Adoption after cancer

In this guest blog post, Emma Owen from PACT discusses adoption after cancer and finds out the answers to some of the Shine Cancer Support community’s burning questions.


As a charity that finds adoptive parents for children in care, we get all sorts of questions from people who want to find out more about whether adoption is right for them. We get asked frequently:  “Do I have to be married or in a relationship, or can I adopt on my own?”, “Do I need to own by own home?” or “Can I adopt if I’m gay?”. 

The answers to these question are straightforward – Yes you can adopt on your own, no you don’t have to own your own home, and yes, you can adopt if you are gay!

But when it comes to health there is no one answer for all. Every single case is individual and different to the next person. We frequently get asked whether someone who has had cancer can adopt. The short answer is – possibly.

The first thing to remember is that having had a cancer diagnosis and treatment does not automatically prevent anyone from being accepted, assessed and approved as an adoptive parent.

In fact, tenacity, resilience and positivity that people have demonstrated while undergoing treatment for cancer are great qualities for adopters. But this needs to be balanced with ensuring that an adopter has the energy and strength to parent their child into adulthood and beyond.

As well as thinking of your own hopes and dreams for a family, you must also think of the needs of the child. An adopted child will already have suffered loss, and possibly trauma, and any adoptive parent must be emotionally, as well as medically, fit to care for a child who has had a difficult start in life.

As part of the adoption process you will need to have an adoption health assessment with your GP and this will need to be seen by PACT’s medical adviser. Your treating consultant will be asked for a reference and their view will be influential in the decision as to whether you can proceed with adoption.

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PACT’s medical advisor Dr Efun Johnson said: “The assessment process seeks to explore individual strengths to parent, using available health information on health status and likely risks that may impact on meeting the physical, emotional and developmental needs of a child.” 

I asked Dr Efun to answer some of the most common adoption questions we get asked by people who have suffered from cancer.

Q: Do you have to wait a certain length of time after you finish treatment before adoption agencies will accept you? 

Dr Efun: “Every cancer differs and detection could be at differing stages. After treatment and remission or cure we would ask that you give yourself a year or two to settle before you apply to adopt. In some cases you may need to wait up to five years. 

Q: What if you have disabilities after cancer treatment and your partner had cancer too or has health issues – is adoption still an option?

Dr Efun: “It is the capacity and ability to look after and parent a child that is looked at as well as both yours and your partner’s health. Yes adoption is still an option. 

Q: What if you have cancer long term but it’s not currently life-threatening, can you adopt then?

Dr Efun: “It depends on the individual situation.”  

We also have some more general questions, which I put to PACT’s Adoption Team Manager Mandy Davies.

Q: If cancer leaves you unable to adopt, would it be possible for your partner to adopt a child in their name only? Then share parenting commitments? 

Mandy: “While a couple are living together there would need to be a joint assessment.  If we were not able to proceed due to cancer it is likely to be because of a limited life expectancy.  If an adoptive parent were to die, this loss would have a huge impact on an adopted child who will have already lost their birth parents and probably foster carers.”  

Q: What are the first steps if I want to find out about adopting?

Mandy: “Do your research into what’s involved in the process, the children waiting and all the things any adoptive parent needs to consider. We have a Guide to Adoption on the PACT website which is a great place to start. Then I’d suggest coming along to an information event. At PACT information events we have talk from a social worker about the process and an adopter to tell their story and you have the opportunity to ask any questions.”

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At PACT, we have many survivors of cancer who have successfully been approved as adopters and gone on to have a family through adoption.

Marcia and her husband adopted their two daughters after she was diagnosed with breast cancer, and successfully treated with an aggressive course of chemotherapy and a mastectomy. 

She said: “We were devastated, but the prognosis was positive. The oncology and fertility consultants worked with us to ensure I could have some eggs removed, and we had our embryos frozen. Post chemotherapy, we had to wait two years until we could have the embryos implanted. We had two unsuccessful attempts of IVF. 

For the next six months we took a long needed holiday and took the opportunity to consider our future as a family and we agreed to continue to explore the option of adoption.”

Marcia and her husband were approved through PACT and became parents to two sisters, aged one and two at the time. 

“We were really lucky, the girls took to us and their new home immediately. All the preparation work and transition went really well and they could just get on with being children.”

Marcia is a wonderful example of someone who has created her family through adoption after cancer. And in a society where there are three times as many children waiting than there are approved parents we do need more people to consider adoption. So don’t let cancer be the reason you don’t think about it. Every single application to adopt will need to be considered on an individual basis so do get in touch if you’d like to know more.

About PACT

Parents And Children Together (PACT) is an independent adoption charity and family support provider which last year placed 93 children with 64 PACT families through its adoption services. It is rated outstanding by Ofsted and provides award-winning adoption support to its families for life.

PACT is one of 34 voluntary adoption agencies in the UK which find, assess, approve and support adoptive parents. VAAs work in partnership with local authorities to find homes for children in care who are unable to stay with their birth families. To find out more about adoption visit www.pactcharity.org or to find a VAA local to you visit www.cvaa.org.uk

Emma Owen

Emma Owen

Emma Owen is PACT’s Head of Marketing and Communications.

I’ve got cancer – where’s my casserole?

In this post, blog editor Caroline writes about the expectations we can have about friends and family when we go through cancer treatment, and what we can do when the reality isn’t quite what we’d hoped.


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I’m still waiting…

I thought I knew what cancer looked like, long before I received my diagnosis. Cancer is everywhere. Like most of us, I’d seen the films, read the books, and even written my own cancer-themed fiction as a particularly morose young teen (!). Cancer meant harsh treatments, hair loss, and silk scarves. Breaking Bad aside, most fictional representations of cancer seem to rely on a few key tropes: cancer patient looks pale, languishes in bed, and is called upon by kind-hearted family and friends who bring endless casseroles and work hard on fulfilling the all-important bucket list. And if you’re a really lucky cancer patient, you might also get a handsome model to hold your hand through chemotherapy – just like Samantha in Sex and the City.

I’ve been living with cancer – now incurable – for just over two years, and it still surprises me to write that I haven’t ticked many of these ‘TV cancer’ boxes. I’ve had a few operations, but I’ve been hospitalised just once. I haven’t had chemotherapy (instead, I had immunotherapy) and I still have a full head of hair. My skin glows an acceptable amount (which is not something I find myself saying very often). Friends have gathered at my bedside – once, for a post-op takeaway – but I’ve never had any offers of help to fulfil my bucket list. And I still haven’t received a casserole!

The ubiquitous ‘cancer casserole’ was one of the topics that came up in the Relationships workshop at this year’s Shine Connect. While many conference attendees spoke about the wonderful support they’d received from friends and family, there were also plenty of young people with cancer who felt let down by the reactions they’d seen upon being diagnosed. Cancer rarely looks the way it does on TV, which can confuse us and the ones we love. So when we really want a casserole (or a bucket list safari adventure) and it isn’t coming our way, what can we do?

Don’t take it personally

If you are abandoned by friends or family in your hour of need, it will hurt. I’m sorry. A cancer diagnosis at any stage is a life-or-death moment – and as anyone living with cancer will tell you, its effects last a lifetime. It’s incredibly hard to cope when close friends decide that this is the time to leave you to your own devices, and even more difficult when family members also choose to keep their distance. Isn’t your family supposed to show up for you, no matter what?

Try not to take others’ behaviour personally. We all tense up when we hear the word ‘cancer’ – and the diagnosis you’ve received will have made an impact on everyone in your life. Some friends may be too scared to confront the fact that someone they love has a life-threatening illness, while others might find themselves reflecting on their own mortality for the first time. Cancer seems like an old person’s disease (how many smokers do you know who say ‘yeah, I’ll probably get lung cancer when I’m older, but I don’t care’?), so getting a diagnosis in your twenties, thirties, or forties is particularly shocking. Some people run towards danger, while others run for the hills.

Cancer doesn’t necessarily bring people together the way it does in films. For each person who decides to rekindle a childhood friendship and drive across the country to take you to chemotherapy, there will be another who crosses the street to avoid bumping into you outside Costa. My own experiences of friends, family, and cancer taught me that if I had a strained or distant relationship with someone before my illness, my life-or-death situation wasn’t going to be the glue that mended us – however much I might have wanted it to be.

Lower your expectations

It can be difficult to lower your expectations when it comes to friends and family, particularly when social media is awash with other people’s stories of being supported through a cancer diagnosis – or you turn up to treatment to find that you’re the only one on the ward who doesn’t need a ‘guest chair’. So your living room isn’t awash with flowers and cards? While many people may be worrying about you, it might not occur to them to communicate their thoughts through gifts or surprises. But is there someone who remembers to text you on treatment day, or asks follow-up questions when you casually mention that you can’t meet them for lunch because you have a medical appointment that day? They might seem small, but those interactions can be just as meaningful as a box of chocolates or a stack of magazines – and they show that you haven’t been forgotten.

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Who needs brownies anyway…?

Ask – or encourage a friend to ask on your behalf

Sometimes friends and family don’t show up because they don’t know what to do. One of my friends told me that she didn’t get in touch while I was on long-term sick leave because it was an emotional time, and she thought that I would need space. In difficult situations, friends might treat us the way that they would want to be treated – and sometimes that approach can be different to what we expect. Personally, I didn’t need ‘space’ during immunotherapy. I’d have preferred it if people had come over for a chat, had dinner, or just hung out and watched TV. If you think that some of your friends have misjudged the way that you would like to be treated, ask them to do something different. It would be brilliant if we were all mind readers – and managing your friendships can be exhausting when you’re also managing your health, and worrying about the future – but asking for specific support may save you some heartache. If you don’t feel up to it, see if you can enlist a close friend or relative to quietly speak to others on your behalf.

Vent – to someone who gets it

Even the most understanding friends and members of your family will always be outsiders. They have to process their own feelings about your cancer diagnosis, and you can’t control that. They might be able to listen to how you feel, but if they haven’t been through cancer themselves then they may struggle to understand. And that’s where Shine comes in! We support thousands of people in their twenties, thirties, and forties who are living with and beyond cancer, and we provide a safe space to share stories and experience, as well as just have fun. Nobody will understand you as well as someone who has been through similar struggles, and made it out the other side.

If you’d like to chat to other young adults with cancer, why not join a Shine Network meet up, or our private Facebook group?

 

 

Pasta photo by sheri silver on Unsplash.

Flowers and brownies photo by Alisa Anton on Unsplash.

Writing through cancer: using writing as therapy (and a way to help others)

In this guest blog, Sara explains how writing helped her cope with cancer – and provides some tips on how you can get started writing too!


In three months, my book is being launched. In fact, people can actually pre-order it on Amazon now. I keep having a sneaky peak to check it’s still there. It is. There’s a picture of the cover (a photo of my feet in fluffy white socks) with my name in big capital letters. Which is really weird. Weird in so many ways. Had someone told me three years ago that I’d be a published author I would have laughed (very loudly) in their face. You see, I’m not what I would call a ‘writer’. I’m not one of those people who’s lived with an unwritten novel sitting inside them and I’ve never really had any aspirations to write poetry, short stories or even magazine articles. I’ve never studied creative writing and my day job only involves the legal kind of writing. But then something horrible happened to me. I had cancer. I started to write about it. And I haven’t really stopped.

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Guest writer Sara started writing after she was diagnosed with cancer.

I didn’t sit down one day and just write it all out. I jotted things down over the course of treatment: I described my emotions and how I was feeling; I recorded my side effects at length; I wrote long gratitude lists; I wrote about my anger, resentment and fear; I recorded the way in which treatment was given to me; I made lengthy, detailed to-do lists; I ranted about people who upset me with their thoughtlessness; I made lots of exciting life-after-cancer lists; I wrote about my hopes and dreams; and I recorded my day to day observations and general musings about life, death and everything in between. And all this writing made me feel so much better.

Then, towards the end of my treatment before I went back to work, I took all these notes and I set up a website, wrote a book and starting writing articles for cancer charities and organisations. I realised that whilst the writing was helping me, it might also help other people who were going through similar things.

If you’re going through cancer treatment, or you’ve finished treatment and you’re trying to put your life back together, why not consider writing about your experience?

  1. Remember that you are writing for whatever reason that you choose. So, if you don’t want anyone to read it then they don’t have to – you can keep your writing private. Nobody needs to ever read it; you could even ceremoniously destroy it in a defiant move against cancer.
  2. Everyone can write about their experience. You don’t need to be a writer. You just need a pen and paper, or a laptop, or a phone. You don’t need to be perfect at grammar and spelling. Just remember to write what is important to you, write from the heart and be honest.
  3. Use your writing to stay in control. Going to hospital for consultant appointments, oncologist appointments, scans, blood tests, clinical trial appointments, counsellor sessions, and everything else can be so overwhelming. Sometimes it can be helpful to take notes at these appointments and then rewrite the details into a dedicated notebook/computer folder so that everything flows from one appointment to the next and you can keep on top of what is going on, rather than feeling completely out of control.
  4. Try keeping a gratitude journal. Having cancer can feel so unfair and cause all sorts of negative emotions to build up inside you. Sometimes it might help to remember things for which you are grateful. And on the bad days, re-reading this ongoing list might help to lift you out of your slump.
  5. Don’t be afraid you write down your feelings and emotions, your fears and worries. If you write them out, then they’re out of your head and you can let them go. It might even help lift the weight of anxiety off your chest a little.
  6. What to write? If you like the idea of writing about your experience but you don’t know where to start, here are a few prompts to get you going:
  • How did you feel to be diagnosed with cancer at such a young age?
  • How did it feel to tell your parents, siblings, children that you had cancer?
  • How have friends treated you since you told them about your diagnosis?
  • If you’ve lost your hair, how did you feel about it?

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    Sara, during treatment.

  • What has having cancer made you realise, that perhaps you didn’t before?
  • Have any positive things come out of having cancer?
  • How have the side effects affected you?

7. Use your writing to express your feelings towards others. Anyone going through cancer knows that unfortunately not all your friends step up and rally around. This is incredibly hurtful and can knock your confidence to an even lower level. This is not what you need when you have bigger things to worry about. It can eat away at the back of your mind with thoughts like, “Why hasn’t she got in touch?” “Why am I not invited out with my friends anymore?” “What’s wrong with me?” It might help to write a letter to these friends telling them how you feel and why you’re upset with them. Don’t send the letter, just burn it or rip it to shreds and move on.

8. Don’t forget to write about the good as well as the bad. For example, it’s nice to write about all the lovely things that people do for you (like bringing you food or driving you to appointments) and it’s nice to read these back to remember how important you are to these people.

9. Consider whether you’d like to share your writing with others. Maybe you’d like to set up a blog (which is fairly straightforward using one of the DIY blog platforms like WordPress) or a Facebook page. With both these types of blogs you can share your writing with either just your friends and family, or open it up to anyone. If you don’t want to set up something yourself, get in touch with one of the cancer charities or cancer organisations about sharing your writing as a guest blog on their website (I’m always happy to post guest blogs about breast cancer for my website, tickingoffbreastcancer.com and, of course, you can always get in touch with Shine!).

10. Don’t be shy about sharing your writing with others. It can be a bit daunting to start with, but at the end of the day people going through cancer want to read about the experiences of others who’ve been through the same thing. They’re looking for reassurance, support, honesty and advice so if you can provide these, they’ll want to read what you write. And remember these words of encouragement from me:

You have something to say, so you should say it.

Even if it just helps one person, you are making a difference.

You have a voice, use it.

People will appreciate the advice of someone who has been through it.


Sara is the author of Ticking Off Breast Cancer, a book about juggling a busy life with treatment for primary breast cancer. This book follows the physical and emotional impact of breast cancer on Sara’s life, and provides practical help by way of checklists at the end of each chapter. The book is out 26 September 2019 but you can pre-order the book now from Hashtag Press, Amazon, Waterstones and Foyles. Sara is also the founder of www.tickingoffbreastcancer.com, a website dedicated to supporting those who don’t know which way to turn for help after receiving a breast cancer diagnosis; those who are overwhelmed by the breast cancer resources online and those just looking for a comfortable, safe, calm place to turn for help. Follow her on Facebook, Twitter and Instagram.

Living with incurable cancer: talking to my children

In this guest blog post, Shine community member Beth writes about her story of living with incurable bowel cancer, and shares her experiences of talking about her illness with her young children.


 

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Meet Beth

My name is Beth, and I was diagnosed with bowel cancer in 2016 at the age of 37. I was working as a Paralegal, and about to start the final year of my law degree. This diagnosis could not have come at a worse time, just when I was finally pursuing the career of my dreams and becoming a solicitor. However, it was not my career that came to mind, but my family: my husband and my babies.

In 2017 things went from bad to worse. I was told that the cancer had spread to my lungs and was now incurable. I was given six months to three years to live. My son Joseph was nine at the time, and my daughter Abigail was just seven. How was I going to tell them? What was I going to tell them? How much should I tell them? How much would they understand? How could I make sure I was always a part of their lives? What could I put in place for them emotionally for when I was gone?

I had a lot of questions – mostly about my kids, not medical questions for the doctors. Who to ask? I found charity leaflets about talking to children about cancer, but they were very generic; I felt that there was a lack of support for parents and children in this situation. I wanted to speak to child psychologists, parents who had been through this, adults who had lost a parent as a child – anyone who could give me insight into the best things to do for my children. in the end I found help, ideas and support from my followers on my Facebook page. I asked if anyone had lost a parent at a young age and if so, what had helped them. Then the ideas came flooding in.

When I was first told I had cancer, we told the kids that I had some bad cells and the doctors were going to take them out, meaning that I would be in hospital for a bit. After my initial operation, we explained that I would need to have some medicine to kill off any tiny bad cells that the doctors could not see and help prevent any more bad cells growing. We explained that the medicine might make me feel ill. The progression of my cancer meant that I needed to break the news that the bad cells were back, the doctors could not cure me and – the bit I still needed to get my head around – I was going to die (but we had no idea when).

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Beth and her family

I talked to Richard, my husband. We planned to sit the children down and talk as a family, but not about time frames. Unfortunately, we never did get to sit down and do this. Life has a funny way of taking these things out of your hands.

I did tell Joseph and Abigail, but it was one afternoon when I was snuggled up on the sofa watching TV with them. An advert about cancer came on and Joseph turned to me and said ‘you had cancer didn’t you, Mummy? But you don’t have it anymore.’ My heart sank. We had never used the ‘cancer’ word, but he knew. Yet that was not what got me. Yes, I was going to have to shatter their world, and it would have to be now because I could not lie to them. The conversation went something like this:

 

Me: Well, you know that medicine to try and stop it coming back?

J&A in unison: Yes, Mummy.

Me: It looks like the medicine didn’t work as well as we thought, and I do still have cancer.

A: But Mummy, cancer can kill people.

J: But the doctors will make Mummy better, Abi.

Me: Unfortunately, the doctors can’t cure me, but they are going to do whatever they can to keep me here with you for as long as possible.

A: Are you going to die, Mummy?

Me: We all die one day, but I will probably die sooner than we would like. You know that if there is anything you want to ask me, you can. We can talk about anything.

There were lots of tears and cuddles, but oddly no questions – well, not then. A few weeks later my daughter, who is very matter-of-fact, asked ‘Mummy, will you last until Christmas?’. I am still not sure if she was more concerned about her presents – the man in a red suit does not get all the credit in our house…!

Both children made us promise that we would tell them whenever we got any new information. Joseph wanted to know about scan results and treatments. They seemed reassured by being included in what was going on. Just over a year on, we still have no idea how long I have left, but we take each day as it comes, and do everything we can to make as many memories together as possible.

We talked about making memory boxes, something they would have to keep their memories of me and our lives together as fresh as possible. The children put things into their boxes that remind them of something we have done together. It could be a photo of us together, anything that means something to them. I hope these boxes will help them to connect to me through physical things they can hold, touch, see, and smell.

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Dreaming about holidays

I am also doing things that the children do not know about: for example, I have written their birthday cards all the way up to the age of 21. This was tough and I cried a lot, but it was important to me. I set up an email address for each of them and I send them emails. I include a summary of something we have done together, what I enjoyed most, and a picture or two. I bought some books that ask questions about my life, and about their lives. I am in the process of completing these books and trying to answer all the questions.

I plan on recording videos and writing letters for special occasions. My husband can give them if he feels appropriate. The most important thing, though, is to be there for them right now and make the most of the time we do have together.

I am currently on a holiday booking spree…

 

You can learn more about Beth and get in touch with her via her blog, Facebook page, or Instagram/Twitter: @bowelwarrior. 

If you would like more support about talking to children about cancer, you can…

 

Taking care: How and why ‘carers’ also need support

A few years ago, the partners of a couple of Shine members approached us about starting a ‘Plus Ones’ group. Having cancer is tough, they noted – but so is supporting someone with cancer. We started our Plus Ones group online and it’s continued to grow over the years. As we’ve worked more on supporting the supporters, we’ve also learned more about the issues that they can face.

In this blog, Dr. Jason Spendelow (one of Shine’s original Plus Ones) outlines some of the issues that ‘carers’ often face when supporting someone with a life-limiting illness. We know a lot of Plus Ones don’t consider themselves carers (78%, according to a recent survey that Shine carried out!) but we hope this gives you some insight into the support that someone looking after a young adult with cancer might need.


 

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Those who provide significant levels of care to another person are more than twice as likely to suffer from poor health than non-carers.

While carers do report many positive experiences, the physical and psychological wellbeing of this group is often compromised due to the stress associated with the support they provide. Those who provide significant levels of care to another person are more than twice as likely to suffer from poor health than non-carers (Carers UK, 2004). When asked directly, the vast majority (84%) of carers said that caring had a negative impact on their health (Carers UK 2013). Carer wellbeing, then, is a particularly important topic in cancer and other chronic illnesses. Carers provide a huge amount of support to loved ones affected by these illnesses. This means it is even more crucial that we take care of the carers.

Mental & Physical Health

We have an increasingly large pile of research available on carer wellbeing. From this, we know that psychological issues are among the most commonly reported difficulties amongst carers (Stenberg et al 2010). An important concept here is ‘carer burden’, which refers to negative emotional experiences that occur from providing care. The level of carer burden varies from person to person, with higher levels of burden being linked to female carers, living with the care receiver, spending large amounts of time caring, being socially isolated, under financial stress, and having no choice in becoming a carer (Adelman et al 2014).

Carers can experience a range of psychological difficulties. Some of the most common issues tend to be low mood and depressive symptoms, elevated levels of stress and anxiety, and lower quality of life (see for example, Braun et al 2007; Pinquart 2017, and Easter, Sharpe and Hunt 2015). Rates of depressive and/or anxiety disorders are higher amongst adult carers when compared to the general population. These figures do not mean that you are destined to develop such psychological issues, but carers are clearly more vulnerable. In late 2016, Shine carried out a survey of Plus Ones and found that 58% had experienced stress, and 77% had experienced anxiety.

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Shine’s first Plus One workshop covered how to cope with anxiety.

In addition to psychological difficulties, carers can experience decline in their overall physical health. Physical health problems vary and range from fatigue to insomnia, headache and gastrointestinal issues (Jassem et al 2015).

Positive Experiences

Despite the physical and psychological challenges discussed above, many carers can also identify positive aspects of their experience. Some of the reported positive experiences included being able to give back to someone, knowing the person is being well cared for, improved relationships, personal growth, and an enhanced sense of meaning or purpose (American Psychological Association 2018). Finding meaning and purpose is an experience reported across several groups of carers (Carers UK 2004). Being able to help is a source of satisfaction for many carers, while ‘giving back’ to someone and having an equal or reciprocal relationship are other positive outcomes (Spendelow, Adam and Fairhurst 2017; Buchanan et al 2009), Ribeiro and Paul 2008). The relevance to wellbeing is that experiencing positives from caring help people to cope better with the stress that comes their way.

Taking care of yourself

Your wellbeing is influenced by many factors. Believing that just one ‘thing’ is the cause of any experienced psychological difficulties is usually inaccurate and unhelpful. Attempts to improve your wellbeing, therefore, usually involves taking several factors into consideration. Look, I could bang on here about all the things you know you should be doing already: getting plenty of sleep, exercising, and eating vegetables. Yes, this is all true and fundamental to your health. But I won’t repeat the same advice given millions of times already.

Perhaps a more useful strategy is to ask ‘What barriers stop you from taking better care of yourself?’ and, more importantly, ‘What can you do about these barriers?’. Some barriers are physical: for instance, you don’t think you have time to look after yourself. Other barriers are psychological. For example, some carers feel that it is selfish to prioritise themselves over the loved one they support. Asking what barriers exist (and why) helps work out what might have gone wrong with previous failed attempts to take better care of yourself. These barriers need to be directly addressed, otherwise it doesn’t matter how many times you are told to go for a walk and eat some broccoli.

It may be that you need to discuss this issue with a sensible person that you trust in order to make progress with your wellbeing. Having said this, here are a few questions you can ponder to get you thinking more about barriers to better self-care:

  • What emotions might you experience if you put more time into self-care?
  • Why do you think you would experience those particular emotions?
  • What do these emotions say about your attitude to self-care?
  • What would have to change in your life to result in more time given to your wellbeing?
  • How might the wellbeing of the person you support be negatively affected if you spent more time looking after yourself?
  • What would be the worse thing someone could say about you as a carer? How does that influence your self-care?

 The Bottom Line

Carer wellbeing matters, both to the quality of life of the carer, and the wellbeing of the loved one that the carer supports. To cope with the huge challenges brought about by cancer, you need to be thinking of self-care strategies that are positive and sustainable over the long-term. If you fall over, both you and the person you care for will find things even tougher. Thinking about barriers to self-care can be a useful way to better understand your current approach to your health, and how you can improve it.

Jason is a clinical psychologist with a special interest working with people and their carers affected by chronic illness and disability. He also supported his wife through cancer. He runs his practice in Surrey. See more at www.jasonspendelow.com

To join our Shine Plus One Facebook group, click here. To join the mailing list for Shine Plus One events, please email plusone@shinecancersupport.org.

 

How I told my five-year old I had cancer…

In this post, Shine member Steph tells us how she talked to her son about her diagnosis. What are your experiences of talking to young children about cancer? Please share this post and add a comment if you like.


When I was diagnosed with cancer in July 2016, my first thoughts were ‘I just need to get through this for him’ – ‘him’ being my nearly five-year old, Theo. We’d arranged a fantastic party for his fifth birthday and all I was concerned about was being there for it.

As it happened, the first part of my treatment was booked in for a week after the party. This was such a relief. The sun shined brightly that day and it couldn’t have gone better.

I knew, though, that I had to tell him about my cancer because there were going to be things he’d see, and things that would come as a surprise to him. Perhaps everything he was used to might change. Who knew at this point?

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Steph and Theo

I read a book that was written to help you tell your children about a cancer diagnosis, and I was genuinely saddened by it. It talked about the family getting angry and the diagnosis not being the child’s fault, and about parents getting cross but telling the child not to blame themselves. Then there was a picture of utter chaos: dad was in the kitchen in his pyjamas, there was a knife in the fish tank, the dog was eating the kids’ cereal and the kitchen floor was flooded. It was absolute carnage – it simply looked to me like daddy wouldn’t be able to cope. This was not at all what I wanted Theo to see or understand. The book and the tale it told just really didn’t work for me.

A different approach

I wanted something that said, ‘no matter what happens, Mummy is doing her absolute best for you, and doing everything in her power to be OK’. So I decided to write a poem. I needed it to be personal to Theo to help him understand that the future might look different for a while, and that Mummy wasn’t going to be well.

Dear Theo,

Mummy has written this for you, it’s a rhyme, 

And wants to read it to you from time to time.

For now, mummy does feel a little sick,

But a cuddle from you would do the trick.

Sometimes mummy will stay in hospital for the night,

The nurses will take good care of her, she’ll be alright.

You know you take medicine from a spoon,

Mummy has medicine too which’ll make her better soon.

The doctors are doing all they can to make her well,

Why not even wish her a get well soon spell?

Mummy is trying her absolute best,

But sometimes she needs a little rest.

You are all she thinks about day and night,

And dreams about you and her flying your kite.

As always be the loving person you’ve always been,

You’re the bravest boy mummy has ever seen.

Theo’s reaction

The first time I read it to Theo, he smiled and said ‘wow, it rhymes!’. I knew, though, that he’d heard the underlying messages. I was lucky too that when Theo was with his dad, he’d read it to him as well. Theo heard the poem over and over again, and even asked for it sometimes. I think it prepared him for the next few months and taught him that there was likely to be a fair amount of change coming.

As changes were on the horizon, I told him when they were going to happen: a stay in hospital, surgery (and therefore he’d have to be extra careful and not jump on me) and losing my hair. Theo never really asked any questions and dealt with it all very matter-of-factly – a little like me, I think.

Theo really didn’t like my wig though and wanted me to just ‘be me’ and not hide behind it. My hair is growing back now, and the other day he asked if I could shave it again as that’s what he preferred! It struck me that no matter what, children love you unconditionally – and even if I’m feeling different or unusual, to him I’m normal and I’m his mummy.

I also visited Theo’s school as I didn’t know how he would be affected by my illness and if it might come out in class. The school were fantastic: they set up an Emotional Learning Support Assistant for Theo, with whom he had a chat with once a week. It seemed that no matter what was happening, I was still his mummy, and he simply told them what was going on at that point in time. It gave me a great peace of mind to know that the staff were looking out for him when I wasn’t able to do so.

Looking back

I find my poem hard to read now as it brings back so many difficult memories. At the time, my priority was to make sure that Theo would be okay, and that I got through everything as easily as I could for him.

I’m so glad that I didn’t go in all guns blazing with that book, and that I took some time to think about what was right for us.

If you like the poem or think it would work for you, too, then feel free to read it to your children.

If you’re affected by any of the issues that Steph has discussed, you can join our private Facebook group and find peer support.

If you’re free on 19th May, join us at Shine Connect 2018, our annual conference. We’re having a session specifically for parents going through cancer who want to support their children. More information at shineconnect.co.uk.

You can also look at the list of useful organisations on our website

How pets can help you cope with cancer

When the going gets ruff, the woofs get going: How pets help us to cope with cancer

Sarah Carlin (33) who has small bowel cancer and lives in Liverpool, explores how Shine members’ furry Florence Nightingales are helping them live better with cancer…


I’ve been dealing with cancer since 2013. It’s as about as much fun as it sounds.

During a particularly dark period recently, I realised that one of the few things capable of raising a genuine smile was my dog Elsie, a Cairns/Yorkie cross with about nine teeth and breath like the bottom of a fishing trawler.

My 50th attempt at taking a selfie with Elsie

Sarah and Elsie

I then remembered all the other times that pets had helped me through. Pre-diagnosis, when I would spend hours lying in bed, throwing up industrial amounts of green bile into a washing-up bowl, my mum’s cat Flo – who, it has to be said, would probably at that stage not have said hello to me in the street if she were human – would come to my bedroom and gently knead me with her little paws. When I was feeling better again, she’d get back to blanking me. During chemo, our family dog Bunk – a rescue Staffie cross who definitely missed his calling as a late 90s emo – would come up to my room and lay a heavy black paw on my stomach, as if to say “I understand”.

With a hunch that I wasn’t the only one being looked after by my pets in this way, I asked the Shine community about their own experiences with furry friends in Shine’s closed Facebook group. It quickly turned into a love-fest about all things on four legs, for the following reasons:

1. They’re a reason to get out of bed (and the house)

Alison's SuzyQ

SuzyQ

Owning a pet dog is like having a weird hybrid of a physical therapist, life coach and in-house dirty-protestor. Crippled by fatigue? So depressed you don’t want to get out of bed? Struggling after a big operation? They don’t want to hear it. They want you out of those PJs and taking them round the block, stat, or they won’t be responsible for the consequences. And they can’t promise that those consequences won’t be coming via their digestive system either. And even pets that don’t need to be walked – like cats and rabbits – need to be fed and watered.

 

The positive impact that this responsibility has can’t be

Fran's George

George

understated. One Shine member, Julie, remembered that her dog Izzy helped her recovery from an operation for bowel cancer by getting her active again just seven days after surgery. Fran, diagnosed with chronic myeloid leukaemia at 29, said her cat George was her “reason for getting out of bed every day, no matter how rubbish [she feels].” And Alison, who had treatment for breast cancer recalled that her cat SuzyQ gave her “a sense of purpose and unconditional companionship”.

2. You can share in their joy – without the complicated feelings

When you have cancer, especially as a younger person, you often feel disassociated from your peers. It’s great spending time with your friends, but sometimes it’s tough seeing the life you could have been living if the C-bomb hadn’t been dropped on you. You know, having babies, having hair, being able to get travel insurance without selling a kidney (which nobody would want to buy anyway, obvs) or just being able to plan something in three months’ time without factoring in worst-case-scenario scan results. Basically, whatever you’re doing, whoever you’re with, cancer is there in the background like a sinister ostinato, reminding you that life isn’t as you hoped it would be – something that can be really destructive to your relationships and your state of mind.

How pets can help you cope with cancer

Your interactions with pets will carry no such baggage, however. You can truly be in the moment and share in their enthusiasm for life, whether that’s chasing a ball, trying to swallow a piece of cake whole or their absolute joy when you walk through the door after-surely-abandoning-them-forever (a.k.a. going to the shops for half an hour). You can share in their perfectly mundane triumphs with no complicated feelings. Unless, say, you had a real love for Chappie dog food but ate too much after a chemotherapy session once and now you’ve gone right off it. Or you used to love chasing mice but your oncologist has told you to knock it on the head because it’s an infection risk.

3. They bring the lols

How pets can help you cope with cancer

Elsie makes me laugh every day, whether through her world-class meerkat impression, her iron will or the fact that whenever we walk past the British Legion, she always, inexplicably, tries to go in (FFS Elsie, you’re barred!). And I’m not alone. Lisa, who has bone cancer, said her little dog Coco “brings a smile to my face every day…brings happiness and makes every day worth living.” And Christine, who has bowel cancer, said that her bunnies, Marigold and Juniper, “always make me smile even if I’m feeling awful.”

Christine's Marigold & Coco

Marigold and Juniper

 

4. They really care

I was blown away by the number of people in our Facebook who shared stories of the TLC given to them by their pets. There were dogs trying to ease painful legs, horses sensing when their owner was having a bad day and amazingly, given the fact that they have reputation for being the haughtiest of the household pets, an awful lot of very caring cats who would be a real asset to the NHS.

Lyndsey, who has Hodgkin’s Lymphoma, remembered that her kitten, Stinky – who she adopted during treatment – would carefully settle into the crook of the arm that didn’t have a PICC line in it and purr her to sleep. Another Shiny, Jo, who has metastatic breast cancer said that her “Bichon baby” Pixie who “curls up with me in bed when I feel poorly and keeps the cuddles coming when I feel low” helps her cope with her situation.

Jo's Pixie

Pixie

5. Sometimes, it seems they can perform their very own PET scans (boom!)

One thing I wasn’t expecting when I put my post up was the number of people who had stories about their pet appearing to try to alert them to the fact they had cancer. Tracey remembered that her cat would always lie on the breast that had cancer pre-diagnosis. Anne’s dogs Buster and Lucky started to repeatedly snuggle into her left armpit, which prompted her to do a self-check and find a lump that was eventually diagnosed as aggressive triple negative breast cancer. And one of Danielle’s dogs kept digging on her leg so much that it prompted her to go to the doctor in case she had some sort of infection. It was actually a chondrosarcoma. That animals can sniff out cancer is actually a recognised phenomenon; some sharp-nosed pets are already being used to assess urine tests in the NHS. You can read more about the science behind it here.

We loved talking about our animals and I’m so glad that I – and so many other Shine members – have pets that are helping us through some very tough times. Here’s to a very furry Christmas and a yappy New Year!

PS We couldn’t fit all the pet photos that were submitted into this story. But they’re below if you want a quick look at the Shine Super Pets!