The fear

I watched this TED Talk video the other day:  Fighting Cancer with Dance (Ananda Shankar Jayant). It's inspirational, and well worth watching.

There was one statement that really stood out to me. Ananda describes the moment that she was told she had breast cancer. "I thought I knew what fear was. That day I learnt what fear was."

Tell me about it.

Worries

Wednesday 2nd July. I looked down when I was getting dressed and saw that my left nipple was leaning in slightly. I panicked at first then I told myself I was being stupid. Had it always been like that and I hadn't noticed? Was my "cancer worry" out of control? Should I actually call the Genetics Clinic and take them up on their offer of getting a Clinical Psychologist to address my cancer-related hypochondria?

Friday 4th July. "I'm sure it's nothing but there's something I'm not sure about. Can you check?" My GP examined me, and wasn't particularly concerned. She suggested I come back in 3 weeks time, at a different point in my cycle, to see if anything had changed, and then if I was still worried she could do a 2 week referral for an ultrasound -  just in case, because of my family history. I left the doctor's surgery, not feeling reassured, but feeling sick. I just wasn't happy waiting 3 weeks and then another 2 weeks for an ultrasound. I went in to work and spent several hours googling, going off to the toilets at least every half an hour to have another look, and another panic.

If you find a lump, there are all sorts of things it could be. 9 out of 10 lumps are benign. I couldn't feel a lump. I was googling "nipple going inward causes" and found absolutely nothing to reassure me it was probably not cancer. I had no symptoms of infection, I hadn't had any surgery, I was not pregnant or breast feeding, I was not approaching the menopause. I was pretty much left with cancer as the only likely cause. I went in to a meeting room at work for privacy, called the Macmillan helpline and spoke to a nurse. She started out trying to reassure me. Then we went through the list of possible other causes, ruling them out one by one, and she ended up suggesting I phone the GP back that day to ask for an immediate referral....you know, just to get it checked sooner rather than later and cut down on the time I would spend worrying. She told me she would be thinking of me. Again I felt utterly sick. I called the GP back, and got the 2 week referral.

Over the next 2 weeks while I was waiting for the ultrasound appointment I tried to not think about it. But there were still moments of fear. Like when the appointment confirmation letter came through and the words "suspected cancer" had been highlighted in pink. I kept telling myself how unlikely it was that I had cancer. I must have injured myself at some point without realising and had some sort of weird scar tissue. Or maybe it had always been like that and I hadn't noticed. I didn't tell anyone about my appointment. I figured it would either be ok, and there was no need for anyone else to be worrying, or it wouldn't be ok - and I'd tell people then.


Diagnosis

However scared and worried I felt over those couple of weeks though, it was nothing compared to the life shattering fear I was about to experience.

I realise now that like "love", fear is one of those words that is greatly misused. There should be a different, specific word for the fear you feel when you're told you've got cancer. It's a fear that reaches depths no other fear can.

8.30 am Friday 18th July. I arrived at the hospital and was asked to change in to a gown. I sat in a little room and waited for the nurse to come in. The first nurse explained she was a trainee, and would do the examination first, and then another nurse would come in and go over it again with her. She examined me, couldn't see or feel anything unusual, and let me know she was satisfied that all was ok. Relief! The other nurse came in and went through the same process. She also said there wasn't anything that concerned her. More relief! I think I was actually grinning at this point. I apologised for being a hypochondriac, explained again about my family history and the recent genetic testing process and how that had me in a bit of a spin. The nurses were lovely. They said they would send me through for an ultrasound anyway, for my own peace of mind.

So I waited in the corridor to be called through for the ultrasound. I think at this point I was the youngest woman in the waiting area by about 20 years. I felt silly. I was then taken through to the ultrasound room, and laid down ready for the scan. I was thinking it was an interesting room with all the various screens and machines. Then the nice, friendly woman doing the ultrasound stopped talking. That's ok, she needs to concentrate. After several minutes she told me she would finish the scan and then she would explain. Explain what? I was only having this scan for my own peace of mind. Several more minutes of scanning and saving lots and lots of images. "I can see some things that I think explain the changes to your nipple. I'd like to send you through for a mammogram, and then I'll explain."

Back waiting in that corridor for the mammogram. The relief I felt ten minutes ago - gone. I felt sick, I was sweating, and I was freezing cold. The mammogram was over quickly and then I was there again, waiting in that corridor. I spent the next ten minutes watching the various nurses and doctors who had examined and scanned me rushing up and down the corridor, in and out of different rooms, deadly serious expressions on their faces, avoiding eye contact with me. Several other nurses stopped by to ask me if there was anything they could get me. I knew something serious was up. I felt very small, and alone.

I was called back in to the ultrasound room and told that the scans had shown "some changes" and that they wanted to take biopsies there and then. What the fuck?  I laid back down so they could scan me  again to do the biopsies. What changes? There was a 22mm mass under my nipple, a 6mm mass a bit lower down, and some of my lymph nodes were enlarged. I was told that they would use a fine needle to take cells from the lymph nodes and the small mass and that it would be sharp like an injection. I didn't feel it. I was then given a local anaesthetic so they could take a core biopsy of the larger mass. I was told the local anaesthetic injection would sting for a moment. I didn't feel it. I just lay there, looking at the expression on their faces. One deadly serious, the other sympathetic. I asked if there was anything it could be other than cancer. "No..... I'm sorry."

I will never forget that moment. I won't forget the expression on her face. I won't forget the sound of her voice. That's the moment my life as I know it ended. Nothing will ever, ever be the same again. I feel like I'm still in that moment, like time hasn't really moved forward since then. I'm stuck lying there, looking away from the woman, and across to the dark image on the ultrasound screen, hearing the words "No.... I'm sorry" echoing round my head.

I don't remember leaving the room, or what happened next. The following few days are a blur.


Limbo

To be honest, cancer has been a big part of my life for a long time, so my own diagnosis wasn't really a surprise, but it was a shock. I expected it to happen, and I was worried, but with the youngest diagnosis in my family being at age 47, I thought I had a few years breathing space at least (and time to argue my case for preventive measures). No such luck.

I had to wait a week to find out anything more about the cancer. I knew I had it, but until they got the biopsy test results I wouldn't know how aggressive it was, how far it was likely to have spread, what my treatment plan would be.... what my prognosis would be.

I like to think I'm a fairly optimistic person. However, I'm not sure anyone can genuinely feel optimistic knowing they have cancer, but not knowing how "bad" it is. It messes with your head in serious ways. I'm not afraid of death itself, but I am afraid of being alive, knowing I am going to die soon, not being able to do anything about it, and being too sick to live and be happy, and be myself. I described in a previous post what my mom's life was like from diagnosis to death. 6 years of illness and suffering. I can't face that.

Somehow I got through that week of limbo with help from friends and beer.

I was back at the hospital on 24th July to meet with the surgeon. Waiting for that appointment was torture. How I wasn't actually sick on the floor I don't know. But under the circumstances the news was "good". The 22mm mass was cancer - but it was grade 1, possibly grade 1-2. Slow growing - good news. The little mass and the lymph nodes had "atypical" cells, but they hadn't immediately found cancerous cells. It was suspicious, I would need more biopsies, but the fact that the initial biopsy of lymph nodes wasn't full of cancer was good news. When I asked my surgeon if I would die, his response was a resounding no. That's another moment I won't ever forget. It doesn't cancel out the "No...I'm sorry" moment a week earlier, but it has helped a lot.

I'm now back in a bit of a limbo. Last Monday I had an MRI and more biopsies of the little mass and the lymph nodes. I don't get any more results until this Friday, 8th August. I'm expecting the biopsies to show cancer. It was a different woman who took the second set of biopsies, but having seen the MRI scans she had the same "this is serious" face and tone of voice as the first.


The never ending list of things to fear

I'm scared about treatment. Going in to hospital, being put to sleep, and having the dangerous bits removed with a knife. Sewn back together, bandaged up. Do your exercises, but don't overdo it because you could get lymphodema. Something that can never be cured once you have it. You'll be at risk of that for life. Recover from the surgery, hope there are no complications or infections. And as soon as you're well enough, go through 4-5 months of being poisoned on a 3 weekly basis to try and kill any remaining cancer cells. Hair will fall out, eyebrows and eyelashes probably will too. Fingernails and toenails might go. Likely to be sick a lot. Apparently everything, even water, tastes like sewage. Sore skin, painful gums. Exhaustion. Even if you are lucky and feel well, you can't live a normal life because of the risk of picking up infections from other people at a time when you're immune system has been shot to shit.

I'm scared of looking like a cancer patient. I don't want people staring, feeling sorry for me, thinking I look weird, ugly, ill. I'm not going to rock the skinhead look. I'm not excited by the idea of getting loads of wigs with all sorts of cool, different hairstyles that I wouldn't normally have. I don't care how nice the headscarves are. I don't want them. I just want to stay as I am, normal like everyone else.

I'm scared of being dependent on other people. I'm an independent person. I like to do things myself, look after myself and be in control. I'm afraid of being a burden on the people who have been kind enough to offer their support throughout this. I'm afraid that they will never be able to see me as the same person that I used to be. I'll always be the one with cancer.

I'm scared thinking about how, if I do get through this treatment, that I will still need to go for regular scans and checks for years to come. Waiting for results every time to find out whether the cancer has come back, or spread.

Most of all I'm terrified that I can't beat this, and that I'm going to die young, after spending a lot of time ill, unable to do the things with my life that I want to do. Despite the fact that I've been diagnosed with cancer, there have been moments over the past few weeks where I have felt very happy. Then I remember what I'm facing and feel so, so sad. It's not fair. And one of the things that seems most unfair about all of this is that being diagnosed with cancer gives you incredible perspective. You know what is important, and appreciate every little thing. Every moment. Everything that makes you smile, or laugh. Everything that is weird, or interesting, or new. Everything that is ordinary and normally goes unnoticed. You appreciate everything at the point where you realise it might all be taken away from you.