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Hospice Voices

Rebeccah's story

Rebeccah shares her experience of Hospice in the Weald care at the age of just 21

In September 2018 I was diagnosed with bowel cancer, and then I was told that it had spread, most significantly to my spine and my lymph nodes. Obviously at the age of 21 this is not what you expect to hear. It was a very big shock.

Sometimes, my symptoms can be very difficult to manage. On bad days I can be in a lot of pain, or vomiting persistently. On very bad days I have no choice but to go into hospital.  

I had my first visit from Alison while I was in hospital. Alison is my Clinical Nurse Specialist or CNS from the Hospice and she looks after me. She is part of the Hospice in the Home team and she visits me regularly at home, or sometimes in hospital.

Alison is amazing. She phones me on a regular basis in between her visits to check how I am, and she stays in contact with the hospital to make sure my pain relief and appointments are all organised. If I don’t see her I always hear from her over the phone, she checks up on me – what sort of day I’m having, whether I’m in too much pain. If I’m ever struggling, I know I can phone Alison or the Hospice, anytime, twenty four hours a day, seven days a week. She can change my pain relief depending on my symptoms and how I’m coping. It is a big help knowing that she’s on the end of the phone. She is my go to person.

 

 

I also have counselling at the Hospice and I know there are lots of other things I could access in Hospice Day Service too. Like the wellbeing therapies or the craft group – I’d like to access that on a Saturday when I can bring my family or friends.

I’ve also had contact with the fundraising team through my day out which was absolutely amazing. I don’t know how many times I could say thank you, it was so much more than I could have imagined.

The bucket list idea came from one of my friends. We were talking about the things she would like to do with me in the time I have left, and the idea came from that conversation. In my own time I jotted things down, as they came to me or as I got ideas from things I saw. There are silly things on there that I’ve never done. Some of them are really simple, like strawberry picking. Sometimes when you’re ill it’s the simple things that become the most important. There are things on the list that I am now too unwell to do, but I have good days and bad days, so they are still on the list. You have to have hope.

When Alison visited one day and said we’d like to try and help out with your bucket list, I didn’t know what to expect. We ticked off so many things in one go. The Hospice does so much to support me anyway, but this was something else entirely. The day was a dream come true, I know that sounds silly but it was.

The wedding dress idea was just part of my list. I know I won’t get married, or have children, or anything like that, so that’s why I wanted to try on the wedding dresses. It’s huge, knowing that I won’t do any of those things. It’s a lot to come to terms with.

I’ve never had my hair or makeup done professionally which is why that was on my list. For it all to come together on one day was so much more than I ever imagined.

And so the day out started off being about trying on wedding dresses, and having my hair and makeup done, and having some professional photos taken – I’ll go into it all in more detail because it was just fantastic. But actually, the day was really about me spending that time with mum. It was so good for us, to go out and do something nice together that isn’t a hospital trip. Most of our lives are hospital trips at the moment. The day really benefitted me and mum too. I could tell it really helped her and that helps me.

The day itself was amazing. The hotel was beautiful, we arrived in the morning and got shown into the suite – there was music playing in the bathroom which I’ve never even known before. I had my hair done and my makeup done which was just so nice. It made me look well. I got to pick which makeup style I liked out of a book – this was really helpful because I’ve never had anything like this before. They did mum’s hair and makeup too and it was so nice to see her being pampered. I had a good day, but she had a great day. My mum does a lot for me so that was a really big thing to see her having a treat.

I can’t think of a word to describe seeing myself in a wedding dress. It was everything I ever wanted but also to be honest it was surreal. It was such a nice experience and it was everything that I imagined and much more, but it was quite strange for it to actually come true – it really was a dream come true. Actually seeing myself in a dress and with a veil and everything, this was far more than what I imagined when I put it on my list.

The whole day was incredible. I couldn’t believe how different I looked after I’d had my hair and makeup done. I felt like a celebrity. It’s funny because someone said ‘oh you’ll go home and feel like a celebrity’ and it was so true. Because the whole day I had cameras and people around me, running around and doing things just for me. I’m not used to that, I don’t usually want attention all the time!

I did have to take a break in the middle of the day – I did manage to get out of the wedding dress first but I was sick. That’s the reality of my illness. I can be fine and the next minute I can be very unwell. Most days my medication works and it’s OK but I’d already been sick that morning so I knew I was on rocky ground. Once I’d had a break I could go back to trying on dresses. Everyone was very understanding – and even at that point, I didn’t feel like a patient.

Then to go down and have afternoon tea, just me and mum spending time together was really nice. We sat at a table under a tree with fairy lights on it and it was beautiful.

I couldn’t choose a favourite part of the day, each part meant something to me in its own way. The wedding dresses were on my list and were really important to me. Having my makeup done and having a photoshoot were both on my bucket list too. But my favourite part was sitting with mum having our makeup done in the morning. Seeing her being pampered was the best bit, because she does so much for me. I know it wasn’t me giving something back to her but seeing that was the best bit.

I said to mum at the end of the day, that the only time I felt ill was that half an hour break I had. Apart from that I didn’t feel ill, I didn’t feel like a patient. I had almost a whole day without thinking about being ill. To have a break from that is amazing. I felt like I used to be, like a normal person.

Mum was quite emotional seeing me in a wedding dress – it’s a massive thing, isn’t it? Wedding dresses are emotional. But I think it was nice for her to see me like that, being happy – she doesn’t get to see me like that very often any more.