Shine welcomes the publication of the new National Cancer Plan for England and congratulates the Department of Health and Social Care on their extensive engagement with patients, their families, charities and professionals in its development. The plan rightly focuses on improving outcomes, early diagnosis and quality of life for people affected by cancer.

However, the reality of a rapidly growing population of people diagnosed with cancer in early and mid-adulthood is missing from the plan. Cancer rates among people aged 20 – 49 have increased faster than any other age group, yet specific considerations for this demographic remain largely absent from the plan’s priorities. For those in their 20s, 30s and 40s, a cancer diagnosis often comes with impacts to work, finances, fertility, mental health and relationships – areas which require tailored, age-appropriate support both during and after treatment.

The Secretary of State for Health and Social Care, Wes Streeting, was himself diagnosed with cancer when he was within this age group. His experience highlights the importance of recognising that cancer is not only a disease of later life and that younger adults face distinct challenges that must be reflected in national policy.

Shine urges the government to ensure that adults in their 20s, 30s and 40s with cancer are explicitly recognised within the implementation of this plan, so that care can align with the changing face of cancer in England.

The post Response to the National Cancer Plan for England first appeared on Shine Cancer Support.

I will start by saying, “Once upon a time, there was a cracked nipple on my right breast.” The nipple started bleeding, and I consulted several physicians. For months, I was told it was nothing to worry about, that it was a common symptom during pregnancy as the breast tissue expanded, causing skin ruptures. I tried all kinds of creams, remedies, and dressings as advised, hoping it would heal and return to how it was before. Eventually, an ultrasound was performed, revealing nothing abnormal in the breast, but one enlarged nodule under my armpit. They said they would monitor it over a few months. At a follow-up ultrasound another enlarged nodule was found. Despite this, nothing suspicious was found in my breast except for the cracked nipple. They then decided to order a biopsy “to stay on the safe side.” I found it hard to grasp what they meant by “to stay on the safe side.” What would be the other side?

This is how a simple story about a cracked nipple turned into my worst nightmare. After the biopsy results came back, my husband and ten-year-old daughter were in the waiting room. The breast surgeon asked my daughter to wait outside before delivering the news. The doctor informed me that the biopsy showed an aggressive type of breast cancer called HER 2+. I was shocked and paralysed, with various thoughts raced through my head. remember my doctor ending the appointment by saying, “If you need to remember anything from this conversation, know that this is treatable.” I barely recall the rest of what was said. I just remember crying continuously, holding my husband’s hand as we both received the worst news with a big question mark in our minds.

After the appointment, I awaited further tests and scans. Sitting in other waiting rooms, tears would suddenly run down my face. Numerous thoughts flooded my mind, but the most persistent was: What will happen to my family? My husband, my daughter, and my soon-to-be-born baby daughter? How could this be happening when everything should be blissful? How could this be more contradictory— a pregnant women diagnosed with cancer? I had never heard of such a case.

What should have been a time of rejoicing for my long-desired pregnancy became a period of deep anxiety, uncertainty, fear, and all kinds of negative emotions. The next few weeks and months were the worst of my life. My husband and I ran from appointment to appointment, from scan to scan, and from blood test to blood test. It was frustrating to realise I could not have the same scans as other women in my situation because I was pregnant, and it could harm the baby. For months, I could not know if the disease had spread because I could not have a Magnetic Resonance Imaging (MRI) or a Positron Emission Tomography (PET) scan until my baby was born.

In the following days and weeks, we had to make incredibly difficult decisions. The biggest decision was when to deliver the baby. We had to coordinate between doctors to ensure we were assessing the risks from both the oncological and the pregnancy and neonatal perspectives. Initially, they suggested a C-section at 29 weeks. After hearing about the risks of developmental issues for the baby and visiting the neonatal unit, we decided to wait until 35 weeks when the baby would be fully developed.

The next big decision was how to deliver the baby. After discussion with doctors we decided that preferred Plan A would be an induced vaginal delivery, and Plan B would be a C-section. I was desperate to have a vaginal delivery as there would be benefits for both me and my baby. Having delivered my first daughter naturally, I believed my body would recognise and remember the process. Moreover, I wanted to be able to stand up the next day, walk, and have the long-delayed MRI and PET scan.

In the meantime, we had to control the disease, so I pushed through two cycles of adriamycin and cyclophosphamide chemotherapy. I was tired, but with minor side effects. I could not tell if they were related to chemo or were regular third-trimester pregnancy issues like indigestion and reflux.

The delivery was a very scary step for us and as it was one that would determine the next steps in my journey.  I tried to remind myself that I should trust my body and use the tools I had learned through my previous delivery. Also, and very importantly, I told myself that I had to get up the next day and go to my long delayed MRI and PET scans to see if the disease had spread.

I arrived at the hospital on the planned day of delivery and had prostaglandin inserted to trigger contractions. Because this didn’t work well, the midwifes and doctor suggested proceeding with oxytocin. I was offered an epidural, however, this did not work as planned; My doctor was called at 2am but with all of the drugs and tubes connected to me, my daughter Emilia was born at 35 weeks through an induced vaginal delivery.

I stood up the following day and rushed to the clinic for all of my scans. The MRI and PET scan results showed that the disease had not spread, which was a huge relief. I then underwent six cycles of TCHP (Trastuzumab, Pertuzumab, Taxol and Carboplatin), followed by a mastectomy. After that, I had fifteen sessions of radiotherapy and immunotherapy (Trastuzumab, Pertuzumab) sessions every three weeks for one year.

I would be lying if I said I have overcome the trauma of the past year. I would also be lying if I said I now see life positively. Yes, I have become a much stronger version of myself, but I did not have a choice. Although I praise myself for being brave throughout this journey, I believe everyone has the strength to face traumatic journeys.

I have learned many lessons but the most important one for me is how vital it is to build a support network to accompany you through the darkest times. In my case, this network included my family and friends, trusted physicians, caring nurses, a reiki practitioner, a yoga teacher, a psychologist, psychiatrist, and fellow patients. Each of us knows what we need, and if not, keep searching because you need to take charge and design your own experience.

The second most important lesson for me was to trust myself and my body. If you feel something is wrong, make your case and be your best advocate until you find someone who believes in you.

The third lesson is that life after cancer is not easy. Sometimes it can be very scary, and I wish I could say I do not fear it coming back. I take one day at a time, acknowledging that I am still healing myself and my soul, and that I can face any other challenge that comes my way.

The post Pregnancy and Cancer – Laura’s story first appeared on Shine Cancer Support.

And, if all else fails, try cuddling a puppy (just like Clare’s very own bundle of joy, little Roo – read until the end for a little surprise…🐶)

**

There is something uniquely bleak about being both wired and tired. Going through rough health times whilst managing insomnia adds a level of stress to an already high-pressure situation that we just don’t need. Navigating the idiosyncrasies of the healthcare system is hard at any time, doing it on a few hours kip can leave me a total wreck. I’m too tired to properly advocate for myself, and wired enough to feel every thoughtless comment or failed attempt at health admin as a full-scale attack on my whole person. It leaves me feeling both defeatist and hypersensitive. So, all in all, a fun person to be around.

If you’ve ever struggled to doze, to drift off, or get your requisite hours of deep sleep you’ll know the torment of unsolicited insomnia advice better than anyone. Have I tried a hot drink before bed? Drop it out, of course I bloody have. I totally appreciate that sleep hygiene is important. I almost feel that I must write that because it’s the right thing to say. But I also know it’s clearly not a good idea to load up with caffeine, watch a high-octane action film whilst scrolling on your phone, and eat a six pack of KitKats in bed ‘til 4am. If I was doing this and not sleeping, I probably wouldn’t be looking for answers. However, if you’ve broadly got a ‘normal’-ish routine, you do the same things as the person next to you in bed – they drift off easily and you are lying there counting sheep for four hours then surely some of it also has to do with luck? My sister, who I love very much, can sleep anywhere, at any time. And I deeply resent her for it. Plonk her down on a handrail and she’d probably doze off. She doesn’t do ‘sleep hygiene’, in my mind, she’s just got better sleep genes. I think she nicked all the ones up for grabs in our family.

I’ve tried: a strict bedtime, lying there in the dark, not lying there in the dark, cutting out all caffeine, stopping screens in bed, listening to guided sleep meditations, not listening to guided sleep meditations, getting up if I wake up at 2am, moving rooms, lying-in in the morning, not lying-in in the morning. I’m as therapised as a person can be, I’ve taken magnesium and all the rest, I’ve sprayed my whole room with lavender scent. And these are just the things I can think of right now – there will be more.

The reality is, since I was young, I’ve needed less sleep than most of my family. Combine that with cancer and all the fallout, there are so many physical and psychological reasons that I find sleeping tough. The battering fatigue I can sometimes have doesn’t help me to approach the whole sleep situation with clarity. The way my surgery has caused the muscles in my back to seize at random moments. The fact that when everything is quiet at night, it’s hard not to revisit traumatic times. It’s more nuanced than a few practical things I’m doing wrong – and therefore, the response must be more nuanced too.

So…in the spirit of not offering unsolicited advice, this is not what you should do, rather simply what I have done.

1. It took me some time to realise that stressing about not sleeping was not going to aid sleeping, so I had to reframe it. Night times for me now are not necessarily as sleep-focused as they once were – it’s more about rest. If I’m lying there awake, I try and change the internal chat. Shifting from “OH MY GOD YOU’RE NOT SLEEPING AGAIN THIS IS A DISASTER AND THE WORLD WILL END” to “Cool, look at all that resting you’re doing, this will surely help” has, indeed, helped.
2. If it’s an anxious night then I’ve learned that my brain is likely sending out all sorts of chemicals to my body telling it to be on high-alert, ready for danger. We talk a lot about this in Shine workshops and it’s really helped me to realise I’m not just subject to that. I can use my body to close that loop and tell my brain that I’m not in immediate danger, it helps to feel that you’ve got some agency. Doing things with your body that you just wouldn’t do if you were under threat can genuinely impact your body chemistry. Slow breathing, closing your eyes, lying with your feet against the wall send messages to that anxious brain that you’re safe right now, in this moment. This might not immediately bring sleep, but it puts your body chemistry in a better place to start to invite it.
3. If I’m sharing my bed with my lovely person, I no longer feel bad about moving rooms. It isn’t half-stressful lying there trying not to wake someone else up while you try and turn over like a ninja, or when your sleep podcast suddenly goes on full volume. Giving myself permission to make the nights as stress-free as possible was an important move.
4. In the end, I found that putting on a podcast to automatically turn off after an hour was more effective than anything else I have tried. It doesn’t always work but then I just revisit point 1 above and am thankful for the rest time.
5. Finally, I just give myself a frickin break. Stop beating myself up for being a ‘bad’ sleeper or for getting it wrong. A little bit of self-compassion goes a long way. Insomnia is horrible and anyone who lives with it is really unlucky. Of course, there are things you can try if that feels like an empowering move, but deciding to banish the sleep police from my head was one of the best things I did.

I currently wake about 4-6 times a night, my going to sleep phase has improved and I’m awake earlier than I’d like but I see all these as moveable things. If I add sleep to the list of things that has been impacted by my illness it puts it in context – processing such huge life-changing experiences takes time and your brain and body sometimes do this in ways you don’t appreciate. For now, I’m choosing to see dodgy sleep as part of the bumpy path of processing everything that’s happened, in a body that is trying it’s best. And last night I managed four whole hours in a row – that’s the best stretch of sleep I’ve had in ages so I’m also here for celebrating the small wins.

Sleep well friends. x

The post PUT DOWN THE BLUE LIGHT – THIS IS THE SLEEP POLICE 💤 first appeared on Shine Cancer Support.

Hello! This is Tanishka, a year 9 student from Didcot Girls’ School. It might be surprising to read a new person’s work, and potentially even more surprising to read a teenager’s work, but what I find very surprising is that a charity, First Give, is ready to donate £1000 to one charity this Friday. Me and my friends are working hard to get it to Shine.

Our school is participating in the First Give Challenge, where every class chooses a charity, and raises funds and awareness for them. The most creative class wins £1000 for their charity, and ours chose Shine. The reason we chose Shine was because we loved the fact that they support younger people with cancer who are mostly disregarded amongst elders and children. I love the fact that they are not another charity helping to save people from cancer (even though I highly appreciate and love those charities too), but a charity that saves people’s lives after cancer and also saves the fun life those people had before cancer.

As a class, we decided we would do a bake sale with some leaflets sharing information about Shine alongside a raffle, which altogether raised just above £200. We made our posters WW2 themed with the Shine logo and we are trying our hardest to win the money to help support some of you fighting it. We also had a pick ‘n’ mix sale with a sign saying, ‘Cancer patients also have a mix of problems, but they don’t get to pick it, nor is it sweet’. One of Shine’s volunteers very kindly sent us some badges, and we did a Shine badge day where everyone in our group wore something orange and the badge.

Fingers crossed, we will win the finals, but we feel that it’s not just about money or the feeling of victory. We loved working with and for Shine, and that is the thing that matters but it does not end here.  I am planning to run my pick ‘n’ mix every year from now on to try fundraise, and I’ll be meeting some more Shine people next week where I can continue talking about how much I love Shine because now I have signed up to be a Shine’s volunteer.

Thanks for reading, and do pray for us to win the cash prize!

Tanishka

The post Fundraising pick ‘n’ mix 🍭🍬🍫 first appeared on Shine Cancer Support.

When Charlotte shared some of her illustrations with us, we were so struck by how powerfully they represented a world we immediately recognised. Not only does she capture and report her own experiences through her artwork but below she explains just how therapeutic having a creative outlet can be. We are so grateful to Charlotte for sharing her story and incredible artwork.

If you’d like to write a blog for us, do drop us an email at blog@shinecancersupport.org

I have been a freelance illustrator for over ten years and have worked on projects for books, heritage sites, public realm and community based projects. Drawing and being creative has been my best friend since I was young and has always helped me process things that are going on in my life. It has held my hand, particularly in the past year, during the long wait for a diagnosis, through traumatic surgery and a slow road to recovery.

In June 2023, I was diagnosed with a very rare form of appendix cancer called Pseudomyxoma Peritonei, which had spread to the peritoneum and the surfaces of my organs. Soon after, I underwent major surgery to remove 7+ organs including my gallbladder, spleen, appendix, uterus and both ovaries, sending me into a surgical menopause at 32. My belly button was also removed! I then had HIPEC (chemotherapy) put directly into my abdomen during the surgery to wash away any remaining cancer cells. I hadn’t had children yet and made the difficult decision not to freeze my eggs due to it potentially making my condition worse. I am still in the early days of coming to terms with the loss of my fertility.

Due to having a rare form of cancer, my diagnosis took nearly a year with lots of twists and turns. At first it was thought to be ovarian cancer, then it moved to colorectal, then I was told it was benign, then borderline and finally I was referred to a specialist centre and was told I had peritoneal malignancy with appendiceal origin. I faced uncertainty for a long period and found it very hard to continue with a normal life in the meantime.

Drawing has played an important role in keeping me going, giving me a focus and a drive and calming me down when I feel distressed. In the 10 long months waiting for a diagnosis, I filled multiple sketchbooks with observational drawings. It was helpful to get out of my usual surroundings and go to cafes, parks and museums to observe and record life go by. I enjoyed exploring mixed media and worked with different materials from my usual go-to selection, including Posca acrylic markers, Indian ink, pastels and found my way back to the humble graphite pencil. I enjoy using a mix of vibrant and muted colours to express a feeling or capture a sense of place.

Since my surgery, my creative output has slowed somewhat, but has shown up in some of the darkest moments to lift my spirits and help me process what has happened. I asked my mum to keep a diary for me of each day of my hospital stay so I could go back and tell my story visually when I felt able to. I knew I would want to share what has happened, in a visual way, to try and convey the journey and demonstrate the enormity of this experience.

I worked on this visual diary in the early days after surgery, and look back on it every so often to remind myself that I have been through a lot and to have more patience with my body and more self-compassion in general. I hope that others in similar situations might find they can relate to aspects of my diary and know that they are not alone.

In the last few months, I have been working on a life-size map of my body, inspired by Grayson Perry’s maps of self. I have illustrated my internal organs, leaving white space where organs once were and filling them with words describing the pain (both physical and emotional) that has come up as a result of losing them.
Art is more than just a distraction, it is a way of processing the feelings. It is a route to healing that is gradual, patient and hands-on, through brush strokes and choices of colour, through storytelling and imagination.

Yes, the cancer diagnosis has been life changing in many traumatic and devastating ways, but I am also hopeful that it is a redirection to something else. There is hope in creativity, even if that hope is hard to feel sometimes.

**

You can support Charlotte and her artwork on her website and her Instagram page!

The post Charlotte Orr – Illustrating My Experiences first appeared on Shine Cancer Support.

Take a deep breath, fill your lungs, and expand your belly. Pause. Exhale slowly, to the count of four. Repeat four times.

Congratulations! You have just practised “controlled breathing” and calmed your nervous system. That wasn’t so hard, was it?

I appreciate that the title of this may put some of you off but hear me out. I, too, was once a cynic. I am no breathing expert there are many articles and specialists in this field, so if I spark an interest, it is worth some further consideration.

We all know how important breathing is – we can’t live without it – but did you know the automatic and rhythmic act of breathing is controlled by a network of neurons in the brain? Did you also know that the way we breathe can also influence the brain?!

Deep breathing and relaxation activate the parasympathetic nervous system which can send a signal to your brain to tell the anxious part that you’re safe. It also tells your brain that you don’t need to use the fight, flight, or freeze response. Deep breathing also gets more oxygen to the brain.

We all breathe, that’s a given. But when you focus and think about it, do you ever hold your breath or forget to breathe on occasions?  When we’re eagerly awaiting something it can be common to hold your breath or to breathe more shallowly, reducing the amount of oxygen we’re taking in.  People tend to hold their breath when they’re stressed, anxious, excited, upset, or frustrated, and there are a lot of occasions when we inadvertently hold our breath without even realising it.  This is likely to increase in moments when you’re feeling really overwhelmed or stressed, or if you’re anticipating something.

I like “controlled breathing” as it is really practical and puts me in control. Control is a big thing for me, and I know many others feel this way.  Send me on a mindfulness session and I go into a state of panic.  Have I chosen my favourite beach? What happens if it’s not my favourite place or I am fixated on the wrong kind of tree? My mind starts to wander and I start to think about what I am cooking for dinner or the jobs that need doing – all of which for defeats the purpose of mindfulness in the first place.  Please don’t get me wrong if this is your thing and you can embrace it. I am jealous as I can see the benefits, I just find it really difficult.

However, when I found “controlled breathing” or “square breathing” I was won over.  It’s easy to visualise as it’s a square – there is no ambiguity in that and while initially it feels a bit uncomfortable, once I relax into it then my breathing naturally falls into a rhythm, allowing me to remove the tension.  This technique has got me through radiotherapy wearing a face mask and more recently eye surgery.

Why not give it a try the next time you’re stressed? You don’t have anything to lose but a few minutes!

You Tube has some good clips – found here or here.  Alternatively great guidance can be found here.

The post The Power of Controlled Breathing first appeared on Shine Cancer Support.

On 23 March, Shine visited Maggie’s Edinburgh to run our first Shine Shake Up. It was an amazing one day event full of laughter, learning and connecting with other younger adults with cancer. Run by the lovely Shine team – Ceinwen, Hannah and myself – the idea behind the day was to grow our support in Edinburgh, spotlight the support that we offer to people in their 20s, 30s and 40s with cancer and to encourage people to come along to our monthly Edinburgh network events. 

We had 18 people sign up and the day was focused on connecting with other younger adults with cancer and talking about things that matter – like how they cope with uncertainty, media misinformation about cancer, and how they manage their fears. There was a mixture of group discussions and breaking into small groups. Younger adults often feel quite isolated and like they’re the only one who is experiencing cancer, so the power of the day was showing people that they weren’t alone in their experiences, feelings or anxieties.

The day was an overwhelming success with many of the participants trading numbers, making connections and new friendships with others who just ‘get it’. We now have a healthy WhatsApp group of participants that wish to stay in touch, lots of new Edinburgh Network members and ideas for future meet ups. We want to say a massive thank you to Caroline and everyone who works at Maggie’s Edinburgh for letting us use their beautiful centre, suggesting some really delicious catering and for being so supportive and helpful throughout the day. We have two more Shake Ups coming up, one on April 20th at Maggie’s Southampton and one on June 15th at Maggie’s Bart’s that are free to sign up for on our website!

The honesty, vulnerability and encouragement of those who attended is what made the impact of the event reach far beyond a single day. This can be best summed up by some feedback left by one of the participants:

“Thank you for running this day. In my two and a half years dealing with cancer, it’s been a lonely journey as I have always been the youngest person in every room by a mile. Being with people of a similar age group who just get it was hugely beneficial for me and for once I actually didn’t feel alone. I feel like I’ve found connections for life which is just amazing. So thank you.”

The post Shine’s Shake Up Edinburgh first appeared on Shine Cancer Support.

The first time I used the phrase, “This is my first time having a terminal illness…” I was sitting on the chemo ward having my first treatment. Hooked up the drip stand, my mother beside me, wondering if I was about to start feeling sick, I was also speaking to someone from another hospital by phone about a possible second opinion.

“The thing is, we can’t give you a consultant’s name until we know your insurance company will pay for it,” she said.

“But I can’t get my insurance company to sign it off until I have a consultant’s name,” I replied. Silence. Impasse.

“This is my first time having a terminal illness,” I said pleasantly. “I don’t imagine this is your first time doing this. Perhaps you can suggest a solution?”

That was the first time I brought out those words, but it certainly hasn’t been the last. Having cancer is much like buying a property – you’re the amateur in the process, doing this for the first time (hopefully) and yet everyone you speak to, who is doing this sort of admin every day as their job, acts as if this is their first time doing it too.

Another great example is booking in for scans. Each time I’m due a scan, I receive a letter telling me to call a certain number to book port access earlier on the same day. On one occasion, I called 40 times without an answer, before I flipped out and contacted my clinical nurse specialist and asked her to sort it out. And suggested that in future, each time I was booked for scans, I was automatically also booked for port access. But I can’t be the only person with a port having scans and this information isn’t a secret from the hospital. Why isn’t port access booked for such patients every time as a matter of course?

The interface between health insurance and hospitals is particularly interesting (and I appreciate this is a first world problem – I am lucky to have health insurance and so to be treated privately). “And the question my insurance company will ask is will that be billed through the hospital or separately?” I asked, as I booked my first acupuncture session for my peripheral neuropathy.

“Well, it’s at the hospital, so via the hospital,” said the secretary, with the air of one who has been asked a slightly ridiculous question. I laughed. I’ve seen two or three consultants at the hospital, who invoice separately.

She called back a couple of hours later.

“You’re right,” she said, apparently surprised. “He does bill separately.”

Am I the first person to be treated by this hospital via health insurance? It seems unlikely, but appears so. But then, I do sometimes wonder in general about questions from hospitals. I was once having a pre-procedure telephone appointment when the caller said breezily, “Any medical history?”

No, I’m being treated at a cancer hospital because I have no medical history.

It’s up there with a question from my insurance company, after I had described my upcoming operation.

“Will that be under general anaesthetic?”

No, I’ve always wanted to have two-thirds of my bowel removed while conscious.

Or the one I was asked while in hospital recovering from removal of my primary tumour and stoma reversal. “Have you ever had surgery before?”

No, I got my stoma initially by just pulling my guts out through my stomach one lunchtime…

Recently, I was lucky enough to be told I’m in remission, with no sign of active cancer, and my consultant said I could say “no” to the travel insurance question about whether you have a terminal illness.

“The thing is,” said my husband, once he’d stopped crying. “Now you won’t be able to say this is your first time having a terminal illness…”

Pippa Roome is an equestrian sports journalist who lives in London. She was diagnosed with stage 4 bowel cancer when she was 41. She recently took part in Shine’s online Circles programme.

The post Coping with Cancer Administration…. first appeared on Shine Cancer Support.

and welcome to this month’s Shine blog. This month I’m going to be sharing with you some of the things that I’ve experienced in my first year of living with a cancer diagnosis and how I’ve dealt with them. This doesn’t mean you have to deal with them in the same way but it might help you when you are in the whirlwind of a new diagnosis.

I should probably start with doctor’s appointments. Boy, there is a lot of them. At times I seemed to spend more time at the hospital than I did at home. 

I think the first thing I wish I’d done was take someone with me whenever I had an appointment. The first time my surgeon used the word ‘cancer’, I was in the appointment on my own and I felt like I been hit by a truck. I don’t really recall much of the conversation but I think it was along the lines of “you might have cancer but I think it highly unlikely”, so it wasn’t even particularly bad news at that point.

I learned from this, however, and now take my wife to every appointment with me. I suffer with ‘brain fog’ due to the treatment I’m on and she can remember what is said better than I can. She is also a nurse and can understand the whole new language that you get to learn. 

This was especially important when I was told that I’d joined the Stage 4 club (the club no one wants to join).  I was just completely dazed and confused as soon as the oncologist used the term metastatic cancer to describe my bowel cancer. I genuinely don’t remember the rest of the conversation after that. Hell, I couldn’t even process what that term meant, even though I’d been reading about cancer for the last 4 months. 

Then there are the joys of treatment. Before you even start treatment, the doctor will go through all the side effects with you and get you to sign a consent form. This scared me; the list is so long and had some scary stuff in it. I signed it though –  the side effects were better than alternative in my mind. So far, I’ve experience chemotherapy (CAPOX) and immunotherapy (Pembrolizumab). 

When I had CAPOX I was on a three-weekly cycle. The first day of the cycle, I’d be given an IV through a PICC line and then this was followed by 14 days of tablets. It is gruelling but you get used to the pattern of how your body copes with it. I think finding the pattern and then working out what I could and couldn’t do at different times has been really useful.

For example, in the first week, I typically experienced a lot of symptoms. I was massively fatigued and slept a lot. I remember getting out the shower one day and drying myself off. I sat on the bed and the next thing I knew; it was dark. I’d fallen asleep on the bed just by having a shower. After this I used a fluffy towel and just waited until I dripped dry, rather than wasting precious energy!  

I’d also have constipation followed by diarrhoea (manageable with medication), numb hands and feet that would tingle painfully whenever they touched anything cold. I started to wear gloves in the house. I also had a throat and hand spasms due to the cold. When my hand spasmed I’d look like a baby T-Rex and I’d have to wait for them to pass. The throat spasms were easier to deal with by having a warm drink or wearing a scarf. I’d lose my appetite though I’d force myself to eat as I knew it was important to keep giving my body the energy it needed to cope with the treatment.           

By week two, cold sensitivity would be less, and the other side effects would start to subside. My appetite would start to return, and my energy levels would start to pick up though I’d still nap most days. 

By week three I’d be as close to normal as I’d get, and I always made sure I had something fun planned for that week. It might be a few beers with friends (talk to your oncologist about whether you can drink on your treatment), or maybe a day out with the family or trip to the cinema.  I even managed to visit some work friends a couple of times. On the Thursday of this third week, I’d meet with my oncologist and discuss the treatment cycle and she would make any changes needed for the next cycle, followed by blood tests to make sure I’d recovered enough for the cycle to start again. 

I’ve been left with long term side effects, but I’ve managed to adapt my daily life to deal with these and it hasn’t stopped me doing anything I want to do. I just might have to get a bit more creative on how I do some things. 

The cancer diagnosis has also been a challenge in regards to my mental health. To be honest I think it would be a challenge to anyone, whether they have had mental health issues in the past or not. It has hit me in waves at different stages of my journey and just when I think I’m back on my feet another wave comes along. 

The best advice I could give to you would be to take any help that you are offered whether this is anti-depressants, talking therapies or taking up a place on one of the Shine Programmes (I can highly recommend the Circles Programme.).  

I’d also recommend finding the people in your world that will offer you true empathy rather than sympathy. Sympathy is okay but after a while all the sad looks and the “it could be worse” comments start to get to you.

I was lucky to also find people that make my world a little brighter with their infectious energy or their sense of humour. On my down days, I know that I can always get a little lift from them.  

I hope this blog helps you to start your cancer journey. Remember that this really is a marathon and not a sprint. There are lots of reasons for hope and, if you do need support, please access the services and programmes you can find on the Shine website or Facebook groups.

You can listen to Matt talk about his experiences on our podcast, Not Your Grandma’s Cancer Show, here. 

The post New to cancer? Matt shares his thoughts on coping with diagnosis and treatment first appeared on Shine Cancer Support.

Strength training wasn’t something I did much of before my own cancer diagnosis in 2018. I’d always had a passion for fitness, but I was more into running and cycling than weights. After my treatment ended, I really struggled to find the right support and advice to know how to safely exercise after cancer. I knew there must be others like me, who wanted to exercise after their diagnosis, so I decided to retrain as a specialist fitness trainer and set up ‘Get Me Back’, to help others benefit from being active before, during and after their cancer treatment.

My mission is to support women and men to feel stronger and more in control of their bodies during and after treatment. Before my diagnosis, I must admit I found the weights area of a gym quite scary. But what I’ve learned since is that you don’t need a gym to take part. Strength training is much more straightforward than you may have thought. And the benefits in cancer are HUGE.

Twice weekly strength or resistance training will¹:

• help keep your bones and joints strong, even more important post menopause,
• reduce your risk of developing osteoporosis,
• reduce muscle wastage during treatment (chemo especially),
• ease pain and stiffness in the joints caused by ongoing therapy and/or medically induced menopause,
• increase energy levels,
• reduce weight gain…and the list goes on.

There are precautions you need to take, BUT this does not mean you need to avoid weights and lifting all together.

I have seen people go from strength to strength (quite literally), using resistance bands lifting kettlebells, barbells, and even dumbbells during and after cancer treatment, with the right guidance. I would always advise getting the OK from your oncology team first and ensuring you have guidance from a cancer rehab specialist to advise on the best exercises, using the correct technique.

Put simply, these are the rules I follow:

• Nail the mobility first before lifting too much weight to ensure the muscles in your affected area are working effectively. Make sure you follow your physio exercises religiously and continue them longer than you feel necessary.
• Warm up and cool down for an extended time before you start a workout. Your body needs the extra time to get ready.
• When you’re ready to begin lifting, start light and progress slowly. See how your body responds for a few days after lifting before progressing.
• Be cautious if you’ve had surgery or treatment to your lymph nodes. Unfortunately this will put you at a higher lifetime risk of lymphoedema. However, this shouldn’t put you off, but specialist guidance is a must as you progress with strength training. Ensure you:
  • Don’t wrap resistance bands around the hands (or legs)
  • Avoid long (more than 45ish seconds) static holds such as the plank, although that’s not to say you can’t progress to this, but putting pressure through the affected area of the lymph can be risky
• Allow for a rest day after strength training to support recovery, just going on a gentle walk to keep things moving.
• If you have lymphoedema wear your compression garment when exercising.
• Be careful not to compete with your pre-cancer self. If you lifted before cancer, don’t compare weights lifted now (quite yet anyway!).
• Make it fun! Find a trainer or training partner who you get on with, who motivates you and who you enjoy working out with. Get the environment right – outside in the fresh air is always more exhilarating (in my opinion!), or in the comfort of your own home if you prefer.

 Strength exercises post cancer treatment

Ensuring your whole body benefits from strength training is an important way to future proof your bones, joints and muscle tone.

Being able to effortlessly carry out simple every day movements is a good motivator – picking things off the floor, getting out of a chair, climbing the stairs – straightforward movements you want to continue doing with ease, for a long time to come. Basic strength training principles are based on these everyday functional movements:

Squat – comparable to the movement of getting in and out of a chair. This simple but effective exercise that can be progressed or regressed by changing the level of support, resistance or weight lifted, range of motion or the way you position your legs. Start with a body weight ‘sit to stand’ from a chair, progress to taking the chair away, then using your bodyweight to squat, slowly adding weight to the movement.

Hinge – effectively bending to pick something off the floor. But making sure you’re using the right muscles and the correct form. Hinge movements like the deadlift can be a tricky one to master. I like to start using a pole. Stand in front of a mirror with your feet hip width apart with a slight bend in the knee. Slide the pole down the front of the legs, pushing the bottom back, leaning your torso forward, maintaining a tight core and flat back (like a hinge from the hips), Then push into the floor and stand back up, pulling the pole or weight with you and keeping the arms straight.

Push – any exercise where you push weight or resistance away from you. Like an overhead press, or wall press up for example.

Pull – movements where the effort of the exercise is the pull movement, such as a bent over row, lat pull down or upright row. All great strength exercises to build upper body strength and support good posture.

Lunge – a movement series that supports walking and stair climbing. It can be progressed or regressed through the level of support, range of motion or resistance. Bad knees? Use a step up instead of a lunge.

Combining a strength programme with regular stretching will be hugely complementary to recovery.

Sarah holds a CanRehab Level 4 Cancer & Exercise Rehabilitation qualification and is also a Breast Cancer Rehab Coach. She has a degree in Biology and spent 12 years working in Medical Communications before her cancer diagnosis. She offers introduction course on strength training, and regular LIVE online classes focussed on strength training to support women recovering from cancer. Please visit www.getmeback.uk to find out more. She also provides training on a 1-2-1 basis for men. 

References:

1. ACSM: Exercise Guidelines for Cancer Patients and Survivors

The post Getting your strength back after cancer first appeared on Shine Cancer Support.