The legacy lives on

Not sure whether I should write this it’s a little hard to say the least but here goes: My mum was my all we were inseparable I was 9 years old and I lost her 4 days before my 10th birthday to stomach cancer. I could write pages on how much i loved her and what an amazing short lived childhood she gave me but no amount could do her justice.

Now approaching my 30th birthday I am fighting dlbcl nhl stage 4 bulky mass in my chest. I remember even at the young age i was, seeing my mum looking different, smelling different but not understanding why, I remember my tears, my rage, my plead with her to explain what was happening to her but how could she explain that to a dependent loving and what would be a lost and distraught, heart broken little girl without her…

I remember it all and I know the memories and the grief will never leave me but neither will the 9 years I had with her. When it is my time to go be with her again I know ill be safe and warm in her arms again but for now I’m fighting the fight that she would be proud of and I intend to do whatever I can to live the rest of my life the way she had hoped and with the attitude and drive she brought me up to have-to be all that I can be.

My mum was my life, my hero and I carry her with me wherever I go and through whatever life throws at me. I will continue to fight.

I love you mum and you only had to look in my eyes to see just how much..

Your devoted daughter,

Rachael xxxxxxxxxxx

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The legacy lives on

Reflection upon reflection

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.

Rachael 🙂

Reflection upon reflection

Blogging for dummies

So here it is-completion of first line R-CHOP 6 cycle treatment. People ask “How do you feel?” Honestly? What do you say?! What they want you to say is “hey yeah I’m ecstatic, I can’t believe it’s all over I’m going to live my life now and forget the fact that even though I’m a stage 4 high risk patient, I’m going to put that aside and believe that I’m going to live a long and happy healthy life” But if your one of the guys who’s thinking instead: “shoot man! Deep down I’m petrified, every little symptom my body makes me feel (subconsciously or not) including that continual pain in place it all started (for me that’s my chest) gives me that sinking feeling that it’s far from over, then know that you’re not alone your one of millions and only us- the people who have had this inside them, know what that-the pain, the symptoms, the fear, everything that comes along with this feels like.  Like yeah of course it’s a long time coming and no easy ride getting to finishing first line chemo and I’m proud of my little body for making it this far-but that watermelon sized thing that started inside me, kinda difficult to believe I’m going to sit in very small minority that can not only kick its ass but be lucky enough not to grow another in my clearly very homely internal allotment. Not to say we are all doom in way our thoughts process but only we can truly know how it feels living with the reality of the situation. Really not taking away the pain and suffering for those that love and care about us here by the way. Some illnesses are so clear cut-not easy but clear in their direction and result, ours, nah we have a lottery style in our short and long term results and we just have to take it day at a time because the insane odds, statistics and “what ifs?” will drive us insane and will wipe out even our daily focus…

Every journey is so different even if diagnosis and treatment is the same. How each body and mind copes, feels and ultimately ends up, is individual to each and every one of us. Right now I’m facing an early PET scan as I have had reoccurring chest pain and heart palpitations since last two cycles and right where lymphoma is too :/ this is not the norm for a patient to get an earlier than 3 months result for how effective chemo has been at killing these things but its considered a detailed option to determine what hells going on in my little body. So here I am waiting for the date of that and seeing my oncologist on the 13th august should provide us all with some answers-might be biting my nails quite a bit at that thought-would say pulling my hair out but hey! I have a voicemail saying I have a referral for an oncologist in a different hospital so I call secretary back and I’m like “ooo is this for my radiotherapy plan?” Puzzled, he responds “Radiotherapy? Um no, I’m just the secretary I cannot discuss referrals, the doctor will talk to you” accepting that everything is a waiting game I will travel up there on 24th July and hope a plan is going to be discussed.

Whatever people you are surrounded by- the realists, the non-believers, the bury head in sand and hope it goes away, the slap on back “come on get a grip it’ll be fine” people, for me the only ones that can truly understand are the sufferers themselves-I could’ve started blogging ages ago but my journey has led me to this point as not boring anyone with the details and not really being able to document every little thing myself anyway-chemo brain!! I just feel ready now. At this moment in time I haven’t gathered research in how to advertise to get this out there-or even if people would be interested enough to read and comment. From what I’ve gathered in my efforts this far it relies heavily on social media-something that has and still does have a negative impact on areas of my life and chapters I very much want to close. So I will continue to look at alternative ways-I’ve never been a girl to go about things the easy way anyways heh heh!

Blogging for dummies

Giving up is never an option-cancer sufferers place to go

Where do you start when you’ve always been told that your word fluency, expression and attention to detail should enable you to write effectively? Yet somehow with a kitten looking up at me to my left aimlessly, a stagnant crisp sandwich to my right, and the women’s world cup powering out in front of me, I am stumped! It seems putting words to screen in this case are a far cry from any vocalising I’ve ever done!

Let’s start at the reason, the reason that brings me to creating a blog in the first instance: Honestly? It’s purely a selfless one. The first part of the title used to be the quote that I had created for my personal training clients, but in March 2015 it brought upon a whole new meaning. Being in the position that I am now feeling the way I do, being faced with the harsh reality that this horrendous disease creates, I am now feeling and experiencing things that millions of others around the world have been feeling/experiencing since…… forever when I was just living in the ignorance of my bliss life-disease free. For me personally from the start that my life was halted so unexpectedly on the diagnosis of cancer and on my continuing journey carrying the burden of the big C I have yearned to talk to and offer some kind of hand on the shoulder of sufferers to say “you are not alone, I can be here” So I’ve taken a shot in the dark in the hope that anyone touched in any way by cancer can find this somehow and know they can use this blog as a friend that they can rely on.

In order for me to launch a helping hand out to others, I need to be honest and frank myself so I will be posting exactly that. I will not be intending to upset/offend others when I share my opinions/personal experiences-they merely reflect my life as it stands. I’m using this blog for positive reasons I’m hoping people can make long term friends and provide a hub of support via sharing our thoughts and feelings and just generally chat. Any negativity will be removed-no hater’s just genuine people touched by cancer only please.

For me there is so much more than just the disease that can create a whole whirlwind of additional emotional pain and suffering and one of those is the insensitivity and indeed the shock of the weakness in others not loyal/strong enough to stand by the side of the bravest fighting this disease. So although I cannot make up for the heartless, what I CAN be is a place you can go to, a friend you can talk to through good and bad-I love to talk so even if this reaches just one person and I made a difference to that person I’d be a happy girl.

Giving up is never an option-cancer sufferers place to go