Another Year With Cancer

Another year seems to have gone by in a flash! Christmas 2018 is upon us and I’ve been thinking about everything that has happened over the past year.

In some ways in been a quiet year in cancer terms, I recently had my 41st cycle of Pembrolizumab and all remains calm on that front. Luckily I have a break built in over the holidays and I am not due back at Leicester Royal Infirmary until mid January. Hooray!

My scan results in early December indicated all remains stable, which is fabulous news. It doesn’t mean I’m cured of cancer, or that I’m in remission, however it shows how amazing Immunotherapy is and that things are continuing to move in the right direction. I know my fourteenth year with Melanoma will continue to challenge and surprise me, but hopefully I can turn this in to more of a positive.

In the last twelve months there have been some huge highs (trips of a lifetime, new family members) and some massive lows (feeling overwhelming sadness for the life I feel I’ve lost, getting major FOMO, feeling left out and generally feeling not good enough for others). The stability of my mental health has been hugely challenging, and there have been multiple times where I’ve felt I had control of life; only to realise that I couldn’t be further away from feeling in control and it actually feels as though my whole world has come crashing down around me. Even as recently as last week! I haven’t felt as bad as this since I was first told I had a brain tumour over eight years ago. With another year looming I’ve began to worry about the year ahead, and the challenges living with cancer might throw at me. No amount of therapy or medication will make this disappear, but it’s slowly making things a bit easier. I know that I will have to continue combating my anxiety and depression in 2019 no matter what life throws at me.

In truth, I’ll never quite get my Christmas miracle of a cure for stage 4 cancer, but I can still dream. Deep down what really matters is spending time with family and people I care about during the holidays. Last January I started a full time job alongside chemo, and it’s meant down time has been less of a feature in 2018. That crazy thing is. I did it! I held down a full time job whilst having treatment for twelves months and I am determined this will follow through into next year and beyond. Often I don’t feel as that I have many ‘successes’ so to speak, but If I had to pick something I am most proud of in the last year, that would almost certainly be it.

As ever I’m apprehensive about the next 12 months and hoping it’ll be peaceful and calm.

Wishing everyone a Merry Christmas and a very Happy New year!

Festive Feelings 2.0

Christmas 2017 is a day away, and it seems like only yesterday I wrote the first Christmas blog post Festive Feelings, but 365 days have passed and a lot has happened over the past year.

On Monday I went on a Christmas trip with my Mum and Sister to Brussels, which makes a huge change from the week before Christmas last year, when had my ninth cycle of Pembrolizumab. So far I have had 25 cycles of the drug and all remains stable, which is more than I could have wished for during 2017. I am pleased to say I haven’t had any last minute hospital dashes or huge scares over the past few months. I am also very lucky that I haven’t had another major operations in 2017. Once again, hospital is the last place I would want to be over Christmas, and am really grateful to be an outpatient, particularly at this time of year.

I often start to worry about the year ahead and the challenges cancer might throw at me. The unpredictable nature of the illness has been a huge part of the anxiety I have been experiencing lately. Melanoma is never far from my mind, particularly during the festive season.

I’m grateful to be well enough this Christmas to enjoy it again, although I’ve been feeling very down over the past few months I know how lucky I am. Overall it doesn’t matter how many presents someone gets, how expensive they are, how festive the house looks or how big the Christmas tree is. There are much bigger problems in life than what films to watch on Christmas day, or what gifts to buy family and friends. What really matters is spending time with people I care about, and trying to be as happy and positive as I can moving forward.

2018 marks a big change for me, I recently got a new job which I am due start in January. I am excited to have a new focus, and for the new challenges that will come with it.

Wishing everyone a Merry Christmas and a Happy New year!

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.

Something To Look Forward To 

Since my last blog post Being Dealt A Bad Hand I’ve tried to focus more on all the good things I have in my life, and changing the things I can control. I’m going to do my best to try not to focus on those I can’t change. This can be very challenging week on week, but I feel a little more postive this week. It’s good for me to have something to look forward to post treatment, such as meeting with a friend I’ve not seen for a while, or planningfun activities around Christmas time.

By chance, I came across a charity called Something To Look Forward To via social media a few weeks ago. Something To Look Forward To is a charity website for people with cancer and their families, which allows them to access a variety of gifts donated by other people and companies. This can be anything from restaurant meals, hotel stays, hair and beauty treatments, or tickets for various gig, events and attractions across the UK.

I filled out the forms and was lucky enough to recieve a voucher for a meal at my local pizza restaurant, and am looking forward to using it! I already know what I want to order. It’s the small things that sometimes make a big difference, particularly when people might be struggling with the mental and physical effects of cancer. I’d recommend anyone going through treatment to check out the website, you never know what you might find.