When No News Is Good News

A few weeks ago I had my first PET CT scan since adopting a ‘watch and wait’ approach to my cancer treatment earlier in January. Although I had to wait almost a month to see my consultant for the results, I am thrilled to report that all has remained stable.

I feel like this a major hurdle I’ve somehow manage to navigate. Naturally, every scan makes me anxious and scared, but this felt different as It was first time in years I’ve had a scan whilst off treatment. It’s the first time since I stopped doing anything to help my melanoma remain stable. No longer doing my bit by going for Immunotherapy is hard to get my head around, but as they say, no news is good news.

I am still feeling very fatigued, but as many people have pointed out to me I have an active social life and a busy full time job, so there is no doubt in my mind these are contributing factors. Often it feels like 10 hours of sleep a night is not nearly enough, so I probably need to reign it in a bit. It’s hard to find the time to see friends, family and work a 40 hour week, but I often feel like others around me manage it! I know my next few weekends are quiet and I have some annual leave coming up soon which is a blessing as I can spend some much needed time chilling out, watching Netflix, getting up late and doing small things like sorting out my wardrobe, and putting photos from my summer holiday trips to America and Thailand on my laptop and getting some printed; something I’ve promised myself I’d do for months, but I’ve never felt I had the time.

I’ve also been relatively quite on my blog of late as I’ve tried to settle in to my ‘new normal’ and readjust to my routine (or what feels like a lack of routine altogether!) and in all honesty, I’ve been too tired when I get home from work to write a post when I don’t feel I’ve too much to say. I’m just trying to get on with my life, which is a good thing, and exactly what my Oncology team have been telling me I need to do.

I’ll be celebrating today’s win with an early night and attempt to carry on my ‘new normal’ life until my next scan in the summer.

Finishing Cancer Treatment

This is a blog post I never thought I would write, I’ve been keeping some news to myself over the past 12 weeks, which is a pretty big deal. I am no longer receiving Pembrolizumab on the NHS. For now, I have finished taking the drugs and am treatment free and am adopting a ‘watch and wait’ approach.

I am no longer making the trip to Leicester Royal Infirmary every three weeks for Immunotherpy and am now on surveillance. After receiving various chemotherapy and Immunotherapy treatments over 4 and a half years I have now pressed pause on this part of my cancer journey. This means I will have regular scans to check for disease progression and wait to see what happens, and make a decision about future treatment when the cancer returns.

For me, being told my stage 4 cancer diagnosis meant I’d likely live for 18 months back in 2010, It’s difficult to know how to process where I am at right now. This remains even more difficult to explain to others, and I am sure there will be many reading this blog post who will ask how and why this has happened. Some my query the status of my health, does this mean I am cured?! Sadly not, but for now at least, it appears that my melanoma is under control and my last few scans have appeared to show little or no evidence of disease present in my body. Melanoma is hiding away for now, however, it is an aggressive cancer so I really don’t know for sure what could happen later down the line. All I am able to do for now is to attempt to live in this new world and continue my day-to-day life, in the hope it’ll be a really really long time until I have to resume treatment.

I am simply waiting, and taking things one day at a time, as only time will tell if and when my cancer will return. I have been on ‘watch and wait’ earlier in my stage 4 journey; after surgery to remove my lung tumour in January 2011 I remained disease free until May 2014. I still had the occasional subcutaneous lump crop up somewhere that was surgically remove, but for the most part was considered NED (No evidence of disease).

Pembrolizumab has been my life line over the past two and a half years and 40 odd cycles later I am going solo. For me, this is incredible news that until just before Christmas seemed like a total pipe dream. Immunotherapy is still so new, so it has been difficult to predict what the future holds with limited data on treatments, and the likely effectiveness they could continue to have in the future.

To cut a very long story short, I visited my oncologist in November last year and he informed me that it was looking likely that The National Institute for Health and Care Excellence (NICE) were planning on making some changes to how advanced melanoma is treated, specifically for patients who had been taking the drug for over two years and were currently NED. He explained that the current guidelines were set to change, which meant that if I stopped taking Pembrolizumab I could be re-challenged with the drug again if necessary in the future, therefore giving me a chance to have a break for the gruelling routine. This came as a huge shock to me, as it was the total opposite to what I had been told before. I have been living in the knowledge that I would be on the drug for the rest of my life, or until it stopped working, as I wouldn’t be able to take it again should I stop voluntarily and recurrence occur.

My oncologist told me that when the drug was first given on a trial basis eight years ago it was only given for two year, so I believe there might well be some people out there who are doing well six years post Pembrolizumab, but the data doesn’t go any future back. If so, I’d love to hear experiences of these patients. Naturally, I am sure the decision by NICE is also a cost saving measure, as it is so expensive to produce. I guess it works out cheaper for patients to re-challenge later down the line rather than be on the same drug for years on end. I am ok with this approach as long as I know I have options. When I first took Pembrolizumab in 2016 it was my only treatment option, but now there have been other drug developments in the field, meaning in the future I might not have to put all my eggs in one basket. It is petrifying, but I am hopeful there will be more positive change around the corner.

In late January, after a delay in the final decision I was told I would now be under surveillance. This was just two days before I was due back for chemo following a Christmas break. Being under surveillance makes it sounds like I am been threatened with as ASBO, or about to take an exam under timed conditions!

As my portacath is currently not in regular use it now needs to be flushed frequently. Right now I am unable to have it removed, I asked my oncologist about this and he said it should be left in for the foreseeable future and we might be able to discuss removal at some point down the line. Due to my hospital being far away from where I live this has taken longer that usual to sort out but hopefully my portacath will play ball at my scan tomorrow.

Over the last three months, the decision to stop chemotherapy has had a big impact on my mental health. This hasn’t come as a huge shock to me as I have felt as though a rug has been pulled from under my feet. All of a sudden the security that I once knew has disappeared and I am in uncharted territory. As much as I hate having treatment, I felt like I was doing my part to keep this awful illness at bay, but without it, I feel like I am going into battle without any armour. Surely I can’t just do nothing?!

I have been cautious not to mention this to many people, as the future is so unpredictable, but it’s now been 12 weeks since my last infusion and I am due my first PET CT scan tomorrow to check for any progression. This is the first time I have had a scan since early December, so I am keeping everything crossed the drugs are continuing to work after treatment has ended.

I’ve heard a couple of stories from people who have also stopped Pembrolizumab, but have done so in the knowledge they cannot be re-challenged. Apparently, it takes a few months to adjust, so unsurprisingly I haven’t felt better in myself as yet. I am waiting for some new energy levels to kick in sometime soon!

I still can’t believe I am not currently having chemotherapy, given all the negative things I have been told during my cancer journey it is a lot to get my head around. Despite everything, I know how lucky I am, even on days when I don’t feel good. I will never be completely rid of cancer, it will always be a huge part of my life, but for now things are ok.

I will update with my news once I’ve had my results in a few weeks.

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 and 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 North East London, so it almost feels like a new city, having discovered parts I would never have seen before.

I still get 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!

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!

Back To My Roots

The end of 2017 marked a significant change for me, no longer wearing a wig or having hair extensions, which had been a huge part of my life for the past two and a half years. Hair loss is daunting, heartbreaking and isolating, so I thought I would write a short post that might be useful for those who are currently experience hair loss due to cancer treatment, and are perhaps thinking about wearing a wig. I documented my personal experience with a couple of blog posts, Hair Envy and Letting My Hair Down.

Although I’m so pleased to have my own hair back, the thought I could loose it again with future treatment is never too far from my mind. I started to loose my hair towards the end of 2015 when I first starting taking Vemurafenib, and wore a wig on an almost daily basis for over two years. Due to a change in treatment, last summer my hair had finally grown enough for me to start wearing hair extensions, and I got rid of the wig all together. Sadly I didn’t manage to get rid of the wig before I turned 30, which was my original goal, but so far this year I’ve be sporting my own long, curly hair, which is the best gift I could have asked for.

I had my extensions removed late last year before starting a new job. Nowadays my hair is no longer affected by the cancer blasting drugs and has returned to its natural state. It looks the same as it did before it started thinning and falling out, which is awesome.

As a female loosing my hair was one of the worst  things that could have happened alongside my treatment, because it made me feel so ugly. When I looked in the mirror I saw someone who wasn’t really me anymore, but a cancer patient. Nothing screams I have cancer more than having no hair and eyebrows. When this happened It hit me just how serious my situation was. Now I have my own hair again I feel a little more confident, but it will take time to get used to again.

I’d read about how most patients loose their hair during treatment, and that when it does come back, it can come back a different colour, or a different texture.

When my hair loss first started I began to use gentle hair products and non-medicated shampoos, conditioners, and body washes, so without parabens. My scalp and skin became very sensitive so I steered clear of my usual go to products. When washing my hair I used gentle strokes and patting motions to clean my hair rather than scrubbing as I would have done previously. I used various products from Aveeno, Timotei (thanks poundland) and Sanex and also cut down the amount I washed my hair, having previously washed it every other day. I have since read that leaving a longer time between washes doesn’t prevent hair loss, but the less time I spent starring at clumps of hair in the bath plug hole the better. My scalp still feels fairly sensitive now I am taking an immunotherapy drug, so I still use the similar products on a daily basis.

I stopped using a hairdryer to dry my hair, instead using a towel, and made sure to rub it very gently. I found it was best to avoid too much heat from hairdryers or hair straighteners, so started going for a more natural look. This goes against everything my Nan said when I was younger, she’d always say leaving hair wet would mean I would catch a cold!

Once I began wearing a wig it became important for it to look as normal and natural as possible. I got two wigs on the NHS via Macmillan Cancer Support, althought I only ever ended up wearing one. It got to a point where it was my new normal, It was only when I took my wig off when I got home in the evening when it really hit me. I would go past a mirror and catch a glimpse of myself and suddenly it hit me that I was extreamly unwell, and that the drugs I have been taking to keep me alive and try to make me feel better were actually poisoning my body so much that I lost my hair, eyebrows and most of my body hair. I was filled with an overwhelming sadness and I still feel emotional thinking about it.

I knew people would notice when I started wearing a wig, as the style and colour were very different to my natural locks, so getting it cut and shaped by a professional hairdresser was really important, It made me feel more comfortable, as it looked more natural and felt less heavy on my head.

I used a hair brush from Denman specifically desgined for people with wigs or hair extensions, and washed the wig every few weeks in luke warm water using gentle baby shampoo, I was pretty shocked at how much dirt came out!

The best tip I was given was to use a clothes steamer to straighten my wig, it sounds bizarre, but it worked wonders on my wig after weeks of excessive brushing, which sometimes left the ends looking dry and brittle. I bought one from Amazon which helped to give my hair the glossy newly washed look.

I then had hair extensions for about six months before it had grown long enough for me to feel happy and confident going back to my roots. It was very expensive, but I justified the cost by thinking about how much money I’d saved from not going to the hairdressers for a cut and blow dry for over two years! I’d recommend it to anyone if they want to speed up the hair growing process.

I am due a PET CT scan in the next few weeks, which I’m already very anxious about. I’m hoping that pembrolizumab keeps me stable for the foreseeable future, as well as the obvious it would also mean I can continue to enjoy having my own hair again. I always used to want straight hair as a teenager, but nowadays I’m not fussy, I guess it’s one of those things you might not truly appreciate until it’s gone!

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.