Tired Of Being Tired

I have now been living with cancer for 12 years, and today marks my 7 year stage 4 diagnosis. At the time, being alive and well at the age of 30 seemed impossible. There are so many conflicting emotions around particular dates such as this one, I am sad I feel I have missed out on so much, but am hoping there is much more to look forward to in the not to distant future. If I can make 7 years as a stage 4 patient who is to say a couldn’t make another 7! I literally owe my life to those developing new treatments and the healthcare professionals that have chosen cancer as their specialist subject.

The issue that has been haunting me most of late is that for me treatment doesn’t have an end point, and I struggle with this often. I’m tired of it. This is not a temporary situation which I can learn to power through, every aspect of my life until my dying day is governed by this illness. Having immunotherapy every three weeks has become the norm. I often grieve for the life I could have had without cancer, but It hasn’t broken me yet. I guess I have probably learnt a lot about myself in this time. Sometimes (not always) I feel I am now a stronger person for what being ill has taught me.

Coming to terms with the physical changes cancer has had on my body has been an extremely challenging task, not to mention the impact on my mental health. Hospital visits make me particularly emotional and sometimes I burst into tears so quickly, and then my mindset will be negative for days on end. It’s small things such as having to cover up my portacath, or not wear something too revealing as I don’t want to exposes too much of my sensitive skin to the elements. Lucky, winter is slowly setting in so I’ll fit right in.

I live life in a different way now, the pace is slower than I would like, but I cannot change it. Sometimes I get on ok, other times I want to scream at anyone who claims to be tired. TIRED? You don’t know the meaning of the word. Exhaustion comes in waves, and when it does hit seems to effect me in an instant. And I am one of the lucky ones. It is as if somebody clicks their fingers and my energy levels plummet straight away. As soon as the drugs are pumped into my blood stream I become a total zombie. My legs feel like I’ve been hiking up mountains for days on end, I’m going to end up needing one of those fold out camping stools for when I just can’t walk any further.

My thoughts don’t seem to make sense anymore, like a ‘glazed over’ feeling of not quite being in the room. I had no idea what exhaustion was really like until I had chemotherapy and immunotherapy; even the thought of being active exhausts me. I just want to be able to click my fingers and be in bed with a large pizza. That’s one super power I would love to have.

There are so many ups and downs during each cycle, as soon as you get over one intense period of treatment its time to begin the next cycle all over again. Nothing ever seems straight forward, after some appointments I’ll feel sick, others will give me a bad stomach or a rash. All very bearable of course, but aside from the fatigue there doesn’t seem to be standard reaction each time I have treatment. This is typical of me, as I’ve been told many times I am ‘not the norm’.

Over the past few days I’ve know I’m  in a bad way as I’ve been caught at the barriers at London Underground stations. So embarrassing, but funny when you think about it. I tap my Oyster card and the barriers open, yet somehow it takes my brain a while to figure out I should be walking through. My mind and body are slower to react, and I end up being one of those people who get their bags caught because they weren’t paying enough attention, much to the amusement of others.

Suffering from this kind of fatigue and trying to resemble normality is exhausting. I’m tired of being tired. It’s taken me ages to finish writing this blog post as I just haven’t been able to find the energy. I am not even sure I remember what it’s like to feel awake and energetic.

I’m powering through this week, but by Monday I should feel vaguely normal again, regular levels of tiredness as opposed to completely wiped out. They often say normal is boring, but I’d love to feel normal and part of the In crowd again.

I’m a morning person so I am off out for a jog / walk – it’s the last thing I want to do, but I’m hoping the fresh air will do me some good and somehow help to replenish my energy levels. That’s if my legs can do what my brain wants them to!

The Fear Of Missing Out 

The past few nights I have struggled to sleep and have noticed there is a lot of tension in my jaw and I’m constantly clenching my teeth. On the whole I’ve had a few bad days but have tried to put my struggles to the back of my mind, but all in all I’ve been feeling a mix of emotions over the past few days. I think feeling fatigued and the lack of sleep can often make me very sensitive, almost bursting into tears and the drop of the hat about the injustice of my situation.

I have been part of lots of celebrations this summer, as well as exciting trips including going to the Edinburgh Fringe, but it doesn’t automatically wipe out all the negative feelings I battle with daily. I have felt very down and emotional at times. It has struck me how different my life is to that of my peers, over time this has become more and more apparent, and leaves me feeling angry and upset. I’ve mentioned in previous posts but I think my friends are more likely to attend my funeral than my wedding, and that is hard to accept. I’m envious of everyone who had a future ahead of them, or is about to embark on their next big adventure (which feels like everyone at the moment). I am genuinely happy for everyone who is travelling the world, getting married or having children, but it doesn’t mean I don’t feel sad for myself that I’m not doing those things, and it’s actually really really hard.

It’s not necessarily missing out now, but the fear about what the future holds, rather than the excitement I should be feeling. Everything is so restricted when you’re living on borrowed time.

I am able to compartmentalise my life, but only to a certain point, cancer and treatment is in one section, with all the negative emotions and thoughts. The rest of my life in others, but it doesn’t mean my sadness and grief for the life I’ve lost disappears. Lack of sleep certainly makes this worst, which I’ve felt over the past week.

In recent conversations I’ve noticed a few times people assume I work part time because I have children; so it’s often hard to continue the conversation, how do you explain you have a terminal illness?  Sometimes, when people ask what other creative endeavours I indulge in during my spare time I brush it off and say ‘oh not much’ because it’s too hard to tell the truth. The automatic thought is that I have a family, or I’m someone who works part time to moonlight doing something else I’m really passionate about, like volunteering or teaching yoga. The only thing I’m passionate about right now is staying alive!

A few weeks ago I was travelling during rush hour on the London Underground  wearing my Please Offer Me A Seat badge, its was really bush and a lady across from me assumed I was pregnant and tried to start a conversation with me that then became very awkward. I should have had ‘leave me alone’ written on my forehead. I told her I had a lot of health problems, but didn’t divulge too much. It made for a pretty awkward journey for the next few stops. Even if I were in a relationship and I wanted children I couldn’t anyway because of my treatment. So even if I’m lucky enough to meet someone who wants to be with a dying girl It’s never going to happen (thanks to that lady for the reminder that life has dealt me yet another blow). I know she had good intentions, but I thought it was very insentive, she has no idea about others struggles – it could be a really sensitive subject for anyone! I guess at 30 I am missing the boat on these options.

I’ve got the fear of missing out when it comes to future plans, which I previously touched on in my post My Greatest Fears earlier in the year. With everyone else moving forward I don’t want to be left behind. Life is unfair, and I spend many anxious hours awake each night trying to make sense of it all. Mentally, it’s overwhelming and very taxing. I used to get the fear of missing out over small things, like birthday parties, but now I feel the fears are much bigger and more justified. I know I don’t want these future options right now, but it would be nice to have the choice.

#FOMO

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 the lack of awareness for disabled people on public transport, 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 head with a wig and cover up my portacath and scars, I look just the same I anyone else. Perhaps 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 in the street to see 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. Others 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 feeling so overwhelmed by it all!

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, however 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.

Please Offer Me A Seat

I’m really pleased to learn that Transport For London (TFL) have introduced a new badge for disabled passengers. A new trial will offer disabled passengers and those with hidden conditions, illnesses and injuries a blue badge to alert other passengers of their need for a seat on public transport.

I’ve had many discussions on this topic over the years with friends, it feels awkward to have to ask, a and i’d rather wear a badge similar to the ‘baby on board’ badges for pregnant women than have to try to explain myself to a total stranger on a overcrowded tube carriage.

I have been accepted onto the initial trial and can start wearing my badge. I’ll then have to report back about my experiences. I hope that this will make rush hour travel much easier and TFL will roll this out on a permanent basis. Sometimes feel judged by others if i am in a priority seat and don’t offer up my seat to another person who looks like they need it more than I do. Short of saying ‘I have cancer mate’ this is a good alternative.

I’ve recently found out the the badge is being rolled out next year. More information about can be found here.