Posts Tagged ‘Breast Cancer Recurrence’

Here’s my latest Vita blogpost:

http://www.breastcancercare.org.uk/news/blog/my-graduation

After my last post I worried that I might run out of things to talk about. However, cancer is a sneaky and unpredictable disease. Whenever I relax and start thinking about a cancer-free future, the bitch comes back and bites me on the bum.

On 7 May, exactly two years after discovering the first lump, I found out I have cancer again.

Big Crocheted Boob at Manchester Art Gallery

Big Crocheted Boob at Manchester Art Gallery

Last Monday I had a CT scan to determine the size and spread of the disease, and on Wednesday a follow-up appointment to discuss the plan of attack.

Last week I cleared the decks and indulged myself in some major distraction techniques in preparation for bad news. I saw some weird art, tramped over hill and dale and did everything I could to de-stress.

A yoga, massage and meditation binge, in the days leading up to my appointment, really helped. I went to morning meditation on Vesak (Buddha’s birthday), believing that it might nudge the gods in my favour. However, this wasn’t to be.

On Wednesday afternoon I found out that the cancer has spread to my lungs. This means I have secondaries or metastases.

I’m now officially stage 4.

Finding the key

As is the norm with these appointments, it didn’t go as planned. I’d gone expecting a date for surgery. I was really hoping they’d chop off my reconstructed breast, the site of one of the new tumours, but because of the small lesions on my lungs, I’m going straight to chemotherapy.

I’m surprised at how calmly I took the news, but this was probably because the consultant didn’t do the apologetic ‘side-head’ manoeuvre usually associated with breaking bad news. It also helped that he didn’t use the words secondary, metastatic or stage 4. He described the small lesions on my lungs as a puzzle that needs fixing. In his words: ‘We just need to find the key to unlock the puzzle.’ Once we find the key, he hopes that things will ‘settle down’. I burst out laughing when he said this. I’ve never been so underwhelmed by such devastating news.

Breaking bad news

The past few days have all seemed a bit unreal, and it’s only now I’ve begun to tell people that it’s starting to sink in.

Whether you’re a cancer newbie or a career patient like me, the words ‘secondary cancer’ are infected with terror. It was only when I started telling friends that it really hit me.

Breaking bad news can be quite traumatic and I’ve learned from previous experience that it’s easier to wait until you have all the facts before telling everyone. You end up trying to comfort and reassure everybody else that you’ll be OK when you’re the one that needs comforting. This time I only told immediate family and a few close friends until I had more information. Telling fewer people definitely helped soften the blow.

I thought it might help if I read up on the new direction my cancer has taken. However, I just ended up frightening myself so I’ve stopped Googling for now. I am burying my head in the sand, but I would like to enjoy my last few days of freedom before the rollercoaster of cancer treatment begins again.

Treatment

I had all my previous treatment in Scotland where I’m originally from. However, this time I’ve decided to stay in Manchester and I have my first appointment at The Christie in a few days’ time.

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My new home

I feel like I’ve reached a turning point and I think it will be a positive move having my cancer tackled by a different team of experts. It’s the biggest cancer centre in Europe, so being treated there means that I might have the opportunity to take part in trials not available to me in Scotland. It’s also within stumbling distance of my house, so it’s handy for emergencies.

There are many questions that have come to light since my recent diagnosis. I wonder if mistakes were made during my first round of treatment and whether I should have questioned things I wasn’t happy about. Hindsight is a wonderful thing but I can’t change what’s passed. I feel like I’m running out of lives so I’m not taking any chances this time round.

Being vigilant

The nipple tattoo I chatted about in my last post seems so trivial now. However, it was this, along with my lymphatic drainage routine, which led me to discover these new lumps. I discovered a tiny pea-sized lump on my reconstructed breast, right next to my nipple tattoo. The other lump is under my arm, in among scar tissue. I have an area of cording (hardened lymph vessels) in my axilla, but I discovered a new lump in this area, so I went to my GP to get this checked.

I’ve been incredibly unlucky, but I can’t stress highly enough that if something doesn’t feel right, you must get it checked by your GP or breast care team. Get to know your lumps and bumps and trust your own judgement. I delayed going to the doctor because I’d been given the all clear a few months earlier. I’ve been right every time.

Cancer is everywhere

Since my recent diagnosis I feel like a magnet for all things cancer related. I’m convinced there’s someone walking 10 paces ahead of me pasting up Macmillan posters. They are everywhere. People with cancer seem to be following me around too. A woman sat next to me in my Pilates class who had just had a mastectomy. The following day, I ended up sandwiched between two women at the eyebrow salon exchanging cancer-fighting tips. On both occasions I was feeling a bit fragile and I didn’t have the courage to say: ‘I have cancer too!’ Sometimes you’re just not in the mood for tumour talk.

Fun

Regardless of the crappy news I had this week, life goes on and this weekend I’m off to a wedding on Colonsay (in the Hebrides) with a 1920s theme. A friend pointed out that if they’d offered me a double mastectomy I’d be the perfect flapper girl – extreme fancy dress?! It’ll probably be my last social event for some time so I’m really looking forward to letting my hair down before treatment begins and it all falls out.

This weeks’ news means that my blog will take on a dramatic new direction. By the time I write my next post I will have started chemotherapy. I’ve dug out my wig Stevie. I might even get a Scouse Brow. I’m still in good health and I’m determined not to let cancer take over my life.

I hope I can share some tumour-fighting tips with you as I jump on the cancer carousel again.

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

 

 

“Enemy combatants this is your final warning, please evacuate. I repeat this is your final warning!”

Everyone loves a military cliché when it comes to cancer, so my secret mission for this blog post was to try to squeeze in as many as possible. I must stress that military clichés are reserved for people with the disease and there’ll be no bravery awards on my watch.

When I filled out my cancer return for 2012/2013 I wrongly assumed I’d repaid my karmic debt and my recent diagnosis proves that I still have plenty of credits in the bad-shit bank. My sense of normal has been severely warped in the past couple of years and I wonder if I’ve just resigned myself to life being shit, as it took the nice young doctor examining me before surgery to remind me how abnormal my life has become. His four words “you’ve been in the wars” were enough to unleash a torrent of tears.

war on cancer

Two weeks ago I had surgery – axillary clearance – to remove the lymph nodes from my right axilla: that’s the ‘armpit’, or ‘oxter‘ to you and I. In the war against renegade cells, the battleground of my body has been subjected to another assault. Unlike the sentinel node biopsy I had last year, this operation was much more invasive and they ripped out half my armpit. I think the NHS should scrap the latin and start using slang: “Aye we’re gonnae clear yer oxters” sounds much less intimidating than the militaristic “we’re going in for axillary clearance”.

As is the norm in my world, I thought I’d be fully recovered after a couple of days, however it’s taken me much longer to recover than I expected. You’d think my body would be hardened by previous battles but perhaps the relentless chemical and surgical assaults are starting to take their toll. They do a lot of rooting around to get to the nodes, nerves can be damaged, and tissue-fluid can build up in the axilla (armpit). This can result in a number of not very pleasant side effects. 

For the first couple of days, there was a definite rumble in the jungle of my armpit: I was mightily pissed off about having to go through surgery again, so it’s understandable that my armpit might want to communicate its discontent. By the end of the first week I was starting to resemble a human-bagpipe, and could have joined a ceilidh band with the ever-growing bulge and chorus emanating from my right oxter.

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An extreme reaction to axillary lymph node clearance

I’m surprised my body isn’t screaming, the damage that’s been inflicted in the last year: the FECin Chemotherapy; the now seemingly pointless Sentinel node biopsythe Mastectomy with bottom transplant; the skin-shedding Radiotherapy; the ‘let’s give the other one a bit of attention’ Mastopexy; and the bagpipe inducing Axillary lymph node clearance. That’s 4 operations, some heavy duty chemicals and a ton of radiation.

It’s not a competition, however I am considering starting a new Facebook game called “Disease Top Trumps”. Having been diagnosed with cancer twice in the last year, I do get slightly irritated when I read a Facebook status update that says “feeling rubbish today, sore throat 😦 “. It’s all relative and everyone’s entitled to a whinge, but from where I’m standing, anything that can be treated with paracetamol does not require a Facebook status update, and the next time I see one of these updates I’m going to find it hard not to play my cancer top trump: “I HAVE CANCER – WOULD YOU CARE TO SWAP?!” Or maybe I’ll just start doing tumour status updates: “Tumour feels bigger today, think it’s terminal 😦 ” and see what response I get.

I promise I will never give tumour status updates on Facebook, in fact I hope I never have to talk about this insidious disease ever again (at least not my cancer), because on Wednesday something incredible happened. Last week I had appointments, with both the surgical and oncology teams, to get the results from surgery and discuss the rest of my treatment plan. The results were irrelevant, I knew I was starting chemotherapy again in December, I just wanted a date, so that I could book a much needed holiday from the cancer that’s taken over my life for the last 18 months.

My apathy turned to shock, when I received the news, that of the 18 lymph nodes removed, only 1 was cancerous. The minimum requirement for treatment is 4 positive nodes and I only had 1, which means no further treatment, besides monthly injections of Goserelin (Zoladex).

You’re probably wondering how did this happen again? The answer is nobody knows. They can’t tell if the tumour was completely new, or if it stemmed from cells which migrated from the previous site. I had quite a large gap between finishing chemotherapy and having my mastectomy during my last course of treatment, so there’s every possibility that a few cells jumped ship when no-one was looking.

Obviously I’m ecstatic that I don’t have to go through chemotherapy and radiotherapy again, but it’s scuppered my weight loss & hair removal plans. I’ve been fattening myself up in preparation for the chemotherapy I thought I’d be having. The chemotherapy diet is cancer’s best kept secret: ‘Feeling flabby? Watch the pounds melt away on the chemo-diet!’ I also expected to be as bald as a coot by xmas so I gave up on depilation: losing your eyebrows and lashes can make you look like an alien, however it means you don’t have to shave your legs for a whole 6 months. Perhaps if they emphasised these positive side effects of chemotherapy they might get more takers?

Alice

Dorothy and Alice contemplate the meaning of life

Those of you who know me well and who follow my blog will know that this recent recurrence has thrown my whole life into complete disarray, again. Friends and family have commented on how well I’ve coped with my recent diagnosis, but I’m a great believer in bottling things up & letting them out in inappropriate places. I’m joking, it’s actually really hard to contain your emotions when you think you’re going to die, and simple things like a trip to the supermarket are made even more stressful by the prospect of bumping into someone you know or bursting into tears at the checkout. You realise that the small-talk that people make in these environments is mostly just meaningless waffle. When people ask “how are you today?” they don’t want to know the truth and this for me is one of the most difficult parts of having cancer: it’s an exercise in people management. You’re continually thrown into situations where you have to predict and mop up other people’s emotions. Having the disease is stigmatising enough, but I’ve been in so many situations where I’ve lied because I can’t cope with other people’s reaction to my disease. It’s much easier to say “yeah I’ve got breast cancer but I’m feeling really positive and treatment is going really well” than to say “actually I’m beginning to question the meaning of my existence and wondering what I’ve got to live for”. It’s deep man, but it’s normal to ponder these questions when the grim reaper comes a knockin’.

I was ecstatic when they gave me the good news on Wednesday, however my elation has faded into quiet contemplation as I consider the enormity of what I’ve been through. I’ve survived cancer for a second time and I’m trying not to feel bitter about my recurrence, because if I do that, it means the cancer has won. I need time to lick my wounds and get my head around the fact that I’m not going to die before I start thinking about life again. I’ve earned my stripes, I’m hanging up my boots and I hope I never have to face this disease ever again.

Shit happens

It’s been a while since I’ve written anything for my blog, mainly because every-day life is quite dull & I don’t think anyone is interested in knowing what I’ve had for dinner. Given the choice I’d always take dull, or at least normality over drama, however it would seem that ‘Him up There’ is determined to ensure my life will never be that way.

Around a month ago I found a lump in my armpit, on the same side previously affected by cancer. I was due for my 6-monthly check-up at the start of October so I’d pre-warned my breast care nurse about the lump. Pre-warning the breast-care-team meant, that when I had my check-up a few weeks ago, I was able to have the lump scanned and biopsied on the same day. Two weeks ago I received the devastating news that the cancer is back. Last week I had a CT scan, to determine whether the cancer has spread elsewhere in my body. Since then it’s been an anxious wait for results.

T-shirt

I’ve tried to avoid telling too many people this time, as I couldn’t face the rigmarole of having to break the news to everyone when I don’t have the complete picture myself. I’ve learned from previous experience that telling other people is just as traumatic as finding out yourself. A strange role-reversal occurs, where you end up having to comfort and reassure others that everything is going to be alright – “it’s ok, it’s just a tumour, nothing to worry about” – when you don’t actually know yourself.

Scanxiety

Scanxiety is the worst kind of anxiety, you’re stuck in a no-man’s land, not knowing if you’re going to live or die. There’s the pre-scanxiety leading up to the scan, a brief moment of relief when it’s over, followed by the post-scanxious wait for results. I tried badgering everyone, from the radiographer who did the scan – “sorry I just take the pictures” – to the breast-care nurses who always do their best to reassure, even when they don’t know the answer.

Extreme scanxiety of the heart fluttering variety, which I’ve experienced much of over the past week, is quite terrifying. Every physical ailment becomes a sign that the cancer is spreading. The heart palpitations are caused by a tumour on the heart, the achey back is undoubtedly caused by mets on the spine, and the dizzy spells must mean it’s spread to the brain. It’s only a matter of time before I’m being fed mince & tatties through a plastic tube. On my train journey back to Manchester last week, I felt so rough, I actually wondered if I was dying. This turned out to be a dose of ‘Hand, Foot & Mouth’ caught from one of my mini-relatives.

Conversations and phone messages from health professionals are scrutinised and misinterpreted: they all know you’re going to die, they just want to make you wait 10 days before breaking the news. A message from my consultant which said “ try to enjoy yourself this weekend”, I interpreted as “try to enjoy yourself this weekend because it might be your last!!”. My anxiety levels were so high that the only way was down and I’ve been feeling much calmer these last few days. I’m not resigned to it, but like I’ve said before, shit happens.

That was then, this is now

Although I’ve been psyching myself up for bad-bad news, today I had some good-bad news. The good-bad news is that I’m booked in for surgery next week. My CT scan showed that the cancer is contained and that it hasn’t spread beyond my lymph nodes. Once I’ve recovered from surgery I’ll be having chemotherapy – different drugs this time & I might get to keep my hair – followed by more radiotherapy. It’s not great, but it’s better than the bad-bad news: if it had spread the only option would be palliative chemotherapy.

I’ve only recently started to settle in and enjoy Manchester life again and it’s been good returning to normality, however I’ve decided that my only option is to move back to Scotland for treatment. Although I’ve got an amazing group of friends in Manchester, I know I’ll need the support of my family whilst I go through treatment again. Besides, no-one else can substitute a mum hug when you’re feeling rubbish.

So here I am, back on the cancer merry-go-round. Although the news might come as a bit of a shock to many of you, I’ve had nearly two weeks to come to terms with the fact that the cancer is back. The results from my scan today came as such a huge relief and I feel like I’ve been given a second chance. I’m just ecstatic it’s not metastatic.