The Mountain

My scans are back, and the words are something a cancer survivor will never get bored of hearing.

No Evidence of Diesease, stable response.

 *Breathes an overwhelming sigh of relief* 

So why am I sat here 4 days later, writing this blog feeling completely helpless?

I for one will never take a clear result for granted, I know it's something so many in my position pray for; but what about those around me? Is the fear still surrounding them like it is with me, or after my reoccurrence 6 months ago has a clear scan just become expected, because I'm on treatment and it's 'bound to work.'

I don't feel like I'm coping with this as well as I should be, I'm feeling back at that point I wrote about last year, where The Storm of Cancer hits, people move on, return to life as normal and you just can't. 

Having just lost my Uncle to a relentless strain of Oesophageal cancer this week, I feel vulnerable, threatened and scared at the speed in which it took him; he fought really hard, yet it still won. It is hard to loose someone, it is also hard to loose someone to the same disease you have.

"But you look so well" people tell me.

When really underneath my smile I often feel like a fraction of the person I once was, hurting yet striving to beat this; to feel better and maybe have just a few days where I don't feel so poorly. Somedays I feel out of strength, physically and mentally, like I'm not getting where I need to be. Taking all these tablets that kill anything and everything in sight, good cells, bad cells, leaving me weak; waiting for the next scan result to tell me it's come back again and that once again I have to get up and fight. I push every single day and I'm tired of it. While I have to be confident I will win this, I just want Mark and I to be able to put this down and get out whenever we want, but we can't, it's our life now.

Then after a good cry to Mark, halfway through writing this blog I read this... 

"Maybe your motivation isn't the problem, but that you keep pushing a boulder up a mountain that only grows in size the more you push."

Jamie Varon, Huffpost.com.

In other words, stop making your pain worse by pressurising yourself to get ahead.  

For now I am ahead, just because I'm not at the top of the mountain looking down, doesn't mean I'm not doing well. The climb in front of me is high and yes it's scary, but if I keep pushing myself to get to somewhere I think I need to be then I'll only make it harder.

Perhaps I should stop beating myself up, I'm angry, I'm typing this blog really fast. Yes I'm pissed off I have had to face cancer, that I'm told it will keep trying to come back and that I may have to spend the rest of my life on treatment. I'm REALLY angry about this today, I'm even angrier at the fact it's taken another member of my family. 

So now having read this article I'll sit and allow myself a few days to stop trying to be so "strong". If today is a day I feel weak, then that's ok.

Maybe tomorrow I will feel like it too, but we will see. 

You can read the full article by Jamie Varnon here, it will resonate with a lot of people for all sorts of reasons.

Thank you to my best friend for finding it and sharing it. ❤️

World Cancer Day

Today is a day to remember those we've lost, support the ones still fighting, and celebrate those who have beaten Cancer.  

Its a long road, it's not just one day, but a day for people to stand together and support each other is necessary to remind everyone that one day we will beat this for good. Some people will want to be known on a day like today, others might just want to carry on their day as usual.

Either way we must keep going. ❤️

Empathy.

As lovely as it has been, I'm not going to pretend otherwise, Christmas has been tough this year emotionally. I have felt at times like both myself and Mark have had to put on a smile when really we are both struggling to accept what's going on. While people say I'm brave, quite often I don't feel it; I'm just trying to deal with something, without any choice but to remain positive.

This year has been full of ups and downs, from Mark severely breaking his leg, loosing my Grandad to Alzheimer's, to then finding out my cancer had returned; we finally welcomed some great news as Mark and I got engaged! ❤️

One thing I have realised this year is the positive and negative emotions caused by those around you. I am very lucky to have a loving support network around me, from Mark to our family, a handful of fantastic friends and nurses, they (especially Mark) are who make me strong and keep me going. They get me and even if they don't really understand at times, they try to pretend like they do, which is just as comforting

I have always been very conscious that my having cancer doesn't overshadow the issues that my loved ones face, I always try to ensure that they know I'm here for them whether the upset is big or small. I have never advertised my struggles, I barely even promote this blog for fear I'll come across 'self indulgent' or like I'm moaning myself.

I think the thing I've realised is that until someone is in your shoes, they never really, truly understand the torment you face when dealing with a life threatening illness. I now understand I can't make people feel things they don't feel, or look at the world the way I do now.

'Live in the moment'

'Don't take things for granted'

'Appreciate what you have'

I'll be the first to admit it, it's exhausting when really it should be so simple. It is simple, but only when you know all you have could be taken away from you in a second. Cancer and other life threatening conditions can take the people you love away from you in seconds. I have watched several close people loose loved ones to cancer and other illnesses, as they watch their worlds get turned upside down, they still come out the other end so gracefully. 

To help myself deal with this emotion I have made a conscious decision to surround myself with those that make the effort to at least try and see things the way I do. If they try that's all I can ask and I am so grateful for it.

It's called empathy.

I will be surrounding myself with those that embrace what they have, I'm beginning to feel I cannot cope with being around those who do not appreciate what they do have.

We all have bad days, stress and huge worries, I'm not implying my problems are worse than those of others, but my tolerance of such negative attitudes is getting worse.

It's hard to watch yourself, your partner and others desperately try to fight against diseases that kill, while others expect to live life like its owed to them. I'll tell you now, It's not. I live my life weeks maybe months at a time, while Mark & I discuss years ahead with optimism- my head is in the now, where I can see things, expect things and know these things will happen.

I try to take a few good things from each day, the rougher things get the more simple this becomes. The sun on your face, your favourite song in the car, little things. However cliché this sounds it's the truth. I drive to work everyday thankful I'm well enough to even go to work, even if I do hurt and my career has had to take a side step because of my illness.

As I get home I look forward to seeing Mark and Mills (our beagle) in our home, I feel content, like I've achieved something with my day. It really is that simple, why do we all put so much pressure on ourselves to be anything more than that?

Just embrace what you do have, I intend to. 

In the Press

So the word is out, this new Immunotherapy drug previously touched on by my Oncologist has been given the OK by the FDA and NICE for use in Europe. Meaning we now have a potential option if the drug I'm on should stop working. For the last 6-8 weeks I've gone to bed feeling sick, not sleeping and feeling hopeless as the realisation of what I'm facing sinks in. I'm sure my family and close friends have felt the same but they don't show it, and as for Mark, well he just keeps me going, rarely does he talk to me about him, but I wish he would.

I've fallen apart in front of my counsellor and needless to say I'm writing on here most weeks so things clearly aren't sitting well at the moment. How long can I keep this up? 

Then I read this one morning before work. 

So this means the expensive (better) drug I was told about could actually be happening? 5 years ago if you were diagnosed with Melanoma, there was hardly any treatment. And now there's this? I remember leaving for work that morning feeling elated, relieved, confused, most of all I had my hope back again. 

But as it goes with Cancer, you can never look too far ahead, while there is a possibility I could get this 'Jaw Dropping' treatment (take all words from the Daily Mail with a pinch of salt when it comes to cancer) further down the line. I can't have it without going under treatment with the first drug (the not so good one) first. All this they don't seem to mention, basically you have to become resistant or non responsive to both the drug I am on now, plus Ipimulab before you qualify for the new Pembrolizumab. So a lot of time can pass before you reach it, and in my and many other people's case, time is very precious.

So yes, overall the hope is back, but with a few twists and turns along the way. As it goes I'm hanging onto the good news, and we'll deal with the rest as it comes. 

Engaged!

We finally took ourselves off on our trip to Rome. It was originally booked for us to go in May, but what with Mark breaking his leg and my cancer coming back (disaster couple) we had to delay.  

Anyway the time to go arrived and boy did we need a break. We hadn't been away together for a year and a half. We decided that city breaks were a good idea for us both going forward, neither of us really enjoy sunbathing (I'm banned anyway) and this way we had the option to explore and relax at the same time. It was great, I can't remember the last time I had that much energy, we were walking up to 4 miles a day taking in the amazing surroundings. Looking back I can see how much emotion can exhaust you just as much as treatment. It doesn't get easier, you just get stronger, but even that is tiresome in itself. A trip away gaves is time to be a 'normal' couple and a gave us both break from all the scans, needles and worry. 

Three days into our trip and we go for dinner, walking back, outside the Coloseum a very nervous Mark gets down on one knee and asks me to marry him ❤️ and of course (after a few tears) I said YES. All of a sudden our little break away was turned into a milestone. 

The next day we wondered around Rome with smiles slapped across our faces. we started to discuss when we'd like a wedding, who we'd like to be a part of it and what kind of thing we'd like. Coming home it was lovely to be congratulated by family and friends. The last few months have been tough, scarily tough, it was great to finally have something so great to tell people about. We deserved it.

Mark is my rock, he is incredible. He brings be into the now whenever he can see I'm struggling, he gives me perspective, reassurance and makes me feel safe, I know this isn't easy for him, but I know he has given me this ring to show me that whatever happens, he's in it for the long run. Could I cope as well as he appears to if the shoe was on the other foot? I don't know. 

Over the course of the next few weeks, understandably our family and friends are keen to know when we plan to get married. We have always talked about what we want for our future but at the moment it has become very clear we do not need or want to rush. I must admit you right now the thought of planning a wedding is daunting, things can change with Melanoma very quickly with little warning. To me, this ring is more than the start of a fancy knees up, and I know people want to celebrate us, with us, and when we do it will be amazing. We still have a way to go to get me back on track. Right now I look at my beautiful engagement ring as a symbol that I can look at every day to know I'm not alone, I'm loved and protected and right now that's all I need.

Where you go I'll go

Somedays I just want to tell Mark to move on without me. And this particular day was one of those days. It's around six weeks since my re-diagnosis and we have a check up with my oncologist. He has since moved me onto a drug called Debrafenib, same treatment, different brand, just with less and more manageable side effects. We were all reluctant to change given the Vemurafenib was working, but he tells me this way I'll cope better with the full dosage that I need to be on. Mark and I make our way into the meeting as optimistic as we can be. I know Mark hates these meetings because my oncologist can't give anything away, he has to be straight and quite often it's not what we what to hear, I'm so desperate to protect him from the reality, I sometimes go alone. 

We sit down and already I can't feel a tension in the room, my oncologist has to make us aware this type of drug won't last forever, and in some people it only lasts up to 6 months. Following that we only have access to the first immunotherapy treatment with the low response rate, which as a professional, he doesn't rate at all and to move me to this would put me in a dangerous position. Suddenly the hope we'd gained from my scans began to fade. We are told there is a newer Immunotherapy treatment, which has a much better response rate, but at the moment it is only available privately at a high cost. I can see Marks struggle to accept this and we are told we just have to wait and see what happens. Six months? It was stuck in my head and I know it was stuck in his. 

We left the appointment feeling pretty hopeless with a review in a month, with not many options we just have to hope this drug does the job and lasts for as long as it can; thats longer than the sixth month average.

We are sat in the car driving home and the conversation no young couple should have to have, happens.  The one where we discuss how this affects our future, health, starting a family.

My heart sinks, I already know that my reoccurrence has put the brakes on a lot of things for us as a couple and I know Mark knows this too, that this conversation is just his way of processing the situation as we drive away from Oncology. It his future, our future.

 "Yes I know, I responded, but we are a long way from that; lets just get on track first and we can go from there. I'm not any use to a child if I'm not well." I try to gain some perspective.

The problem with this conversation is that it goes far beyond actually being able to make and have a child, something which is hard enough as it is for any 'normal' couple but actually making sure you are around to bring that child up, to help and watch them grow without cancer getting in the way. We have a long journey ahead and right now we can't guarantee any of this is possible. 

But still he wants to be with me, he's in it and this is just one of the problems we have to face. I try not to think about it too much, if I can get pregnant, have a child and even be around to watch it grow. Let's hope so. Even if we adopt or similar for now we'll tell ourselves it will happen and we will get the chance. 

Despair

Needless to say the following three weeks have been tough, physically and mentally for me, Mark and my family. The treatment did exactly what I thought it would do, made me sick, weak and helpless. I was in what I can only describe as despair, it was worse than last time, because this time it had come back and I was lacking the strength to fight. I weeped and Mark weeped as he watched me be sick, he had to help me walk, try to make me eat and all I could think is what will happen to him if anything happens to me; at times thought to myself this cancer was actually going to beat me.  

Over the course of three weeks all I could think about was what if this wins, what if the meds don't work this time and the cancer has become resistant. 10 days in and the side effects were at their worst, constant sickness, chills, horrific aching all over my body and I was finally given permission to drop from 8 oral tablets to 6, which I knew I could cope with like before. I gradually got my strength back and with that some of my positivity. Quite often it isn't the first signs of cancer or a reoccurrence that make you sick, it's the treatment, which is why it's so hard to stay upbeat as your body takes such a battering. I couldn't even look at Mark or a family member without wanting to breakdown and cry, I felt so scared and I couldn't tell them the things that were going through my mind as I was also trying to protect them; I could not stop thinking the worst was going to happen, to the point I found myself having to shout at myself out loud to stop these thoughts.

​It's a Thursday and scans came around, they were all standard, MRI of my back and brain and CT of my body. Mark is due to go on holiday the following Monday and I just pray the results don't come back before he leaves, I needed him to go away and enjoy himself and I needed a break from having to look brave. I could feel myself visualising ways he could carry on without me, thinking about his friends and family, my family, anyone and everyone that could look after him; it was the most horrific feeling. What's worse is I know he's thinking the same thing, and he has no control over what happens to me; he should not have to deal with this.

Sure enough (reluctantly at first) Mark left for Croatia that Thursday morning and I head into work. I am now working part time 3 days a week, enough to keep me in a job but not too much that I exhaust myself. I enjoy my job, I enjoy driving to work and being around Tom and Emma, it's like an escape to focus on something other that myself and cancer, it keeps me motivated; too much time off is not a good thing for me.  Its 1pm and everyone else has gone to get lunch, I'm eating mine in the garden and watching an airplane cross the sky, as I look down to see my phone ringing. It says withheld number, which usually means it's my nurse. It rings and rings and I freeze. This is it, it's my results, just when I don't want them, Mark's away, what do I do?

I watch the phone ring a few more times and I push to answer, it's Stephen, he's got the scan results. I can't breathe, everything around me froze. 

"Sweetie I have your results"  he says calmly.

"Do you want them?" 

Arghhh... shit, Yes, no... Wait, yes ok, I quiver. 

"Well your brain scan is fine, all clear, spine is showing the same inflammation we still aren't sure what's going on there, it could be something else not related; but your CT says complete response, NO EVIDENCE OF DISEASE!" 

I sob down the phone and say thank you, Stephen asks to see me in a few days, tells me well done and with that, he's gone.

I put down the phone and let out a scream. It's worked, it's working, it's gone! I can feel myself pulling back every second of the last three weeks that has been spent worrying, every cry, every thought, every panic. I've got another chance to beat this and I don't have to leave anyone behind.

I text Mark who's abroad, and call my family to tell then we are back in control.  

The despair subsided and for that very moment, once again I am cancer-free.  

What now?

The following morning I am surrounded by my parents, sisters and Mark on the ward as my oncologist arrives; he has stern look on his face and I start to wonder how he does this everyday. He sits down and tells us what we are all aware of, my cancer is back; only now he also informs me that there is an enlarged lymph node on my lung, and one on my abdomen and as a result it is likely that this and the back pain is also linked to the melanoma found in my neck; it has spread. I didn't really react to this I just listened, I'd always known this was a possibility, but even hearing it still didn't quite hit home.

My mind felt numb as I looked out at the clouds in the sky. 

Does this mean I am stage 4?

My oncologist says there is a new immunotherapy based treatment available that allows your immune system to fight the cancer, but the response rate is low at 20% he tells us he only has one in five patients respond and sometimes not even that; so his decision is to put me back on the same type of chemotherapy based drug as I was on for the clinical trial last year.

There are two brands of this type of drug, Vemurafenib which I was taking for a year, and seemingly kept the melanoma at bay and a second called Debrafenib. The manufacturer of Debrafenib was not managing supply and demand at the time so it was unavailable meaning I had to go back onto Vem, with much harsher side effects- and this time I had to go full doseage which before I couldn't cope with, in a hope to stop the melanoma quickly.

These drugs work quickly, with an 80-90% response rate you can see results in a matter of days, but the problem with the drug is that the cancer can become resistant to it and stop working at any point, so this is never going to be a long term solution and I'll only know if it's not working should the cancer not respond.

So home I go later that day, tired and drained with a bag of chemo drugs I thought I'd never see again and a scan and review in two weeks; where we could only hope we'd see the cancer has shrunk. 

I feel angry this is happening to me and my family again. 

Fight or flight

The good thing about writing is that it helps you sleep. At the time, when things are happening I should write more, unfortunately when things do go wrong it all happens so quickly I only ever get the chance to write about as afterwards.

Following my admission into hospital for the 3rd time in 2.5 months I am told by a doctor that the biopsy of the lump in my neck wasn't clear enough and that they want to take out and test the whole lymph node, as precaution. At no point did I honestly think it would be melanoma, I go to sleep that night after the small operation feeling ok, dare I say well even.  

Instead, two days later on the Sunday a doctor walks into my room unannounced and sits on the chair next to my hospital bed. He asks me how I am and about my back pain to which I tell him it's much better, the cocktail of meds they have me on are working nicely, I'm mobile, no sickness and appetite is back; after all this he facial expression changes to something more somber as he tells me what all patients dread to hear. "I'm afraid I've known this for a few hours now" he says quietly, "And I don't really want to make you wait until tomorrow when your oncologist returns, I'm sorry but the results show the melanoma has come back."

And that was it... In less that 60 seconds I'm back in the nightmare, by myself with the doctor, he tells me my oncologist will come and see me first thing Monday morning, with a plan of action. Until then I can go home for a few hours to see family and return to the ward that evening.

Then like something out of sliding doors, within seconds of the doctor leaving my room, my Dad and Mark walk around the corner, both blissfully unaware of what he has just told me. Looking at them I tell them.

Its back, I'm sorry, it's come back.

My Dad throws his phone onto the bed and shouts loudly, while Mark holds his head in his hands shaking it from side to side. Once again I've had to pull the two Men I love the most back into pure despair. I can feel the rage and upset burning inside me as they both throw their arms around me, and with that I start to enter fight mode again. I now realise I have to start again, fight for myself and for them and if I want to win I'm going to have to fight like I've never fought before. 

Here we go again.

Looking back, January to May was pretty plain sailing. I was beginning to feel well in myself and while I wasn't feeling back to 'normal', life was heading in the right direction.  

I was exercising quite a lot, as it helped my anxiety living with a disease I was told had a 60-70% chance of returning. Early May I noticed a pain in my lower back that I'd put down to overdoing it on the spinning bike, over the course of May to June it began to get worse, my toes were tingling and a pain was raidiating down my legs, it sounded like sciatica; but then one day crossing Whiteladies Road in Clifton my left leg gives way and a van has to brake hard to avoid hitting me. It was like my leg just wasn't in tune with the rest of my body and I was left led in the middle of the road. After being helped up I realised this was serious, something was wrong with the nerves in my lower back. I call my nurse to inform him and within 10 minutes of him speaking to my oncologist a taxi arrives to collect me to take me to emergency triage. I arrive to a room of doctors who begin neurological tests and tell me I'll be staying overnight for MRI and CT scans in light of my history with Melanoma. I was shocked and scared but relieved that I was being taken seriously, because I too had had the same worry for weeks. With that I was taken into a ward with 5 other ladies, all who were undergoing early or late stage treatment for Cancer, some older some younger, some with hair others without and I remember thinking to myself, why the hell am I back here so soon, surely it's not come back already; were the doctors right...could I really be back in the nightmare? 

24 hours passed and I was given the news on the Friday evening that both my scans were all clear, except for a swelling on my spinal nerves but with no evidence of melanoma. I was relieved, drained, exstatic, exhausted, so many emotions at once. The doctors were still confused as to what had caused my fall and ordered a lumbar puncture for the following Monday to take fluid from my spine to check for traces of malignancy, but was told It should be fine. I called Mark to tell him the news, after putting the phone down I breathed a sigh or relief, shortly after a text from him followed.

 "That was close Jen, I thought that was it, I thought it had come back". 

I was sent home that weekend. 

A week or so passed and the results came back inconclusive from my lumbar puncture, not enough fluid was taken. I'm not sure if anyone reading this has had one before, but it's basically a needle being put into your lower spine, while you lie on your side with your knees held up to your chest. It's uncomfortable but thanks to the anaesthetic it isn't supposed to hurt, my nerves were sensitive and I could have done with more of the good stuff to numb it. It did hurt. 

"We're afraid we are going to have to do another lumbar puncture" says my nurse on the phone. SERIOUSLY?! And with that I'm called in the next day to repeat the process. I was tired, my body was tired, the meds I was taking made me feel sick and all I could think about was those last few months where I didn't have to deal with any of this shit. When I felt well and relatively free of the emotional drain that comes with cancer. Sure my scans were clear but they still couldn't tell me what was wrong and why I was in so much pain. People can't see pain either, which is hard because on the outside you look ok, but inside you hurt and the stress makes the pain worse. 

It was now mid June where things got really real as a small lump pops up above my collar bone. It didn't hurt, wasn't red and was hard like a pea...dammit. I point this out to my oncologist during an appointment about my back pain and immediately I am scheduled for a biopsy. 5 days later I'm back in that damn reclining chair for an ultrasound as a needle takes a sample of the lump. 7-10 days and we will let you know the results, says the lady, standard procedure and the memories start to flood back from my first ever biopsy as I leave. Now to keep myself busy. 

10 days pass but no results, I usually say that no news is good news, then all at once I wake up on the Monday morning in the worst pain I have ever had, liquid morphine isn't even touching my back pain and I call my nurse to tell him I can't deal with it anymore, I couldn't lie down, stand up or do anything. Enough is enough says Mark and with that I'm admitted into oncology and the missing pieces start adding up, they haven't told me my results yet, I think I know what's coming next. 

Counselling and Support

Counselling is still a subject many don't feel comfortable discussing, even though at some point in our lives many of us will require support for various mental health issues. 

My own need for support became obvious as I was called up for the cancer battle, unaware, unprepared and enlisted into a situation I hadn't signed up for, not only did I have to fight it, but once the cancer was gone I had to process how I was going to live past it and not let it define me as a person.

Once diagnosed, you are faced with lots of information to process in a very small space of time, all while you simply aim for one outcome -to beat it. What you often don't have time to do is process how you feel, I had no time for emotion or crying because I was too focused on beating the disease I had been dealt.

As a result of this, the Friday I was told my operation was a success was followed by one of the hardest, loneliest weekends I'd ever known; it was at this point that the exhaustion and upset from the previous six weeks began to burst out of every cupboard in my head I'd shut it away into. The two days after my 'all clear' left me shocked and inconsolable as the reality of what had happened finally hit home. It should have been the happiest weekend celebrating being cancer free but instead I began to realise I was only just starting to come to terms with what had happened to me.

It was the start of December, my Birthday and Christmas were on the way and I couldnt leave the house without welling up into tears, the thought of going back to the job I loved petrified me, listening to people moan about tiny 'problems' infuriated me; how was I supposed to settle back into my old life and move on when I felt like such a different person? I could tell people around me were wondering why I wasn't jumping for joy. It was as this point I realised that if the overwhelming emotion was happening to anyone else I would tell them to go and seek some support, so finally I did.

Through Macmillan, I contacted  a charity run counselling service called Positive Action on Cancer (PAC) who found me someone to talk to, the lady I worked with made me feel really comfortable and praised how I'd got to the point I was at, but reminded me that even the strongest of people need help sometimes, she could see the pressure I put in myself to get better quickly, quicker than I was emotionally able to; she was a kind natured, confidential person I could go and vent to, she helped me realise what was important, how to prioritise my own needs before others and consistently reminded me of the enormity of what I have faced when others, even the people closest to me began to forget.

I didn't go to a counsellor because I felt I had no one to talk to, I had plenty of kind family and friends all ready to listen. I went because I needed an impartial, unbiased person to help me work out how to move forward, someone who didn't want to make me tea and cuddle me (however lovely that is) I needed someone who understood the issue I was faced with and helped me deal with it; this is the difference between support from family and a counsellor; I can say things to her that I often can't say to my boyfriend or family for fear of worrying them anymore than they already are, there's something's you just can't say to the ones you love. 

I still see my counsellor monthly as I continue to adjust to everyday life, I imagine I will continue to see her for a long time, at least until I finish this clinical trial. My family and friends know I still go, which also reminds them I'm still not 100%.

It is important to remember that whatever the issue, there is no longer a stigma around counselling. It does not make you unstable of put you into a taboo category; realising you need that extra crutch during and after hard times is a great thing; for me it's one thing I couldn't have got by without. 

Suntan Talk

It's a conversation I never thought I'd feel uneasy about, but as summer comes around I am starting to realise that people are going to talk about their suntans and forget it's a sensitive subject for people like myself who have had Melanoma.

I have no intention to preach to anyone about sun safety and tanning, what anyone chooses to do with their life is totally up to them. I know a large majority of people who read my blog are people with Melanoma, or those who know someone who has it, making them increasingly conscious of skin damage. Truth is, if I hadn't been diagnosed I probably would still want to tan, just like everyone else; generally speaking- it's not until you experience something like this you start to take more notice and you are forced to change your attitude.

The fact is I was diagnosed with Melanoma Skin Cancer and it is bloody frightening! It is not a dodgy mole that can just be cut off, it is serious, it is not 'just skin cancer' and it can try and come back.

I've got a bit of a bug up my arse at the moment, following several comments I'm beginning to realise the inevitable, that people are going to forget what has happened to me and consequently feel its OK to talk to me about getting a suntan this summer. I know it's just innocent everyday chat to many but honestly, I am starting to feel like I can't cope with anymore people to talking to me about their holiday tans or using sunbeds. I understand it's a personal lifestyle choice, but because of my diagnosis it's all a bit too raw for me, it's not really something I want to hear about; others in similar situations also agree it feels offensive to have people talk to you about their desire to tan, especially after what you've been through.

I will never know if my Melanoma was from UV damage, if it was hereditary, if the mole on my arm was alway set to turn cancerous or if it was just bad luck; but it has happened and it upsets me everyday to think I could have possibly contributed to it. While I wasn't a sun worshipper, I did sunbathe and sometimes used sunbeds; now I am confrontated by situations where I hear loved ones and friends doing the same and it's hard to listen to. I can't help but think that If people really knew the pain I went through and how my diagnosis still effects me they probably wouldn't talk to me about something so superficial as a suntan, or even continue to tan themselves.

Perhaps I'm a little jealous others don't have to worry about the effects of sun on their skin for the rest of their lives like I do; maybe I'm just being oversensitive and the subject of tanning will get easier to stomach in time; either way I do feel people should respect this as something I don't need to hear; I'm sure anyone else in the similar situation would expect the same.

Should You find yourself in the same position having had melanoma, remind the person speaking to you that you aren't the best person to discuss tanning with given your upsetting experience, some might not even realise the effect that talk of suntans has on you; remember it's the other persons choice and that you just don't need to hear about it. 

How sunscreen actually protects your skin.

I came across this video on the Fashion Telegraph it shows us how UV rays are blocked by sunscreen and how skin damage occurs under UV light, most of which we can only see as a 'healthy' glow...

We showed people what they looked like in ultraviolet, & wondered aloud if they wanted to put on some damn sunscreen already.

Sunshine Style

As Spring arrives and the evenings get lighter, all around people begin to get excited for summer, but what happens when you unwillingly become a part of a percentage of people that sun actually poses a threat to? I love the sunshine, the feeling of warmth of your skin and summer evening sunsets and I'm determined not to let Melanoma effect me any further going forward. So I have started to collect my favorite inspirations to be safe in the sun, something which we all should take note on, unfortunately being 'Sun safe' is often considered difficult and not a priority when it comes to looking good. I have set out to prove that sun safe does not mean 'sun-less'. I certainly wont be hiding come the summer months but I do intend to remain conscious of it; so here is my little bit of 'sunshine style' inspiration for those who want to do the same...

Loose cottons and UV parasol...

A shady retreat under retractable canopies...

Wide-brimmed summer hat from ASOS, take your pick!

UV Protective Sun Scarves from Bloxsun

Wide frame sunglasses to protect those pretty eyes.

UV protective gloves from Bloxsun, the sun's rays can get through car windscreens too!

Beach safe rash guard from J Crew

UNIQLO produce a wide range of UV basics

THE best sunscreen, feels light and can go up to factor 100. Also comes in a face lotion and spray for easy application.

Parasol protection on the sand.

Long sleeve Kaftan Cottons.

Now are you excited for sunshine?

The Storm of Cancer

Many say that cancer is a lonely place and that during cancer you can be surrounded by so many people and yet still feel lost and alone; I've never really had a time where I felt 'alone' I've always far too supported to think of myself as being lonely, perhaps until now.

It's certainly not anyone's fault and not a cry for help, but post treatment life moving on can be a desolate place, most people, even those closest to you will assume you're over the worst and life can return back to normal; for them it might which is great, but for the main person involved it may not happen quite so soon.

The reason I am writing this is because with the more people I speak to in my situation, the more frequent this topic comes up. Post treatment, I have found I've changed, what motivates me and how I want to live my life has changed; most, if not all of this is for the best but sometimes I have this strange sense of detachment, my mind can be elsewhere; I know I must still trying to process what has happened. I cant help but feel that I'm not where I thought I'd be at this point, I assumed that I would be a lot more ready to 'move on' fit to take on new challenges and celebrate life as 'all clear'. As a result I put pressure on myself to be better than I'm ready to be.

In a search for a reason as to why I have been feeling this way and how I can overcome it, I came across a book called 'The Cancer Survivor's Companion' which that focuses on life after cancer; how to deal with anxiety and provides insight into the thinking process of others in the same situation as you. The aftermath of cancer is stated as the time an individual will feel the least supported, which is why this book written.

I must admit I haven't read the whole book, the most helpful part of the book so far has been within the first few chapters and it describes exactly how I have felt lately and I imagine how many others have too post cancer.

Page 2...

This is basically it, a feeling of being stranded with so much to head toward but not knowing exactly how to get there. I have posted this post because I want people in similar situations to know that it is ok to feel this way, it is normal however strange it may feel at the time. As soon as I read this I was able to relate and from that point I was able to stop putting pressure on myself to just 'get over' what has happened, take it in and take my time to feel better. Slowly I have been able to move forward, focus on what is important to me and gradually I am beginning to feel a bit more like my old self and able to move on.

I would encourage anyone who feels like this to try and do the same in your own time.  

Nervous Energy...

The last week or two has gone ok since coming off the drug, better than I had thought, going back to work was good following a long break to keep my mind occupied and the last few nights instead of coming home and feeling tired I've  made myself exercise more.

So far so good, no heart palpitations or painful swelling, my body seems to be getting back on track. It's also proving quite good for my head, it's helping clear any nervous thoughts and the feeling of a cloudy brain that I've had the last 12 months; who'd have thought you could actually miss exercise?!

Being reminded why...

I often write this blog purely for my own benefit, sometimes I feel question if I should put my feelings out there and how I might come across, but I love to write. My blog quite is personal as I try to provide information I wish I'd had when I was diagnosed with Melanoma, especially being young, writing online can reach a younger audience. I always said if my blog helps one person then it was worthwhile, it turns out is has been.

A few months back I received an email from a lady called Karen, it was a very surreal and overwhelming feeling to read what she had to say...

Its always good to be reminded why you do something and for me this was amazing to receive.

Thank you Karen :)

Happy Christmas, trial is over.

That's right. I did it!

Well I did the tough bit, the year of drugs, invasive check ups and sickly side effects. I have taken 6 tablets a day for roughly 365 days, an oral chemotherapy drug in its later stages of research, with one aim; to prevent my melanoma coming back.

I took my last tablets on Christmas Eve in Somerset, surrounded by my boyfriend's family, with a huge clap and big smiles as Mark announces the news that I am about to finish the drug. As they clapped some knew the struggle I've had on the trial drug, others asked what I'd been taking and what happens next. 

So what does happen next? Now I continue to hope that nothing returns, that my life will slowly resume to something similar to what it was before my diagnosis. Truth is, my life will never be the same, I am now about to endure 12 months without the drug and the hope that this really is it.

At this point, my life is richer, more precious and I for one can't actually believe I've made it this far in one piece. I've been incredibly well looked after and have no reason not to be positive. I write this to remind me, as the excitement of Christmas fades, there's a slight sense of unease and uncertainly trying to return.

I have slept for the last two days in an attempt to refill the half empty tank I've been running on since I began the drug In Jan;  I am already planning how I will take on 2015 and what changes I plan to make. It is exciting, if a little nervewracking, but I've figured if I can do this, I can do anything, which is exactly what I intend to do. 

MRI memories...

Today was the day of my cycle 12 scans, one of them being the noisy MRI Brain scan. 

Its my least favourite scan, for whatever reason I am particularly sensitive of the thought of anything showing in my Brain.  

Dad met me at Oncology after work as we head to the Xray department of the BRI, the last time I went for this scan was a whole year ago as I was waiting to know if I could start the trial and the time before that I actually had cancer. Once given my favourite backless gown I am called into the room to begin, the MRI scan is 20 mins long and quite noisy. It is now one week to Christmas and instead of being out shopping and having festive drinks with friends, here I am being handed a pair of headphones and my head encased in a fixed plastic contraption. 

The nurse prepares the scan and notifies me of every stage throughout, they always try to make you feel comfortable and not rushed. It feels like you are in there for longer than 20 minutes but it is bearable.

Roughly halfway though the scan I can't help but think back to my first MRI and the uncertainty I faced as my surgeon and nurse had to determine the chance of spread to the brain. As I lie still I felt a tear fall down my cheek, I couldn't wipe it or move because my head was held still in a brace-like case. I breathed deeply, reminded myself how far I've come and wait for the scan to be over, shortly it's done and I am sent back to be changed. 

On the way out of Oncology we bump into my nurse, I give him a bottle of red wine as a Christmas thank you for all those appointments he's helped me through; he will be working late into Christmas Eve and back in on Boxing Day, helping lots of hopeful people like me, as we sit at home tucking into our next meal or open the next bottle of fizz.

The question of results is instigated by my anxious and impatiently caring father and Stephen reassures us he will chase them during the few working days before Christmas. At this point I had adopted the 'No news is good news' attitude and didn't want to hold out for results before Christmas, what if it showed something was wrong?

Until they experience it many people probably won't understand the way a scan result affects someone who's been diagnosed; in a split second it can change everything, that moment right before you are told you're 'all clear' you could otherwise be told you're not.

That is what scares me most about cancer.  

One Year On...

It was one year today that I was sat in a blue and yellow 'quiet room' in Bath RUH as a doctor told me the earth shattering news that I had Malignant Melanoma, a form of Skin Cancer which I later learned currently has no cure; following that news began the biggest challenge I could ever imagine, to go and fight it. 

Now one year on I'm sat thinking back to that room, the doctors and the phone call to Mark and my family after my diagnosis and subsequently what can only be described as the following days of hell waiting to find out my prognosis, how far the Cancer might have spread, where it could have spread to and if my life was about to be cut very, very short. 

Needless to say I am a mixed bag of emotions, happy but sad, proud but also scared. Elated that I have come so far just about numbs the feeling of wanting to scream really loud; deep down I still feel angry that I ever had to face this situation, at times I don't think its truely hit home, but still, I am eternally grateful to have come out the other side of it. I might not be as confident or as carefree as I used to be, but I am here and I feel strong.

I am high risk for reoccurrence, so while I have won the battle so far, I still have a long road ahead of me. I also have two more months of trial treatment and then the adjustment to life without the drug thereafter. 

While the last year has been tough, I am greatful for a handful of precious things that Cancer has given me. Strength, love and appreciation for what I have. Safe to say the person I was before my diagnosis and the person I am now might not recognise each other, but I wouldn't change that for anything. Cancer may have caused me, my family and close friends pain and immense upset as it shocked us into despair but it hasn't taken our determination and my desire to really live and to live happily, if anything it's actually made it stronger.

So here's to you Cancer, you had your moment, you've made your point but I think it's fair to say you've had your time. I have slowly come to terms with the fact that it will always be a part of me and the emotional effects will never be forgotten but I'm taking that as a good thing as I know now not to take anything for granted, ever.

Thank you to everyone who has helped me get through this last year, without you I couldn't have smiled through it like I have.

I'm off for a drink to celebrate :)