Fighting Fatigue

Since Christmas, I’ve noticed I’m in need of more sleep, perhaps In part it’s the cold winter weather and dark mornings, however I feel I have been fighting fatigue more than ever recently. It’s not ideal given that I had a chemo break over the new year, and in theory I should be feeling more awake and energised than usual.

I long for the day when I wake up and actually feel revitalised and refreshed from catching my z’s, rather than feeling like however much I sleep I get it’s never going to be enough. At the weekend I slept for 11 and a half hours, only to wake up get washed and dressed and go back to sleep. I’d slept for nine and a half hours the previous night so I can’t blame it on a lack of sleep the night before.

Everyone always tells me to listen to my body, but right now I feel as though it’s constantly running on empty without a way to refuel? Sometimes I’m so shattered that I practically spend a whole day in bed, I worry that I’m wasting the day away, this precious time whilst I am ‘healthy’ but feel like I have no choice! It is so frustrating being chronically tired, I think it often adds to my depression and negative feelings.

I’ve learnt there is a lot of power in taking a nap, but it’s certainly not the fatigue beating cure I’m searching for. Perhaps it makes things worse? Recently I’ve been going to bed around 9pm and sleeping for as long as physically possible, by the time 4pm comes around at work I feel like a zombie, struggling to keep my eyes open, I am done for the day and in need of a sugar hit to keep me going. At the weekends naps and a must, and I wonder how on earth I manage Monday – Friday without them. I sometimes wish my office had a little room where I could go and lie down for an hour.

Often, even though I’m exhausted, I have nights where my worries keep me awake and it’s difficult to settle, which make the following day even worse. Tiredness affects me both mentally and physically, and it can be really isolating as I am always envious of others who seem to have boundless amounts of energy. I often end up postponing or cancelling plans because I simply don’t have the energy. Having spent the past four and half years on treatment I don’t think I know what being awake and refreshed feels like anymore. I thought I’d gotten used to feeling this way but perhaps not if that past few weeks are anything to go by.

I know that keeping active can really help reduce tiredness, but it can also make me more exhausted, so I feel like I can’t win. Hopefully it’ll pass as the days get longer and lighter. I’m bored of being physically, emotionally and mentally tired.

Goals For 2019

I am not really a fan of new year, and setting resolutions, let’s be real, Its probably not going to happen, so why am I pretending! Like many years, I just hope I’ll be well enough to see the next one in! I have problems which I know cannot be solved, and trying to force myself to be someone new just because it’s a new year isn’t going to make those problems disappear.

I came across the below quote on instagram the other day and thought it summed up perfectly exactly what I should be focussing on over the next year and beyond.

“So, what if, instead of thinking about solving your whole life, you just think about adding additional good things. One at a time. Just let your pile of good things grow.”

2018 has been a year with some huge highs but also some massive lows. I think the whole ‘coming of age’ thing has been a huge part of my insecurities and I have really struggled with my mental health. As each year begins, I start to worry about the year ahead, and the challenges life may throw at me, both with or without cancer. It’s hard enough being a single 30 something trying to get by in life without having a serious illness to contend with. I have a GP appointment next week, followed by pre treatment bloods and then I am back in for chemotherapy mid-January. Although a Christmas break is much needed, it doesn’t take much for the focus to shift back to the dreaded C word. I’ve come up with a short list of things I am going to try and do to make life seem a little less daunting each day, just taking some time for myself to focus on non-cancer related successes or key moments. Not a resolution which will no doubt be broken, but key things to try and help me live my life as well and happily as I can.

Make regular lists of things that make me feel happy…and do more of them

This could be something small like going out for brunch with a friend or family member, calling a friend I’ve not seem or spoken to in a while, or going out for a walk and getting some fresh air. If I make a list then I hope I’ll put more effort into doing them again because i know they bring me joy. I used to be a huge theatregoer, having graduated with a drama degree before my stage 4 diagnosis, but I could count on one hand the amount of times I’ve been to the theatre (non work related) in 2018, and feel so out of the loop with what is happening in theatre land, even though I practically work in the West End. I need to put more of a focus on doing things for myself, no matter how small they may seem. I love the theatre so I want to try and add this as one of my additional good things over the next year. Not doing this seemingly obvious things makes me feel like I’ve lost my way slightly and in turn lost a bit of my personality. Do shout if anyone has any good theatre recommendations, both London and beyond.

Spend time with supportive people

It’s important for everyone to be around good people, or in situations where there is a lot of support. We need radiators and not drains in our life, a good friend of mine uses this analogy often and it really hits the nail on the head. Radiators are those who give warmth, those who gave something back to others. They naturally have their own problems and situations where they need support, but generally, seeing them, or interacting with them is a hugely positive experience. For me, these are the ones who lift me up and listen, those who make me feel better about the injustice of the world. Drains are the opposite; those who drain energy and take more from the friendship than they give and don’t always listen to others.

Be grateful

No matter how hard it seems we all have something to be grateful for, even on the darkest of days. I went on amazing holidays in 2018, which I am hugely grateful for. My trips in 2019 will be much smaller scale, but it was completely worth it and the experience will stay with me. Apparently those who take time to notice and reflect upon the things they’re thankful for can experience more positive emotions, it’s a no brainier really. Focus on the good! Being grateful doesn’t need to be reserved for big occasions, but simple daily activities that bring joy. Part of this also includes thinking more carefully about my use of social media, and be sure to use it for good, rather than comparing my life and my successes and failures to people online and feeling bad about it. I must remember I survived the last year and I am grateful for that. My ultimate goal is to stay alive!

Here’s to 2019!

Scan Results And Festive Freedom

Yesterday I received results from my last PET CT and MRI scans and I’m relieved to say that the results were good and everything continues to be stable.

After getting over the Scanxiety, I was feeling somewhat confident that the results would be stable, however the worry is never too far from my mind. Hopefully this means I can relax a little over the Christmas and New Year period.

I am fortunate enough to be having a chemo break and am not due back to see the oncology team at my hospital in Leicester for another six week. In my 2 and a half years of receiving Pembrolizumab this is a rare occurrence, and one I am especially grateful for at this time of year, fingers crossed this will be a blissful time of freedom over the festive period.

I haven’t written a blog post since The Truth About Depression three weeks ago. Part of me has been living in purgatory waiting to get my scans over and done with, and the other part has felt like I’ve not really got anything more to say. I haven’t suddenly snapped out of my downward spiral, but I am taking more steps to try and help myself.

I have now had my 41st cycle of Pembrolizumab and the fatigue seems to be hitting me more than ever. Lucky I have been working from home and resting which always helps, but powering through never feels like an option when it comes to post treatment tiredness. This is something I didn’t appreciate before I started having Pembrolizumab. A while back I wrote a post called Tired of Being Tired, which summarised my feelings on being physically and mentally exhausted. After reading it back, I feel the same as I did back then, annoyingly getting used to it doesn’t make me feel any less exhausted.

Exhaustion comes in waves, and when it hits it seems to affect my energy levels straight away. There is something about being in a hospital waiting room which makes me feel so sleepy, even with all the alarms and buzzers going off every few minutes. Having the treatment itself makes me become a total zombie, and I often struggle for a few days afterwards, making small things such as walking up the stairs or packing a bag seem like a huge struggle. I don’t trust myself to drive after chemo as my judgement certainly isn’t what it should be. I long to feel free and full of energy again, so perhaps having a treatment break over Christmas is exactly what I need.

A couple of people have asked me if I planned to celebrate my stable scans results. A few years ago I used to mark them as more of an occasion, but I honestly don’t think about them as a moment to jump up and down for joy. Nowadays I am too scared of what the future holds and I’ve been feeling particularly vulnerable over the past couple of months.

Of course I am so grateful to be in this position, even if living with cancer does take its toll, but I prefer to try and reset my mindset to one that isn’t in complete panic mode. I want to try and look forward to the next few months rather than just celebrate one moment. Hopefully I will feel less like I’m holding a poisoned chalice and perhaps as though I am holding a glass half full instead.

Fingers crossed for more good news in 2019. Until then I need to go back to sleep, rest and try to fight off a cold I think is coming my way as I’m a bit under the weather.

The Waiting Game

I am now playing the waiting game, having had a PET CT scan last week to check for any disease progression. I am keeping everything crossed and hope more than anything that my scan indicates my cancer has remained stable over the past few months.

Due to a Christmas break and Easter holidays It’s been over five months since I had my last scan, so I’ve had an extra long break from the anxiety that usually comes every three months. It’s safe to say if something is wrong I’ll be kicking myself for not having had a PET CT scan sooner.

Luckily I’ve been fairly busy over the past few days, which acts as a good distraction from all things melanoma related, but it doesn’t make the thoughts and feelings go away all together. I’ve had a few nights where I’ve been laying awake panicking about dying, a very real concern, but a very unhealthy thought process.

Waiting for results is the worst past of cancer treatment, my mind races with so many different thoughts it’s hard to keep on the right track and keep a grip on reality. In the past week alone I had three different medical appointments on three separate days, which in itself is exhausting. Having stage 4 cancer is a full time job and it will always be more important than anything else going on in my life.

My last four blood tests have shown I’m suffering from anaemia, which is not at all unusual for me, but is a bit of red flag. I’m normally boarder line when it comes to my haemoglobin levels, so I’m now taking iron tablets prescribed by my GP religiously in the hope they will help me feel less exhausted. I’m off to the Lake District to do the 5 Peak Challenge for Trekstock next week so I need to be on top form. I just hope it doesn’t lead to a blood transfusion!

When I had my PET CT scan last week I had a problem with my portacath. Over the last 12 months It’s been completely reliable, taking away the anxiety and stress of having a cannula fitted or blood taken every few weeks. Despite the nurses best attempts my portacath refused to bleed back, even though it was flushing normally. In the end I had to have the radioactive tracer for the scan injected via a vein in my arm, which was not ideal, as I have the world’s most pathetic small and thin veins! Luckily it was fine in the end, however there was probably about 20 minutes of failed attempts when my anxiety levels were through the roof (I previously had a couple of extremely bad scan related experiences).

Hopefully my portacath was just having an off day and will flush ok when I go for my next chemo appointment, otherwise I may need medicine to help unblock it! It’s the least of my issues but certainly adds to the stress of the whole treatment process.

Keeping everything crossed for my results!

Finding My Focus

With 2018 now in full swing, some people choose to make resolutions moving forward. For those who are experiencing cancer, or have been affected by it in the past, these resolutions aren’t always about creating new hobbies, such as taking a photograph every day for a year, taking the stairs at work rather than the lift, or going to the gym more.

So far this year I have started cutting back on things in my diary, rather than doing more. Starting a new job with more hours is really challenging for anyone, so I’m trying to stay one step ahead at all times, and finally learning when to say no rather than being a yes man. If I think too much activity is going to jeopardise my health and make me more fatigued, particularly in the winter months, I’m going to say no. I already feel better for making this conscious choice, therefore the prospect of a 40 hour working week doesn’t seem as daunting any more.

I always like to keep people on side and agree to everything (I love brunch and eating out too much), but with a terminal illness it isn’t practical to say yes so often. I am trying to regain my focus and think about what is really important. Previously my attitude would have been that I am admitting defeat by saying no, but really it is learning to look at something from another angle. Despite always wanting to please people and be liked, I already feel much happier and brighter with more sleep and planning down time in my diary. I need my body and brain to function well so I can concentrate on learning my new role, making sure I am not feeling exhausted by lunchtime.

By taking a break for over filling my social calendar, I can really enjoy spending with the people I can about. It has now become more about quality time than quantity. A couple of friends came to stay with me London at the weekend, usually I feel the pressure of being a host and having to show people all the favourite tourist spots, but coffee and chilled out catch ups in pyjamas were just what was needed. I am sure that this will not always be so easy for me, but my health is my number one priority, and I think I’ve forgotten that at points over the past year. I’m starting to feel much better than I have done over the past few months just by making this choice and forming a new routine. Who knew that having breakfast before setting off for work rather than at my desk would make such a difference?!

There are only 24 hours in a day, of course it would be easier if we had an extra day a week, but time is limited. If I’m spending enough time sleeping, and around hour and half travelling to and from work, and another eight or so at my desk Monday to Friday, that doesn’t leave too much time for relaxation and leisure activities. Going for my treatment exhausts me for about a week, then after a break the cycle begins all over again. I’d ask that people don’t write me off just yet, I still want to be included, but I need time to adjust to a new regime, so If I’ve been less responsive this is most likely the reason why. I really appreciate texts, cards, home visits and coffee dates, and I promise I will see everyone, it just might take a little longer to find a time that works with my new routine.

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!

Top Tips For Good Sleep

Over the past few months I’ve struggled with my sleep cycle a lot, some nights hardly sleeping and others lasting the best part of ten or eleven hours. It often depends what I’ve been doing that week, if I’ve been at hospital or had some sort of work event, or ended up being awake late catching up on a TV programme I’ve been meaning to watch.

I’ve come up with a few tips which have helped me over the past few weeks and thought it might be worthwhile to share. Likewise, if people have any other tips I would really appreciate it.

Bath With Epsom Salts

When time allows I’ve been trying to have more down time before going to bed. I’ve read numerous online articles about the benefits of using Epsom Salts, having first discovered this when training for a half marathon in 2015. I still can’t believe I actually did that!

The theory is that when the salt is added to a warm bath, the body is then re-supplied with magnesium. It helps to produce mood lifting chemicals in the brain, also helps to reduce anxiety and promote calmness. Bathing helps to relax muscles and reduce joint pain when absorbed through the skin, which I guess is why runners often recommend it. I’ve also heard of people using magnesium oil sprays before going to bed.

Wear An Eye Mask

Wearing an eye mask, like the ones you get on a long haul flight has often helped  me sleep when I’ve been feeling stressed. Blocking out light and relaxing tired eyes makes it much easier to sleep. Strangely, I often sleep really well if I stay in a hotel, you’d think this would be the opposite, but I think it’s sometimes down to the use of clever black out blinds which keep the room nice and dark.

Use Sleep Spray

I stayed in a hotel in Stratford-upon-Avon at the start of the year and a This Works Travel Sleep Kit was left on my pillow. The kit I received contained two small bottles, a lavender spray and a scented roller ball. Ive only used this when feeling particulary anxious but do feel the kit has helped me, I also love the smell of lavender! There are a number of similar kits available which also include eye masks and sleep balms.

The roller ball is used on pulse points and then inhaled deeply just before going to bed. The idea is the blend helps to calm the mind, therefore encouraging a deeper nights sleep. The spray should be used on the pillow just before going to bed to help improve sleep quality.

Turn Off Technology

I am often very guilty of watching tv until right before I go to bed. I’m consciously trying to break this habit and create a proper routine. I know I sleep much better when I’ve had time to wind down for the day, I’ll either watch tv, or if I come in really late from work my bedtime routine goes out of the window altogether. Forgot the three step cleanser, toner and moisturiser, who cares when all you want to do it sleep?

I’m also often guilty of checking my phone for the time if I wake up in the night, again I know this is a big no no when it comes to needing a good eight or nine hours sleep. Ive since bought myself an alarm rather than setting the one on my phone. I think I will be less tempted to look at my phone this way. I remember using a small travel alarm clock whilst on a school trip, but thanks to the smart phone I haven’t owned one in years.

Avoid Afternoon Naps

It pains me to say this, as I do love a little afternoon nap when I’m not working, but trying to avoid these, no matter how tired I am has been a really positive step forward. For the last couple of weeks I’ve avoided day time sleeping, even if I means I go to bed at 8pm! I have found this beneficial as I then feel in need of rest, so more likely to go straight to sleep rather than think about my upcoming PET CT scan results.

Exercise Daily

It has been said that regular exercise can help to reduce insomnia and in turn experience deeper sleep cycles. This includes light exercise such as walking, which is great news for me as I’m often travel to and from the train station to go to work. I also try to go to morning yoga sessions or the gym before work, but the frequency of this depends entirely on how busy my week is. If I haven’t exercised in the morning there is a 95% chance that I will get too tired and opt out of going to the gym altogether. I am always a morning person when it comes to exercise, I want to get it out of the way! Having said that, I know when my body craves sleep, so exercise shouldn’t come at the expense of a good sleep pattern.

Happy snoozing!