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.

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 British 10k

I’ve decided to take on another race, the The British 10k in preparation for my Northampton Half Marathon in September. I know, I know, here I go again…

I recently took part in the Lake District 5 Peak Challenge for Trekstock. I know I’ve since moaned a lot, but It was the most mentally and physically tough challenge I’ve set myself to date, and I’m still a little injured because of it. Despite everything I wouldn’t change a thing.

Completing the 10k will determine if I’m on track for the Half Marathon for The Lewis Foundation in Northampton in September, so I am testing the waters so to speak. I’ve ran a half marathon before however I was much fitter then and the treatment I was having meant I could sustain a good training routine. This time around I haven’t done any running and have hardly set foot in a gym since late last year. My body moves slower than it used to and the frequency of treatment means I suffer debilitating fatigue for days on end.

Despite everything I feel like I have to do something, even raising a small amount could help make a big difference. I know the weather is set to be much nicer than when I did the London Winter Run 18 months ago for Cancer Research UK with family and friends, so that is a bonus.

Over the past few months I’ve been following the story of fellow stage 4 melanoma patient Emily Hayward via Instagram and You Tube and learnt today that she has sadly passed away. I know I am not alone when I say her story touched so many lives, both with or without cancer. I found her vlog really compelling as there are so many parallels with our journeys. She has inspired so many people with her strength and positivity, not just those with Melanoma but others undergoing immunotherapy and chemotherapy too. She maximised the good days, and chatted about making her days matter, and making her life count even though the odds were stacked against her. Emily accepted her diagnosis and lived life to the full every single day. There have been other great Melanoma blogs such as Dear Melanoma and Wrestling Melanoma I’ve followed over the years but sadly those people have since passed away too. Who is to say I won’t be next? No one.

News like this hits home hard! It’s a scary reality and I’m petrified about what may come, in an instant one can realise that life is so fragile, and so bloody unfair. The cancer club is a horrible club to be part of, but it is full of very incredible people.

I need to feel like I’m doing my bit; as I’ve said before it gives me a sense of purpose and focus. I want to make sure my life counts, and make each day really matter, I guess perhaps we only have one life after all?

The NHS is an incredible resource which we are very very lucky to have in the UK, but charities like Trekstock offer support that I haven’t always found elsewhere and feel it’s only right to try to make a difference in the hope it’ll help others like me moving forward, either experiencing a life with cancer, or a life after cancer.

If anyone is free early morning on Sunday 15th July and in central London, do feel free to come and cheer me along during The British 10k. I’m not sure I’ll be running, as I still need rest and don’t have time to train, but even if I’m walking I don’t mind, just as long as I cross the finish line. If anyone does wish to sponsor I’m looking to raise £200 from this event, and will also be raising money in August ahead of the Northampton Half Marathon. A link to my page for the 10k is here.

I’ll never understand why life deals some people such a bad hand; I feel overcome with emotion just thinking about it, and at the moment I’m one of the lucky ones which seems bizarre. Life is short, and I want to live mine to the fullest for as long a possible. I don’t want to waste a moment of this precious life. I just wish I had the answer on how to fix things.

Still hoping for a miracle.

I Should Have Been Dead By Now

It’s almost my 31st birthday. This year, like every year I’m beyond grateful to have had another 365 days on this Earth. Looking back over the previous year I realise how much I have achieved. I might have travelled less than previous years, struggled a lot with my mental health, and seen friends and family less frequently that I would have liked, but I’m still alive. Quite frankly I should have been dead by now. In fact, on paper it should have died years ago.

I was told upon diagnosis in 2010 that people with my type of cancer at such a late stage lived for an average of 18 months. There have been numerous points over the past few years when I truly thought that I wasn’t going to make it for much longer. Having been diagnosed with stage 4 melanoma in two sites (brain and lung) at 23 it was a shock I made it to my 25th birthday, let alone my 30th last year.

Any money I have managed to save during working life has gone towards living a good life when I’ve worked less, paying for been able to live independently when I’ve been signed off sick from work for weeks on end, or going on trips and holidays to make the most of life when I’ve been feeling well enough. Saving towards a house or something more substantial feels impractical because I’m not sure I’ll have a future to be around and enjoy it. Now I’m 31, but I’m not sure how much ‘good’ time I have left.

Two years ago I was in hospital, having had surgery to remove cancer from my bowel for the second time. I had hardly any hair of my own, and what I did have was unrecognisable from my usual self. Four years I was also spent my birthday in hospital, having initial been admitted for suspect appendicitis at St George’s Hospital in London. It turned out to be my first bowel tumour and marked the start of me receiving systemic cancer treatment in hospital every few weeks.

I do feel as though I put pressure of myself to do things whilst I am well enough and feel able, therefore making the most of the time I’ve got left until I start to deteriorate. In reality I want to make the most of things, however lack of time and energy are huge factors. Naturally I want to make most of what I’ve got now, but I also need to stop, look around and appreciate what I have. It might not last must longer, so I need to pause and take stock. Some days are better and others are much worse, and accepting that has been one of the hardest parts of living with cancer.

When I was in my early 20s I thought I wouldn’t see my younger siblings grow up. Now they are grown up and are taller than I am! In a way time flies, but the long road has been full of twists, turns and more than my fair share of major challenges along the way. I’m often trying to charge forward in life and catch up with all my friends along the way, but I need to accept this is unlikely. Just to be alive and well feels like a miracle sometimes.

I should have been dead by now, but I’m still alive and considering my dire prognosis it’s a huge win for me to be doing so well.

The Rough And The Smooth

I used to find it so clichè when people described having cancer as being on a rollercoaster, but at the moment, it feels like one of the best ways to easily articulate daily life living with stage 4 melanoma.

In my previous post I mentioned that amazing news that my last PET CT scan results were stable. Despite this, I have felt very up and down over the past three weeks. Sometimes I find living with the side effects of cancer treatment can be harder that having the treatment itself.

Sadly the results don’t mean all my side effects from taking Pembrolizumab disappear over night, it’s probably quite the opposite as somehow I feel more aware of my body than ever before. Living with cancer has so many ups and downs, it’s mentally challenging and know from experience that the good news can change to bad very quickly.

Last week I dreamt I had five brain tumours, not one, but five! Negative thoughts like this will always haunt me, and dark clouds will follow me around wherever I go. I worry so much, particularly about getting a brain tumour. I had one removed when I was initially diagnosed with stage 4 cancer in 2010 so for me this isn’t an irrational thought.

Over the past few weeks I have been attending regular CBT sessions in order to help me manage my anxiety surrounding my diagnosis and the depression that comes with it. It is hard to accept that having been labelled as terminally ill it essentially means I am dying. It might not be today, or tomorrow, or in a month or perhaps even a year, but one day cancer will get the better of me. For all those people who suggest I could get hit by bus tomorrow and die instantly so I shouldn’t worry; trust me it is not that same thing. At the moment I’m taking each day as it comes, taking the rough with the smooth so to speak. When I’m in a negative spiral it can often take a little longer to ride out, even though I try to be a positive as possible.

According to the NHS website, Cognitive behavioural therapy (CBT) is a type of talking therapy that can help you manage your problems by changing the way you think and behave.

It’s most commonly used to treat depression and anxiety, and is based on the idea that negative thoughts and feelings can trap a person in a vicious cycle. The therapy aims to help people deal with problems that feel overwhelming in a more positive way, by breaking them down into smaller parts. Essentially learning how to change negative patterns and become more positive, looking for practical ways to improve a persons state of mind.

Through my experience so far I think CBT has been beneficial, however as I write this I am mid hospital appointment, having just broken down in tears. A hospital is the last place I’d ever want to be, but I don’t have a choice about coming to have treatment. Sometimes it’s all too much, even if the appointments are running to time. It’s not one particular thing that makes me emotional, it’s the whole treatment process. A classic example of a day which had been pretty unstable; I feel like I’ve experienced so many emotions in one afternoon. Hopefully tomorrow will be a better day and the CBT will continue to help me move forward living with cancer.

This July marks two years on current wonder drug Pembrolizumab and 7.5 years of living with stage 4 melanoma. Any tips on helping manage emotions would be much appreciated.

Lake District Five Peaks Challenge

Last weekend I conquered the Lake District 5 Peaks for charity, including England’s highest mountain Scafell Pike in just one day. I did this in aid of Trekstock, a young adult cancer charity I’ve frequently mentioned in my blog.

I found out about Trekstock through social media, and over the last 18 months I’ve found them a great source of support. Through the charity I took part in their RENEW exercise programme and also became involved in the BBC documentary A Time To Live by Sue Bourne. I have also benefited from other events they’ve organised for those who have experienced cancer.

The challenge, organised through the company Charity Challenge was without a doubt one of the hardest things I’ve done in my life! It was the most difficult physical challenge I’ve set myself so far. I was on my feet walking for the best part of 12 and a half hours straight and I found the trek both physically and mentally tough. I felt so many emotions in one short space of time; I laughed and I cried! (A lot!), but I’m proud to say I did it! I was the last person in my challenge group of 44 people to finish on the day, and I’m sure I said I couldn’t do it about 1000 times. My hips and legs became so tired that I had to give up my backpack for the last four hours, and the Charity Challenge team kindly carried it for me. I kept joking that the leaders should apply for World’s Strongest Man as they carried my backpack (as well as their own), whilst navigating across the boulders and rough terrain of the landscape. The whole experience reminded me of the type of person I am; I’m a fairly nervous person, I get scared easily, and the weekend confirmed that I’m certainly not an outdoor enthusiast! It took me longer than average to learn to swim, ride a bike and drive a car, so I shouldn’t be surprised I found the trek tough going! I know I won’t be signing up to adventurer Bear Grylls next TV show in a hurry.

Despite my initial disappointment at finishing last, I have to remind myself it wasn’t a race, I also had chemotherapy last Monday, so I know I should be especially proud. Initially it felt bitter sweet; the challenge reminded me that I am not invincible, and that having stage 4 cancer means I will inevitably find it difficult to do things that a healthy person could do more easily. As first I felt really upset, as it was a reality check, but it hindsight I’m just glad to have finished.

I’m still very sore and in pain, and pretty sure I’m going to loose a toenail but it was worth it!  Without sounding like an awards acceptance speech; I am grateful to my two wonderful friends that completed the trek with me (they must be mad!), I’ve never been so happy to see two people before. Huge thanks to the Charity Challenge team who made sure I powered through, and of course to the lovely Trekstock team. I know the money raised will continue to make a huge difference to people like me. It was lovely to meet so many other people connected to the charity, who gave me encouragement, supported and cheered me on until the bitter end. I’ll certainly be visiting the Lake District again soon, it isn’t an area of the world I’d visited before, and the landscapes were stunning. It goes to show there is so much beauty in England so close to home, I still have The Travel Bug, but I’d love to explore the UK more.
 At the moment I’m not sure the Lake District 5 Peaks would be something I would do again in a huge rush, but knowing me I’ll probably end of signing up to something else in few weeks. Perhaps I should opt for a simple bake sale instead? Overall I feel a great sense of achievement. and I’ll be riding high on that wave for a while, even if I am still hobbling.

Its great feeling knowing the money raised can make a real difference, helping to improve the physical and psychological wellbeing of people in similar shoes to mine. In total I’ve raised over £1,100 for Trekstock so far, and if you’d still like to donate you can do so here.

I am also delighted to say that I had stable scan results at my oncology appointment last Monday, which is of course fantastic news. Now that I know, I hope I can relax more over the next few months and enjoy my summer adventures and birthday celebrations.

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!