A little early to be looking at the bigger picture some might say but to me every day is a reflection on the day before and an anticipation for the day that’s to come. “Reflection” well there’s a lot to reflect on to say the least! It would be nearing on impossible to portray every experience, every thought, every process and even though I would and have delved further into things when another fighter has asked of it, to benefit them I will happily do so but on here writing solo from the heart, I tend to look at the bigger picture rather than a diary of events.
My first & everyday reflection is upon the one looking back at me-MY own reflection in the mirror. I cannot express the sheer fear and excessive anxiety that the anticipation of losing your hair brings. Then when it does happen and you’re not even G.I Jane anymore your Humpty Dumpty! Well every reflection from the mirror, to the bus window, to the TV screen to the bloody oven door! Ensures that even for a split second you daydream of times pre illness, your dreams are brought crashing back down with the harsh reality of the here & now. Pre illness I knew I was obsessive with my hair, straightening it and obsessing over the wind/rain putting a little kink in my unique and loved long style. Now, I travel on public transport, walk round my streets, look out the window, switch on the TV and there are the same women doing what I used to do obsessing over their do’s, strutting about with their smooth sleek long styles and it’s such a huge part of a woman’s look. I gaze at them like a cat stalking a fish pond, with pure jealousy as I long to run my hands through my long black locks. Instead only thing I run my fingers through is the drenching sweat collecting under my disguising hat.
Next reflection is the completion of my 6x R-CHOP treatments. I don’t keep a diary but if I did it would rarely read a pattern of similarities over time with treatment as it really is a day-day experience. Only thing for me-that old saying it gets better in time really did refer in this instance. When I had the first treatment the lump and most of the symptoms had disappeared! To me this was an extremely positive outcome-so much so that I thought I was a miracle case. A bit too optimistic and naïve as you learn more about things as time goes on and this was in fact a completely run of the mill response for most patients. Indeed after cycle 4 that poison ivy (not the batman kind either) was still hanging onto my chest. Yeah it had shrunk but from a watermelon to a grapefruit and there was a lot of “muck” in there. It was then I was told I am a stage 4 patient with high risk of relapse or even refraction due to its depth and size over everything else.
Another reflection is misdiagnosis: Over 4 months ago I was suffering with continual weight loss, a cough that could be heard from the next street, drenching night sweats, continual colds and illness and finally the appearance of a lump on the chest L But as a normally healthy, fit 29 year old personal trainer, nursery room manager and a woman that could just never sit down, I put it down to the after effects of the glandular fever I had suffered at hands of years before. Ok yeah years but this was me I didn’t need to see any more doctors after I had been told it was bronchitis, I was ok. Wasn’t I?! Obviously not!! As after the umpteenth visit to the walk in centre I found myself at a&e-self referred as desperate pleading that I knew my body and that this just wasn’t it with the walk in centre got to no avail. A blunt “go a&e then” was the one correct thing that came out of their mouths and I thank everything I did as a simple investigation that could have been done months ago resulted in the findings that I wasn’t in fact “OK” Needless to say that I am now suing that very disgraceful walk in centre and I strongly advise anyone who has been treated the same (and some of you have told me that this is the case with you guys too) to do this as misdiagnosis needs to be recognised, addressed and tackled! There are too many poor public health “services” out there and it is our lives that they are “looking after” I am passionate about patients symptoms being recognised and fully investigated to provide treatment at the very first sign of patient communication with a health provider that something is wrong. It will save lives!
Next reflection is others: I’m a person who has to get her teeth into projects, I love to lead and inspire and I’ll be damned if I can’t find things to keep my hands and mind busy when I’m prevented from keeping the body in check. So on top of ensuring my invaluable friends at work send me tasks I can do from behind the scenes, I make my own projects. One of my short term goals was to try and make a beneficial difference to other fighters. I decided it was time to connect with others. I had good people around me and I will touch upon this in a moment but no one understands what you are going through quite like another fighter. So I decided it was time I conversed with the very people that are fighting their own fight behind the scenes like I am. I set myself a goal of making a little difference to someone else, to put a little smile on their face and offer a listening ear and a comforting shoulder. This thing is incredibly scary and feeling that you are not alone-knowing there’s a whole army of us lacing up our boots ready for the battle each day as you are, can surely offer some kind of open door from the dark cave of solitude. This is no easy mission as finding the words, reaching out to your target audience and prompting a response means you have to work tirelessly showing your passion and dedication. Checking in with my inbox each day I was wondering if I was going about it the right way but then there it was! My first response came and it demonstrated that my amateur blogging and chat room posting had not been in vain. I couldn’t believe not only was I getting a response but I was being told that it was indeed making a difference “helping us through” in fact! Can’t beat that feeling, no one deserves to go through this and to be a little sun in the darkest of clouds is more than I could have wished for. Now the responses have been following the first I am very happy that I am accomplishing what I set out to do.
Next reflection is passion: I am a passionate self-motivated person and like I said I have to be setting myself goals and getting involved in projects. I have lots of passions and I urge you to not only reignite old passions but to hold onto the ones you already have. From the simplest things (for me listening to music for example can alter my mood I love music I don’t watch TV but my songs mean so much) to the larger scale (for me my career is a huge passion it got me out of a tough time in my life to say the least and I love my job) you have to keep busy doing what you love however you can. You gotta find the passion don’t let anything strip you of the things that internally make you you!
Next reflection is control- so yeah you have no control over how this thing responds to treatment and keeping the beast at bay as it were. BUT there are things that are in your control, from finding your inner elements like ones that I touched on above plus finding the strength in the mind to continue kicking this things ass (I also love football and martial arts so ass kicking had to come in there somewhere) to the things you can control in terms of exercise, diet, infection control and communication both with others and your medical team. I had a PICC line in which prevented me from doing my beloved weights, the poison ivy was in my chest so was prevented from raising heart rate too much plus I was an avid exercise freak and was known to push the boundaries so all this contributed to me only being allowed to really walk. So walk I did-hell if you can do something then do it! Armed with my infamous black hoody and my tunes in my ear I would walk and walk. Breathing in the fresh air with my tunes blaring in my ears I would swagger along with the bit of freedom I held onto. I stayed in on the highest risk days infection wise, I stayed extra precautionary on hygiene and who I was around-I stuck to all the rules in terms of no ham, wash fruit, no cooked counter goods no take away, list goes on-but again the treats your allowed to have I was on it!! Mac D’s 😉 I was on top of things that were in my control and I’ll be damned if this thing aren’t going to let me put some weight on-steroids helped with that so can’t take full credit. Point is-things you can control get on them! Difference it makes and the laugh in the face to the “ivy” is crucial. Delivery man might’ve told me I look like crap but jeez taking all things into account-I had to give myself credit for the weight gain even if I did look like an oversized Casper! (Used to like that film as a kid.)
I could reflect on and on but I’ve already chatted on more than I thought I would and this is the condensed version! I’m a bit of a talker oh and clearly a state the obvious kinda girl too!
I’ll finish this post with the importance of those around you. I, like millions of others have experienced the revolving door of life-people walking in and out-some just out, as they please. What I can say is although in a healthy individual this can be damaging, this is out of your control-people can be so selfish and self centered or maybe they just too ignorant to the vital importance of the power of being there especially in times like this. Anyways hold onto ones you’ve got, recognise those who are strong and loyal enough to be by your side and let them know how it feels to have them in your life. For those that are the people (my ones know who they are and I never let them forget the place they have in my heart) if you are that person in someone else’s life, standing side-side with them on the top of a big hill staring down at the battle field below them with that knowing look that you are there then I really cannot applaud you enough you’re a very special person and it’s you that will make the biggest difference in our journey.
So I’m signing out for this post no doubt I’ll be posting again soon-as always hoping it is of use.