I had cancer about 18m ago. A very rare form of ovarian cancer (I was 28).
It took three trips to the GP to get a scan. The sonographer at the scan then called in her colleague and they whispered behind a curtain for five minutes. They then refused to tell me anything at all, other than I'd get a letter calling me in for an appointment to discuss it. This was cruel in the extreme.
I went private after that and was eventually diagnosed (first thoughts were that it was a dermoid cyst), had surgery and 6wks of horrific chemo (the type they give for testicular cancer - the type Lance Armstrong had if you've read his book - lost my hair, lost over a stone in weight, and felt so ill I thought I was dying. Totally impossible to explain how horrendous I felt).
When I was diagnosed DD was 9m old, and I still feel that I missed out on 6m of her life.
Fortunately, the type of cancer I had is almost always curable and fertility is often unaffected by treatment: I'm currently 39wks pregnant with #2 so life is good once more, and my cancer is increasingly becoming simply a 'blip' in my life story. I personally got through it due to my faith (I'm a Christian): I don't know how I'd have coped otherwise.
Anyway, my thoughts on the questions are that:
- I regret telling so many people (or rather I'm still working on forgiving my husband for telling everyone). I understand why he did it, but (perhaps particularly because of the type of cancer it was) I hated everyone knowing (his boss knows I only have one ovary for heaven's sake, and when we announced this pregnancy, I knew everyone was wondering whether it was 'natural' or IVF...). It's taken (taking) a lot for me to relax around people and not assume that they look at me like the 'sick/broken' person, particularly when people catch sight of my scars (huge one on my abdomen and a very ugly one near my shoulderblade where my port was);
- It was really hard having people offer me 'advice'. My MIL was the worst: apparently my being sick was really hard for her but she was getting lots of support from her friends so I wasn't to worry . She also kept coming back to me with 'cures' recommended by her friends, all of which were totally irrelevant since they were related to 'normal' ovarian cancer, not my type. I often felt like I was supporting her, rather than the other way around. So please, tell the patient how much you love/care for them, but don't unload your fears onto them;
- It was also really hard seeing other people's lives continue whilst mine was put on hold. For example, a lot of the mums who'd had babies the same time as me were moving onto getting pregnant with #2 at the time I was having chemo. We hadn't necessarily planned on having a second at that time, but it was still gut-wrenchingly painful to hear their happy news. However one of the many things I learnt from being sick is that there is a 'time' for everything, and, for me, this meant a time to be sick and a time to be healthy;
- Unfortunately I didn't find Macmillan at all helpful. I called them but they a) had no information on my type of cancer at all (which I sort of understand, since it's rare, but still), and b) had very limited information on fertility post-cancer. Luckily, I am very practised at researching matters on the internet, so I found a lot of medical reports and basically educated myself about all this, but it would have been nice to have had some sort of information easily available. I think this is particularly important in light of the larger number of people surviving cancer whilst still in their 'fertile' years;
- Prior to my hair falling out, I was recommended by someone to get it cut short in preparation by a hairdresser who was 'trained' in cutting the hair of people about to undergo chemo (think it's organised by Toni & Guy???). It turned out to be one of the most upsetting parts of the whole experience. She took me to a different part of the salon away from the 'normal' people, put on her 'sympathetic, mustn't upset the potentially dying lady' voice and gave me the haircut of a middle aged lady;
I think a large part of the problem is that the moment the 'C' word is mentioned people automatically assume that you're 5.5ft under, and that simply is not the case anymore. I maintain that if my cancer had been called something else, the whole process would have been a lot easier to get through (and people's reactions would have been an awful lot better). People need to be educated into how cancer is often 'just' an illness, not a death sentence.
Also, more money needs to be put into prevention, rather than cure. Arguably our lifestyles lead to a large number of cancers: if people were slimmer, and drank less, for example, the thought is (as I understand it) there would be fewer cases of breast cancer. And, picking up another thread, if more people BF, there would be significantly lower levels of many cancers (although I hardly prove this - both I and DD were EBF, and I developed cancer whilst BF!). I know that these are controversial topics, but they need to be addressed.
Think that's it :)