Learning To Let It Go

All my friends know how organised I like to be, I love a plan, and don’t like going into situations without having a clear picture of what to expect. My work often revolves around waiting for people to get back to me before I can spring into action. Having as much information as humanly possible makes me feel like I have done my part, It’s a way of my being in control of a situation. Having cancer has meant that I am seriously lacking control and plans can change at the drop of a hat. I often joke that I am borderline OCD, however this means I can get stressed easily, and it feels as if I am going around in circles most of the time. The thought of disease spreading throughout my body, and of having no control over it makes me feel physically sick and anxious. When people ask how I am, I’ll say I’m ok 90% of the time, because it’s too difficult to articulate my true feelings over brunch or a quick text catch-up.

Cancer is lonely and even with incredible amounts of support from family and friends it is still a huge challenge. I don’t want to be the friend that nobody wants to hang out with because they are always feeling negative, so I have tried to keep some things to myself over the past few weeks, in the hope I will help myself and others around me. I want to enjoy time with friends focussed on other subjects, the ones that ordinary twenty-somethings talk about.

Dealing with such a bad diagnosis out of the blue has taught me so much about others, seeing both the positive and the negative. I have learnt from my initial Stage 4 diagnosis back in 2010 that some people will be there no matter what, they will show you what it means to be a true friend. The good eggs will laugh and cry with you, and be there for you even if it means that they have to listen to the same story 100 times (we all know I love a rant). They will let you rant and rave about life even if they have something really important to say. They will make you four different types of tea just to make sure you have the one you want, they will sponsor your 10k charity race, run it with you, or cheer you on in the cold at the finish line. They will travel from far and wide to see you even when you tell them not to bother, and remember when you have your hospital appointments, even when they are living in another time zone. I am forever in debt to these friends. I have no idea how I would react if I was on the flip side, so this is a shout out to my awesome friends both near and far. Thank you!

A couple of weeks ago I received results from my latest PET CT scan, and luckily everything is currently stable. I didn’t tell many people that I was having the scan, as I was trying not to talk about it so much in order to focus on other things. Yay for Pembrolizumab! For now I keep going on the same drug regime and I will have another scan in around three months time.

I am going to learn to let go of what I can’t control, and focus on all the positive aspects of my life. I am still here aren’t I? I’m still alive, and by all accounts doing really well. That Princess from Frozen has got nothing on me!

The Benefits Of Blogging

I’ve never been much of a writer, or a reader for that matter. At school I wasn’t particularly academic and had to work really hard for my good grades. Over the last few months I have found blogging has really helped me, not only is it a great to update people on what is happening without feeling like I have to repeat myself, but some of my friends have also said it’s helped to give them a better understanding of my situation. 

I guess often bloggers really enjoy writing, I wouldn’t say I’m a natural, but I am finding it easier as time goes on, and hope to keep the blog going as long as I have enough interesting things to say. Having said that, If I was asked to read my writing in front of an audience, I would hate it, but if I was asked to write my thoughts for the same group, then I think it wouldn’t be an issue. I’m finding it a great outlet for my thoughts and feelings. 

Writing is now very therapeutic, and enables me to think more clearly and process my feelings more easily. As I write I’ve been feeling less anxious because I’ve been getting things off my chest. Just seeing my thoughts and feelings written down somehow validates them. My last blog post, My Greatest Fears was the most difficult one to write so far. 

Through blogging I have accomplished something, I am surviving and I am letting people know that I’m still here. 
The down side of writing, for me, is I often wake up the night thinking about my next post. Occaionally I get good ideas and I probably should write them down immediately, but I struggle to sleep as it is, so I just try to remember and write them down when I get up. An uninterrupted night’s sleep is hard enough to come by lately.

Six years ago I wouldn’t have dreamed of creating something so public, it took me about 5 and a half years to even contemplate the idea of creating a blog about my life. I have found that there are young people like me going through similar situations, just reading other stories has made me feel less isolated, and other opportunities have come up as a result. I ran the 10k London Winter Run for Cancer Research UK a couple of weeks ago with family and friends, and through my blog had the opportunity the stand on the podium at the start of the race, sharing my story with others in a very public way.

Since making my blog public last October it’s been viewed over 10,000 times! My writing has been read all over the world in more countries than I’ve managed to visit in my life. People have read my story in countries such as Albania, Iceland, Taiwan, Indian, Columbia and the Carribean. The power of the internet is incredible! Thank you to all those who’ve read and shared my story so far, I really appreciate it. 

My Greatest Fears

Over the years I have been in a constant state of denial about my health, I guess I’ve always felt that accepting my diagnosis means I am no longer willing to fight for my life. I touched on these feelings in one of my earlier blog posts, Before I Kick The Bucket and I feel the time is right to talk (or write) about this topic again in a bit more detail!

Lately I’ve been finding it even harder to switch off knowing my next scan date is around the corner. I often lay awake at night thinking about my illness; sometimes I can’t believe it’s actually my life. When I’m proofreading my blog posts it feels like I’m reading another person’s story, not my own.

The bottom line is I am scared about what the future holds.

I try to live as normally as I can and not fear the future, I not to think about being a stage 4 cancer patient, and refuse to accept this is my life. For the most part it works for me, as I feel stressed when I think more deeply about how my illness has affected my choices in life, and the future I may or may not have.

I grieve for all the things I’m yet to achieve, and probably won’t achieve in this life. I hate that cancer will always be in control of my life and I have no say on how things will pan out. Although it’s given me a different perspective on things, I still feel angry about what I won’t have the chance to experience. I’m standing at the edge of a vortex, waiting to be sucked in at any given moment without warning.

Thanks to cancer I no longer feel bulletproof.

In many ways I am still the same person but ultimately I no longer have the same outlook the 17 year old Jolene did. Part of that is growing up but it’s also the harsh reality of the world I now live in.

I am all too aware that I focus on the things I cannot do, rather than on the things I can do. I know this is to my own detriment and I know I need to learn to accept it and move on but it is very hard. I don’t just mean this in a physical sense but in all aspects of my life. I am fragile and in so many ways I am a million miles away from the person I was before cancer took control of my life.

I always think “If I had known then what I know now, I would have done this or that differently”. I often dwell on the fact that there are some choices I would make differently if I had my time again, but who knows if it would have actually been any different. For example, I’d like to think I would have gone travelling but maybe I’m just not a backpacking kind of girl!

I’m scared I will not grow old

They say life begins at 30, 0r could it be 40? I’m approaching 30 later in the year, and I’m not really sure how I feel about it. On the one hand I’m so happy to have made it this far all things considered but as my friends and I have grown older I’m now becoming increasingly aware of how different things are becoming. Everyone seems to be moving on into the next phase of life and doing the adult thing and I’m still living in a constant state of limbo. I am not dating, getting engaged and married, buying a house, or having children. I see these as things which just aren’t possible.  My friends would say this isn’t the case at all, and they are probably right, but I can’t help but feel like the odd one out. I feel like cancer has robbed me of the chance to experience all of these things, but I also feel like I don’t meet the expectations of society. Why do we all feel like if we haven’t achieved certain goals by particulate points in our life that we are unsuccessful? It’s crazy really. What is success?

Given my prognosis it’s unlikely I will grow old, I find thinking about the future a huge challenge. I don’t have a five year plan; I’ve got a life limiting illness, so when I join in conversations and think about long term forward planning I find it extremely difficult. Of course, that’s not anyone’s fault and I know I need to learn to deal with this but each time I seem to be moving forward something happens which shatters my world and I have to start picking up the pieces again. I just want to stay well for as long as possible. Thinking about myself as an old woman is the stuff dreams are made of!

I’m scared I will be in Pain

My biggest fear is being in pain. At the moment I’m suffering a little but this is nothing compared to how I’ve felt over the years, in particular before and after both my bowel operations. There have been times when I have been in an indescribable amount of pain for days on end. I wouldn’t wish that kind of suffering on my worst enemy, and I never want to feel that way again. I can only Imagine what child birth must feel like!

I’m scared for my family

Undoubtedly over the years my illness has had a huge impact on my family. My biggest fear is not what happens to me, it’s what happens to them when I’m gone. 

I want see my younger siblings grow up, become adults and spread their wings. I want to be with them through every milestone, celebrate every success and learn from every failure, but I’m not sure I see myself there.

I worry who’s going to look after my family. I want to be there to comfort them and tell them everything will be OK. Who will be there for them in their darkest hours when they can’t cope anymore?  It won’t be me. I have experienced grief in recent years and the pain is still so real. What I wouldn’t give for more time with my wonderful Nan and Grandad. I hate the thought of my family going through that pain and not being able to comfort them. In some ways I get the easy way out, when my life ends I will be away from it all but my family won’t be, they have to live with that for the rest of their lives. Life is cruel.

I’m scared I will never fall in love

It’s hard to comprehend thinking about relationships when I feel as though I am standing at death’s door. I never let myself think about meeting a man and developing feelings of some sort. As my friends know well, I have huge barriers up when it come to matters of the heart, I’m not one to open up which is probably why I’ve been unsuccessful so far. Having not met anyone at university and then being diagnosed less than four months after graduating, my outlook on relationships and dating has completely altered. I think if a man paid me a compliment I wouldn’t know what to do!

If I were to meet a guy at what point am I meant to let me guard done and explain that I have stage 4 cancer? I’m guessing not at the start, it doesn’t exactly feel like the right kind of ice breaker to me. I am pretty sure they would run a mile! In many ways I am scared of being rejected but perhaps I’ve just not met the right man yet?

I have resigned myself to the fact that I will never be loved or fall in love with someone. I just don’t think I could do it, how can I act like I can offer someone a future when I feel I don’t have one? I will have regular treatment for the rest of my life and frankly I don’t think I could ever ask another person to take that on.

What Lies Beneath

More and more often I’ve been finding that people don’t seem to realise or appreciate how unwell I am. I’m lucky that I currently look well on the outside and don’t have any visible signs of a disability, therefore people often dismiss it, or wrongly assume that there will be an endpoint to my treatment.

Very few people see me at my worst; hooked up to iv drugs in the chemotherapy suite, or lying in bed all day with no energy to move or get dressed. It’s not exactly a case of what you see is what you get, there is so much more going on. I guess it’s hard for outsiders to comprehend what lies beneath the surface. It doesn’t help that I constantly play things down for my own sanity, I act the part of someone who is 100% healthy because it makes me feel better. My A Level Drama classes have finally come in handy.

I’ve recently learnt that the blue Transport for London ‘Please Offer Me A Seat’ badges are to be rolled out on a permanent basis. I took part in the initial trial of the badges with TFL towards the end of last year.  I found it to be helpful, however I think the general public need to be made more aware of the scheme in order to make it a success. Before the badge was introduced one of my friends actually wrote to TFL about this, so it’s good to know the public are being listened to. I hope this will make a real difference to people with invisible health conditions, myself included. My original blog post about the trial can be found here.

I have various signs of illness, however once I cover my hair with a wig and cover up my portacath and scars, I look like any ordinary 20-something. I guess in some ways it’s the ultimate disguise.  For the most part, this is a good thing; I can pretty much go about my daily life without it being obvious I have cancer. Having ways of disguising my condition does wonders for my confidence. I know I can’t win and I want people to understand my situation, but I also don’t want to be treated any differently. I don’t want people know I’m unwell, but I also want a greater awareness and understanding too. I’m just going around in circles really!

Since making my blog public I have found it liberating and also very helpful, it allows me to speak freely and honestly about living with Stage 4 cancer. Some of my friends have commented that it has helped to give them a better understanding of what I am going through on a daily basis, but most of all it means I am not repeating myself too much!

With immunotherapy treatment there aren’t too many side effects, certainly less than I’ve had with other treatments (yay for eyebrows and hair beginning to grow back). Pembrolizumab doesn’t work in the same way as traditional chemotherapy.

When I was first diagnosed with Stage 4 cancer I was told the average life expectancy was 18 months. Six years on I’m still here and I’m sure that sometimes people must think I made it seem worse than it was and that I was being dramatic. But due to advances in treatment and timing being on my side, I seem to be one step ahead of cancer for now.

People cannot see how unwell I am, however we cannot see the air that we breathe, but it doesn’t mean it’s not there. Yes, I’m still really really unwell, if not more now than I have been over the last few years. No, treatment will never finish, and no I will never be cancer free. That’s just the way life is.

But for now, between my ultimate disguise, my TFL badge and my blog posts, I can try to achieve a sort of strange balance of being treated normally but with consideration for my condition, whilst also raising awareness of Melanoma.

Not Just In My Head

I am currently waiting for a referral to be seen by the Neurology team in Leicester. After I had my brain tumour removed in November 2010 a small lump formed on my head after my craniotomy. Over the years the small pea size lump has given me a fair bit of pain, to the point where I haven’t been able to lean on one side of my head for fear of aggravating it. Sometimes it would weep fluid and become enlarged, which I put down to putting too much pressure on it when I slept.

I expressed my concerns to my Oncologist about a year after my operation and was then sent for an ultrasound on the area. I was mortified when the Sonographer suggested I lift up my t-shirt in order to begin the ultrasound. I guess he assumed I was pregnant, so told him that no, I wasn’t and I was there because of a small but very painful lump on my head post tumour removal. Luckily, he was apologetic and nothing sinister showed up on the scan. I let it go and decided I just had to deal with it and accept it was just an irritating reminder of an awful time but a small price to pay for life saving surgery.

Over the years I’ve mentioned the lump numerous times to friends and family, not quite sure why it still caused me pain so long after my operation. It turns out that I had a reason to moan after all!

I noticed recently that the lump on my head has appeared to have disspeared. At first I thought this was great news, however realised there was a scab forming in its place. I tried to pick it off but it didn’t work, and when I asked my mum to take a look she commented it liked like metal coming out of my head, perhaps a staple of some sort protruding from the area where the lump had been.

I contacted my Oncology team, baffled as to how and why this could happen. Perhaps the lump was some sort of infection covering the metal the whole time?  Who knows! I’m hoping it can be removed as I keep catching it when I wash my hair, and getting rid of it would stop the sensitivity in the area. Better out than in as they say! I’ve got enough scars and war wounds as reminders of the past 11 years, I don’t need another one to add to my collection. It just goes to show that both the physical and mental scars of this part of my life will always be with me in some form. 

It’s sounds strange but it’s good to know it’s not just in my head. I always suspected something wasn’t right, I know my body and often joke with friends that I’m always right about these kind of things. I knew before I had my most recent bowel operation that there was no way I could feel so bad without something being very wrong.

I am glad I finally know the cause of my pain, and don’t have to keep dismissing it as ‘just one of those things’. Hopefully the Neurology team will have some answers for me when I see them. Nothing is ever simple when I am involved.

The Travel Bug 

Over the past 12 months I have been abroad numerous times,  and have certainly been bitten by the travel bug. My 2016 trips have included a holiday to the USA to visit Austin, San Francisco and Minneapolis last January, and various weekends away to European cities, including Lisbon, Gothenburg, Berlin and Venice. I have been trying to visit as many cities as possible whilst I feel able, and I’ve enjoyed some wonderful adventures with amazing friends.

Sadly, I didn’t go travelling during my ill planned gap year. In retrospect, I wish that I had, but I can’t change the decisions that I made, or didn’t make, at 18. I could not imagine the path which lay ahead of me then. I assumed that I would have many more opportunities to go away and see the World. Nowadays there are numerous obstacles which prevent me from going on trips which are more adventurous than the Eurostar to Bruges, but just being able to escape for the weekend is good enough for me. The World may no longer be my oyster, but hopefully Europe will be for a good while longer.

I am keen to make good memories whilst my health is not completely against me. It probably appears to others as though I do too much, which is often the case, but I am trying to squeeze as much as I can before I’m unable. I know some places are now no go zones, where I’d be likely to pick up a bug of some sort even if I was a 100% healthy person. I think Egypt is out of the question as well as a fair few others, but you never know what the future may hold. Being faced with my own mortality had certainly made me look at things in a very different way.

I have spent far too much time in bed recovering from operations, or just being generally too exhausted to move to last me a life time. I need rest but do not want to look back and wish that I had done so much more. There have been times over the years when I have been unable to get out of bed, or been in too much pain to to put on a t-shirt, or even brush my hair.  Of course, working part time has certainly had an impact on my travel wish list, but budget airlines like Ryanair and EasyJet make it possible, even if for just one night in Copenhagen with school friends. Who is going to turn down £16.99 flights each way?

If anyone knows of any good travel insurance companies who don’t run a mile when they hear the words ‘Cancer’ and ‘Stage 4’, then I would love to receive some tips or pointers. I cannot take out insurance without declaring anything as this would be void should I actually have an issue which needed addressing. I am now in a position I cannot risk anything, I could fall ill at any time, and I need reassurance and peace of mind that I’m covered for any eventuality.

From what I can gather from online research it seems to be impossible to get travel insurance for America, so I doubt if  I will be going there again anytime soon. I have travelled to a fair few states, so it is a shame that I feel that I am unable to return. It wouldn’t be a great place to be if my health took a bad turn. I just need to remember that I was lucky enough to be able to go in the first place.

Here’s to more adventures in 2017! I’ve planned trips to Lille, Warsaw and Rome so far, but new suggestions are always welcome. 

 

Festive Feelings

The other Big C has reared its head again, Christmas 2016 is upon us. Over the past six years I’ve had my fair share of ‘good’ and ‘bad’ christmases, a mixture of feeling rotten or recently being released from hospital. 2016 is my second consecutive ‘good’ Christmas. My attitude is one of acceptance, right now I plan to enjoy Christmas and everything that goes with it!

On Monday I had my ninth cycle of Pembrolizumab, and my last for the year. Nine doesn’t seem like very many, but at this point I feel like I’ve had 90. I’m now used to the hospital routine and the expectation that each time I got for treatment I’ll spend my whole day in the chemotherapy suite. Despite knowing this, it doesn’t seem to get any easier as time goes on. This is the last place I want to be over Christmas, and am really grateful to be an outpatient at this time of year.

Over the past few weeks I’ve had numerous conversations with friends about plans over the festive period. I am home in a Northampton with my family for a few days and plan on eating my body weight in food, watching too much television and sleeping lots. I’m lucky to have loving family and friends around me, and am looking forward to stepping out of work mode and in to total relaxation mode.

I’m grateful to be well enough this Christmas to properly enjoy it. I might be a little fatigued from treatment, but it’ll be a million times better than some previous years. I’m also able to drive the dream machine (my lovely new car) which was my early Christmas present.

At this time of year I often start to worry about the year ahead and the challenges cancer might throw at me. 2015 started off very well, heading off to America for a holiday to visit one of my oldest friends. By May however, the game had changed completely as I underwent my second major bowel surgery. I’ve learnt there is no point in trying to plan too far ahead and second guess what might happen. Cancer is so unpredictable. I know it’s a waste of my energy to worry about things that haven’t even happened yet. In some ways ignorance is bliss. I wouldn’t say no to rewinding six years though.

In an ideal world I’d love nothing more than to be cancer free for Christmas, but sadly this isn’t a ideal world, and I know that this one wish won’t come true. I know the fight will never end, I am just hoping I’ll move onwards and upwards in 2017, and that the wonder drug Pembrolizumab will continue to keep my cancer stable.

I have a holiday booked to Rome in March and am hoping to go away around my 30th birthday in May, but don’t want or book anything too early for fear of tempting fate. I have to look to the future, even though sometimes I can’t see through the fog. I’m not willing to accept that this could be my last Christmas.

To all those who have read my blog so far, your support is incredible & It means so much, particularly the messages from those who I’ve never met. Merry Christmas!

Why I Make It Work

I recently took part in an online Facebook Live Q&A on behalf of Trekstock with Barbara Wilson, the founder of Working With Cancer. Work has always been a very important to me since my initial diagnosis, and over the past six years it has offered me a sense of purpose and an opportunity to focus on something outside of the relentless cycle of hospital appointments.

Since graduating from University, I have moved jobs a couple of times and was, until recently, in full time employment. I started working part time in July 2016 when I began receiving Pembrolizumab, which requires hospital visits every three weeks, rather than my previous cycle of once a month. Although it was devastating to reduce my hours as I felt as though I was letting go of control of my situation, I knew that it would be for my own benefit. I am pretty sure that nobody on their death bed has ever said that they wish they had worked harder during their lifetime. The work / life balance is much needed in order for me to cope with the treatment cycle and also to do things for myself. Asking the questions on behalf of the Trekstock Network reminded me of just how important this is for me.

I am certain that without the focus of work, I would not have had the determination to bounce back so quickly from operations and treatment. This has made the prospect of work even more meaningful than before. Over the years I have had various stints of time off work, the longest being when I was initially diagnosed with stage 4 melanoma in 2010. I left my first graduate job for a period of six months to recover from having both brain and lung tumours removed. I needed to be at home with family whilst I got better, but I yearned for a sense of normality, and looked forward to returning to a familiar routine, and having my independence reinstated. I had only been employed for a very short time before I had to take this time off, so I felt very short changed. As mentioned in my first post 11 Years, It was not the post graduate success story that I had set out for myself. Despite not having known the team for very long, returning to work made me feel as though I had never left, and they  became some of my closest friends. I found the transition back a huge challenge on both a physical and mental level.  Despite any distance that may have come between us over the years, we shared an experience which has sealed our bond of friendship forever.

Once again another six months of my life has been so easily swallowed up by hospital visits and cancer treatment. This is it. This is my life and my future. Most people get bored of their work routine, but for me it makes me happy to have a reason to get out of bed three mornings a week; a reason completely unrelated to my illness. I want to live as normal a life as possible.  To be someone who goes to work just like the majority of the population my age is key. I like living in London and enjoy my routine, sometimes it can be a little boring, but it beats living at home with one of my parents and not working. I feel that if I had decided to stay at home long term after my operations six years ago, my attitude and outlook would be very different. Work is a huge factor in this. My job might not be rocket science compared to others, but it certainly keeps me sane. Why should my life be any different? It helps me to feel needed and as though I make some sort of difference. I know that when the time comes for me to give up work completely I will know that I am on a downhill slope.

Whilst recovering from  my second bowel operation in May 2016, time seemed to go really slowly, and yet looking back, these last six months as a whole has seemed to pass me by with no clear definining moments other than those which revolve around illness. It sounds negative and depressing when written down, but If anything It has made me realise what really matters and what I most value. Most of the time I don’t feel depressed about it, just determined to put it all behind me as quickly as possible. I know that I can never fully move on, as I will never be cured of cancer, but I would like to try and finish one chapter and start another which I am hoping will not be as bad as the previous one.

Of course, starting a new chapter is dependent on what happens when I have my next PET CT scan which will be towards the end of January. I do know that I will keep working for as long as I am able, I am certain about that. I make it work because having a job is an amazing outlet for me, and makes me feel relatively normal.

The Importance Of Headspace 

I’ve been finding it very hard to relax over the last few weeks, I seem to be getting more anxious about my treatment as time goes on. Perhaps it’s because the festive season is fast approaching and In previous years I’ve be very unwell around Christmas time. I think it has a lot to do with not knowing how long the treatment will work for, yet again I feel as though I’m living my life in three month cycles, uncertain as to what might lie ahead of me in 2017. I’m also due another PET CT scan at the end of January, which I know will come around quickly.

I worry a lot about the future and the ‘What If’ scenarios, despite knowing that my circumstances are completely out of my control. I wake up from sleeping on a nightly basis, I do my best to focus on work and social activities during the day, so it all seems to come to a head late at night. I worry about bad things happening to my family and friends, which is also irrational, but unsurprising considering the bad luck I’ve had over the past few years.

A few months ago, when I began recieving Pembrolizumab I wrote my will. I’m the sort of person who likes to be in total control so felt like I neeed to write a few things down which would make the whole process easier. I used the discounted will writing service through Macmillan which was really useful. I have very little in terms of assests, but it gave me peace of mind knowing I’d done my bit. At the moment I haven’t given any instructions about my funeral because I don’t want to think about it yet, I’m also not sure what I’d want for my own farewell, is anyone ever sure?  I keep telling myself that despite being only 29 years old it’s a sensible move and realistically everyone should make one. I think since then my situation has really hit home.

I’ve been trying to find ways to relaxing and I’ve been using the Headspace app over the past couple of weeks. I received a subscription when I signed up with Trekstock back in September. There are so many options on the app, they’ve recently added a new 30 session pack for cancer which I’m going to try out, as well as reading before I go to sleep. Usually, I end up spending the last 30 minutes before I go to bed looking at my phone and shopping for things I don’t need online. It’s really important that I make sure I get some headspace and down time so I don’t drive myself crazy overthinking everything and worry about every little ache and pain, so I need to make some adjustments to my routine.

I know I’m strong, I have to be in this game, but daily life is also totally exhausting, its relentless and can be really hard work. I’m very lucky that I’m responding to Pembrolizumab, but it’s more the fear of not knowing what the future holds. Currently there isn’t another treatment I can have on the NHS, so I’m fearful of what happens if the drugs stop working. I don’t know in that’ll be tomorrow or in 5 years. With everything feeling uncertain I’m putting on a brave face 24/7 and it sometimes becomes too much to deal with. Hoping some new relaxation techniques will make me feel better.

Hair Envy

Lately I’ve been experiencing a lot of hair envy. I’m not often one to be influenced by social media or celebrities in magazines, but right now want hair like the women in every shampoo advert on television. I know that they are unrelasitic, but I’ve never wanted long volumous hair as much as I do currently.

I started to loose my hair around November 2015 when I first starting taking Vemurafenib, and since July 2015 I’ve worn a wig on an almost daily basis.

The most upsetting thing about loosing my hair was that I wasn’t mentally prepared for it to happen and I feel as though I will be emotionally scarred by the experience forever more. I was told at the time of starting chemotherapy that hair loss from my particular treatment wasn’t so common, so I guess it didn’t sink in. According to the Cancer Research website hair loss occurs in just under four out of ten people (40%). taking oral drug Vemurafenib. Of course, knowing my pattern of bad luck over the years I should have known I would be one of those unlucky few.

Losing my eyebrows and my hair felt like I was loosing control of my situation, I went from looking healthy to very unwell in just a few short weeks. Suddenly I lost my confidence and my femininity. I could hide the scars from previous operations, and even managed to get eyebrow tattoos, but I couldn’t cover up my hair loss so easily. It felt like as much as I tried to ignore it, the seriousness of my situation was hitting home. As I began to look increasingly unwell I found it very stressful trying to  act as thought it wasn’t an issue. I’ve never been good at doing my own hair, I can’t even do a plait successfully,  but this was a whole other ball game altogether.

At the start, my hair started to thin and fall out, particularly from the temple area. After a couple of moths of taking Vemurafenib it then began taking on an afro texture. I tried straightening the roots, but this was only a short lived fix. I even thought about trying to crimp it, but I’m pretty sure nobody has used a hair crimper since 1998.

After a few tearful weeks of dramatic hair changes I went with my mum to the hairdressers to have my hair cut short, I thought it  was wise to try and make the best of a bad situation and be in control as much as possible. The first time I went I burst into tears and the hairdressers decided it probabaly wasn’t the right time for me, so we went back a second time for the chop. Eventually my friends shaved it even shorter. Although I didn’t like the way it looked, it was as thought a weight had been lifted off my shoulders, I no longer had to pull my hair out of the plug hole when I had a shower, or wear a thick headband to hide the afro roots.

I had a few important engagements coming up in summer 2015, including being a bridesmaid for one of my best friends. After discussions with my Macmillan nurse I decided that a wig would be the way to go. I picked two; a long brunette one which I now wear regularly, and a short blonde one. I’ve never got into wearing the blonde wig, it seemed like a good idea and the time, but I decided to stick with wearing one as I didn’t want it to be obvious to people it wasn’t my own hair. There might be a point in the future where I change treatments and I could loose my hair again, so I’m saving the blonde one just in case. For a rainy day so to speak. I guess I could use it for a future fancy dress party but I really dislike fancy dress, my ideas always look better in my head than in reality.

I’m delighted to say that after having worn my brunette wig for almost 18 months my hair is growing back thick and fast due to a switch in treatment. Hair lost is not a side effect of IV drug Pembrozilumab, which I have been taking since July 2016. I’m now due my eighth cycle at my next hospital visit and the texture of my hair has changed completely and I have a short thick pixie hair style forming, its like 2010 all over again!

Although my short hair now looks much better than before I’m still self-conscious about it, but the longer it gets the more confident I’m growing. I was so upset about having to get a wig initially, however now I don’t want to be without it, which is ironic.  I’m happy to go without my wig outside of work, and am hoping to debut my updated look in the new year, but I’m so desperate to have my long curly hair back that I am hesitant to stop wearing my wig until I have long L’Oréal style locks.

My initial idea was to debut my new do on my 30th birthday in May 2017, but I am not sure I can wait that long. Wigs are also very hot, and with new hair growning I feel like I am constantly wearing a hat, so I will see how my hair keeps growing before making any decisions. It would mean so much to me to be able to tie it back, I get tearful just thinking about it.

I need to have a passport photo taken soon so I think I will go without my wig as I don’t want to be looking back at a photo of my wearing it for the next ten years. Hopefully I’ll be looking back and thinking about how far I’ve come.

Hopefully my hair will be envy of others very soon.