of me. Not at 14.  I continued to remain positive and upbeat in the time leading up to my mastectomy. I knew that there was some lymph node involvement and this concerned me, but mostly I tried to laugh in the face of the cancer, determined it wouldn’t break me. My lovely stroke consultant, on hearing the news, told me that my sticky blood was almost certainly caused by the malignancy. I still had to stay on blood thinners for life but I had answers at least. There was one evening where I didn’t know what to do with myself, or where to go. I knew I didn’t want to be at home, but I didn’t know where to go. I wanted to be anywhere away from myself and my thoughts. I drove to Sainsburys and whilst in the car park surrounded by boy racers, I rang my very new boyfriend (we had our first date three days after my initial trip to the breast clinic) and we talked for hours until I felt better. Over the course of time before my op, I did of course get very scared. Scared that it had spread to the rest of my body, scared that I was going to die and not see my kids grow up. I told my new boyfriend that he didn’t need to stick around, that I understood if it was all too much for him to take on so early in a relationship. He told me that I was very silly, something he still says a year on. He took time off to be with me for my surgery. We had a hurried introduction for him and my kids, ordinarily I would never have let them meet him so early on, but cancer changes things. I didn’t want the first time they met to be in my hospital room.

Week one I was fine post op, up and about and determined to get on with things. I went to parkrun three days post op still with drain in situ,  which had been a goal leading up to surgery. I only walked the 5k but that exhausted me. It was stupid but I don’t regret it, I needed that mentally.

Week two I developed terrible pain, resulting in a trip to A&E. I ended up on loads of pain killers and I missed parkrun that Saturday. 

Two weeks after the op, again on a dreaded Thursday, I got my results. They hadn’t found the suspicious lymph node during my mastectomy, so I had to have further surgery. This devastated me. Due to extreme pain and lack of arm movement, I was sent away to take stronger analgesia and to do enough physio exercises so that I could get my arm up above my head enough for an ultrasound scan. This took a month and in the meantime, new boyfriend took me to Scotland for an amazing holiday. After my scan they gave me a date for the 2nd op. There was discussion over whether I needed chemo or radiotherapy, possibly my ovaries might need to come out so I could have specific treatment. 

Until that point I felt that I had been positive and strong, and this news floored me. I think that was the point when things hit me, I started crying a lot more and I was really fed up. Each time I went to clinic, I was told something different. My head couldn’t keep up with it all. I didn’t recover mentally  as well from the second op, it seems that their search for the elusive bad lymph node had set me back to where I was after my first op. Physically I was similar but still taking the enormous cocktail of analgesia that I'd been on all along. I started driving a lot quicker the second time, I felt less inclined to ask people for help this time. My boyfriend went to Africa for a fortnight, a pre arranged trip from before we were together. I had grown to totally rely on him and this temporary separation was so very hard. I decided to do something every day that made me happy, and post a photo on social media. This helped as I had to find something every day and it stopped me wallowing too much in self pity. The night before my results appointment I attended my daughter’s school Christmas concert. A rather insensitive speaker gave a speech on cancer and how eating meat can stop you getting cancer. I sat there in floods of tears and eventually had to go out. The speaker was a retired breast surgeon that I knew quite well as I used to scrub for him in theatres. He had no idea of my distress, luckily my daughter was more cross than upset on my behalf although my tears did set her off.  The next day I went back to clinic for my final appointment, with my friend at my side. They had got the affected lymph node and I was clear from cancer. I rang my boyfriend in Tanzania, with no care to the cost,  and over a rather bad line I told him my amazing news. He’d been there at my side every step of the way, so it felt right to tell him as soon as I could. I think I floated about on a cloud for a bit after the all clear. The kids were thrilled and relieved. My boyfriend came home and we had our first Christmas together. All was good.  January came and the enormity of what had happened finally hit me. I was fortunate enough to get referred by the breast clinic  to a lovely counsellor based in the hospital. She was a very much needed lifeline at a time where I didn’t know if I was coming or going. Counselling was exhausting but so was recovering from cancer. The only way I could describe how I felt at that time, was as follows… I was on a roller coaster for four months. Life was up and down and each up and each down were so extreme. Finally the roller coaster stopped whilst I was at the top. It threw me off and I’m lying there on the ground. People are saying ‘aren’t you pleased you’re off the roller coaster?’ and all you can think is ‘what just happened?’ and ‘I didn’t even want to be on that stupid roller coaster in the first place’. I felt that people expected me to be so much happier and more grateful than I was. I felt numb, of course I was glad I didn’t have it any more, but I was struggling to process what had gone on. I was lucky enough to book onto a Moving Forward course run by Breast Cancer Now in Poole. A two hour drive but totally worth it. Sadly we only managed three out of the four weeks due to Covid, but that did exactly what it said on the tin, and together with the counselling I started to find my feet again.  Fast forward another six months as I’m approaching my first anniversary of losing my boob. I have days where I forget, then catch a glimpse in the mirror and I remember I’ve only got one boob. Most of the time it doesn’t bother me, and having such a supportive boyfriend (whose opinion is that one boob is better than two) really helps. I still find wearing a bra quite uncomfortable and will take it off as soon as I can, but having my permanent prosthesis helped. My children came through the process seemingly unscathed and proved themselves to be tough little cookies. I earned some kudos amongst my daughter’s friends for being ‘cool’, probably for the first time in my life. There is always the fear that it’ll come back now, I’m not sure it’ll ever go away. Sometimes this threat is greater than others and I’ve learnt to put it to the back of my mind, I think it becomes easier with time. But there are bad days as well as good, but thankfully less as time goes on. My best friend from primary school received the news during lockdown that she too needed a mastectomy. That was a tough time, I couldn’t go to her as she had to me during my treatment. But she made it through, as I had a few months before.  I went back to work after nine months off, into the middle of a Covid hit NHS. I changed jobs but have an incredibly supportive boss who took such care of me. Slotting back into work felt like the last piece of the puzzle.  Life is good. I’m dealing with menopausal symptoms from the tamoxifen and an awful return of periods after 11 years, but I’m alive and I got through it. I’m part of a lovely swimming hydrotherapy group, with other ladies just like me. Their support was, and still remains crucial in my recovery.  No matter what anyone says and how different their/our treatment is, cancer changes us forever. It takes time to acknowledge this. Things just are not going to be the same. You can’t go back to normal, you have to find a new normal. Things will, in time, hopefully be better but they won't be the same. 

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