Meet Rosie – social work student and latest member of the Shine team!

Rosie is a university student studying social work in Bournemouth. We’re extremely lucky to have her on placement with us until January 2019. Below Rosie tells us a bit about herself, how she found out about Shine, and what social work can mean to those living with cancer.


Hi everyone, I’m Rosie! I’m 33, and in June 2016 I was diagnosed with breast cancer for which I now receive ongoing maintenance treatment because they think it has spread to my spine. At the time of writing though, I currently have no evidence of disease!

social work and cancer

Rosie

When I was diagnosed, I had just finished my first year at Bournemouth University studying social work. I took two years out and had pretty much written myself off, let alone the thought of getting back to uni! Fast forward to 29 June of this year and it was the first day of my second year of university, and I was on placement with Shine!

I’m very lucky that my uni let me start placement early, do it part time, (it will take me into the beginning of January) and choose where I went. I’m equally lucky that Shine are so flexible with when and where I complete my 70-day placement so that I can fit it around my treatment, appointments, and fatigue. As I write now, with my feet up on my sofa, cat and chocolate to hand, I really couldn’t ask for more!

Before my diagnosis it would not have occurred to me that, once I had qualified as a social worker, I would like to work with young adults who have had a cancer diagnosis. In fact, the thought of it would probably have terrified me: what if I said the wrong thing? And surely it would all just be really depressing, right? Wrong!

As soon as I was diagnosed, I found Shine through a good friend of mine who was already part of the ‘cancer crew’. The support that I felt was unbelievable. Just knowing

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Social work isn’t about being a child catcher!

that there were other people out there in my age group who get what it’s all about is all that I needed. I was sold! It’s the informal peer support aspect that, for me, is the best part. We meet up where people our age want to meet up, and we do what people our age want to do. We talk about cancer if we want to, but it’s not forced and awkward and, most of all, it’s actually fun and a light relief from the usual drudgery that is living with cancer.

I had gone into my degree thinking that, once qualified, I would work with children and young people because that is where the majority of my work experience had been based. However, now I have a new group of fabulously ‘Shiny’ people to be passionate about. I believe that my personal experiences can have a positive impact on others in similar situations. Just before starting placement I was really excited to become a joint Network Leader for Dorset. I love it and I will continue to do it long after placement has finished!

Social work comes with a lot of preconceived ideas, stigmas, and a veil of mystery that the tabloid press does nothing to dispel. With their constant scare-mongering they would have you believe that we are all some kind of crazed child-catchers!

So what exactly IS social work – and why is it relevant to you?

Social work is a lot of things but this statement sums it up quite nicely.SW

As we all know, life can be turned upside down in an instant, and when that happens we all need someone to reach out to, whether that’s for practical or emotional support. I am really lucky to have a fantastic specialist social worker based in my hospital oncology unit, but sadly these are very few and far between. His role is funded by a charity and he has helped me with things like filling out benefits forms and making sure that I have an up-to-date seatbelt exemption (I need this because of the placement of my portacath).

Shine fills that much-needed gap for young adults with cancer who are looking for support.

While I’m on placement with Shine, I will continue to jointly run the local Dorset Network which includes organising meet-ups and events, welcoming new members, supporting alumni to move on as they approach 50, and developing a local ‘Plus One’ Network. But I will also be working on a number of other projects, including developing a directory of useful services for Shine members, collecting evidence of the current needs of young adults with cancer, and working on a diversity project to ensure that Shine is reaching all communities affected by cancer at a young age. In addition, I will be at the Manchester Great Escape as a peer supporter, and supporting the delivery of a number of workshops. On my first day of placement I headed to London for a training day for Shine’s Network Leaders. I was very pleased to find out that the core skills and values necessary for the role are identical to those required of a social worker: to be passionate about helping others, supportive, empowering, friendly, empathetic, caring, respectful, and to demonstrate integrity and trustworthiness.

I’m really excited about my placement because I feel like it’s important work that will make a genuine difference. Personally, since I’ve started on placement I feel so much more confident in my ability to function as a (relatively!) normal human being again. Being on placement in a cancer support charity has also, perversely, taken the focus off my own cancer and also given me a new-found purpose in life again. One of the only possible challenges that I predict is keeping on the right side of that fine boundary line, but for the next few months I’ll be making sure that I step back and look at all situations with my ‘Student Social Worker’ hat on.

I would love to hear from you! Maybe you’ve got feedback from a personal experience of interacting with a social worker or trying to navigate the benefits system? Maybe Shine has been an invaluable support and you’d be lost without them? Perhaps you can relate to my feelings of returning to study or work after your diagnosis? Whatever it is, please do drop me a line!

You can get in touch with Rosie by emailing her at hi@shinecancersupport.org.

 

 

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Living with incurable cancer: Talking about the future when I won’t be here for it

In this post, Shine community member Christine reflects on discussing future plans while living with incurable bowel cancer.


I have incurable cancer. It seems to create a lot of awkwardness.

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Christine with her parents

 

But, life goes on. I know that when I die the world will go on without me. That’s the same for each of us, though hopefully for most people that time is a long way off.

In the grand scheme of things we are all just tiny specks who exist for such a tiny length of time. Most of us will have only a very limited impact on the wider world. If we are lucky we will have some small influence on our little circles. But really, for the vast majority, the future will be no different without me in it.

I have accepted my fate, as best I can. What I find difficult is that other people make all sorts of assumptions about how I might feel, and it ends up limiting conversation.

Sometimes when a group discussion naturally gets on to future plans, people start to look at me uncomfortably. They might even try to change the subject. It is really not necessary. I don’t mind at all.

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A photo from Christine’s recent holiday

I am not worrying about pensions, or mortgages, or planning a wedding. It doesn’t mean I don’t understand the importance of those things to other people, and I don’t mind discussing them, though obviously I might not have much to contribute. (Except on weddings – I have a lot of strong opinions there!)

Of course I am sad that I won’t have the future I thought I might. And I am sad for all the things I will miss. But that sadness is far outweighed by the joy of knowing that those things will happen. My loved ones will carry on living without me. They will be happy again. I am not suggesting it will be easy – far from it.

I don’t believe in a heaven, or that I will be watching over them. When I am gone, that’s it. Whatever made me me will cease to exist, and my body will return to the earth. I will live on in the memories of those who knew me, and I hope that they will continue to feel my love even when I am no longer here. Somehow I will always be a part of their lives.

Sometimes I forget that my days are numbered, and I have little daydreams about my future, the same as anyone else. To be honest even without the whole incurable cancer thing I doubt many of them would come to fruition. Few of us live the life we planned, which is often no bad thing.

I don’t mind talking about the future, either generally or people’s individual hopes and dreams. I don’t begrudge anyone their good health or their future. I don’t wish that everyone else was dying too, just to keep me company. So please don’t leave me out of your conversations or feel that you can’t tell me things.

I still want to be a part of your life while I can. And if that means planning for your future then I am more than happy to join in.

Anyone who knows me well will know that I am quite organised. I like my lists and plans. I’ve had to let go of a lot of that because cancer is so unpredictable. But now I have a whole new set of plans to make – for my funeral, my end of life care, my will. It could be a bit depressing, but actually I get quite a lot of comfort from it.

What I am trying to let go of is my desire to continue to control the future when I am no longer here. I worry about how my family will cope. At first I came up with all sorts of ideas of how I could guide them through. But the reality is that I just can’t. I have to accept that once I am gone, they will need to learn to live in their own way. I don’t get to be involved in that. If they decide to abandon the monthly smoke alarm tests and the house subsequently burns down then it will not be my responsibility.

I thought about leaving cards for all the milestones I will miss. But I don’t even know what those milestones will be. And when would I stop? It seems a bit selfish, to inflict myself on them even when I am dead. I don’t want to gatecrash, or to make them sad on what should be happy occasions. And really it’s only to satisfy my own ego. I am dispensable. Everyone will be just fine without me.

Life isn’t just about the big milestones anyway. It’s in the boring minutiae of the everyday. When I imagine the future I would have liked, it’s those little moments that I will miss. Not when we are all dressed up to go somewhere fancy or putting on our biggest smiles for a photo, but laughing because otherwise you’d cry, or finding something to smile about when you’ve had a really hard day. And actually I think, much as I’d love to be there to celebrate all the wonderful things that are to come, it’s the hard times that I am sadder about. It pains me to imagine my loved ones struggling and not being there to help them.

Of course, there’s not really anything I can do about it. I try to give everyone as much love as I can right now while I am still here, and that will have to be enough.

If you’d like to connect with other young adults living with cancer, please request to join our private Facebook group or follow us on Twitter (@shinecancersupp) or Instagram (@shinecancersupport).