Tuesday, 21 July 2015

Storm in a teacup: The end? Haha yeah right

Author: Danielle
So the end of my active treatment officially finished on 29th June, that was my last radiotherapy treatment. I went on my own. In hindsight not such a good idea! I cried big fat blobby tears on the table and I continued to cry the whole drive home. I still don't know what started the onslaught of emotion, was I upset? Was I happy? Was I relieved? I've no idea. The cancer "endurance test" as one of my YBCN sisters so eloquently put it, sucks you up, spins you around, chews you up & then spits you straight back out again. And then you are left bereft, I think that's the right word, I think what I felt laying there having my last fraction of radiotherapy was complete and utter shock!!!!! What the hell just happened?.

The end of treatment isn't the end of the story though...I so wish it were. I wish as soon as that last little bit is done you can just go back to whatever it was you were blissfully doing before.......oh how I wish it was exactly how people who haven't had to endure cancer treatment themselves or who haven't watched a loved one suffer the effects think it is. That the last day of active treatment is the end, book closed, case solved, finished, done!............ hummmm!

My celebrations were delayed due to the fact that I was awaiting a biopsy of bad boob which couldn't be done until radiotherapy was complete. Before rads had started my bad boob started to change. It became red, hot, felt weird & had taken on an orange peel look. I was scanned midway thro radio and the area was thickened but no obvious lumps showed on ultrasound, they wanted to do a biopsy but as I have triple negative breast cancer radio was the last weapon in my armoury. So it was decided to wait until rads had finished so as not to risk any delays due to infections or breaking down of the biopsy site. So a few days after I had it done. Also before rads had started I was suffering really badly with pain in one of my ribs, painkillers weren't shifting it but the ribs are sensitive creatures as they are constantly on the move so it was understandable but never the less a worry. I'm sure every woman who gets a referral to breast clinic thinks a primary breast cancer diagnosis could be the worst thing that could happen to them, I did, and it isn't a barrel of laughs let me tell you. But you get the diagnosis and you don't fall apart, you carry on through treatment but you come to a realisation that a secondary breast cancer diagnosis is the worst thing that could happen to you! Bones, liver, lungs or brain are the 4 most common places for any possible rouge BC cells to roam around and decide to set up camp. Secondary doesn't mean it's not as bad or its second to primary. Secondary breast cancer kills! It is incurable, it has killed beautiful, vibrant young women and mothers that I have had the pleasure to talk to and get to know online. It's the diagnosis that anyone with breast cancer doesn't want to get. So the boob biopsy was a drop in the ocean at worst a possible local recurrence, I'd just have to do the endurance test all over again and hope that the chemo while not wholly effective was effective enough not to let any hikers make camp. The bone scan was a whole other pile of crap - at worst secondary breast cancer, metastasis to my bones..........thankfully the boob is lymphedema and the rib is surgical pain..........phew!!! I'm over the bloody moon. I literally can't put into words how happy this makes me. I feel like I can mentally and physically begin to readjust, recoup and rebuild.

I know I sound ungrateful. Believe me I couldn't be happier that I no longer have to endure the medicines and treatments that make me feel so god damn awful. I was happy to have finished treatment but call me superstitious I don't care I wasn't about to go shouting from the rooftops that I'm cured, that I've beaten it and won because in all honesty I'm on a precipice right now treatment is done all I can hope is that it was successful but until years start to pass I can't believe that it has gone, because if I do and it comes back................. well................I just can't think about it. So for now be happy that I'm no longer being made to feel like shite. Please don't tell me well done on beating cancer because the little superstitious person in me cowers at these words. Just inwardly know that this stage is complete but continue to support me and ask how I'm doing. Don't expect me to bound around saying I'm cured, I won't, I can't. But I am happy that I've finished treatment I'm ecstatic in fact and I hope beyond all hope that I never have to have any of it ever again. Please don't mistake my caution for sadness or grief or depression. I don't expect you to understand I just ask for compassion.

Every day I can feel a little bit of me coming back. Every week I loose a little more chemo bloat. Every few days I set to task at getting another part of my house back in order. I'm wearing mascara again, I missed being able to just slap on a little bit of mascara, it's the little things. My brows are growing. I have to consider hair removal for the rest of my body for the first time since January. I no longer wear my wig, there are a few reasons. Firstly it's been bloody roasting and that is not conducive to a comfortable wig wearing environment. Secondly it rubs on my new baby hair and gives me bald spots. Thirdly and most importantly I feel well enough to not care what people think about my baldy bits. My rads burns are finally on the turn around 3 weeks after finishing and look like they are beginning to heal. Yes guys and girls radiotherapy takes 2-3 weeks to become inactive so although we were done, we weren't done done! A little bit at a time.......bit by bit........I'm tired, I ache, bits of me hurt, I don't feel the same as I used to but I feel better than I did last week and I feel twice as well as I felt the week before. I may never be rid of the tingling in my fingers and toes. I may never get the full use of my arm back, I almost definitely won't get the sensation back in the top of my arm but I don't feel unwell!!!

Unbelievably people have challenged me on how I've felt over the course of my treatment and compared me to people they may know who have seemingly "coped" with it all better than I have. To those people I say this; there are no Olympic cancer treatment games, there are no gold medals for coming out on top. Everyone's treatments are different and everyone reacts differently to those treatments. No one is the same. No one is battling against each other and if they knew you were comparing me to them they would be devastated that you were doing such a thing. There will be people out there who may also use me as an example of someone who has coped through all of this, please don't, just support them, it is not conducive to their well being or recovery to hear that someone else sailed through chemo or had no side effects to radiation treatment. The people who are closest to me, my husband, my parents, my eldest brother, my children, my cousin and my 2 closest friends have seen me at my lowest lows, they've looked after me when I couldn't, they've taken me to appointments, they've looked after my children, I couldn't have done it without them. They have had to be the brave ones to watch me at time suffer and know there is nothing they could do to help me. But they have helped me in so many other ways. They've also seen my at my highs they've laughed and cried with me. They are the only people who can make a judgement on how well I have coped. Because the reality of it is for everyone else it's just been easier for me to say I'm doing ok. It's tiring enough enduring the effects of treatment without having to relive it to everyone who asks, I'm sorry. I would love to give you a blow by blow account but the reality of it is the people who seemingly "cope" through it all are just shielding you from how utterly awful it is. So chemo might only slow one person slightly or it might completely wipe someone else of their white blood cell & neutrophils count each round that they end up hospitalised on IV antibiotics because any form of infection could make them so poorly they could die. Nobody knows how it will effect each individual so do not compare. I can almost categorically say that anyone who has gone through treatment will live with the fear, the fear that one day your cancer will come back and worst still it will be terminal, how people cope with that is also different but no one should judge. It's not a competition.

Someone on the YBCN said just this morning that they were fed up of people saying how brave they are when she doesn't feel brave at all and actually it just makes her feel like she should be. Put yourself in a situation, on top of a cliff, in a pit of snakes, in shark infested waters, covered in spiders and someone tells you, you can do this you are brave! So it's fight or flight you either submerge yourself in your biggest fear with a smile on your face or you run away kicking and screaming. Or consider facing your biggest phobia with someone holding your hand, someone saying we can do it together, I'll help you, I'll support you and I'll fight along side you. Which would you rather?

So for now my treatment is finished. I'm getting better it's slow don't expect miracles, but know I want me back on my feet as much as you do. I will have to live with the fear. Sometimes I may want to talk about my fears and that's ok, it doesn't mean I'm giving up it just means it's got so much it's spilling over and I don't want to drown in it. I won't be who I was before it would be silly to presume I will be. But I'll keep going till I get near as damn it and actually I'd like to think I'll be a better version of the old me x x 

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