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.

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.

World Mental Health Day

World Mental Health day took place this week, and I saw lots of long posts on social media about the importance of looking after all aspects of our health. The day aims to draws attention to the importance of mental health and increase education on the subject which people often shy away from. Having stage 4 melanoma has hugely impacted both my mental and physical wellbeing. Knowing that I am dying, that something inside my body is killing me, and I’m constantly having to fight it off is often too much to process. 

Receiving a diagnosis of a serious illness such as cancer can have a huge impact on a persons mental health, and I have felt this over the past few years, particularly since receiving different chemotherapy and immunotherapy treatments. Thanks to my terminal diagnosis It is normal for me to experience huge levels anxiety, worry and fear on a daily basis. I touched on this previously back in April in a blog post called Maintaining Mental Heath, which focussed on the importance of exercise, It’s amazing how much a little exercise can help mental wellbeing. I sometimes take part in the occasional Parkrun, my time has actually gotten worst since I first went, but I do feel better for taking part. I tend to walk / jog the route, but its better than not doing it at all. I’m focussing my breathing rather than all the other negative thoughts that cloud my mind every day.

Having cancer is so draining, and the frequency of doctors appointments and hospital visits often adds to my anxiety and worry. Over the past seven days I’ve been to the GP twice and the hospital once, and I’m due to go in for immunotherapy tomorrow. Sometimes it just feels like too much! I’d love to escape somewhere for a few weeks with no hospitals around.

I’ve read a lot about Post-traumatic stress disorder and the effect it can have on cancer patients. People experience flashbacks and panic attacks as a reaction to exposure to very stressful and traumatising events they’ve experienced in the past. I’ve truly never really appreciated being mentally well, and the impact being unhealthy can have on a persons life until mine completely changed. I’ve always been a stressed person; school and studying at University were huge challenges for me, constantly worrying about deadlines etc, but that’s nothing compared to the way I feel nowadays. I once tried to see a psychologist when I was first diagnosed with stage 4 melanoma, but back then I felt worse for it. It was another trip to the hospital I just didn’t need! All my friends were embarking on new careers whilst I wasn’t well enough to get out of bed in the mornings, let alone go to work, and talking about it felt like a constant reminder of what I had lost. Years later I tried to seek counselling, and was fortunate enough to be referred by my GP to a local service in London. The idea with the sessions meant I had to commit to seeing someone for at least twelve weeks, however as I was about to mention this to my work I found myself back in hospital undergoing life saving surgery.  I never managed to make it to my first appointment, and since then I haven’t attempted to try again.

I know that I will always continue to experience these negative feelings and sadness because I am still having treatment. I am about to undergo my 23rd cycle of Pembrolizumab. There is still no end in sight, my treatment will continue, and I know I have to try to accept this. There is no being ‘out the other side’ of cancer.

Being in the know is very helpful when it comes to my diagnosis, I like to have as much information as possible so I feel like some things are within my control. I had a PET CT scan late last week and will get the results in three weeks time. I hope it will be ok, but I don’t think I can ever be that confident it will be. Ultimately it won’t be ok, and the longer I am well, the closer I am to becoming unwell again. Yes, it being mentally draining is an understatement! I live my life in cycles of twelve weeks, so I am really hoping I can continue on Pembrolizumab and refocus after I received the results. I really want to enjoy Christmas and New Year.

As I get older I find mental health problems seem more common than I once thought, but perhaps that’s part of being an adult and being more aware. Sometimes it’s ok not to be ok, I know I have both good and bad days, and have to accept that. Tomorrow is a new day as they say! I’m sure there are some people reading who have or will be effected by mental health during their lifetime, either themselves or by knowing family or friends who have struggled. Luckily I have a strong network of people around me to talk to, as well as using this blog as an outlet for my feelings.

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.

A Time To Live 

In October last year I was one of twelve participants interviewed for a documentary about people living with a terminal illness. The documentary, A Time to Live explores the question​ of​ what would you do if you were told you had a terminal diagnosis and may only have months to live?

​For so long I’ve had to face the uncertainty of a Stage 4 cancer diagnosis. I often wonder Why me? Why now? Did I contributed to this? Did I do something wrong? Is there a way I can change the final outcome?

​I haven’t yet fully accepted my diagnosis, and I don’t think I ever will. For me, this something that is an ongoing struggle to accept, but I’m determined to take something positive from it all. This is partly why I started a blog after all.

Blogging is ​a process which ​has helped me be more open about my feelings, and I believe it has also helped my friends and family have a clearer understanding of how I feel about my life ans all its challenges. I also hope my writing has helped other people who may be in similar shoes. For such a long time I thought I was on my own, it turns out thanks to the World Wide Web that I am not. There are plenty of other people, both young and old going through an equally challenging time who are also living their life to the fullest. Isn’t that what you would do?

During the filming I talked about my thoughts and feelings on having cancer and how I deal with the knowledge I have a limited time left on this earth. At 29 It is often hard to believe that my impending death will be much sooner than others. I have no control on the outcome and when that might happen. Do I wish I didn’t know? Yes.

A few years ago I would never have dreamed of being involved with a charity such as Trekstock or being part of something so public as a documentary​. Participanting in this  has allowed me to talk about my diagnosis in such an open way. I may have a drama degree but I am very much a behind the scenes type person! I spend my time organising interviews for others rather than being the one who gets interviewed. My friends and I frequently send documentary recommendations to each other, so it feels bizarre to on the other side of things, Its the sort of thing I would tune in to watch​! alongside programmes such as 24 Hours in A&E, Child of Our Time and anything Louis Theroux does (who doesn’t love a bit of Louis).

The documentary crew filmed me having my eyebrows tattooed and hanging out with some of my friends as well as filming me at work. Its these seemingly ordinary activities which have helped keep me sane, especially since starting active treatment in September 2015. Cancer has became my whole life, not just an inconvenient visit to the hospital every three months, but something that effects my life every single day. I am however a glass half full person, and I hope this comes across in the film.

On that note I’ll shortly be heading away for a few days to Prague, while I still have time to live! Please do tune in if you can, I’m sure it’ll be interesting viewing. You can watch my TV debut A Time to Live on BBC2 on Wednesday 17 May at 9pm. There is also extended footage available on The Open University website.

Huge thanks to Sue and the amazing team that put it together.

The Importance Of Headspace 

I’ve been finding it very hard to relax over the last few weeks, I seem to be getting more anxious about my treatment as time goes on. Perhaps it’s because the festive season is fast approaching and In previous years I’ve be very unwell around Christmas time. I think it has a lot to do with not knowing how long the treatment will work for, yet again I feel as though I’m living my life in three month cycles, uncertain as to what might lie ahead of me in 2017. I’m also due another PET CT scan at the end of January, which I know will come around quickly.

I worry a lot about the future and the ‘What If’ scenarios, despite knowing that my circumstances are completely out of my control. I wake up from sleeping on a nightly basis, I do my best to focus on work and social activities during the day, so it all seems to come to a head late at night. I worry about bad things happening to my family and friends, which is also irrational, but unsurprising considering the bad luck I’ve had over the past few years.

A few months ago, when I began recieving Pembrolizumab I wrote my will. I’m the sort of person who likes to be in total control so felt like I neeed to write a few things down which would make the whole process easier. I used the discounted will writing service through Macmillan which was really useful. I have very little in terms of assests, but it gave me peace of mind knowing I’d done my bit. At the moment I haven’t given any instructions about my funeral because I don’t want to think about it yet, I’m also not sure what I’d want for my own farewell, is anyone ever sure?  I keep telling myself that despite being only 29 years old it’s a sensible move and realistically everyone should make one. I think since then my situation has really hit home.

I’ve been trying to find ways to relaxing and I’ve been using the Headspace app over the past couple of weeks. I received a subscription when I signed up with Trekstock back in September. There are so many options on the app, they’ve recently added a new 30 session pack for cancer which I’m going to try out, as well as reading before I go to sleep. Usually, I end up spending the last 30 minutes before I go to bed looking at my phone and shopping for things I don’t need online. It’s really important that I make sure I get some headspace and down time so I don’t drive myself crazy overthinking everything and worry about every little ache and pain, so I need to make some adjustments to my routine.

I know I’m strong, I have to be in this game, but daily life is also totally exhausting, its relentless and can be really hard work. I’m very lucky that I’m responding to Pembrolizumab, but it’s more the fear of not knowing what the future holds. Currently there isn’t another treatment I can have on the NHS, so I’m fearful of what happens if the drugs stop working. I don’t know in that’ll be tomorrow or in 5 years. With everything feeling uncertain I’m putting on a brave face 24/7 and it sometimes becomes too much to deal with. Hoping some new relaxation techniques will make me feel better.

The Drugs Do Work

Today I received some fantastic news. After five cycles of Pembrolizumab it appears the drug is having an effect and the cancer in my bowel and pelvis has reduced. The drugs do work! Hallelujah!

I had another PET CT scan on Thursday last week and luckily the scan was read in time for my appointment this morning. Although I had a vague feeling I’d receive some positive news (it’s about time after all), I didn’t want to get my hopes up for fear they would be dashed. Over the past few weeks I haven’t been in anywhere near as much pain as I was prior to my most recent bowel surgery. However, one can never be too sure. I’m so pleased about the result, it’s difficult to articulate exactly how much it means to me to know my body is fighting back. I feel like it will allow me to relax a little and enjoy the next few months without a dark cloud of fear hanging over me.

During my consultation the Dr I saw (not my usual Oncologist, which is always a good sign) carefully went through the report with me and compared it to the previous one from June. Although I was uable to see the scan due to a technical glitch his explanation really put my mind at ease. He hopes I’ll be in the 10% of patients who have a long term response rate to pembrolizumab. I guess only time will tell, but for now I’m more than happy with that.

I feel like I need to do something else to raise awareness of this awful disease. Watch this space!

Portacaths & PET Scans

On Monday I had my fifth cycle of Pembrolizumab and also had a portacath inserted.  I’ve had numerous problems over the past few years with my veins, they are so tiny it often takes two or three attempts to take blood, and as I am having it taken so regularly it has become a painful and frustrating process.

Owning to my previous bad experience when I went to have my last PET CT scan my Oncologist suggested I should consider having a line fitted in order to make the whole process easier. Prior to starting Pembrolizumab I went into hospital to see a nurse  who explained my options; a PICC line, hickman line or portacath.

After thinking about it, I decided on a portacath. My main reason is that there isn’t a fixed external component with this type of device, so it seemed far more descreet and easier to manage than the other options. Essentially a portacath is an implant, soft plastic tube with a rubber disc at the end that can be used to draw blood and also give me drugs.

The surgeon who performed the operation explained the whole process so clearly, the likelihood of infection etc, so I felt much more at ease having met with him beforehand. I’d not been sleeping  very well at all the week before, a couple of nights I’m sure I only had about 2-3 hours sleep, I think I was playing the scenario over in my head too much and starting to feel really anxious about it.

When the time came, the surgeon inserted the port under the skin of my chest, and the tube into a vein near the heart. Although it felt unpleasant I wasn’t in any pain and the whole process took about 45 minutes in total. No matter how many times I’ve had local anaesthetic over the years I still feel nervous! The sensation of the needle going into my neck made me winch and jump. I wouldn’t have been so bothered if it wasn’t In my eye line!

The chemotherapy team were able to use the portacath that afternoon, making the whole process much easier. Despite looking unsightly It’s healing nicely now. Hopefully it’ll mean a lot less stress, drama and pain every time I go into hospital for treatment.

I am now waiting on a date for my next PET CT scan before my next cycle of treatment. The waiting game begins again…

I’ve also decided I need to try and get active again and have joined the local gym, I just need some time for my chest to heel first.