It is an under statement to say that being diagnosed with breast cancer is a huge shock. It is a shaking-from-head-to-toe variety of shock. It is a feeling-all-the-air-leave-your-lungs sort of shock. And it is most definitely a surreal-out-of-body-experience type of shock. Upon being diagnosed with breast cancer, one is immediately popped upon the breast cancer conveyor belt where you are pushed from pillar to post without so much as a backward glance. Life becomes a whirlwind of scans, tests, appointments, oncologists and hospital visits. And all brain space is taken up by thoughts of breast cancer, leaving no room to think straight. Before you know it, you are enveloped in a world of breast cancer treatment: following the well trodden path of many women before you.
I am, thankfully, coming to the end of my treatment. The big ticket treatment ended a number of months ago and I have recently been able to reflect upon my diagnosis experience and how I dealt with the early days of treatment. And with this reflection, I have compiled a simple list of the top five things that I wish I had known when I was diagnosed with breast cancer. My aim is to enlighten those of you just starting out on your course of treatment (and it doesn’t include anything scary). Here it is:
1. I wish that I had known that it is ok to go out without a wig
I was really worried about losing my hair and going bald (why I was so worried, is a tale for another time). All I could think about before my hair fell out was that I absolutely, most definitely, without a doubt had to have a wig ready for when it happened. I did a lot of research about where to get my wig from and what sort of wig I would get. I talked to a lot of people about finding the right wig. Then I lost my hair and I got my wig (by the way, from the nicest salon in the world). From that moment on I wouldn’t leave the house without it.
The problem was that the wig wasn’t all that comfortable. It isn’t like wearing a hat. It is tight and hot and itchy. Many a time whilst out, I nipped into a public toilet/restaurant toilet/cafe toilet to take off my wig to give my head a breather. But I just had this inexplicable need to wear my wig if I left the house (I didn’t wear it at home much). I think that in a way, the wig become my security blanket for leaving the house. Which, in time, meant that I didn’t leave the house much – because the wig wasn’t all that comfortable. With hindsight (which is, of course, a wonderful thing) I should not have felt this way and I wish that I had been more open to going out with a scarf or hat instead.
2. I wish that I had known I would lose friends
A cancer diagnosis shows you who your friends are and, sadly, who isn’t. I was not prepared for this. I did not expect friends to not get in touch or to not be around as much as pre-cancer. I did not expect friends to treat me differently, to leave me out of social invitations, or to just disappear into thin air. But they did. Whilst knowing that this would happen would not have changed the outcome, had I been prepared for this maybe it wouldn’t have hurt me so much.
3. I wish that I had known about the YBCN FaceBook group
To say that I was petrified when I was diagnosed with breast cancer is an understatement. And accompanying this fear was an inability to go online and research what sort of support services might help me through my treatment. I was completely, utterly, absolutely scared of what I might read online. You know what I mean – you never read the small print on the medicine packet because you don’t want to know about the side effects. During the first six months of treatment I buried my head in the sand and dealt with every medical appointment, every chemo side effect, every worry and every fear without any breast cancer support – either professional or within the breast cancer community. But then, after six months or so, I ventured (very carefully and with one eye shut) onto the internet and found some wonderful resources for people just like me. In particular I found a FaceBook support group called the Younger Breast Cancer Network, and after a few weeks of plucking up the courage to join, I did it. I joined this wonderful group of women just like me. I just wish that I had found them earlier.
4. I wish that I had known that you don’t get an “all clear” after treatment
Contrary to what everyone who hasn’t had cancer believes (including me up until now), there is no single test that tells your oncologist that you are “all clear” from cancer. You do not finish your treatment and then turn up at the oncologist’s office to be told that you are cured of cancer. No. That does not happen. Instead, your oncologist and breast consultant check your bloods, look at a mammogram that you have done after treatment ends and they declare that there is no longer a lump in your breast and you have no signs of any cancer in you. Some oncologists call it “NED”: no evidence of disease. I didn’t even get NED. I got “well, you don’t have a lump and we know that the treatment which you have had is highly successful, so we’ll keep monitoring you for a number of years to check it doesn’t come back.” And this is the start of the next chapter of your life. The one in which you have to come to terms with the fact that you will never be 100% certain that there is no cancer inside you, but that you can only go on the fact of the continued absence of evidence of the disease. This is where I am now: just at the start of this chapter.
5. I wish that I had known that I should make the most of my time before chemo started
Chemo hit me hard. It hit me like a train. If I had known quite how much it would affect me, then I would have made more of the time between my diagnosis and chemo starting. I would have gone on holiday, treated the children to some nice days out, gone to a spa, seen lots of friends, done loads of fun things and generally have made the most of that period of freedom. Instead, after I was diagnosed I retreated into myself and into my home. I felt reluctant to go out. I felt scared to go out. And all I wanted to do was to hide under my duvet. Well, chemo forced me under the duvet for the 6 months of treatment plus a fair few following months post treatment. So I wish I had made the most of my energy while I had it!