Mile Stone!

Ah blogspot, long time no see!Ok, I put my hands up... I have been categorically useless. The fact I had forgotten my log in details is a clear indication of how undeniably rubbish I really have been.

So, one long year on and today I have reached my first year of remission.... Ye haw!

This mile stone was feared unreachable a fair few months ago and now it has nearly flown past with out acknowledgement! How times change.

Any way memory jogged and my keyboard dust free, it is an absolute pleasure to be re-acquainted with you. So, where do I start re-capping my first year footloose and C-Free? I guess the best place is to explain why I have fallen off of the radar with a big old bump.

I expected the call of Remission to be the final obstacle before I was set free and I entered back into the real world. Not a world based around hospital meetings, daily injections and more tables then Lloyds chemist. In the words of Yazz, "The only way is up". How very wrong...

I put my hand on my usually level headed heart and say this with deep sincerity, I went absolutely crackers. I have never, ever been so unstable?! I did not know if I was coming or going, I handled situations irrationally and instead of taking it easily I proceeded to get... well if I am totally honest, shitfaced!

I had previously thought I had been in limbo but yet again those feelings had been superseded and I was firmly back on this immense roller coaster. It took me a long time to get back on track and stop questioning everything. In the mean time I had to be helped home by strangers on a handful of occasion, was sick in a baking tray and lost my wig twice ! I spent the first 4 months of remission hangover, hanging like a bat as they say. In hindsight, I should have spoken to the doctor but did not want to be more of a burden now it was no longer life threatening. My silliest decision of them all.

So, now head screwed back on the right way, I am feeling better than ever and looking forward to the next few months. I have thrown myself in to work, have hit my target for Kilimanjaro and have been putting my best foot forward with regards to training. Ok, the last bit is a blatant lie but there has been the occasional energetic motion that is outside the realms of general movement.

I promise I will be back shortly with an update on training.

Lots of Love,

x KJ x

Kaleigh-jane Scott is fundraising for Macmillan Cancer Support

Kaleigh-jane Scott is fundraising for Macmillan Cancer Support

The end of 2010...

Where have the last 5 months gone?!

I can not believe we are three days from Christmas after what has been the most turbulent year of my life! At one point I didn't know if I would be seeing Christmas let alone awaiting its arrival with such enthusiasm and excitement. I believe the Marvin from JLS tree topper has something to do with it! :)

I send my sincerest apologises for not updating the blog since July. The truth in my atrocious attempt to keep you all in the loop was purely down to my despondent mood, a far cry from the positive and composed woman who had been posting previously...Positive Polly seemed a bit of a distant memory!

I struggled immensely with the last 2 months of Chemotherapy. The drugs had ravaged my body, mentally and physically I was a shadow of my former self. Even 5 months into the treatment I was experiencing new side effects, each as terrible as its predecessors and it was becoming unbearable. Foolishly, we had assumed I would adjust to the fortnightly poisoning and would become accustomed to the effect. When actually the smallest task became the biggest struggle and I spent the majority of my time completely enervated and often tearful. It got to the point where I could not gather the strength to stand from sitting and I got stuck in my car on more than one occasion as I didn't have the strength behind me to open the door...Serves me right for not sticking to the pro max protein shakes!

I will be honest with you, the frustration of it all made me completely intolerable and I became near on impossible to live with. Thankfully, my parents, family and friends were always there to pick me up...quite literally! Never once making me feel guilty for struggling. I actually can not find the words to thank them all enough for this!

This was all bought to a glorious end on the 20th of August. As usual, I was forced to get up. This had become a ritual on the Friday of Chemo, If I had my own way I would stay with my head buried under the cover pretending it wasn't happening. Except this day was different! I wasn't escorted to my usual recliner, I didn't have my blood pressure taken and told it was worrying low. Instead I was whisked off and the doctors informed me they had made the conscious decision to stop Chemotherapy. I still had tumours but they believed the current treatment would no longer decrease the size of lumps and that they were infact scar tissue instead of active disease. This is without a doubt the happiest I had been in such a long time. Due to my sheer exhaustion, all I could do is cry! I even cried to a Black Eye Peas song which is utterly ridiculous. I didn't have the all clear and it was yet again another waiting game but the relief was immense.

The joy is as usual short lived and the reality you are in limbo again is worse than before. If the tumours are still active, they are now not being treated! All you can do is hope. The only time I had been let down by the NHS was at this stage. My details were lost and I was left waiting 2 months instead of 4-5 weeks before I could have my PET Scan to re-evaluate the growth and activity of the Cancer.

This took us to October, I was regaining strength and the first signs of hair were being to show! No more walking around with one eyebrow as I had accidentally wiped one off or looking like a transsexual in false lashes during the day.

Finally the call came and we recieved the news we had been waiting for with bated breath... We had done it and I was now in remission. This should have been the most amazing feeling except it wasnt and I didn't understand why I felt so confused by it all. The anxiety of it all was unreal! I had 100's of questions and limited access to being able to speak with my consultant and I had made the error of comparing my treatment to others, which you simply can not do.

I'm ridiculously scatty at the best of times but it became out of hand. I honestly did not know if I was coming or going. On top of the fatigue, no self esteem and the feeling of being of forgotten, I can put my hand on my heart and say I have never been so stressed in my life. I knew I had to do something before it got out of hand and closure was what we all needed. It was time to organise the remission party I had daydreamed about months before.

To have all of the people who had been there for me over the last 10 months in the same room was incredible. The evening went without a hitch and everyone was in such high spirits! The Band and DJ were exceptional and without sounding incredibly cheesy a great night was had by all. The miscellaneous bruises and horrific hangover confirmed that! I didnt get to wear the Remisson shoes I had bought back in February... it appears after 10 months of wearing flats has taken its toll, not only did I lose my hair but also my ability to walk in heel. I am now literally a tumble tot, just what you need when you bruise like a peach.

The party is exactly what was needed. The prospects of the future are exciting and I am looking forward to living life to the full.

Since then, I've made my return back to work, something I had been worrying about but it didn't take long before it felt like I had not been away and we were all out of hand at the Christmas party. It is amazing that last years bash is where I established something was wrong so to have done a complete turn around in a year is truly astonishing.

I've celebrated my 24th birthday and for the first time I wasn't mortified at the prospect of being another year older. On the contrary, I was made up to see another year with all of my favourites!

And I have signed up to climb Mount Kilimanjaro in January 2012 to raise money for Macmillan. A foundation whose constant support provides thousands of families the information required to digest the life changing news. It only feels like yesterday my sister was printing details of Hodgkin's from the site to hand to the family...

It has been an incredible journey! I am without a doubt a better and stronger person from this and the friends I now have in my life are unfortunately stuck with me forever. Thank you to everyone who has shown their support to myself and my family. It is you who has help us to keep going to now be celebrating Christmas 2010 with one another.

I will continue to blog details of the training and the climb so keep following for entertainment value. I can't even climb the stairs without being out of breath.

I wish you all the Health and Happiness for 2011!

x KJ x

You don't know what you have until it's gone...

I can't believe it has been a well over a month since my last blog!

The growing gap between the updates are not because I do not have anything to report, they are in fact due to the complete opposite. I have been so incredible busy I have been kept away from my laptop.

Since my sleepover at the hospital the medical team have been concerned at how low my Neutrophils have become. Don't worry I am not going to turn all scientific on you! Basically, your Neurtophils are a type of white blood cell and are an essential part of the immune system which provide us all with an immediate defense against infection. Another amazing element to the human form I didn't appreciate!

We have always been aware the white blood cells would become affected by the Chemotherapy as it kills off most healthy and hopefully all cancerous cell but we did not expect it to be to this degree.

The stated range for normal neutrophils in a healthy individual are up to 7.5. For an individual undergoing treatment for cancer the normal count is round 2.5, which is a significant drop and leaves the patient susceptible to infections and other illness. Mine on the other hand have taken a total annihilation and are fluctuating between 0.1-0.3. Effectively, I have no immune system.

This has of course left me hugely vulnerable. Take outs are a distant memory as I can not eat anything that is not freshly prepared, nor can I use a train, be in crowded places inside, touch doors, escalator hand rails etc...I literally look mental when I am out as I avoid all contact with everything and anything in close vicinity. On the odd occasion I get thrown a dirty look by busy old bags as I use my foot to open doors. Antibacterial gel is my life!

Easily the hardest thing has been not being able to return to work on a part time basis because the air conditioning is continually blowing around all sorts of germs and unwanted nastiness. I can't imagine my colleagues agreeing to work in a sweat shop just so I can feel slightly in touch with normality for a few hours a week.

The concerns have been increasing so I met with the highest Consultant who has gone against protocol and prescribed daily injections. Without these they would have to look at stopping treatment until my body can recuperate, something no-one wants. The injections are called GcsF injections which provide me with a hormone the body should naturally produce, however due to my inadequate immune system this hormone is not present.

So, now as well as rattling after I take the 10 different types of medication I am also a human pin cushion. I have to self inject each morning for three days after Chemo. The sight of a needle used to turn me green but yet again I have had to adapt. I also have no other choice as mum has turned into the injection fairy and kindly wakes me up with a knock on the door and a wave of needle wand :)

x KJ x

Research and Recovery

Well, my little sleep over at Frimley Park Hospital injected a fear in me that I just could not shake and I was left worrying when the next curve ball was going to be thrown in my direction and I strongly questioned if I was actually strong enough to handle it?!

After I made a full recovery, I unintentionally got myself really worked up. I began panicking if someone coughed anywhere near me, didn't really like sharing a car with anyone and heaven forbid should a little snot faced child make a run for it in my direction in Sainsburys... I was becoming slightly neurotic!

I have mentioned before you become hugely body aware when something like this affects your life. I'm constantly copping a feel of myself these days for new lumps and bumps and I have also become much more receptive to my emotions. Which, unfortunately after three months of treatment have been completely exploited and abused, so as I could feel myself becoming more tense it was clear then that I needed to do something to help constrain my fears.

It was at this time I began to research in to the relationship between Cancer and Depression. It wasn't that I believed I was depressed but I'm aware of how quickly things can get on top of you. Depression is not a tangible illness but it is very, very real and could have devastating effects on my recovery. So it has been a month of research and I can honestly say its has helped, I'm feeling much more positive today than I was two weeks ago and my research has helped me to keep that control which is so important to me.

I guess I had fallen victim to my own narrow mind and tunnel vision yet again. I was naive enough to think that the Chemotherapy and recovery from that will be the only battle. When in truth that is only a fraction of the fight. Managing your own emotions and staying strong enough to admit you don't feel right is just as important and going to the hospital every other Friday for my treatment.

I'm also pleased to say I have now resumed travelling in cars with my friends, food shopping and I'm no longer tempted to kick you in the shins should you go to give me a cuddle! :)

x KJ x

Daunting Realisation

Over the last few months I have been on a journey of perseverance and roller coaster of emotions, generally managing to take the ups and downs in my stride. Each obstacle in my eyes has been a learning curve and each lesson learnt will make me a stronger person. Never once have I allowed myself to wallow in self pity nor have I had a morbid out look over this very real nightmare. That was until Wednesday evening.

After my latest chemotherapy treatment on the 16th of April, I was in relatively high spirits and my recovery rate was much quicker than any previous treatment. I was out of bed by the Sunday and my mouth had not ulcerated so aggressively due to a new steroid based mouth wash. Life was good! :)

Of course the elation of feeling better was short lived and I woke on Monday feeling so incredibly unwell. This progressed through to Wednesday when I also had to contend with cabin fever which had well and truly set in and I was going ever so slightly mad! I was experiencing shortness of breath but put this down to anxiety or stress and decided to head to the Garden Centre with my mum to prevent me pulling the precious, last remaining hairs out!

I quickly regretted my decision as the sweats and shakes kicked in and my shallow breathing turned into gasps of breath. As soon as I began to feel a deep stabbing sensation I knew I needed to get someone to take a look. We dashed to the hospital after panic buying pansies and pork chops and were quickly taken though to the triage Nurse and straight on the Majors ward.

Due to the obscene amount of drugs I take on a daily basis there are many tests and procedures the medical team have to follow. I was linked up to an ECG machine, which measures your heart beat and bloods were taken. I presumed this was all part of the procedure. After a short while the Doctor returned to tell me that they had seen something abnormal on my ECG, and the team will be treating me for a suspected pulmonary embolus, which is a blood clot in my Lung or an artery in my heart.

It was a good job I was on the hospital bed, because I can guarantee my legs would have given way on me at that point. For the first since diagnoses I questioned whether I would prevail from this disease and make it to fighting fit once again.

x KJ x

Unwelcome Effects

Time flies when you're having fun and apparently when you are undergoing treatment for Lymphoma! I have already had three treatments and am due to start my fourth this Friday which will signify the end of my second cycle. I have all fingers and toes crossed that there will only be around four more cycles and treatment will be over by September... I am already planning a 24th Birthday/ Remission party!

I have held off on updating the blog on side effect and how the treatment makes me feel until it fell into a routine or a pattern of some sort. Unfortunately this has not happened and each Chemotherapy treatment has had a different effect on my body and mental state. I have listed below the side effects that have presented themselves on every occasion.

I have mentioned previously there is no pain when the drugs are injected, I am however hit with a wave of nausea and become immediately drained, losing all strength and colour in my cheeks (even if I have fake tan on!). Effectively your body is being poisoned and my bed is the only relief, waking a few hours later to begin the cocktail of prescription drugs.

The nurses can not express strongly enough that prevention is easier than a cure for the nausea. So I take anti sickness tablets containing steroids to keep the sickness at bay, unfortunately the steroids cause severe sleep deprivation which conflicts with the extreme fatigue caused by the chemo. It is like Chinese torture and has left me in tears on more than one occasion. The course of anti sickness tablets are over within 72 hours and as you enter into the third day your body hits a complete low and getting out of bed becomes nearly impossible, this is because the steroids actually provide your body with a boost. Calamity-Jane seems more apt than Kaleigh-Jane at the moment.

On top of fatigue, nausea, loss of taste buds and hair loss I have also suffered a relatively rare side effect that causes my tongue to swell and my mouth to become ulcerated leaving me the proud new owner of a speech impediment and unable to consumer food. My diet for the first five days consists of 9 different types of tablets, Water and Mini Milks... I know once I am in remission the sight of a mini milk will make me shudder! I think that is the worst part of it all :)

Only I could call my blog style and survival and then develop a lisp!

x KJ x