It’s December 2018 and I have neglected my blog for some time now for reasons which hopefully will become clearer in this post. Amazingly I have been given the all clear, where at my last scan in September 2018 I was told there was absolutely nothing there. I am still on regular scans, check-ups and appointments for things like mole mapping (no real moles are harmed in this mapping before any animal rights activists get worried). I’m not sure when I will be officially classed as in remission and cancer free, I think it’s around 3 years. It’s something I need to ask next appointment but for now I need to concentrate on the here and now and the short-term successes I have had.
Just recently I had a minor operation to have another mole removed and the results were all fine, which was a huge relief. My next scan is this Friday and I should get the results in January. Hopefully it will be more good news it’s the waiting that is the hard part.
I know over the past 12 months I have had so many successes however sometimes you just can’t see the wood for the trees even when the branches are poking you right in the eye. This couldn’t be truer for myself over past 4-5 months where I must have had a twig well and truly wedged in my eye.
A whirlwind of chaos
It seemed like I had only just braved sharing my journey in writing this blog than no sooner was it over. It certainly isn’t that I was disappointed it was ‘over’ by any means if anything it was nothing short of a miracle. In just around 12 months I went from having a minor operation, to having been diagnosed with Stage 4 cancer, then being put straight on treatment only to experience some life threatening side effects which I was then told no further treatment could be given, then to be told I was cancer free a few months later. Thanks to the miracle drug immunotherapy, the amazing doctors and nurses and hopefully a bit of my will to fight, health, exercise and attitude in the mix I had amazingly beaten this disease.
Everything happened in such a short space of time with such a whirlwind of emotions that it was so difficult to keep up with what actually was happening on a daily basis. I seem to have escaped this horrible disease relatively easily in that my treatment side effects were pain free up to a point. Sometimes it’s difficult to comprehend when I know people who have suffered so much pain, I hear so many stories, watch programmes on TV and then just become an emotional wreck. I often question how have I been so lucky and a fraction of guilt sits in the back of my mind. This along with an element of fear and worry of reoccurence then escalated into a lack of confidence and focus which is the complete opposite of the positive fighting, fearless attitude that people previously praised and commented on.
I started to change and felt somewhat a hypocrite in that I wasn’t fully practicing what I had preached. I then started to feel somewhat embarassed of my openness to being ill when I probably could have quite easily ‘hid’ it from the majority of people. These mix of emotions and the general hustle and bustle of ‘normal life’, still working while all of this has been going on meant that writing was put on the back burner as had my other rituals which had probably helped get me where I was today.
The aftermath and dealing with destruction
The thing I have realised just recently though is that it’s not over it’s something that I have to live with but not let it take over my life. I shouldn’t feel embarrassed, what I should be doing is using this experience to help others which was the main purpose of starting this blog in the first place. The last 4-5 months or so are all part of my journey whether it’s good or bad.
See physically I am in such an amazing place that I could only have dreamed of 12 months ago and I am genuinely so grateful. However for some reason unbeknown to me after what I know was one of the hardest times of my life I have been struggling in different ways. The painful and physical hard work seems to be over but what I failed and neglected was the power of the mind in this battle and how your body reacts to what your mind is telling you.
I have struggled to ‘slot’ back into where I left before I started this journey and have possibly been left in some state of shock. This was mirrored somewhat with my hair after a spell in hospital. Back in late February my hair started to fall out. I would wash my hair and clunps would fall out and I was becoming increasingly thin on top and short at the sides. When I discussed this with the oncologist at the time there was no apparent reason other than that your body can sometimes go into shock after a traumatic experience and hair loss can be one side effect.
With cancer I think many people now associate hair loss with treatment. Fortunately hair loss isn’t one of the side effects on immunotherapy. My hair loss was only minor and temporary it’s started to grow back but I can sort of associate how people might feel vulnerable about loosing their hair along with being unwell. I totally admire those people who have fully embraced their hair loss the choice whether or not to hide it is totally personal to that individual. What I did find out from my experience is there are some great wigs and hair pieces out there if people choose to wear them. I did get quite attached to some of the long hair pieces I wore on nights out. I simply clipped my hair in and was ready to go. I should wear them more often. On most nights out I bet there are very few people who have their own teeth, nails, eyelashes, eyebrows, lips or other body parts for that matter. A hair piece to boost my confidence or feel good wasn’t much different really when you look at it like that. I bet if most of us were totally honest we could remove our ‘sexiness’ with a single baby wipe! (me included). That’s why it’s definitely important be beautiful on the inside as well.
I first braved wearing it on a night out with my old friend Leila (she’s not that old, I’ve just known her a long time). I picked her up and we were off to go for a posh meal or date night as we call it (no it wasn’t Nando’s before you ask). I couldn’t decide if the hair piece I had in was too ‘my little pony’ shall we say. What, with my 5ft frame and what felt like a 4ft hair piece I wasn’t sure if it looked more like a mane than a hair piece. I had bought a couple of spares just in case so I brought the shorter piece to ask for Leila’s opinion. It shouldn’t have suprised me that when I showed her she found it more amusing to shove the shorter fuller piece in between her legs, take a picture and brag about her bush. I realised then that it didn’t really matter if I had hair or no hair. Real friends will take the piss out of you regardless just to make you feel ‘normal’.
Acceptance and Re-focus
I know I am not the same person I was before all this I just hope I am a better person somewhere inside even though of late it hsn’t felt that way. I have just been struggling to bring that person out smiling of late and I know it’s all in my mind.
I have been suffering with fatigue and aching joints yet had numerous tests to discover there is not anything physically wrong with me. I often feel as though I’m just ‘getting through’ the week and use the weekends to recharge my batteries. My early morning rituals have disappeared and what once was focus is currently a string of chaotic thoughts, and worry in my mind. I am still doing my healthy eating but maybe eat a bit too much dark chocolate and sometimes I question the purpose of it all when deep down I know the purpose. My exercise hasn’t been as frequent of late either which totally isn’t like me. I don’t think I’ve been the easiest person to live with either.
See when I was poorly my main focus was getting better and beating cancer. Each day was a blessing and I didn’t think too far ahead for fear of the unknown. I have now lost this focus and it has been difficult to re-ajust on a different path. My path has changed but for the better. I now should be enjoying life ensuring that there are no recurrences in the future it just might take a bit longer than I first thought.
Cutting the cord
When I was told I was cancer free it was a shock. With everything that had happened we were expecting to go to the follow up appointment hoping for some progress, but to have been told there was nothing there totally exceeded any expectation. There wasn’t that jumping for joy in the room like you would have imagined that came later on with tears of joy when we shared the news with family and friends. It was so emotional but yet strange.
Ater the news the appointments become less frequent, the scans become further apart you sort of loose that safety net you once had. It felt as though the umbilical cord of treatment, oncologist and nurses which I had once relied so heavily upon had been removed. I felt I was on my own, but like a new born baby you’re not really on your own. Your just no longer dependent on the cord that once kept you alive. You’re learning to survive and figure things out for yourself while those around you watch over you.
Like most people who have experienced major changes in their lives you just have to learn to accept what has happened. You need to learn from it and re-focus your efforts on the next chapter of your life.
I know that by writing I feel I can talk for hours and some poor unfortunate soul has their ear well and truly bent. But I know that it’s a way of finding that positivity and drive that beat Metastatic Melanoma which once was incurable. I also hope that sharing these thoughts show that not all journeys are plain sailing even when you think they are complete. Never underestimate the power of the mind. It can be powerful current which if not tread with caution can drag you under when you least expect it.
So, here’s to the next few months where I am going to focus on appreciating the here and now. Not pushing people away, avoiding nights out, building back some confidence and setting myself some short-term goals. More importantly being grateful for every day I am here and those that will always stand by me no matter what. I think they know who they are, if not I need to work on telling them more often.