What A Difference A Day Makes

I had a very busy weekend, with a much anticipated theatre trip to see both parts of Harry Potter and The Cursed Child followed by a day trip to West Sussex on Sunday to walk from Amberley to Arundel with some friends.

I’ve been pretty busy over the past few weeks, including during the weekends, and felt like it all came to a head yesterday after I had my PET CT scan in Leicester. My body felt exhausted; I guess It was a mixture of aching from the walk, lack of sleep, lack of food as I was only allowed water prior to the scan, and a recently shoulder injury. Luckily, desipte not being able to be cannulated via my portacath the scan went ahead as planned.

I got worked up and anxious when I was told a nurse wasn’t available to cannulate me via my portacath. Previously I had been sent away from a PET CT scan after two unsuccessful attempts to put a cannula in my arm and had to come back another day for the scan to take place. At the time it was very distressing as I travelled to Leicester on my own for the scan, thinking I knew what I was letting myself in for. I’ve learnt that with cancer I never know what I am letting myself in for!

Over the past couple of years my portacath has been my saviour and I’ve not been to a scan on my own since. Fortunately, one of the radiographers managed to put a cannula in my arm on the first attempt so the radioactive tracer could be injected into my bloodstream. Considering how many times my veins have failed me I was pretty impressed. Now I have to arrange another visit to the chemotherapy suite for my portacath to be flushed (never a dull day!)

After the initial hiccup my scan went smoothly, I did my usual hour long wait once I’d had the tracer injected and then spent 45 minutes being scanned form head to toe. I am due to see my consultant for the results in the next month. Each scan comes with its own level of stress and anxiety, especially since my hospitalisation and anaphylactic shock when I had a CT scan a few years ago. As the months pass and I learn to live on my new ‘watch and wait’ routine I can’t help but feel like my world could fall apart again at any moment.

I felt really unwell after my scan on Monday and had to go back to bed when I returned to my mums house. I slept solidly for almost three hours, and it just goes to show what a difference a day makes.

Twenty-four hours earlier I was waking through fields with my friends, feeling energised without much worry, and within such a short space of time I felt like an invalid. When I tried to get out of my dads car when I got back I felt like I’d suddenly aged 40 years – walking seemed so difficult and I felt sick and exhausted. All I’d done is lay there in the scanner but it took so much out of me! It felt as though I’d just come home from treatment and my body was drained of energy.

I don’t often share the moments when I physically struggle online, because I want to focus on the positives, but also because ‘dear diary, I was exhausted so spent the day in bed’ doesn’t have the same ring to it. It hit me hard, but I need to keep my head up and keep going.

That ever changing 24 hour period was a harsh reminder of how fragile life with cancer can be. I am slowly beginning to feel better, after some research, Dr Google suggests I might have a trapped nerve which is causing shoulder and neck pain, so have booked in for some more acupuncture in the hope that the symptoms will be alleviated. I know I should really google me symptoms either!

A cynical voice in the back of my mind is linking the pain to disease progression, but I don’t want that negative energy to impact me. I haven’t had any other worrying symptoms over the last few months. Another part of me thinks my oncology team would ensure I get the results much quicker if there were any red flags from their end.

The next few weeks are going to be testing, and I really hope Scanxiety doesn’t kick in. It’ll be easier once I know where I stand so I can breath again.

Mind Your Language

More often than not it’s difficult for people to find the right words to say to friends and loves ones who have cancer. It’s not easy to work out the right thing to say and sometimes it can come out wrong and offend people, even with the best intentions at heart.

Macmillan Cancer Support recently launched a campaign on their Facebook page to help raise awareness of the language used when speaking about cancer, in the hope to start a conversation and make it easier for those in the cancer community.

Even though I can often use this language myself it can prove problematic. I am not ‘brave’ because I have cancer, I have no choice in the matter, and I didn’t decide on the path my life has taken. It’s not something I would have gone into voluntarily, and trying to stay alive is not a choice. It’s isn’t as though I am picking if I should have jam or peanut butter on my toast in the morning.

People telling me to ‘keep positive’ implies I am not allowed to show how scared I am, and therefore show weakness. I’ve been trying my best to positive for years, but do moments of sadness show that I am weak and negative? It took me a long time to accept I needed help in the form of antidepressants, and I think part of that is the expectation that just being positive would be enough to help me through. News flash: cancer doesn’t care if I am positive, or anyone else for that matter. Cancer doesn’t discriminate. Yes, It doesn’t wonders for my mental health to be in a good frame of mind, but this suggests those with negative mindsets die from cancer, or their symptoms will progress, and if a person keeps positive they will one day walk free. Are the people who live the only ones that fight hard enough to stay alive? Wrong.

I am positive the majority of the time, but I have stage 4 cancer and there is no chance I will live my life without this burden, and I continue to learn to live with it as best I can. I am just getting on with my life, going to work, coming home and attempting to be normal (whatever that is!). I am doing the best I can, but sometimes the language used suggests I am just not trying hard enough!

I don’t look like a typical cancer patient and present; I have my own hair and am able to hide my portacath and surgery scars easily. When I explain my situation to new people they often seem shocked, maybe I don’t look ill enough to be a cancer patient? Especially a stage 4 cancer patient who has metastatic cancer that has spread to multiple organs. What does cancer look like anyway? Its not like an identity parade to spot a criminal. I don’t look disabled but I have a free bus pass and monthly disability benefits just the same as others who have a physical disability.

I might look well on the outside, but looks can be deceiving, so I always try keep in mind that I shouldn’t judge a book by its cover, you never know what’s happening underneath. If someone looks tired I’ll try to ask them what they’ve been up to, rather than tell them they look like they’ve not slept for days, it doesn’t aways help to be told you look crap!

I am not annoyed at others for saying something that might come across as insensitive, it’s not exactly straight forward and it all depends how I feel on any given day. Macmillan’s aim is to help change the way cancer is spoken about to make it better for those going through it. In the time is taken me to write this post I’ve seen two of their support adverts on television, so well done to Macmillan for continuing to raise awareness and helping others avoid a classic case of foot in mouth!

The Cost Of Living

I am now back living in the post holiday world of all work, very little play and many, many hospital appointments. I returned from my trip to America earlier in the week (see my vast array of holiday snaps on my instagram feed) and have already been for two blood tests, to my local pharmacy to pick up a prescription and had an appointment with a nurse at my local GP practice. Next week I’m due to visit Leicester Royal Infirmary for a consultation with my Oncologist and to receive my next dose of Immunotherapy. I also due to go to Cognitive Behavioural Therapy and have another appointment with the nurse at the end of the week. Having stage 4 cancer is a full time job, and it can become really tricky to try and fit everything in around the day-to-day life of someone in their early thirties. I have to make sure I write things down in my phone calendar and my hand written diary just to make sure I don’t miss anything, as it can be all consuming.

Despite my obvious frustrations and the frequency of these appointments it’s all part of my life living with cancer, a term I’ve coined ‘operation stay alive for as long as possible’. Each time I have to remind myself how lucky I am be able to have access to the National Health Service and everything it offers. Despite the constant bad press hospitals up and down the country get about long referral list and A&E waiting times, I still love the NHS.

The NHS turned 70 last week; having been born ten weeks premature I have benefited from various services my whole life and I certainly wouldn’t be living the way I am today without it. The resources that are put into cancer care have kept me alive 8 years after being told I’d probably only have about 18 months to live. I may have to travel a long way for my treatment, which is partly through choice, but I would take that any day over the alternative. My hospital have been amazing from the get go and I feel safe in the hands of the specialist teams there.

The cost for me to live is phenomenal; I read that Pembrolizumab costs over £1000 per 50 mg and the recommended average treatment every three weeks is approx 200mg. It’s definitely not small change! I know I wouldn’t be half as fortunate if I were born in another country, so when I get upset, frustrated and angry on my way to appointments I have to remind myself that the cost of living is high, but I am one of the more fortunate people. I guess it is Ok that there isn’t any free wifi or free parking with a Blue Badge at my local hospital if they are keeping me alive – it’s far cheaper than paying for private treatment elsewhere! My status as a member of the cancer club means I also received my prescriptions free of charge. A few years ago I had two cycles of another drug, Ipilimumab which cost that NHS approx £20,000 per treatment. I was initially meant to have four cycles but my cancer began to grown more rapidly and I had to quickly swap to oral drug Vemurafenib (another costly drug) in order to try and stabilise the disease before it killed me.

According to the latest publicity report the NHS treats more than 1 million patients every 36 hours, the maths to work out how many that is across one year is far too much for me to comprehend. I really hope Brexit doesn’t have a negative affect on the treatment I receive and impact the potential for any newer life extending drugs that may be developed in the future. The NHS and the wonderful people that work for it are there from the moment we enter into the world until the moment we leave. The NHS will treat patients no matter what; it’s a service for everyone regardless of status or background, rich or poor, young or old the NHS caters for all. Here is to another 70 years and more.

Thankful to still being kept alive.

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.

I Can Hear The Bells

No, not wedding bells, but end of treatment bells! A few months ago a bell was installed in my local hospital’s chemotherpay suite. The tradition is that patients ring the bell when they have completed their final chemotherapy treatment, to signify moving on to the next chapter, and the end of a dificult journey, like some sort of graduation ceremony.

The words on the plaque next to the bell read:

Ring this bell
three times well
its toll to clearly say
my treatment’s done
the course is run
and I am on my way!

As this new initiative comes into play I have been hearing the bells more and more frequently on my hospital visits. The idea is that it is a celebration, onlookers cheer and clap to celebrate whilst a person rings the bell after their last round of treatment. Personally, I have found this particulary difficult during my more recent visits; having a stage four diagnosis, and no end date for treamtment means that i’ll be recieving immunotherapy for the rest of my life, so I won’t get that chance to ring the bell…ever!

Part of me understands the process and why it is important, however I’ll be the first to admit that I feel sad and also slightly angry that I don’t get to ring the bell, and can’t help but feel it’s a bit on an insensitive process for those who can’t. Not everyone will make it to the end of their treatment, or like me do not have an end date. If you’re in my shoes no treatment is a sign of impending death, as I cannot live without it.

I often think the ringing of the bell might be a bit premature, some patients may have to return for more treatment in the future, without having had a scan to check the drugs have done the job they were meant to. It seems to early to celebrate something that is so unpredictable, although I’m sure that being able to acknowledge the victory of reaching the end of a cycle is important and empowering to patients, but part of me will always feel it is unfair on those who aren’t able to celebrate in the same way.

I am sure that the bell ringing creates a feeling of positivity and hope for some, and marks the beginning of a new chapter. I can only imagine a life free of treatment and hospital appointments, and having something to symbolise the end of an awful ordeal. Maybe I am being overly negative or sensitive, but If someone rings the bell or not it doesn’t determine if they will go into remission or stay cancer free. Perhaps there are other ways patients can celebrate without it being so public?

I understand that there are now a number of bells in chemotherapy suites up and don’t the UK, and I am sure it is great for many patients and their families. However, I know I am not the only stage 4 patient in this position. No matter how hard I try to stay positive, I know I won’t get to the ring the bell, as I don’t have a future without cancer in my life. Yet again, I can add it to the long list of things I am missing out on.

Concessions For Disabled People

After my most recent blog post Something To Look Forward To, It has come to my attention that many people may not know of some of the concessions or discounts they might be entitled to if they are in receipt of disability benefits, or have had, or are currently undergoing cancer treatment.  Something To Look Forward To are a great small charity who offer free event tickets, beauty treatments etc to those experiencing cancer, however there are also many other opportunities those who are registered disabled can make use of.

Although the free NHS prescriptions and a Blue Badge are extremely useful and practical, having cancer is really expensive which means some people might miss out on doing things they enjoy. With this in mind I thought I’d compile a list off potential discounts and money saving options for travel and recreational activities which might be helpful to others. If anyone knows of discounts or offers I’ve not covered, do feel free to let me know and I will add them to my list, and most likely take advantage myself.

Disabled Persons Railcard

A Disabled Persons Railcard provides those who have a disability that makes travelling by train difficult 1/3 off both standard and first class anytime, off-peak and advance fares. This also applies to one companion travelling with them at the same time. This applies to those with a visual impairment, a hearing impairment, epilepsy or those who are in receipt of a disability-related benefit. It is one of the first discounts I was made aware of when I first started to receive Disability Living Allowance (now PIP) back in 2010.

CEA Card

The CEA Card is a national card scheme developed for UK cinemas which enables a disabled cinema guest to receive a complimentary ticket for someone to go with them.  I’ve used this card in various cinemas chains up and down the country including Cineworld, Empire and Odeon; and it is really handy, especially when cinema tickets can be over £10 each and splitting the cost makes it much more affordable, particularly for those who cannot go alone without any assistance. Those who receive benefits such as Disability Living Allowance (DLA) or Personal Independence Payment (PIP) are eligible, as well as various other benefits listed on the website for the CEA Card. Cardholders must be 8 years of age or older. The card costs £6 for the year so it’s worth it, even if it is only used twice a year.

Access For All Admit One Card

The National Trust admits a companion, or carer, of a disabled visitor free of charge, with the normal membership, or admission fee, applying to the disabled visitor. The  Access for all Admit One Card is free of charge and can be issued by emailing National Trust directly and sending proof of being in receipt of a disability-related benefit, such as Personal Independence Payment (PIP). This card is made out in the name of the disabled person, not the companion, so there is not a restriction to taking the same person on each visit, which is really useful. I’ve got one of these cards but am yet to use it.

Gym  Membership Discount

Many gyms across the country offer discounts for disabled people, in particular gyms run by councils, depending on where in the UK you live. A example of a chain gym that offers discount is Better Gym, know as the Better Inclusive Membership. This membership gives disabled people full, anytime access to facilities at over 200 leisure centres, including use of gyms, pools and fitness classes. The costs for this is very reasonable, at just £19.95 per month with no joining fee and no minimum contract. Like the other offers, I had to show proof of being in receipt of disability benefits when applying for this.

Concert / Theatre Ticket Concessions

I love going to the theatre and gigs, and was pleased to find out many venues or theatre companies operate an accessible ticket scheme for those in need. Being in receipt of Personal Independence Payment (PIP) means I’ve been able to take advantage of some of these offers which make a night out at the theatre practical and enjoyable. Ambassadors Theatre Group own many theatres in the West End and across the country and operate an ATG Access Membership Scheme for people needing assistance. I recently booked accessible tickets to see a show in the West End and received great service, someone even asked if we needed assistance with our interval order which I thought was great, especially for those who may be using a wheelchair. The National Theatre also operate a National Theatre Access List offering concession tickets for disabled people and carers, which means those eligible can get a pair of tickets to a show for just £32!

In additional to Something To Look Forward To there are also organisations such as Willow Foundation who provide Special Days for seriously ill 16 to 40 year olds. I had a special day organised by them in 2011 which included a trip to London, tickets to see a musical and a lovely meal out with some of my family. I would definitely recommend it for those who may qualify.