Will I lose my hair?

Get ready for chemo...

The day after my BCN had rung to announce I was to have chemotherapy as part of my breast cancer treatment plan, I had a meeting with my Oncologist who for the purposes of this blog I will call Mr J. I’m not really sure what I expected from the meeting other than I knew I wouldn’t be leaving without consenting to the hospital pretty much poisoning my entire body and to be quite honest, I didn’t really fancy the idea of that too much.

So there we were once more sat in the breast screening area waiting to go and see the Oncologist to see what my future held on the treatment pathway. I had a mixture of feelings, part of me wanted to get up and run away, as far away as possible from this waiting area which was full of women clearly at different points along the screening, diagnosis and treatment pathway, and the other part of me wanted to sit firmly and find out what the next steps were.

After around 20 minutes of waiting I was getting a bit twitchy. You see I suffer with anxiety and have done since I was a child. To the outside world I generally look cool as a cucumber but it’s all an act really because underneath it all, I’m treading water as fast as I can. I was doing my best not to show the anxiety but as Gary would agree, when I’m anxious, I talk, and I talk, and I talk and at this point I was no different. Suddenly I looked past Gary and saw a middle aged lady coming walking down the corridor with her BCN in tow and they were sharing some humourous moment as they were both laughing. It wasn’t the laughing that I noticed though. No it was the fact that this lady was completely bald. I remember trying my best not to stare but in that moment the very sudden, the very real reason why I was sat once again in this screening area hit me. This was chemo looking at me square in the face. This was what chemo did – chemo made you lose your hair. Chemo made you look like someone else. I didn’t want to be bald. I didn’t want to lose my hair! I remember feeling the goosebumps along my arms and the hairs on the back of my neck stand up on end in an instant at this bald headed lady. Now the fight or flight was kicking in, the little voice in my head was screaming “get up, run away, get as far away from here as possible” and yet I still couldn’t take my eyes of this lady. There was something about her and I was trying to figure out what it was and it took me several moments to figure it out. It was the fact that she looked well, she didn’t look grey, she didn’t look pastey white, she didn’t look emaciated, in fact she didn’t look anything like the picture that the media portray of people undergoing chemotherapy cancer treatment.

I remember turning to Gary and asking him if he had seen this bald headed lady and it confirmed he had and I said to him “this is real, chemotherapy is going to make me lose my hair! I really feel like running away, I’m not sure I can cope with that.” I can’t remember exactly what his response was but it was along the lines of “you don’t know that for sure, see what the Oncologist says.” A few moments later and my Oncologist, Mr J came out of a room and called my name.

The appointment with the Oncologist lasted around an hour in total and my BCN was with me for the whole time. I remember Mr J saying that the Oncotype DX Test had showed that my test result was 33 out of a 100 which just tipped me into the higher risk of recurrence band and that chemotherapy would definitely be of benefit to me in helping to prevent recurrence. He started to tell me the statistics – “If you have radiotherapy and Tamoxifen for 10 years then there is a 22% chance of the cancer returning in the next 5 years. However, if we put a chemotheraphy regime into the mix then the risk of recurrence is reduced to around 8%.” I didn’t initially digest the 8% risk recurrence, I was firmly fixed on the 22% chance of the cancer returning. How the hell was this even a possibility was the voice screaming in my head? What had gone wrong in my body and what was the fault in my DNA that was allowing the possibility of the cancer returning? I guess I had stupidly thought after my lumpectomy surgery that the cancer was gone, never to return. I didn’t really think of the possibility of it returning? I couldn’t have that much bad luck in my life could I?

I remember looking at Mr J and saying to him “Well I haven’t really got an option then have I? I have to have chemotherapy.” I looked over at Gary and he smiled, it wasn’t a happy smile though, it was the “I’ve got your back” kind of smile. I could see in Gary’s eyes the fear though. He could see the mountain to climb in our very near future. He could see the disruption in our lives, he could see that this was going to be one of the hardest things that either of us had ever faced in our lives so far.

Mr J informed me that the chemotherapy would be due to start within 2 weeks and I remember thinking that it was all moving so fast. There was no waiting about, there would be no real time to get my head around it. I was back on the NHS conveyer belt of intensive and invasive breast cancer treatment.

I remember asking Mr J if the chemotherapy would make me lose my hair and he said “yes, all chemotherapy for breast cancer causes hair loss.” And for the second time that week it was a case of boom!

Mr J told me about the NHS Predict site that I could look at if I wanted to know more about my potential survival statistics. The words “survival statistics” rang like a bell inside my head. Why was I even needing to know this? Why was this happening? How had my life changed in the last 2 months from being someone who thought that I may live to a grand old age to someone who was being told about 5 and 10 year survival statistics. The bucket inside my head wasn’t full, it was overflowing. I didn’t have the headspace for any more information.

What can I say about Mr J? As an Oncologist he is extremely knowledgeable and there wasn’t a question that he couldn’t answer but his bed side manner and people skills, well lets just say that they were pretty much zero. He was very matter of fact and not a people person at all, he just felt like he was being very clinical and detached. I know that doctors and consultants can’t be personable all the time but on this occasion, I wouldn’t have minded if that had been the case.

After the Oncology meeting, my BCN arranged for me to meet with one of the Chemotherapy Nurse Coordinator’s who would run through what my next steps would be and to confirm when I would be starting chemotherapy. I’d not expected everything to move quite so quickly and I felt like control over my life was once again being handed over to someone else and I didn’t like that. It made me feel anxious, it made me feel insecure, it made me want to just curl up into a ball and just forget about the world for a while.

When I first met the Chemotherapy Nurse Coordinator I took a bit of a dislike to her, not because of what he job represented, it was the fact that she was just so sarcastic about just about everything and anything. Now I know that in their job role they will literally see hundreds and thousands of patients each and every year and will no doubt say very similar things to all those patients but at a time when individuals like myself are feeling very scared, frightened, anxious and apprehensive, the last thing you want or need is for someone to be sarcastic. I remember her saying to me that “you will have to give up control to us and I know that you aren’t going to like it. There will be times when you don’t want to do what we tell you to do but you will do it. You must listen to us and you must turn up to all the blood tests and all the infusion days and you must tell us about any and all symptoms.” It wasn’t so much what she said but more how she said it then irritated me. I felt at times like she was being condescending. I was 39 years old not 10. From then onwards she became known as “Sarky Sue.”