I don’t remember being told life would be this hard… I want to be 4 again!

I’ll be honest with you; I’ve struggled this past couple of weeks. Not particularly with the pain, I’m sort of getting used to that, but more with where my head has taken me. This probably isn’t helped by the relentless cold and snow which has meant that I’ve been housebound for the past week, with me, the internet, TV and my thoughts for company. I can understand now why they say cancer survivors may get depressed or feel isolated whilst to others the battle appears to have been won and their fight is over.

There’s also reference made on cancer charity sites and in the leaflets that unlike many illnesses, breast cancer survivors are just that…survivors. We don’t get the chance to say we’ve got the ‘all clear’ but to simply count days/weeks/months/years since our last recurrence to which we can mark our survivorship time. I’ve been asked by a number of people if I have the all clear and if I’m better and every time I hear that question, it breaks my heart just a little bit more. It’s hard to just put a smile on and pretend that you’re feeling grrrreat!

If I wasn’t feeling isolated enough this week I was also reminded that we’re all human and bureaucracy is everywhere. I registered with a support group that specialises in rare cancers and have been regularly searching for information relating to Phyllodes tumours on this site and also reading other survivors’ stories and questions in a search for answers for myself. In addition, where I’ve been able to, I’ve been replying to postings from others seeking answers.

In these postings I have, where I feel it to be a branch of support added that there are a number of us ladies on Facebook and saying if they’d like to friend us they may find the support helpful. As you know from my website witterings I’ve sought help and support from a number of different sites, forums and resources. I guess being diagnosed with a rare cancer has meant that there are fewer people with it and therefore less information available to us so we (certainly I) will take any help I can get. Sadly this week the administrator of the site deactivated my account on the basis that I was redirecting users to other online groups. I’m sad because I hadn’t realised that by offering a hand of friendship to others I was a breach of this website’s rules. I’m also sad because if sites like this continue to make the club exclusive we miss out on the opportunity of raising awareness to this rare cancer and thereby any research or publicity. But it’s their site and their rules. Personally I know I would have struggled thus far without these additional forums and resources.

I’ve read that I’m now classified as ‘disabled’ as a cancer survivor and to me that makes me feel like I’m never going to get better or be over it… I know it’s just a ‘word’ and it’s more about attitude but it does make me wonder what that will mean for my future with regards to financial planning, life policies, mortgages, insurance or my career. It’s daunting to think that this could determine my future in more ways than just the surgery or treatments. I wonder if I’d feel differently about this if I was married or in a permanent stable relationship whereby it’s not all down to me alone.

As most of you know I don’t have any children and have always maintained that it’s by choice. Those of you who know me very well will know that I was told at an early age (18) that I couldn’t carry full term and therefore wouldn’t be able to have children. The reason I’m saying this now is that it’s been very much in my mind recently. I sway from being grateful that I don’t have children or a partner who would be seeing me go through this journey or indeed that I may one day have to leave prematurely. The spin side of the coin is that without them, I don’t have the same drive to stay positive and fight. Equally I’m every now and then acutely aware that I don’t have access to that unconditional love, hugs and warmth that you get from children and partner or the comfort and safety as you fall asleep in the arms of a loved one.

Thanks for listening (well, reading) and apologies if this seems a little too much truth for one entry – thank heavens you can’t read my mind! I feel better for having put this down on ‘virtual’ paper. I do have some truly tremendous friends and family but some things are just too damn difficult to say face-to-face without sounding like a victim. I often never get to the reasons why my mind has reached a conclusion but on ‘paper’ I have a little more confidence to voice my thoughts and perhaps this written blog will help you understand my journey and I suspect other survivors.

Right-O – face on, lippy on and smile Wolbag… atta-girl.

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