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.

Living With Scanxiety

My next PET CT scan date is looming and my major fears about the future have reared their ugly head once again.

Scanxiety is a term used to describe the anxious feelings that arise in the time leading up to an imaging scan, during the scan and whilst waiting for the results to check for disease progression. I’ve read about the term a lot over the past few years as it’s frequently referred to within the cancer community.

Over the last eight years I’ve had countless scans; MRI scans, CT scans and PET CT to name a few. Each come with their own levels of stress and anxiety, especially since my hospitalisation and anaphylactic shock when I had a CT scan a few years ago! I spent the night before Christmas Eve in hospital as a result and it’s fair to say the day itself passed me by and I only woke to eat and went back to bed again as soon as I could. It wasn’t such a Merry Christmas after all. Now I am contrast free and go for PET CT scans every three months, which eliminates the use of contrast, instead using a radioactive tracer which I’ve so far had no issues with.

My anxiety levels have increased over the past few weeks, I’ll go from feeling fine to the brink of bursting into tears on the short walk from my house to the tube station on my way to work each day. I keep having nightmares about my diagnosis; being told Pembrolizumab isn’t working and there isn’t any more treatment that can help me, or loosing my hair again.

When you have cancer, all the focus is on physical health and trying to keep disease at bay. The constant cycle of treatments, particularly with invasive chemotherapy and Immunotherapy appointments over the past four years has meant its my full-time job. I worry often that my mental health suffers as a result, and it’s only in the past year or so I’ve really focussed on trying to get myself mentally stronger. Lately I’ve been feeling as though I am having a bit of a midlife crisis, and dealing with cancer daily is more than I bargained for, more on that in a future blog post!

Despite me being a ‘lifer’ in cancer terms it seems I would be used the routine but in reality it doesn’t make the multiple appointments any less worrying. The ridiculous thing is that regardless of me loosing sleep or not, the outcome will still be the same. What will be, will be after all! What I know is that it is something that consumes my mind from the moment I wake up until I go back to bed at in the evening, there is no rest.

I have been feeling sick and suffering from headaches, which I’m sure are a sign of the worry and stress, or maybe I just need to eat breakfast when I wake up. My experience means that my mind jumps from headache to deadly brain tumour in a instant. I know all the signs because I’ve been there before, so have had a couple of acupuncture sessions in the hope some tension will be relived.

The next few weeks are going to be testing. I’m wishing time away again so I know where I stand.

The Results Are In

I have now been sharing my story via my blog for almost two years, and luckily in that time have also remained stable on my latest Immunotherapy drug, having had my last major surgery in the summer of 2016.

This week is also very significant as it marks exactly 13 years since I was initially diagnosed with stage 1 malignant melanoma via a mole on my neck when I was only 18 years old. I have now been living as a stage 4 patient for almost 8 years. I was told back then I may not make 25 and now I’m 31, struggling sometimes but I keep picking myself up again. Cancer has been with me my whole adult life, which is something I don’t think I’ll ever be able to accept.

In some ways my stage 4 diagnosis seems like a lifetime ago, but in others not much had changed. Not long after I had started recovery from surgery to remove my brain tumour and lung tumour I moved to London ana went back to work. I’m still living with friends in the capital city and attempting to navigate the working world as best I can. Around three years ago I moved form South West to East London, so it almost feels like London is a new city, having discovered parts I would never have seen before.

I still get too caught up in the moments when I feel well and then book in too many activities, so last weekend I spent a lot of time relaxing and napping in preparation for the week ahead. I had a chest infection and needed antibiotics, which I think have since cleared everything up. I need to be on good form for the Northampton Half Marathon on Sunday to raise funds for The Lewis Foundation.

I had a PET CT Scan last week and travelled to Leicester to get the results yesterday. I am delighted to say my news was all very positive and takes the pressure off over the next few months.

However, no matter how many times I’ve heard positive news over the last two years there is always the fear my world will fall apart again at any moment. In some ways it feels like I’ve been given a golden ticket, but tomorrow I could find out it’s actually fake after all. I am of course relived, but the fear doesn’t disappear over night.

I’m now very used to the three weekly routine and cycle of my treatment, in way it has become staple part of my life up until this point. Travelling to and from the hospital gets me down, it’s mentally stressful and physically exhausting, but it’s nothing if it means I have a functioning life the rest of the time. I need to try and shift my attitude so that I am ‘living with’ cancer rather than all the negatively that plagues me about dying from it.

Here’s to LIVING!

Wishing I Was Anonymous

As I come to the end of my two week holiday I’m looking forward to getting back into a routine. As much as I love being away and exploring new places there comes a point where my fatigue kicks and I am ready to rest in my own space and sleep in my own bed.

One of the best things about being on holiday is being anonymous. I travelled alone for seven days after my friends wedding; a whole week where nobody I encountered knew anything about my personal life, to them I was just an ‘ordinary’ person travelling alone, but for me the trip meant more than that. I didn’t have to feel the need to explain myself wherever I went, which was a welcome break for me. I’ve spent the last year worrying that my illness would mean that somehow I wouldn’t make it on to the flight. When I first booked the trip I kept thinking that if I die in the next year, would my family be able to get the money back I’d paid so far?. Morbid but true!

This holiday helped my realise I need to try and stop letting cancer define me. Like it or not it happens to me every day. I can be who I want, sometimes it isn’t always possible, but there are occasions when I can be completely anonymous and free from the poison chalice that is my terminal diagnosis. Even if it’s for a few hours it feels so nice to feel I fit in to the crowd. Looking well is a huge bonus in this situation as there are no questions asked. I enjoyed being a typical tourist exploring a new city.

For the first few days of my solo trip cancer was very far from my mind, however a few days in I received an email confirming my next PET CT Scan at the end of the month, so I am back in purgatory for the next few weeks whilst I play the quarterly ‘will or won’t my cancer be stable’ waiting game. You’d think after almost 8 years since my stage 4 diagnosis and approximately 4 years of active treatment I’d be used to this, but I’m not!

During my trip I noticed some spots of vitiligo getting worse, which I think could be down to overall sun exposure whilst away. Although I wear sun cream constantly I spotted a new area appear on my neck which made me feel really low. This change in skin pigmentation is a side effect of my treatment. Most of my vitiligo is in my torso and legs so not easily spotted by others, but the new area, along with the huge scar on my neck from my original melanoma is much more obvious. I also had a couple of nose bleeds, but I think this is likely to be down to the huge head cold and sore throat I got whilst in Chiang Mai.

When I look in the mirror I see I scars or marks of cancer treatment at every angle, the mark on my neck is another to add to my collection. I have scars on every part of my body from different operations, some more obvious than others; I have a protruding portacath for my immunotherapy treatment, vitiligo, raised scars, tattooed eyebrows and a slightly lazy eye. I had the last eye as a child but it got progressively worse again a couple of years ago so I had it operated on for the third time. The surgeon told me he thought it was very divergent considering I’d already had surgery twice, and the shift could be down to optical nerve damage that may been cause by my brain tumour a few years before. Although this is not necessary why, I can’t help but feel my tumour had something to do with it, because nothing is ever simple in my world. My left eye still remains slightly lazy, another reminder of all the crap I’ve had to go through. I so wish these things didn’t have an impact and I didn’t care, but I really do.

I should look in the mirror and be proud of my body, I know this because it has been so strong and fought back at every opportunity, but there are days when its difficult. The last few days have been hard, with no one there to help distract my thoughts about plans for the day or if the breakfast in the hotel will be good.

I really try not to let cancer define me, not to let it win, and It’s certainly not going to destroy me. When I feel low and depressed its not necessarily one particular thing that I can put my finger on, but a combination of the whole living with cancer package that throws me into turmoil. It’ll be something seemingly small, such as spotting the vitiligo earlier which will push me over the edge and then makes me feel down again.

All the scars and marks remind me there is a extremely unwell person staring back at me. That person is asking for the magic cure to fix everything. I have to dig deep for the mental strength to and carry on, only wishing I had the answer my reflection is looking for.

Being positive and picking myself up each day isn’t always simple, I try to see the good in situations and hope one day I’ll have the answers. I want to feel happy but it isn’t always the case. It goes without saying I’ve had an amazing couple of holidays over the last few weeks, I had a chemotherapy break, so when I go next week it’ll be the first time in six weeks, which is a rarity. America and Asia have been so much fun, but my reality is still the same as it was a few weeks ago, and it’s always hard come back from a good place mentally knowing it’s going to be a bumpy ride.

Can I go back to being anonymous please?

Becoming An Adventurer

I am about half way through my holiday right now, so far I’ve visited Phuket and Chiang Mai in Thailand. I’ve created some wonderful memories, taking me well and truly out of my comfort zone, perhaps I am more of an adventurer than I thought!

The main reason for booking the holiday was to be a bridesmaid for my school friend in Phuket. In total there was a group of about 50 people who had travelled from England to watch the beautiful couple say ‘ I do’. It was so much fun spending time with friends and their families, as it wouldn’t happen ordinarily. Cancer has been very far from my mind, especially sipping coconut water from a real coconut at a beach bar overlooking the ocean! The venue and wedding itself were beautiful, it was an idillic setting, despite the delayed start due to a storm. I can’t wait to see all the photos.

Whilst in Phuket my friend and I took a day trip to Phi Phi, it was stunning however the weather was awful, making the boat journey very scary, however we made it there and back in one piece and lived to tell the tale. Whilst there we took a long boat out from the shore went snorkelling. Not one of my usual weekend activities and very much in my red zone of being scary and unsafe (not the fish, but the boat itself).

I’ve also eaten numerous times on my own, apart from day time cafe jaunts to write blog posts I would never have dreamt of going out to a restaurant for dinner alone whilst in London. ‘Table for one’ just doesn’t seem like the done thing, but when on holiday anything goes!

After my Phuket adventures I flew North and explored Chiang Mai for four days, I’ve found it to be a relaxed and friendly city, and I’ve been able to continue my down time. A few months ago I booked a trip to an Elephant Jungle Sanctuary which feels like a must when in Chiang Mai. As many people know I am not a really an animal person, so getting up close was an interesting experience. You can see form my Instagram photos that I’m pretending I’m not petrified!

Despite having a huge cold (mainly thanks to air conditioning) I’ve enjoyed the time alone; being able to wonder around and not worry about anyone else is a bonus. I’ve slowly been loosing my voice, I’m sure it’s down to a mixture of the cold and not speaking to people very often, I’m just glad it’s nothing more serious.

On paper this trip was one of the most scary things I’ve ever done, I thought spending so much time alone would be boring and was worried thoughts of cancer, dying abroad and my upcoming scan towards the end of the month would take over, not having anyone there to distract me. Two destinations down, and two to go! Perhaps I am becoming more adventurous? So far it’s been a success, I’ve been too busy exploring to think about cancer. All the negativity surrounding my illness is very far from my mind, I just hope it lasts when I get back home.

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.

Down To Earth With A Bump

I’ve taken a bit of break from blogging over the past month, it wasn’t a conscious decision, but a combination of a new job and various busy weekend activities has meant finding time to sit and write hasn’t been at the top of my agenda. When I’ve had some down time, my priority has been to eat and sleep and generally prepare myself for the next few days ahead.

Generally things have been going well, and I am due another PET CT scan in a few weeks time. However, I was feeling almost on top of things until earlier this week, when an unexpected headache lasting almost four days bought me back to down to Earth with a huge bump. However much I try to push it away, cancer always ends up at the forefront of my mind. It’s a reminder that my cancer will never go away, I will not be one of those patients who gets to ring the bell in the chemotherapy suite at the end of my treatment whilst onlookers cheer and clap, celebrating a successful voyage into a life post cancer. I find that whole process very strange, but I know my headache was a reminder this won’t be me.

There are many reasons for headaches, my suspicions says it was due to not drinking enough water, stress and tension; but another part of me will always fear it’s a reoccurrence of brain metastasis. I know too well that this is not an irrational thought, having joked to friends years before that my symptoms suggested a brain tumour, only to find out a short time later that I was right all along. Usually I like being right, but not then.

Having drank copious amounts of water over the past 72 hours I’m feeling much better than at the start of the week, both physically and mentally.

I’d been panicking a lot over the past few days, I know things could be much worse right now, but I also know I’m not ready to die yet, and the thought of having another brain tumour filled me with fear, most likely making the headache ten times worst. It was a huge reality check. My life is never going to be easy or plain sailing, but I am doing well right now, and I must keep telling myself that. There are so many more things I want to see, do and accomplish in my lifetime, even if it’ll be short. I am not ready to go, death isn’t on my to do list in the near future as far as I’m concerned. I don’t think I’m scared of dying, but worried about leaving others behind.

Now I’ve come back down to Earth with a bump, I’m going to take some more time to rest and hopefully start to feel on good form again, even with my next dose immunotherapy just a couple of days away.

The Season Of Good News

Following a recent report from Macmillan, there have been a series of articles in the news over the past few weeks stating that there are now thousands of people in England who have the most advanced cancers, and that they now surviving for several years after their diagnosis. There has been a lot of coverage in the news, for example on the BBC and Guardian websites.

The research, revealed at the National CancerResearch Institute Conference in Liverpool is based on data from England’s national cancer registry. The data captures people who were diagnosed with one of ten different types of cancer between 2012 and 2013 and were still alive at the end of 2015. For me, this isn’t really breaking news so to speak. Two years doesn’t seem like an awful lot of time to me, but its better than nothing, and who knows what the future will hold. It is of course good news! The data shows that new and improved treatments such as immunotherapy mean some cancers can be more manageable, similarly to that of other long term chronic illnesses. Sadly, this is by no means a cure. I still have a terminal illness, and I am still dying, but at the moment the disease progression is slower than I have been predicted in the past.

At my last appointment with my oncologist in Leicester I was told that my most recent PET CT scan was stable, there are no signs of disease progression at present. I ultimately can’t change the path my life has set out on, but I am always so happy to hear those words.

I have been a cancer patient my whole adult life, and stage 4 patient for over 7 years. Last May, after my second bowel surgery to remove melanoma one of my surgeons suggested I should think about giving up work altogether, given my diagnosis. Although that person was clearly incorrect, moments like that really hit home, and are a terrible reminder of how cancer has changed my life irreversibly. It bought me back down to earth with a huge thud. Life isn’t as simple when melanoma is involved.

My friends and family often comment on how brave I am, and suggest they wouldn’t be able to do the same in my shoes. I just try my best to get on with my life, I have no other choice. There is no other way to deal with the situation, so it’s actually pretty simple, despite my life being overly complicated. I would be lying if I said it wasn’t mentally and physically exhausting to get out of bed every day and carry on like there is nothing wrong; but there is no other path I can take, no alternative route. I feel unwell and exhausted a lot of the time, more than most people realise, but I just have to get on with it.

Lately, I’ve had many more down days than I have done previously, there has been a lot of late night crying in bed. I need to keep positive, but its those moments when I am all alone and more vulnerable that I think too much. I’m not finding baths as relaxing as they give me too much thinking time! When the door is locked it feels like a gateway to my emotions opens up and everything comes flooding out. I am trying to be kinder to myself and allow a few melt downs or sad moments which I otherwise would have brushed off. it is worse to bottle everything up, but emotionally it drains me of strength and energy.

I am still the same person inside, however I am just overly emotional at the moment. I’ve cut down on a lot of social activities in the lead up to Christmas and December is upon us. I am finding sometimes it’s just too much for me, particularly with the seasons changing. It’s so dark and cold outside, I want to go home straight after work and sleep. Sometimes this can be detrimental, as it gives me more time to dwell on negative feelings.

The positive news about my PET CT scan is something good to focus on, as well as all the exciting events in the lead up to Christmas time. It might be dark and cold but T’is the season to be Jolly! Perhaps this is the season of good news.

Being Dealt A Bad Hand 

My stage 4 cancer diagnosis means that I miss out on so much, having serious health problems means there are many things I will not be able to do in my lifetime, which I find really upsetting. I have been dealt a bad hand in this life and at the moment I’m not coping very well. I’ve had sleepless nights over the past couple of weeks just wishing things could change.

People talk about elite members of society being the privileged few, but It feels like a terminal illness makes me part of the unprevileged few, not able to have opportunities like others can. All I want is a future. Why do bad things happen to good people so much? So many unasnwered questions!

I am so grateful for everything I do have, and that at the moment my treatment appears to be working, but I do get upset over the loss of opportunity that plagues me every day. So often people talk about life goals or future plans, but it’s sad for me, as I know cannot make those plans, as I won’t be able to achieve many of the things I wish for. It isn’t fair, It really isn’t. I don’t want people to think all I do is compain, but It’s hard not to be sad when I feel as though I’m staring down the barell of a loaded gun 24/7. I feel as though Ive been forced into playing a game of Russian Roulette. It takes all my energy to get out of bed in the morning and sometimes distracting myself from the horrendous situation by cooking and baking just isn’t enough.

I lack control over so much of my life, it’s frustrating that other opportunities and options do not come more easily. As a disabled person it’s great to get subsidised travel and free NHS prescription, but it’s a high price to pay. The opportunities to work full time, pay off my student loan etc are non existent which is hard when all I want in life is some stability amongst all the uncertainty. Just a small amount of control. Seemingly small things such as not being able to get a life insurance policy makes me feel like someone is telling me my life is worthless.

Each hospital trip fills me with dread and anxiety, I keep thinking that out of nowhere I could easily be signed off sick from work for weeks. The negative thoughts and worries constantly fill my head with the ‘What If’ secanrios. The sad thing is they aren’t irrational thoughts. I didn’t do anything to deserve this awful disease, but yet it found me regardless.

Society tells us we should have achieved a whole host of things in life by a particular age; from going travelling, establishing a career, perhaps getting promoted, finding a soul mate, getting a house together,  getting married, and then start thinking about a family. Although nothing in life is a guarantee for anyone, I feel I am not able to achieve these goals, and it makes me feel like an unworthy outcast. I know others might think differently, but I do see my health issues as a huge barrier. I’m so happy for others, but its still really unfair. I wish some of these things would be made easier for disabled people rather than harder. I wish more than anything I was able to do something to change it, If only it was simple. I want to run away from life’s problems and stick two fingers up to society. Sometimes society makes me feel like I’ve failed. Big time.

It’s amazing to see new lives entering into the world, and I admire my friends for their amazing parenting skills, however, for me it’s tinged with sadness as I know I won’t be able to have children myself. I just wish I had the choice rather than feeling like I have been robbed of the opportunity.  Similarly with feeling settled in a house, another constant reminder of all the options that are off the table for me. Travelling back and forward for treatment and not being able to put my mark on somewhere or save to put roots down is frustrating. I want my independence away from treatment, but it’s becoming more apparent I can’t have both, I’d just like to feel as though I have a future ahead of me like my peers and more choices.

The phrase health is wealth feels very apt, having a disability makes me feel like options are servelry lacking for me. I’m plagued by fatigue more and more every day and it makes doing things really difficult, much more so lately. I feel worse than I did when I started pembrolizumab a year and a half ago. I can feel so alone even in a room full of people who I know are my family and friends and care about me.

Of course, nobody knows what lies ahead, and naturally no one can have everything, but the grass certainly looks greener without stage 4 cancer. I’d like to be in anyone else’s shoes but mine just for a day, so I didn’t feel like I had the weight of the world on my shoulders. If there is someone upstairs looking down on us they clearly don’t like me very much. Sometimes at night I think about everything and get so worked up I can’t breathe and feel so overwhelmed with sadness it’s too much to bear.

I think mentally I’d be able to sustain this treatment and find some form of contentment if I knew cancer wasn’t going to kill me in the end. It’s so exhausting fighting a battle I know I am going to loose. I’m full on stress and anxiety with my next set of PET CT scan results just over a week away.

I want to be able to wave a magic wand and take the pain away. I wish I could win the Euro millions, and use it to do good and find a cure for cancer but until then I just have to keep going.

Why do bad things always happen to good people? I wish I was the quiz master with all the answers. I just want someone to hug me and tell me it’ll all be ok and teach me how to play my cards right with this terrible hand I’ve been dealt.

A Never Ending Cycle

I was fortunate enough to get stable scan results a couple of weeks ago following my most recent PET CT scan. It goes without saying that this is of course fantastic news, but I’ve not been feeling on top form for a little while. Having good scan results doesn’t automatically take away any of the pain or treatment side effects I’ve been experiencing, If anything, it probabaly feels worse.

I’ve had an annoying cold for about nine weeks, which has been really frustrating, but I’m hoping I am now rid of it thanks to a course of antibiotics.

My emotions have been very up and down, this weekend marks the start of a very busy summer, including hen do’s, weddings, short trips away and various other birthday celebrations. I love hanging out with my friends, however sometimes it can feel overwhelming. On the surface it seems as though everyone around me has a perfect and exciting life with a huge future ahead of them, and it’s all around me at the moment. It’s a horrible situation as I feel like I don’t have that, we’re not all running the same race, and I feel like life has let me down.

I’ve been feeling low and generally unwell which is difficult. On the surface it seems as though everyone around me is on cloud nine and I’m gloomy all the time, but I can’t help it. I’m feeling a bit sorry for myself at the moment, so need to shut myself away, but there is so much going on I haven’t had any time.

Everyone around me seems to have their future mapped out for them, and in total contrast I have serious lack of direction in my life. I am failing at living a grown up life. The only thing that’s certain for the future as it stands is that my treatment will continue in order to keep me alive. Thinking about that long term gets me down. If it stops then that signals the end, and I’m scared about what lies ahead. Yes, my scan results were good but I still have a relentless cycle of treatment every three weeks. In six months it could be a very different story, it is something I panic about when I’m lying in bed late at night and I end up having broken sleep and headaches. The ‘What If’ scenarios are very scary, they aren’t actually irrational thoughts which is the most difficult part. I have so many questions that nobody has the answer too. I am due to go abroad on two major holidays next summer but every time I get excited another part of me worries more and more and all the changes that could happen over the next 12 months. I am scared to think about plans unless there are about a month in advance because I don’t want to let people down.

I’m petrified when I think of the future, but I know it’ll pass. I feel like I just get used that things and then in a flash another theee months fly by and I will be worrying about my next scan.

Someone once suggested to me that I have a treat every three weeks when I go for Immunotherapy so I have something positive to focus on rather than worrying about having the treatment. It could be something like getting my nails done or going to the theatre, or even just buying myself something nice. I’d most likely do some of the activities anyway, but could be a good way of shifting my focus to something more positive.

On a brighter note I had hair extensions fitted last weeks and they look amazing, just like my own hair used to look. Such an amazing feeling not having to wear a wig.