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Be Your Own Hero

lizLearning to Live Again

Some days, it feels like everywhere I look I am surrounded by posters & billboards. I see a beautiful woman, grinning from ear to ear, proudly announcing that they've beaten cancer and are now jumping out of a plane, or running a marathon, or having a coffee morning or any of the other fantastic things people might do.

I'm not knocking anyone who does this, but those posters and billboards are not the reality of long-term cancer survival.

In reality, we are not jumping out of planes or running marathons. We are trying to figure out how to live again after something so traumatic.

How Not To Survive

I have been a cancer survivor for more than twice the time I lived without it. I was 14 at diagnosis and am now in my early 40's.

I've probably ticked every box of how not to survive cancer. we are not jumping out of planes or running marathons. We are trying to figure out how to live again after something so traumatic.

I spent nearly two decades in denial about what had happened to me. I couldn't see my scar; I couldn't feel the metal in my spine. I could pretty much pretend it never happened. But it did. And it needs to be dealt with. No matter how long its been.

The Super-Cancer-Survivor

When I say, 'Be your own hero,' I mean know your own limits. We are pushed every day with images and articles about how someone has survived this disease and then gone on to do something amazing.

But hang on. You survived cancer. That's pretty amazing in itself.

In this fast-moving world the hardest thing I've found is the feeling of having to be a Super-Cancer-Survivor. I have pushed my body past its own personal limit so many times, just to avoid having to explain that I can't do something because I had cancer.

Know what you can do and where your limits are. As survivors our bodies have been through something it shouldn't go through and made it out the other side, but the effects don't go away. They change parts of us permanently. They linger and they sit in the shadows reminding us why we can't do what others can.

Struggling to Feel Normal’ Life after cancer

We are bombarded with positive articles in the press every day, but we never see the articles we need to see. Where are the articles about survivors who are fighting the biggest battle? The survivors trying to find a new normal, in a new body, while figuring out where we sit in the world?

Surviving cancer isn't a brief period of illness then recovery. One of my biggest mistakes has been to give my cancer experience the same level of concern as I would to getting over flu.

I would spout out my story 'I had cancer as a kid and I've got some metal in my back' as if I was talking about having a bad case of measles and then change the subject quickly. I would carry three bags of shopping and never ask for help as I didn't want people to think I was a cancer let down. I would be the one who would drop everything and make things happen, because I wanted to prove I was that Super-Cancer-Survivor.

Acceptance life after cancer liz

Give yourself a break. Acknowledge that your body *is* different, and that's OK.

Acknowledging a new normal is so important. Trying to become the person you were before can be so damaging and bloody tiring. Believe me, I tried for two decades and it half killed me.

Cancer survivorship is for life, but it doesn't mean it's a life with cancer hanging over your shoulder like a bad shadow. It means we will forever be different than we were before and if we accept our new normal it makes survivorship easier. As we're in it for the long run and none of us have any plans to go anywhere soon, let's make life a little less hard.

I've been a survivor for 29 years this summer and I would say, in all honesty, that acceptance makes life a ton easier. I fought against it in every way for such a long time and since I've finally accepted my body for what it is, for what I've achieved, and for how far I've come, life is a lot more enjoyable.

My hero is ME. I'm here and I'm still alive.

Still not going to jump out of a plane though... 

 

A Bit About Me: 

My name is Liz and I was diagnosed with an ‘aggressive osteoblastoma’ in two vertebrae in my spine on my 14th birthday in 1989. This was treated with a lot of surgery, metalwork in my back to replace the destroyed bone and hold me together, then 6 weeks of radiotherapy to kill off any remaining critters.

I spent two decades in blissful denial about all of the above until late effects started knocking on the door. In the last five years I have had numerous skin cancers removed from the radiation field, these have always been Basal Cell Carcinomas - benign, easy to remove, won't kill you, but still not what you need. In the last 6 months I have developed delayed radiation induced plexopathy which it seems is the effects of 1989 style radiotherapy and I am slowly losing the use of my dominant arm which, again, won't kill me but does turn me into a bitter cow at times! Cancer survival is a long term relationship that none of us want to be in, but we're in it whether we like it or not.

Feel free to say hi on Twitter @thesaltiestcow or have a nose at my blog.

 

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Discussion

Iram (not verified)

Thank you so much for this. It's the best Christmas present. Now I know I'm not the only one.

The Salty Cow

Sorry I've only just seen this reply but I'm so glad you've read it. Realising that you're not the only one is the best feeling x

Val (not verified)

Thanks for sharing this - I’m struggling with my new normal at the moment, been a difficult Christmas. This helped.

Frances B

Thanks for sharing your thoughts which have been a great help. This has been my first Xmas since surgery and it has been very difficult as the family thought I would do all the preparations on my own as every year. Shopping, cooking, presents, etc. etc. I just sat down and cried and everyone was amazed!!! I cannot return to what was normal as my life has totally changed with new values and new expectations and if the family do not like it then it is too bad. I will look after ME now and know my limitations. Excuse the rant I am just so tired but things are going to change.

The Salty Cow

It's really hard at first to go from being super mum to putting yourself first, the more you do it and the more you explain why people start to understand that things have changed and that you do need to put yourself first. I hope you're getting the time to do this x

Val Davies (not verified)

So true.

Anonymous (not verified)

I had a head and neck cancer -nasopharyngeal carcinoma - in 2009 and beat the odds with intense and extremely debilitating radiotherapy and chemotherapy. It left me with permanent damage: neuropathic pain in feet and hands, no smell, no taste, no saliva, difficulty swallowing, a crook ear and daily fatigue but I’m still here and grateful for each moment. Your article is a great reflection, well rooted in the reality of a new “normal.” Just getting through each day or long term is something, with all its joys, fears, adjustments and getting on with life in a new and totally different space is challenging and enough. I was once asked how it felt to be normal again - and I just glossed over it because it’s too complicated, too difficult to have to explain and so untrue. I vividly remember being told my cancer was gone but with the rider that it may or may not return. Oncologists never say 100% cure. I get it. I didn’t go and dance in the street or do a bungee jump or run a marathon. I simply went home and had my first solid food in almost a year - scrambled eggs - and it gave wonderful grounding and solace. I just sat quietly, deep with gratitude, yet very emotional about the journey that has been and those mixed feelings stay with you each day thereafter. In my work with the Cancer Council I discovered that all who have been touched by this most insidious disease and got through the dark tunnel share a profound, instinctive ability to simply connect because we’ve all been there and in so many ways still are. Just being alive is both joyous yet dark. This is why so much more work is being done now by doctors and others to better understand survivorship and its complexities, well after the last treatment. Stay well, do the best you can and know it’s ok to just be joyous about the simple, the ordinary, the different and the everyday.
Tony

The Salty Cow

Thank you Tony for your kind words, you're so right x

Alison Moore (not verified)

Thank you for sharing your experience - it’s encouraging to know that others have travelled a similar emotional path. I was diagnosed with Hodgkin’s lymphoma in 1973, when I was 23, and treated with total nodal irradiation and six courses of chemo. This type of treatment was still relatively untried in the UK, and no promises were made about the prognosis, but it turned out to be successful, and here I still am, cancer-free. Like you, I thought I could put the whole thing behind me, and just get on with my life. But thirty years after the treatment, late effects started to emerge - I’ve written about this elsewhere on this site. The difficulty I now face is that I am no longer eligible for full ‘cancer heroine’ status - I haven’t actually got cancer (and I’ve never been the sporty type). But I do have lung fibrosis, wasted muscles, autonomic dysfunction, peripheral neuropathy, all down to radiadition and chemo damage, which combine to make me virtually unable to walk - I get breathless, am easily tired and can’t stay upright for long and my balance is poor. My husband and I have found ways of doing things which mean that I can still lead a full life -I have a blue badge and a wheelchair which are invaluable - but I have found it hard to get health professionals to understand that I’m not depressed, I’m not hiding behind physical symptoms to avoid facing life, or simply an elderly lady who needs to be cajoled into switching off daytime TV (which I don’t watch anyway), joining a. ‘gentle exercise class’, I’m exhorted to have a positive attitude and to push myself. I thought I might be getting a bit paranoid at first, but a few weeks ago I broke my ankle, and because I don’t have the strength to use crutches reliably, I’m having to spend six to eight weeks in a local community hospital. At 69 I’m considerably younger than many of my fellow patients, but the nurses treat me as though I needed ‘encouragement’ to do more for myself, try to be more independent, and tell me that my mobility will get better with practice. One nurse observed ‘You blame everything you can’t do on the radiotherapy, don’t you?’ To which I could only answer ‘Yes, and the chemo’. It isn’t blame, though. Nobody is at fault . It’s simply faving reality. These late effects, with some variations , affect pretty much everybody who received similar treatment in the 70s and 80s, but no health professional is likely to meet more than one or two sufferers in their professional lifetime, and there is little publicity because there’s no obvious way of reversing what is in fact a complex set of injuries, not a disease process, and so there’s no incentive for research. And it’s not as. If we have cancer, is it? Isn’t it enough that we've survived? Well, of course it is ... nearly! But I do hope that for those who come after me, when long-term survival becomes commoner, the issue will become higher-profile and will receive the attention it deserves. In the meantime. Knowing that you and others ‘get it’ is hugely supportive.

The Salty Cow

Thank you Alison, I know from reading your posts on here that you most certainly get it. We're in this strange situation where our cancer was decades ago so we don't feel like a cancer patient yet the late effects are current and progressive so it feels very now. Kind of in no man's land of survival yet progressively deteriorating. I do blame all of my issues on radiation, it doesn't mean I'm not grateful for all the treatment I had, it was all they could do at the time. I do hope that by our efforts to talk publicly about late effects more people will be aware of them, I know I'm doing this for the future patients but I hope that the future patients won't need this info x