Vita Blog: Getting support: counselling, support groups and mindfulness

Here’s my latest Vita Blog Post: http://www.breastcancercare.org.uk/news/blog/getting-support-counselling-support-groups-mindfulness

I love picking fruit and today I spent a couple of hours picking blackberries. It requires patience and perseverance but it’s incredibly rewarding seeing the fruits of your labour bubbling away on the stove.

One of the reasons I love picking fruit is because it’s one of the only times I switch off. This is something I strive for when I meditate but never quite achieve. When I’m picking blackberries, all I’m focused on is reaching for the next berry. It’s very therapeutic and for a few blissful hours I forget I’ve got this vile disease. 

Switching off is difficult at the best of times, but when you’re going through treatment, worries can be all consuming. Not only are you dealing with the rollercoaster of treatment, but there are often financial, emotional and practical issues to contend with. Anxieties about paying the bills, body image and fears of recurrence are just a few of the things a cancer patient has to face, along with the physical and psychological impact of treatment.

The constant stress of treatment can take its toll, and it’s no surprise that depression and anxiety are common among cancer patients. Mental health has been in the news recently with research showing that between 6 and 13% of cancer patients have clinical depression, compared with 2% of the general population.

Like many cancer patients, I struggled to get any psychological support when I was first diagnosed. A cancer diagnosis wasn’t considered serious enough to warrant an urgent referral and I was told I’d have a 6–12 month wait for counselling. It was only through accessing the support of my local Maggie’s centre that I got the psychological help I needed.

It seems like we have a lot of catching up to do when it comes to looking after the mental health of cancer patients. However, there are many resources you can access to help you cope with the ups and downs of treatment.

Counselling

Asking for help is nothing to be ashamed about. It can be really hard for loved ones to give you the emotional support you need while you’re going through treatment. It’s also really difficult to be completely honest with them. Counselling provides a neutral space for you to talk openly about how you are feeling. It allows you to put aside the brave face that you put on for family and friends.

I’ve had contrasting experiences while being treated under different authorities and every health authority varies in the availability of psychological support for cancer patients. Some hospitals have dedicated psycho-oncology units and your breast care nurse, consultant or GP can refer you. Charities such as Maggie’s and The Haven also offer counselling.

Alternatively you can chat to someone on the Breast Cancer Care or Macmillan helplines. Breast Cancer Care also has a brilliant telephone support service called Someone like me, which matches you with someone who’s been on a similar journey.

Find a support group

There’s no better support than from those in the same boat as you. No one else can comprehend what you’re going through unless they’ve been there themselves. There are breast cancer support groups all over the country. You should be able to find one through your breast care nurse, your local hospital or through Maggie’s, Macmillan or The Haven.

Breast Cancer Care offers practical courses for people at different stages of treatment as well as monthly support groups for those living with secondary breast cancer. For women under 45, their Younger Women Together meet-ups are a great way to make friends and create new support networks.

There are also online support groups such as the Younger Breast Cancer Network (UK) on Facebook and the online Forum at Breast Cancer Care, where you can get support from other women going through treatment.

Meditation and mindfulness

I started meditation classes a few months before my primary breast cancer diagnosis in 2012 and this really helped me cope with the trauma of a cancer diagnosis. You don’t have to be a Buddhist to meditate and many places now offer courses in mindful meditation or mindfulness based stress reduction (MBSR).

We spend most of our time in autopilot mode, thinking about the past or the future and paying little attention to what is going on in the present. The busyness of modern life and the technologies we surround ourselves with encourage us to be even less mindful. Mindfulness encourages you to be in the here and now using techniques such as meditation, yoga and focusing on breathing. It enables you to be more engaged with your feelings and emotions so that you are better able to manage them.

And it really works. Meditation can reduce anxiety and stress, as well as helping to control problems like pain and high blood pressure.

You don’t have to sit and meditate to be mindful. Mindfulness can be incorporated into your everyday life. Everyday activities such as baking a cake, going for a walk or even reading a book can all be mindful.

There are many avenues to explore if you’re interested in learning some mindful meditation techniques. The Be Mindful website has a list of courses all over the UK as well as online courses. Your local hospital or cancer support centre might run courses. If you just want to dip your toe in the water there are some great podcasts on the Mental Health Foundation website and at the University of Oxford Mindfulness Centre.

Picking blackberries and meditation aren’t for everyone and you might find other things work better for you. When I’m feeling well I like to keep myself active. Walking and yoga are the things that help me feel stronger both physically and mentally. On bad days I find getting lost in a book or watching a film are really great distraction techniques. I hope you find something that works for you.

You can read more from Katherine on her own blog killerkath.wordpress.com and also on Twitter @killerkath

Udderly Smooth and Proper Naked Selfie’s

This is a short post just to say a massive THANKYOU to everyone who contributed to my fundraiser. With off-line contributions from family and friends I now have enough money for ‘THE TEST’. There is a little piece of Kath stored in a lab somewhere, which will be sent to the lab in the next week or so.

I’ve recently started a new chemotherapy regime (Capecitabine) and this is making me feel pretty vile. My new best friend is the toilet, I have a mouth full of ulcers, blisters all over my feet and I was admitted to A & E on Monday with suspected neutropenic sepsis  (thankfully I didn’t).  Today is the final day of my first drug cycle (day 14) before a much needed week’s break.

One of the reasons my consultant put  me on this drug was because it’s not so hard on your white blood cells so there is less risk of neutropenia. I’ve escaped neutropenia, however the other side effects have been horrific. I’m on a really high dose so they should lower it for the next cycle.

One of the advantages of this drug is that I take it orally, so there are no horrible injections. This is easier in some ways but psychologically it’s really difficult taking a drug which you know is going to make you feel so ill, especially when there’s no guarantee that it will work. This is why the Tumour Profiling is so important. It will establish whether the Capecitabine is doing it’s job. If it’s not working, it will tell us what drugs are compatible.

Udderly Smooth – great for cows and cancer patients

I don’t like feeling ill (does anyone?) and I really struggle when I’m not able to physically function. Walking is my meditation so it’s been especially hard this week not being able to go out for my daily stomp. According to my OT mate Sally, I’ve got Occupational Deprivation – I can’t do the things I normally do. I love how they have a label for everything, it makes my misery seem somehow more justifiable.

The schmaltzy ‘Think of 3 positive things for 7 days’, doing the rounds on Facebook, has been a real test for me this week. But even I have found things to be positive about. Discovering Udderly Smooth cream (for those on Capecitabine this is a lifesaver) was a big highlight of my week however the fundraiser really kept me buoyed up. It’s been quite life-affirming and nice to know that so many people care.

What started as a little campaign to pay for ‘The Test’, has now taken on a life of it’s own and I’m handing over the reigns to the ‘PROPer Naked Selfie’ team. My lovely Aussie sister-in-law came up with the idea of ‘PROPer Naked Selfies’. I’ve nearly reached my target and I’m looking a bit peaky for selfies, so I’ve asked that any donations from this new campaign go directly to Maggie’s.

For those of you not familiar with Maggie’s. This is a charity started in Scotland by Maggie Jencks. The first Maggie’s Caring Centre was opened in Edinburgh in 1996 and they now have branches all over Scotland as well as a few south of the border. Maggie’s Manchester is opening in 2016!

My brother getting his kitchen utensils out for Maggie’s

The Maggie’s centres offer free practical, emotional and social support to anyone affected by cancer. I attended the Dundee centre where not only did I make lots of new friends, I did classes in Tai Chi & Yoga; joined a writing group; did practical courses on coping with cancer; and had countless free massages. More than anything they provide a warm safe space for people with cancer to relax, away from the harsh sterile environment of hospitals. A friend of mine described the Dundee centre as “a cuddle”.

I know the extroverts among you can’t wait to do a ‘PROPer Naked Selfie’ for Maggie’s. Just get your kit off, find a prop and take a selfie: Text ‘NKED50 £2’ to 70070 to donate £2 to Maggie’s OR donate here at JustGiving.

Tips of the week (for those on Capecitabine) to relieve symptoms of Hand and Foot syndrome: 

Udderly Smooth extra care cream – they do an Oncology range for Hand & Foot syndrome. £9 for a huge tub on Amazon

Vitamin B6 – 100mg a day is said to reduce severity of Hand & Foot

Omega 3 – I’ve been taking about 5000mg a day which I think has helped reduce the inflammation

Silk gloves – these let your skin breathe and are said to calm irritated skin

Not sure which one has been most effective but all a combination of all above definitely helped reduce the severity of my symptoms.

Vita Blog: On being a NED

I’m now officially a blogger on the Breast Cancer Care Vita Blog, which I’m very excited about!! Here is the link to my Vita Blog Post which is also posted below:

http://www.breastcancercare.org.uk/news/blog/being-ned

I’ll post all my Vita Blog Posts here on WordPress and I hope to still carry on with my personal blog. In the meantime, thanks again for following and please feel free to share my blog with anyone you think may benefit from reading it. You can also find me on Twitter @killerkath.

Ignorance is bliss

I first noticed the lump back in May 2012. Like most women I get lumpy breasts, but this one was big. So big, I wondered how I’d missed it.

Pre-diagnosis, my limited knowledge of breast cancer could be summed up as ‘something that affects old ladies and Kylie.’ I was blissfully unaware and firmly believed that other people get cancer: the dust on the self-examination leaflet from my GP was testament to my ignorance. My rapid introduction to breast cancer awareness began in the weeks leading up to my diagnosis, when I found myself buying pink ribbons and hanging out in the local Cancer Research shop, naïvely believing that these charitable acts would somehow shield me from the life-changing diagnosis I was about to receive. The fantasy world I previously occupied quickly crumbled when I discovered that pink ribbons don’t protect you from cancer.

D-day

There’s never a good day to be diagnosed with breast cancer, however my D-day unfortunately coincided with the Queen’s Jubilee celebrations. On 1 June 2012, while the rest of the country were stockpiling booze and burgers, I was told I had Invasive ductal carcinoma (Stage 2B, Grade 3, ER+ and PR+). It was bad enough finding out I had cancer, but I then had to tell all my friends that our Queen party was cancelled because I wasn’t feeling well. Ironically I felt fine, but being told you have a potentially fatal disease doesn’t put you in a party mood.

When I think back to that weekend, it still stirs up really powerful emotions. The terror when the consultant said ‘if it’s cancer;’ the frantic phone-calls trying to get hold of family and friends while I awaited results; the feeling of unreality when they told me it was cancer; and the never-been-repeated-since ‘D-day’ risotto we ate that evening.

What followed was the craziest year of my life. I lost my hair, my breast and probably my fertility. The house I own was damaged in a major fire and my mum was diagnosed with breast cancer. I then had a recurrence in October 2013. Annus-horribilus doesn’t come close to describing the cataclysmic chain of events that occurred during that year. We even had a flood.

It’s been five months since my recurrence, which was successfully treated (I had an axillary lymph node clearance) and I’m now on my way back to that strange place called ‘normality.’

Getting back to ‘normal’

‘I bet you can’t wait to get back to normal’ is one of those things people say to you as you near the end of treatment. To the outsider this seems like a logical step, but when you’ve been a cancer patient your version of normal is warped beyond recognition. I’ve spent the best part of two years being stabbed with sharp objects and getting naked in front of strangers. I don’t miss those bits, however I do miss hospitals and now that I’m officially a NED (that’s ‘No Evidence of Disease’ as opposed to ‘Non-Educated Delinquent’) I love getting the chance to catch up with the nurses and doctors who treated me. It’s like catching up with old friends.

Those of you who have been through treatment will appreciate how meticulously managed the breast-cancer-treatment-pathway is. From diagnosis to the end of treatment, you have a hotline to the Breast Care Nurses, who hold your hand and guide you every step of the way. When I was hospitalised with an infection after my recent operation, the Breast Care Nurse had me trying on bikinis for my Christmas holiday. Having cancer is rubbish, but they make the journey as painless as possible.

I decided to come clean and admit my love of hospitals in my Macmillan support group last week: ‘My name is Katherine, I’m recovering from cancer and I love hospitals.’ After my confession I discovered I’m not the only one pining for people in blue uniforms.

I make light of my addiction to all things medical but it’s quite hard to let go of all that support with the dark cloud of cancer still hanging over you, because with cancer, it never ever leaves. Once you’ve had a cancer diagnosis, you are forever living with the possibility that it may return. It’s really hard for others to comprehend what this feels like, unless they’ve been there. A typical response is ‘you never know when you’re going to get hit by a bus.’ This may be true, but the difference for people like me, living with the threat of a recurrence, is that I’ve already seen the bus and next time, I don’t know if the driver will hit the brakes.

I will survive

There are many myths about survival and amongst these is the expectation that you should be revelling in your tumour-free status. You’ve survived, therefore you should be grateful, in fact you should be celebrating. There’s the added misconception that surviving cancer makes you a better, stronger person and that you will return to everyday life with a renewed passion screaming ‘I Will Survive’ from the mountain-tops. For many, the reality is quite different and it’s only when treatment ends, that you have time to recollect and make sense of what you’ve been through.

I’ve been through recovery once before, so I know it is possible to regain some sense of normality again, and there are many courses out there aimed at people going through or nearing the end of treatment. I can recommend the ‘Where Now?’ course at the Maggie’s centres, which I did last year, and the Breast Cancer Care ‘Moving Forward’ course.

After my recent recurrence, I managed to wangle my way onto a Macmillan ‘HOPE’ course (Helping Overcome Problems Effectively) which covers topics including managing stress, fatigue, body image and living positively with the fear of recurrence. I wrongly assumed that my previous experience might give me immunity against the emotional fallout that happens post-treatment but it’s been just as difficult this time, if not harder. For this reason it’s really important to meet other people who are going through the same emotional turmoil, if anything to confirm that you’re not going mad. This course was brilliant and not only have I made a whole new bunch of cancer-buddies, it’s given me hope.

There’s no doubt that having cancer changes you and if you’re lucky enough to survive, the best you can do is try and take something positive from the experience. Pre-diagnosis I drifted along, never considering that my time here might be finite, always expecting that good fortune would come my way. Being faced with my mortality has forced me to work out what I do and don’t want from life. Health and happiness are top of my list.

My cancer diagnosis has also encouraged me to develop some new survival strategies for life. The most important one is something I learned in the Girl Guides: ‘Be Prepared.’ You can’t plan your life around the possibility that you might get cancer, however my cancer diagnosis reinforced the importance of having a cushion of support (emotional, practical and financial) there when you need it. The second is to ‘Live in the moment:’ you can’t change the past and you can’t predict the future, so make the most of the present. And finally, remember to look out for that bus!

You can read more from Katherine on her own blog killerkath.wordpress.com and also at Twitter @killerkath

 

 

Blue Mum

Blue Mum

I said in my last post that I wasn’t going to write about cancer anymore, however in the unpredictable relay of life, the cancer-baton has been swiftly passed to my mother who was recently diagnosed with breast cancer. Before you all start panicking, she’ll be fine, she’s just a little blue, really she is.

Mum’s diagnosis came as a massive shock. We were all relieved at the end of my treatment and looking forward to moving on, when we found out. Unlike me, who went from check-up, to life changing diagnosis in less than two hours, my poor mother had to wait nearly a month to find out the extent of her cancer. Waiting for results is horrible and mum was already psyching herself up for wigs and mastectomies by the time her appointment came round.

After a nail-biting month of not knowing what was going on, it was good news and on Thursday she had a small operation to remove the lump and sentinel lymph-node. After that she’ll have 3 weeks of radiotherapy & 5 years of hormone therapy. Job done.

The C-word has become far too familiar in our family of late, although having gone through it once already, we knew what to expect – radioactive injections, blue boobs & radiation burns – we know the drill. Mum is home now and doing really well. I’m just relieved as it could have been so much worse.

Farewell

I’m moving back to Manchester soon and saying goodbye to cancer world. I’ve had nearly a year in Paris Cottage country hospital and although the glorious countryside and Michelin star menu, courtesy of Jim and Doreen, is tempting me to stay, I’m ready to leave now. It’s beautiful here and it’s been a great place to rest and recover but I’m beginning to feel like I’m in Groundhog day. I’ll miss the country walks, the chat with village folk, the old fogies at my tai-chi group (which I secretly think might be a cult), the roast dinners, the getting to know my nieces and nephews, the hanging out with friends old and new, the going for coffee in beautiful places and most of all, the love and support my family & friends have given me over the past year.

Goodbye sheep & goats

Of course I can’t forget the Maggie’s centre which has been such a huge part of my life, as have all the friends I have made through having cancer. It’s a unique bond you form with people who’ve been through the same experience: the sharing of stories and battle scars and the hugs & tears over endless cups of tea. It’s really hard to put into words what Maggie’s does but you don’t have to be brave there, everyone just gets it.

I’ve been busy packing this last week and sorting through the debris of the last year. There are the chemo-beanies, the Picc-line sleeves, my wig Stevie, the surgical-socks and the pic’n mix of drugs left over from chemotherapy, all of which I’m not sure what to do with.  I don’t know whether to bin the lot or keep them for ‘just in case’. Stevie might be dragged out for weddings, but it’s my beanies I’m most attached to. Not only did they keep my head warm when I was ‘as bald as a coot’, they were my armour, they shielded me from prying eyes, so perhaps I’ll frame them or at least give them the burial they deserve.

It’s nearing the anniversary of my diagnosis and my mind is on replay. The anxieties I felt in the weeks before my diagnosis are now replaced by fears of recurrence. I’m now having 6 monthly check-ups and although they recommend vigilance, I have already convinced myself I have metastatic cancer. You might think I’m joking, but if you were in my shoes you’d be just as neurotic. There’s no way of distinguishing between the twinges of tissue healing (normal after a mastectomy), hormonal aches and pains and what could be potentially new tumours. They gave me the all-clear a couple of months ago, however the reality is that even the doctors don’t know unless they find something palpable. Scans are pointless unless you can feel a lump and even the best scanner in the world won’t pick things up at a cellular level. Obsessive self-examination it is then.

http://www.davidshrigley.com

I met up with a cancer-buddy today and like me, she worries about the cancer returning. We were joking about how we’d already started planning the end of our lives, how we laughed! Tie up all those loose ends and have the holiday of a life time, that’s my plan. It sounds morbid but you have to think about these things. I’m not planning on dying any time soon, I’m just keeping my options open.

Now I’m on the other side of my annus-horribilis, I still find myself asking ‘did this all actually happen?’ I got cancer, my house burned down and then my mum got cancer, could life get any worse?! The answer is YES it probably could and if I’ve learned anything from this past year, it’s that life can throw all manner of unexpected shit at you and the best you can do is ‘BE PREPARED’ when the next pile of shit hits the fan. Get knitting that blanket of love and security because you never know when you might need it!

Of course it’s not all bad, good stuff happens too and I’m looking forward to a bit more of that. I have a little thing called life to look forward to.

The End…..nearly

I’ve had a severe case of writers cramp recently, hence the delay since my last post. I’ve started and not finished posts on various topics including – ‘My love/hate relationship with Facebook’ and ‘Magical Thinking & why having Cancer doesn’t make you  immune to house fires’. So, I’ll keep it brief.

Radio gaga

I’m in the final phase of treatment now – radiotherapy – and I’m sorry to report that it’s incredibly dull. There are no needles, blood, or medical emergencies. I’m told localised hair loss can occur, although I can safely say a hairy chest has never been a problem for me. Apart from the 2.5 hour round trip to hospital, my biggest grumble is that I look like a battery with all the + and – on my chest. I reckon I’m super-charged at the moment so if your car won’t start, do give me a call.

Where Now?

I feel like I’m in cancer limbo at the moment. I’m not sure whether to call myself a patient or a survivor. The cancer has gone, yet I’m still being treated for cancer. It’s a strange place to be in.

I’m battle worn and weary and in an ideal world I’d like to jet off to a sunny little island and quietly gather my thoughts. Currently that’s not an option, so the next best thing is a course at Maggie’s – ‘Where Now? –  designed for folk like me, nearing the end of treatment and pondering life after cancer.

The transition from cancer patient back to everyday life is a difficult one and the end of treatment can be a frightening time. Having lived through the nightmare of cancer treatment, survivors are often left feeling abandoned by the medical process.

Re-adjusting to life as it was before, can be problematic and many survivors struggle with mental health issues in the months and years post-treatment. Anxieties about recurrence are common, however there are often financial, emotional and physical issues to contend with.

These David Shrigley rabbits know what they’re talking about

There’s pressure to fit back in and get ‘back to normal’ as soon’ as possible. You’ve survived, therefore you should be grateful, in fact you should be celebrating. There’s the added misconception that surviving cancer somehow makes you a better, stronger person (see Lance Armstrong before his fall from grace) and that you will return to everyday life with a renewed passion, screaming ‘I Will Survive‘ from the mountain-tops. When you don’t want or feel these things it’s hard not to feel like you’ve somehow let the side down.

There’s no doubt that having cancer changes you and if you’re lucky enough to survive, the best you can do is try and take something positive from the experience. I’ve lost so much but I’ve had time to work out what I do and don’t want from life . Health and happiness are top of my list.

When I wander out of my last radiotherapy session in a few weeks time, I will have had no less than 100 cancer related appointments since my diagnosis on the 1st of June last year. My role as cancer patient will come to an end and hopefully never be reprised. I’m not sure how I will feel when I walk out of that final appointment, but if I need it, I know that Maggie’s will be there with open arms.