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.

On being a Plus One

On 9 March we ran our second ever Shine Plus Ones workshop in London. We were joined by the partners, siblings and parents of young adults who are living with cancer. It was a great day that covered some tough subjects but we left feeling like we’d spent the day in the company of nice people (always a bonus if you’re going to spend your Saturday talking about cancer!). We are also really grateful that one of our Plus Ones, Chris, wrote a blog about the day so that we didn’t have to! Whether you’re a Plus One or not, take a read – it’s so important that, in addition to the person with cancer, that those around them get the right support too.


Hello, my name is Chris and I’m a Plus One.

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Chris and his fiancee, Kirsty

Three months ago my 32-year old fiancée was diagnosed with cancer. An adenocarcinoma of the submandibular gland – salivary gland cancer. She’s had surgery, healing, radiotherapy and now more healing, with plenty of tears, pain and mucus involved. Mentally she’s doing pretty bloody well considering. It’s a rollercoaster, as well you’ll likely know if you’re reading this.

For me, my fiancée’s diagnosis came off the back of my mum finding out that she had Non-Hodgkin’s Lymphoma 11 years ago, at the age of 51. A few months later, her 53-year old brother was diagnosed with bone cancer and died within months.

Anyway, what I’m getting at, is that it’s been tough, right? I was 22 when my mum was diagnosed and that was scary. Now I’m 33, and man, I’ve just got onto a much bigger rollercoaster.

Support

The last few months have been tough. There’s been support – some fantastic NHS surgeons, registrars, consultants, nurses, radiographers, receptionists, dietitians, speech therapists, and physios. And we’ve been lucky to have access to some brilliant Macmillan nurses, coordinators and counsellors. But the one thing we’ve been missing? Young people. Friends our age don’t always get what we’re going through, and frankly why should they?

It’s tough waiting for appointments in rooms of 30 people, all looking at least 30, 40, even 50 years older than us. Of course it’s sh*t for them too – no one should have to go through this, no matter what age. But there are differences when going through this at our age, and that’s where Shine comes in.

Shine Plus One

We found Shine after some helpful recommendations. We joined some online groups and pencilled in a few diary dates – for me, it was the Shine’s Plus One Workshop, for my fiancée, some meet-ups, and for both of us, Shine’s Connect conference in May.

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At the workshop with Salma, one of the Plus Ones volunteers

A few weeks passed and I was on a morning train up to London, with my fiancée resting at home with morphine, Breaking Bad and her sister to help out.

Arriving at Somerset House I was welcomed with loud hellos, broad smiles and hot tea – a pretty good start! There were a dozen or so of us there, mostly new to Plus Ones and understandably a little nervous.

We settle in with Emma (one of the co-founders, and an excellent facilitator of what is a tough crowd, let’s be honest!). She laid out the plan for the day and put us at ease. Emma gave a little context and talks about what the charity does. Short answer: some bloody great work (though you can find out more details here). One thing that’s evident is the many friendships formed through Shine’s activities. It becomes clear that these friendships are genuine and numerous the more the day goes on, with references to funny stories of people in the room or those they support, and photos from events full of hugs and smiles.

Morning half

An icebreaker is there to break any tension and put people at ease, and without giving anything away, Emma did a great job. We were introduced to each other, to our situations and to what we were looking to get from the day. There were some tears, naturally (myself included), but there were plenty of laughs there too.

The conversation turned to talking about support from friends and family, and how so many people get it so wrong or do so little. There were lovely stories as well though – people happily being pointed in the direction of a cooker, cleaning products or a lawn mower. We ended feeling significantly better equipped to request help from those who offer it.

We had a great first few discussions but stomachs were rumbling, so we went off to lunch. There was mingling and conversation over a generous amount of sandwiches, salads and snacks (the remainder of which is later donated to two nearby homeless gentlemen). We referenced the great experiences of the NHS, and the not so great ones. And we all agreed that if you want anything done then quiet compliance just isn’t going to cut it!

Afternoon half

Coming back from lunch I paused to consider how well it’s going – I already felt more supported, more understood, less alone.

Kathy (a kind counsellor who works with families and patients in hospitals) facilitated a discussion around themes of loss. We broke off into groups and the expected came up – certainty, spontaneity, plans, time, but also some of those things that feel unique to those of our age that are facing this – loss of future family and career.

The topics were fed back to the group and then we discussed coping techniques, and even some of the gains you can get through this process – strength in your relationships and worrying less about the little things, nicely named by one of the participants as ‘give-a-f**k-ability’!

We then moved to talking about coping with worry. We talked about how you can feel knackered from being constantly tense, and waiting for more bad news. We talked about techniques to help with worry – writing worries down, drilling in and fully understanding them, or even dedicating some worry time in the day, leaving you free elsewhere.

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Ways that the Shine Plus Ones cope with worry and stress

As it was nearing the end of the workshop now, Emma slowed things down a little and gave us some time for ourselves with a relaxing eight minute mindfulness exercise. We slowly came around and drifted over to the bar, conveniently located in the room across from us.

Pub half (yes that’s three halves!)

The chats continued and moved seamlessly between how we’re coping and the everyday. We learned a little more about each other – walks were organised and details exchanged. We were just another group of people chatting in the pub, not defined by what we’re going through. Not defined by cancer.

And process!

I reflected on the day during my journey back to down to Brighton. I’m amazed at how much impact it had, how quickly I felt connected with the group, how much we laughed, how much we understood each other, how similar our experiences have been.

It wasn’t forced, it wasn’t awkward, it wasn’t a barrage of sadness. It felt normal, useful, fantastic.

I was left thinking “how can I help”? Help fundraise for a excellent charity, help others access what I got, help others understand the benefits. I’m starting with this blog.

If you’d like to get in touch with other Plus Ones, you can request to join our Shine Plus Ones Facebook group (make sure to answer the questions!). You can also drop Salma (a Plus One herself) a line at plusone@shinecancersupport.org to find out about meet ups and events. 

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.

 

Lost and found: Friendship after cancer

Life isn’t easy if you’re a young adult with cancer.  So many things – work, family, energy levels and that sense of invincibility – change all at once. One thing that most of us would like to think is that our friends (especially the close ones) will stand by and step up when they’re needed.

But what if you’ve got cancer and a friend ghosts you? In our latest blog, one of our Shine members, Catherine, shares a letter she wrote to a someone who was a close friend before cancer, but who disappeared once her diagnosis was confirmed. Take a read, share, and do let us know what you think.


Dear person who was my friend before cancer,

We were so close. Together we drank tea and wine, exercised, and chewed the cud over life, the universe and everything. We knew each other’s secrets. We cried together. So naturally you were one of the first people I told about my diagnosis seven months ago.

Since then, you’ve pretty much disappeared. Daily messaging has morphed silently into monthly texts, and the message is always prefaced with “I’m sorry I haven’t been in touch, I’ve been so busy….”. You might ask how I am, you might not. Occasionally you’ve suggested you might have time next month – but you never follow up and actually book something in. On the few occasions I’ve asked directly for help, you’ve been too busy.

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Catherine with her two children

You once said to me “I know I haven’t been around much, but this is a long road, and when your help has tailed off, I’ll be there”. For months I believed this. I imagined you were waiting until you had time to do something ‘big’, something equal to the size of the heap of shite I am going through at the moment. I know you’re a perfectionist and I thought maybe you were just holding on until you found the time to deliver the perfect care package. But here I am, almost at the end of chemo, and I’m still waiting.

Other people have stepped up incredibly. People I hardly know have brought us food, taken the kids out, sent messages, diarised my chemo dates so they always remember to send a note. These are people with jobs and/or one, two or three kids, they are chief executives, teachers, full-time mums, opera singers…. busy people…. but somehow they have found time. My overwhelming feeling is one of gratitude and humility. But still, there’s you.

Actually, I don’t need you to have done any specific thing. I’ve had so much support it’s been amazing ,and most gaps have been filled. During the low moments of chemo, when I’ve thought about telling you how I feel, I imagine you asking what you should have done, and the things that pop into my mind sound so petty – why didn’t you just pop round for a cup of tea? Ask me if I needed anything when you went shopping? Waited for me on the school run so we could walk together? But it isn’t the absence of any of these things in particular. It’s the absence of all of them. It’s that I thought that you cared, that you would be there, that you had my back, and it makes me so sad that you don’t.

I’ve tried so hard to understand why; many people have suggested that perhaps my diagnosis is just too scary for you to deal with. But I know you and you don’t shy away from tough situations; if anything you seek them out. Now I’ve given up trying to work it out. It doesn’t matter. I won’t be able to trust you again, and I don’t blame cancer for that. This dumb disease may have created the situation but you chose how to respond to it. You chose to let your addiction to being busy dictate your priorities and to leave me at the bottom of the list when I needed you most. These days I struggle to even read your Facebook updates – it’s an important part of your life and you use it a lot – because it feels like out of the half hour you choose to spend on there each day, you could have taken 30 seconds out to drop me a text.

Other people, those who have rallied round, will be new friends and I rejoice in their love and support. But I’m still sad and angry that you chose to leave me. I hope if I’ve learned one thing from having cancer, it will be how not to make the same mistake.

Catherine

Catherine says she “rants a lot on Facebook to my poor captive audience but this is my first blog!” (we thank her for sharing it!).  Catherine is a secondary school teacher who was diagnosed with stage 3 bowel cancer. She has two children. 

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? For more info on Shine, visit our website

Life, but not as you knew it: Being a “Plus One”

Most of the blogs we feature are written by young adults who are living with cancer – but who cares for those who care for us? And what does it feel like? In our latest blog, Caroline writes about coping with her husband’s diagnosis and the ways she found to look after herself when everyone was relying on her. Shine has a small but growing “Plus Ones’ network. If you’re a partner, friend, parent or sibling of a young adult with cancer, why not join our growing Shine Plus Ones network? We run it via Facebook – just click on the link and request to join.

As always, we’d love to know what you think about this blog – and please share it with anyone you know who might be interested!


Cancer barged into our lives uninvited, ruthless and arrogant, and rapidly took the reins. Even before my husband was diagnosed, we knew something wasn’t right and our lives had already changed significantly – mostly in terms of anxiety. I would lay awake in the still of the night, hugging my nursing daughter close, terrified that I might soon be a single mum. Our life full of promise – in a new home, a new job, new friends and a new baby – was stopped in its tracks. The foundations of my life were suddenly very unstable and a new role as “carer” had been thrust upon me.

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Blogger Caroline Puschendorf

Cancer became our dictator

From the day we received the diagnosis – germ cell carcinoma, intermediate stage – the loss of control of our daily lives seemed to escalate. My life was no longer about running the home, toddler groups, changing nappies and days out as a family. It became about appointments, test results, clinics and chemo. As much as I tried to keep things “normal” for the kids, the inability to plan was overwhelming. Even mundane decisions that I previously took for granted were no longer within my control. I didn’t know from one day to the next where our family would need to be or who would look after the kids and for how long. The unpredictability of my husband’s symptoms challenged family life even on the days that weren’t disrupted by unscheduled or delayed hospital appointments.

Then, just as we were settled into a rhythm with chemo and had a “treat to cure” plan, my husband got very ill with a virus while he was neutropenic. We were back on high alert. This was a stark reminder of the fragility of our situation, the uncertainty of the future and my perceived powerlessness.

I was exhausted, emotionally drained, and my own health was beginning to unravel

Caught up in the adrenalin and anxiety of my husband’s health crisis, I neglected my own health, both physical and emotional, by repeatedly prioritising my family. I slowly realised that my health was just as important – after all, everyone was relying on me, plus it was one thing I could control. I chose to invest in myself and to proactively nourish and nurture my family. I researched and developed a “no-fad” cancer-patient friendly eating plan and set about caring for my family’s health.

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Caroline’s husband, Rob, and one of their children

As a biologist I am well aware that our bodies need a plethora of resources to function at their best. We need nourishment, rest and movement in unique and varying amounts, especially in sickness. Only when balance is achieved do we build the reserves we need to invest into others and/or support our body in recovering from illness.

Having been a carer with two young kids, I know how important my health is, but also how easy it is to put it at the bottom of the list, but once I adopted some simple strategies, my emotional and physical health – and that of my family -massively improved.

Staying in the moment

  1. Being still for 5 minutes each day. Simply breathe and be there. Accept all thoughts and feelings that come, embrace and experience them,–especially the hard, gut-wrenching ones, then release them. This is difficult, as we get so used to suppressing emotions and putting on a brave face, but this strategy stopped me misdirecting my anger, anxiety and frustration at unsuspecting and innocent parties. For example, I realised that when my son’s behaviour was uncharacteristically awful, it was actually a reflection of my anxiety, fear or stress. Acknowledging these emotions allowed us to enjoy each other and have fun.
  2. Connecting with my husband. It’s easy to slip into the role of carer and loose touch with your old relationship. Make time to love each other in the way that you used to; a partner, sister, brother, son or daughter. Love without pity, sympathy, anger or fear. Just be there with love and laughter. Remind yourselves of what you mean to one another.
  3. Being grateful every day. I used to get annoyed when people said this to me, were they expecting me to be grateful we had cancer? That’s not what I am saying. I am saying find the positives, even the little ones, each day. Is the sun shining? Did you find a parking space? Did you get good results? Were you able to share time together? Getting into the habit of thinking through the positives, event while you brush your teeth, can be a powerful thing!

Taking control of my health

In addition to the above, I also made a few changes to my diet and routine:

  1. I took Epsom salt baths 1-2 times a week. This was amazing for alleviating tension and encouraging a peaceful sleep – something that was very elusive!
  2. I cut back on caffeine and sugar. These are easy to over-dose on, especially during times of stress, but they ended up making me feel irritable and tired, which was less than ideal. I also stayed away from hospital vending machines and made sure to take healthy snacks – like fruit and raw nuts – to our appointments.
  3. I implemented a “no-fad” cancer-patient friendly diet. Taking charge of family health through food was really empowering. I found a way of eating that suited the whole family and was based largely around a mineral broth.  It was easy to eat and highly nutritious food that worked well for a chemo-weary tummy!

After three rounds of BEP chemo and major abdominal surgery, my husband is now in remission. Life is slowly returning to a new kind of normal, and that’s ok.  Cancer slowed us down and changed us, but it hasn’t broken us. There’s a lot of life to live and we are bouncing back!

Caroline Puschendorf is a nutrition and health coach who blogs regularly here.  For some of her recipes, including her Super Mineral Broth, look here.

 

 

Introducing Shine Plus One!

Shine is working to create a community for young adults with cancer in the UK and with 11 networks across England and Wales, we are getting there!  But what about the people who support young adults with cancer? The family, friends and partners who support us, worry about us and take care of us?

As Shine has grown, we’ve met more and more partners, friends and family and learned about the struggles and worries that they face when helping us to cope with cancer.  And so (drumroll please!!!) we are excited to announce the creation of Shine Plus One!

Shine Plus One has a closed Facebook group where anyone who is supporting an adult in their 20s, 30s or 40s with cancer can go to chat, complain, offload or lend support – as it’s a closed group, no one will see what you write and your comments won’t appear publicly on your timeline.  We’ve also started a London Plus One network that will be meeting up regularly.

In this weeks’s blog, Salma and Peter (both of whom have partners who are living with cancer) share their stories and explain how Shine Plus Ones came about. Take a read, join the online group and, if you can, come out for a drink!  To get in touch with our London Plus One, you can email Salma and Peter at londonplus1@shinecancersupport.org.


Peter

Peter’s story:

Let me be frank: being the partner of someone with cancer is tough – but in my experience it’s never quite as simple as that. Clare and I had a pretty tempestuous relationship in the years leading up to her diagnosis.  Although the “Big C” certainly stopped us both in our tracks, we had existing problems with our relationship that had been left unresolved. In our case, the issues revolved around a lack of effective and loving communication, as well as all the common stuff that being a first time parent brings up – the new family dynamic and the differences in the ways we wanted to bring up our toddler. Just because Clare suddenly had cancer, the existing tensions didn’t go away – the biggest issue on our plates had just dwarfed them.

Equally as suddenly, we were forced into roles that were completely foreign to us. My beautiful, sexy, strong-willed and outspoken wife suddenly became ill. I was a jobbing actor, only just beginning to realise after the birth of my son that I wasn’t the most important thing in my life anymore. Everyone suddenly expected me to take on the role of ‘carer’. I was supposed to be supportive in every way and humble to the core. I rebelled for a long while, as I simply didn’t want to accept what was happening to both of us.

I remember coming out with stock phrases that I could say while remaining completely emotionally disconnected: “Yeah its not easy, but compared to what Clare must be going through, I’ve got it easy” or “No one expects to be hit by the brick wall of mortality at 31 – I just can’t imagine how she must feel”. The fact was though that I didn’t really know what to say to people who asked how things were going. It was too huge to actually deal with. When people asked how she was, how I was, I often just wished they hadn’t bothered, as there was nothing that anyone could say that would make the situation better. My biggest challenge at the time was accepting our circumstances. Quite simply, we were both trying to come to terms with a very unpredictable future that neither of us had ever imagined.

The idea of being able to connect with other people seemed impossible as there was no one who really knew what we were going through. There were plenty of people who said “call me if there’s anything I can do” but we both knew there was really nothing they could do. Perhaps I didn’t really want to connect with anyone at the time. Usually very outgoing and social, I found that my default coping mechanism was to internalise and disconnect from others. I found myself crying down the phone to a Macmillan volunteer one time, but that was about it. There’s never really been anyone I knew of who was our age and who had gone through what we were going through – until now and thanks to the creation of Shine Plus One’.

SalmaSalma’s story:

2009 was supposed to be great. After years of struggling in vain we were finally pregnant with our first child. Life was wonderful. Then one phone call brought us down from the top of the world and my husband Rich was told he had hairy cell leukaemia. I imagine everyone remembers the moment they find out. We certainly will never forget: it was the day before our baby’s 20 week scan.

The scan is still a bit of a haze for me. We were very happy to see that our child was healthy and growing well but as we sat there Rich feared that he would never see his daughter born, and I was utterly terrified at the thought of being a single parent without my husband at my side. It was all hideously wrong.

Following his diagnosis Rich had to stay away from people to reduce his risk of infection – even catching even a cold could have killed him.  Fortunately he could work from home, but with me about to go on maternity leave, it was a scary time not knowing if we would manage financially.  It was a lonely time for both of us as well. The winter of 2009 /10 was a harsh one and most of the people we knew had a virus at some point so they couldn’t visit.  As a hormonal, emotional pregnant woman my mind went to horrible places as I watched my husband get thinner and sicker, but if I wasn’t positive and strong who would be?  I kept it all in.

After his chemo Rich caught an infection and was put into an isolation room in hospital. He was there for most of the final two months of my pregnancy and this was a dark time.  I watched him shrink physically and saw how the isolation drained every ounce of enthusiasm from him. Each day I walked in the snow to the hospital and sat with him. I left each night when he fell asleep.

As the one without cancer it was almost impossible to shout “what about me?” but I found myself in a lonely place. I have many wonderful friends and family nearby who looked out for me and who phoned regularly, but people have their own lives, and none of them truly understood what it was like to be me.

Shine Plus One

Shine has been invaluable to our partners Richard and Clare and has provided support and an understanding community (you can read Richard’s story here).  When we met at Shine London’s Summer Picnic in July of this year, we bonded over the idea of starting a “Plus One” group that could provide the same sort of support but for partners, friends or family.

We want to offer a friendly ear and support to those out there who, like us, feel they might benefit from chatting about the real issues that having a partner or family member/close friend with cancer brings up. We want to provide a platform for people to sound off about anything without feeling judged. We want you to know that you are not alone in thinking or feeling the way that you do!

You can get in touch with us on Facebook (just request to join the group) or, if you’re in London, drop us a line at londonplus1@shinecancersupport.org