The AMAZING Charities That Have Helped Me

So, during the last couple of years there have been a few charities who have supported me. Before being diagnosed I either had not heard of or did not know the extent to which they help people. I thought I should do a quick list of these Charities to flag them up to people who were like me before diagnosis, a little oblivious to them.

Teenage Cancer Trust – https://www.teenagecancertrust.org/

As soon as I was diagnosed I had support from TCT and a TCT Clinical Specialist Nurse. She was there for support in my diagnosis of cancer. She is able to explain things in a way I can understand as medical jargon can get quite overwhelming. She answers questions about medication and effects of treatment etc. After my operation she came to my house to support me mentaly, and since has become a good friend and someone I trust more than anyone. She also offers advice on benefits, money issues and prescriptions. She attends appointments with me to support and lend an ear as my memory isn’t very good and she can then relay later. She is there for me to give advice on family and friends; in how to tell them about my cancer or dealing with their reactions to my cancer, as some people react in badly and in a way that is hurtful to me.

At the YOU (Young Oncology Unit) at Christies there are Youth Support Coordinators. These guys are so much fun and keep your spirits high when needed whether you are an inpatient or not. They provide support on your diagnosis and they help you live a ‘normal’ fullfilled life during this chaotic time. They also make you socialise and encourage you to leave your room when you are in hospital. When I was on treatment I was in for a week at a time on treatment and then back with infetions in between. I was constantly in hospital. Whenever I was on the YOU they encourged me to keep busy or try something new. The YSCs are there to play games with you, they run a quiz, there was weekly baking and on a Wednesday we would have Dominoes Pizza!! They also organise trips ie theatre trips to london, frequent meals, spa trips, the Music Trip to Albert Hall to meet The Who, organise special visits from celebrities etc etc. They do so much and I will be eternally greatful for what they have done for me!

  ” ….bringing normality to a very abnormal and difficult life experience.”

Lorraine Wright, Youth Support Coordinator

The Christie Charity – http://www.christie.nhs.uk/the-christie-charity/

The Christie as well as being the best hospital in the country for Cancer Care, are also a charity which have helped me in ways other than treating me for Cancer. The YOU Unit at The Christie has a Music Room and ‘Hub’ space . This is a place for Family and Friends to hang out with you in the hospital. Also a place to play games, watch tv, play pool, they have lots of games like the wii, playstation etc, lots of dvds, you can play music on the Jukebox,  get a drink and snacks. There is a weekly Baking group where you can make lots of things like cakes, biscuits, pizzas, gingerbread houses etc etc.

They also provide two Music Therapists who come in twice a week. They helped me come out of my shell, at first didnt want to leave my room, or enter the Hub. I started singing with the YOU Band, I was encouraged to do solos and my confidence and my comfort in the surroundings got easier and more relaxed. They are able to teach you different instruments such as the ukelele, piano, drums, guitar, saxaphone, you name it they can do it. I am infact attempting to complete my ABRSM Grade 3 exam in Piano witht the help from Steph, one of the therapists. They also provide extra trips and opportunities ie. gigs and concerts to perform in or watch. I use music as my therapy so I have become very close to the Christies Music Therapist, Steph as she offers me advice and encouragment and pushes me to do more!

The Red Cross – http://www.redcross.org.uk/

The red cross provide mobility aids all over the UK. I didnt know about this service until I needed it after my Leg Operation. I am also currently using on of their chairs. They only require a small donation but without this chair I wouldn’t be able to leave the house or do any activities whatsoever.

Look Good Feel Better –  https://www.lookgoodfeelbetter.co.uk/

Look Good Feel Better provided a group session where you could talk with other girls going through cancer at various stages. I was recently diagnosed when I attended my session and I hadn’t even thought about chemotherapy effects as it wasnt on the cards. However, I believe that this session helped me deal with the symptoms such as losing my hair and loss of eyebrows and eyelashes. We also were given a look good feel better kit which was tailored to our skin tones and included some amazing make-up and skin care. This was an awesome gift and I enjoyed playing with make-up and experimenting looks. We were guided by two LGFB volunteers who went through skin care routines and make up application.

The Willow Foundation – https://www.willowfoundation.org.uk

The Willow Foundation provide a ‘Special Day’ for cancer patients across the UK. I had a special day officer who I talked to a lot before my special day arrived. He tailormade my Special Day so suited my needs and requirements ie. the wheelchair, making sure we had time before we had to go home and enough time to go to the theatre after Afternoon Tea etc.  My Special Day including transport to London, 5*  Hotel, Afternoon Tea at The Ritz and then Transport back from London for myself, my sister and my Mum. It was stress free and was an opportunity for us to relax and have a break away from all things ‘Cancer’.

CLIC Sargent  – http://www.clicsargent.org.uk/

I was put in contact with Christies CLIC Sargent Support Officer. He was able to give advice on benefits and money, mental support and you could talk about anything and everything. If you have a problem he has an idea of what to do. He attended the CLIC Sargent Music Workshop I went on too! This trip improved confidence in performing tremendously, I was able to talk to other ‘cancer kids’ who are also musically minded. The support from the Support Officer on this trip helped me get around in my chair, helped when I was feeling ill and stressed and he helped me calm down when my anxiety and panic attacks took hold.

Runway on the Runway – (This year it will be Maggies On  The Runway)  http://www.runwayontherunway.co.uk/the-cinderella-project/ http://www.maggiesontherunway.com/

Just 2 weeks after I had finished chemotherapy I took part in Runway on The Runway, which raised money for teenage cancer trust. We had a dress, hair and make-up done and I even had chance to go into a recording studio and record song & music video with some other people for the advert. The Runway team also provide ‘The Cinderella Project’ which provides a full make-over and dress for girls who are in school and have a important event such as a Prom coming up. This year it will be fundraising for Maggies Centre (A place for Cancer Patients to relax and meet friends – tends to be more for the  adults)

SARCOMA ORG. – https://sarcoma.org.uk/

I want to also mention Sarcoma UK, the charity which offers support to Sarcoma patients and I used their website to look at information I may have needed. I didnt want to know too much about all the statistics etc, so I didnt research my cancer much at all, but I know the information is there. There is also a support line where people can ring up and ask any questions or just talk about any concerns or issues they are having. Sarcoma UK also fund research into treatments and knowing more about this rare cancer.

Sarcoma Support Line : 0808 801 0401

My ‘Willow Special Day’ Trip

The Willow Foundation are an amazing charity who give ‘Special Days’ to Cancer Patients in the UK. For my special day I asked for a trip to London with my Mum and Sister, to go and have afternoon tea at The Ritz and to stay in a nice hotel. This was all arranged for me and payed for by the charity. It was amazing to have this trip which needed no organising on my part especially as I was finishing chemotherpy and waiting for a Lung Operation at the time. I wanted to treat my mum and sister as they have also had such a tough time throughout all of my treatment.

On the 23rd August we set off to London on the Train. When we arrived we had a taxi ready booked ready to take us straight to our hotel. The hotel was gorgeous and really well located! We had an amazing huge room which made us all feel like royalty.  We quickly got changed into our ‘Posh’ get up and headed off to The Ritz for our afternoon Tea.

The Afternoon  Tea was amazing and we took many pictures which I shall bore you with at the end!! We had to enter through ‘The Queen’s’ Entrance as I was in my wheelchair, me and my sister we asscorted through the side entrance, the entrance the Queen actually uses for her Birthday Visits. (Of course we had a photo done which I think looks like a Royal Portrait). The staff were lovely and so helpful without making me feel like a charity case. The doormen in particular we awesome even making people stop walking on the pavement in front of The Ritz so we could have thr perfect picture. As we entered there was a man playing piano, this man was in fact Ian Gomes who used to play for Frank Sinatra. Once we had eaten and taken many photographs we sat and he played songs for myself and my sister Kelly, we requested ‘Fly Me To The Moon’ and ‘Witchcraft’, two Sinatra classics.The actual tea was amazing, there was first a course of various sandwiches, then pattiserie, followed by scones with jam and cream and finally a huge slice of amazingly light cake. I was so full.

  TIP : Do NOT eat before having Afternoon Tea at the Ritz. Have a very early and light breakfast!

The hotel we stayed in was The Grange Holborne, a 5 star hotel in a really good location! It was central for us going to The Ritz and also for the Theatre as I’d booked us to see Dreamgirls as I really wanted to see it before Amber Riley left!! It also had a spa underneath the hotel which was free for us to use the facilities. So the following morning after breakfast we enjoyed the pool, sauna and steam room. This was lovely for all of us to relax and be together in such peaceful surroundings. The room itself was amazing, it was so big, especially for London Hotel Rooms! It had two large Queen sized beds and a huge sofa bed.

It was such a lovely trip and we felt very lucky to be able to go on such a trip. We felt like royalty and it was great to all be together where its not a hospital envirnoment. I didn’t think about my Cancer at all really, of course I had a little anxiety in London centre as its loud and busy and we had no direction when we were ‘sightseeing’. London is also not wheelchair friendly at all! Most paths had no dip in them to get on the other side and some were so narrow. At times this can’t be helped due to the age of some of the side streets but struggling on the main Shopping streets is just not on!

Anyway, I want to say a BIG THANK YOU to Willow, it was such a special day!!

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 LINK TO WILLOW FOUNDATION : https://www.willowfoundation.org.uk/

 

CLIC Sargent Music Workshop 2017

This workshop was literally THE BEST trip Ive done yet! It took place in Stonar School in Wiltshire near Bath. On this trip I didn’t know anybody that was going, not even from Christies, however I have met some lovely people and some now good friends. When we eventually arrived we were welcomed by young cancer warriors from accross the UK and tallented mentors who all have had experience with Cancer.

After some warm up games and introductions we were given a brief overview of what lay ahead! During the workshop I had sessions on Vocal health and Performance anxiety which are both incredibly vital to me as a singer and anxiety sufferer and a songwriting workshop which I had never done before but after I felt able to write my own songs. I was also given the chance to learn the Drums which I have wanted to try for EVER! At the end I managed to play a drum beat with fill! Woo!!!!

Everyone on this trip had a different skill level, some people never having sang/played an instrument at all, and some being at a professional level at their instrument!! In the week we managed to write our own songs in groups and then perform them and record them and perform and record a solo piece. On the second night we held an Open Mic night and I was determined to perform as I felt I would have kicked myself afterwards if I hadn’t. I managed to find a lovely girl who played piano and wanted to perform with a singer, so I signed up! We performed after only an hours rehearsal, Someone Like You by Adele. It was the best feeling as I have never felt so comfortable singing solo before! I then performed this song as well as our songwriting piece  at the last day concert which was streamed live on the internet. I am now determined to perform as often as I can and keep my confidence rising!

As well as working hard everyday, literally from 8am-12 midnight, we had lots of fun evenings. The first two nights we had an Open Mic night; we also had a Silent Disco which I spent the entirety ‘wheelchair dancing’ (I am now a pro). We had a visit from Lucy Spraggon ( Performer/XFactor) who talked to use about performing and also gave us a few tunes; we also had a visit from Tom York (BBC Poldark) who talked more on performing anxiety and coping mechanisms.

It was lovley to be surrounded by people who actually get the whole ‘cancer’ thing as they know directly what it is like, I also loved being around musical people. This was amazing as we all got some form of therapy through music. Music for me has been very important as it is my only outlet of stress (other than ranting to my poor therapist). The mentors and staff on this trip were also amazing and were a tremendous support to me when I wasnt feeling very confident or if i felt unwell. The mentors were amazing artists in their own right and it was awesome to gain knowledge and expertise from them. Anyome can go on this trip no matter what level of talent you think you are! It is amazing!

Go CLIC Sargent!!!!!!

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Back In The Chair!

After my recent operation and decline in leg movement I have had to start using a wheelchair again. I recently went on a shopping trip and it encouraged me to write a blog post on what its like being in a chair.

I am lucky enough not to always require a chair but I now have a greater understanding of how annoying certain things are. One example would be the extremely tall counters in most shops. They seem to be extra tall and therefore it is impossible to reach the chip and pin machines. Shops also don’t seem to take into account the gaps between rails. I think I have now required very impressive driving skills however sometimes maneuvering yourself around the shops in near impossible!!

In a few of my posts I have talked about anxiety and how it affects what you can do. I have found that when I am in my chair I become more anxious. Even more so when in a busy place. I become very ‘aggy’. People tend to stare, although I don’t know whether they actually do at all, its just a feeling that becomes overwhelming. I think when your in a chair you become very self aware and strangely at the same time as feeling ‘stared at’ you feel invisible. Some people are quite unaware of their surroundings, so much so that one dawdling old lady had her ankles taken out in Marks & Spencers, not on purpose I may add. My mother was driving at the time. Honest.

The benefits far outweigh the negatives. I am able to go for walks with the dogs and go shopping, even if its just a trip around Tesco. I hope you enjoyed my rant but if you are a standing person, please be aware of people in chairs, or else you might get your ankles taken out. Also, please don’t bend down to talk to us. Thanks.

 

 

 

Pushing Yourself!

Through out this whole experience I have found that this, ‘pushing yourself’ is probably the most important thing for me to do. I find that I struggle going anywhere I don’t know, with anyone I don’t know, or going somewhere with lots of people or lots of noise. I have never been the most confident of people but I have never felt this anxious of mundane and ordinary activities. I find that due to my stubbornness I push myself into doing exactly what my anxiety would have me not do. If I did not listen to my stubborn side I would never go out, see friends or experience things. I feel like this is one of the most important things for people to do, not only cancer patients but anyone. There are so many great opportunities if you just say “yes!” and I think its such a shame people miss out on these. I know that it is not easy; as I usually end up thinking “why have I signed up to do this”, “what am i thinking”, “I should just stay at home”, but every time I have a great time. I want to encourage anyone under treatment with TCT especially to sign up to any trip! Ive made amazing friends on these trips and you get to talk to people with similar worries and concerns.

Anyway…..

I am going on a trip with the charity CLIC Sargent next week which is like a Music Summer School type thing. This is an example of me trying to test myself as I know nobody going, I also have no idea of exactly what will happen and its very much out of my control. I hate being out of control and its scary not knowing anybody. I am hoping that in the morning of the trip I will be able to cope and not be too ill!! But I have to believe that I will enjoy myself and have a great experience by the end of the week!!!

I am also testing my anxiety by taking part in a local production of Sister Act The Musical which will be in November. The rehearsals have begun and I very annoyed with my lack of mobility at the moment. I feel I wont be able to take part in any dancing, as my leg at the moment can’t even cope with me standing for very long. I am determined to be a part of this show and I just hope I will be able to sing to the best of my ability. The first rehearsal I went to, I felt very anxious going in, I was incredibly nervous and on edge. When I went in, I took a seat but felt very introverted. I was quiet and probably unapproachable. I’d made the decision to go without any walking aids and with my wig on. This was so that I didn’t feel like people would judge me and I would be treated as any other person. I thought this would help with my confidence in talking to people, this however wasn’t the case and I felt horrendously shy.  The second rehearsal I decided to go with one of my turbans on instead of my wig. This makes it very clear to people, pointing me out as having probable cancer. I was surprised at how this broke barriers and I ended up talking to more people, more easily. I also felt more comfortable as I felt I had nothing to hide, everything was on the table.

Last week I booked for myself and my sister to go the Theatre to see Sister Act as a treat (and research for my own benefit). It happened also to be at the theatre where I used to work so I decided to go and visit my friends backstage. This was a little scary also as I’ve not been there for over a year now and I was concerned people would have forgotten about me. This was not the case and it made me more determined to get back to work as soon as I am able. I just hope my leg will improve as soon as possible to enable me to do my job!!!

My last message to myself is PUSH YOURSELF!! I shall leave you with some pictures of my trip to the theatre and how I enjoyed watching from a BOX! Yeah!!!!

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1st Cancerversary & Keeping Busy!!

Warning: This post is just a way for me to write another list, apologies!

Tomorrow is exactly 1 year since I received the news that I had in fact got Cancer and began my long, continuing journey for recovery. I see this as a positive thing as looking back I have managed to do a lot with the year despite treatment.

I began with major surgery on my leg, learning to cope with being bed bound and then in a wheelchair, learning to walk again, radiotherapy for 6 weeks and 6 sessions of chemotherapy, yet I have managed to do some fun and memorable things. For example, I took a holiday to the Cumbrian Coast, lots and lots of afternoon teas, trips to London to see shows, a Spa Break with TCT, I got a Puppy, Holiday with Uni friends etc. I also managed to organise my own Charity Event which was an Afternoon Tea where we raised nearly £3000 for Teenage Cancer Trust. I also plucked up courage to sing a solo or two in front of everyone. I joined the Teenage and Young Adult Band which has helped a lot with my confidence not just in performing but socially too. During Chemo I met some of the players of Manchester United Football Club and also performed a solo whilst hooked up to Chemo at the hospitals Christmas Service. I went to London to see the Royal Ballet at the Royal Opera House and had a champagne Afternoon Tea at the Savoy. I went to the Royal Albert Hall and met Sir Roger Daultry and Noel Gallagher followed by an amazing performance by The Who. And of course then I walked on a Runway underneath Concorde, modelling a gown in aid of Teenage Cancer Trust.

I am very proud of how much Ive managed to do whilst being on treatment and at times very ill. I feel very lucky to have had all these opportunities and it is thanks to Teenage Cancer Trust and the Team at my hospital.

Since finishing treatment I feel very stressed when I have nothing to do, or nothing written in my diary. I am trying my best to fill my time but I also feel that I am doing this to avoid thinking. Becoming wrapped up in my thoughts is dangerous as it brings out anxiety and a feeling of hopelessness. I feel I am trying to keep myself occupied so I don’t end up doing that to myself. It is now very difficult to find enough things to do…. I’ve done everything!!!! Its a very panicky feeling and its becoming annoying!! Hopefully I’ll chill out soon!!! As cheesy as it sounds its as though I’m wanting to make the most of my time and to do interesting things with my life. I am lacking purpose at the moment which I used to get with my busy and intense job. I am aiming to return as soon as I can, hopefully by January 2018!!! LETS DO THIS!!!

(P.S. Nearly 8 weeks on & I now have eyebrows (kind of) and fuzz on my head!  Hurray!)

Coming to the end of Chemotherapy….

It has taken me quite some time to work up to writing another blog post, apologies. However, I’ve been finding this limbo land I have been thrown into quite difficult to deal with.

I finished my 6 sessions of chemotherapy on the 17th March. This I would have expected to feel celebratory however I have found myself feeling really sad and low. I managed to get through the worst of my symptoms which were a lot worse than had previously been despite a lower dose of chemo. Two weeks on I am left incredibly achy and sore all over, every muscle making me aware of the poisoning it has had to endure. Other than this and the mucositis clinging on, it is emotionally I am feeling not quite right. My anxiety has increased, especially when having to leave the house. I combat this by simply trying to force myself to do things, for example, I recently went on a trip with Teenage Cancer Trust to London to see The Who at the Royal Albert Hall. I was incredibly anxious before this trip, so much so I ended up throwing up before I got on the train to Manchester. However, I had a great time! I also experienced things I’d never dream I would such as meeting Noel Gallagher and Roger Daultry, touring the Royal Albert Hall, going on stage in front of thousands of people during the concert. This is what I need to keep reminding myself!! It all worked out in the end! The following day I also took part in a Fashion Show at Manchester Airport underneath Concorde which was an amazing experience. I walked, unaided, down a catwalk in front of hundreds of people and did so in heels despite being in pain.

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I find that it is when I am at home and without much to do that I find myself feeling more depressed and just generally down. I am without motivation to do anything which is not like me! I have found, throughout treatment, that I am a person who cannot just ‘chill’ and like to be constantly busy or have a purpose. I am therefore going to attempt to do at least one small task each day to fill at least an hour of my time with something purposeful. PLAN!!!

I have also felt that in the last couple of months I have not seen many of my friends, through no fault of their own, just simply because I have been constantly unwell. However, this has made me feel quite lonely and disconnected. I also feel like I have lost confidence. My plan to combat this will be to try and plan little trips to see friends and meet up with people for meals or shopping or something. My next ‘thing’ will be to attend one of my best friends birthdays which will involve me getting trains and staying over night. I am hoping that in a couple of weeks time I will be in a better place mentally to deal with what used to be such a simple task.

LETS DO THIS !!!!! 🙂