Guest post: "My cancer's gone – but depression has taken its place"
After approaching cancer treatment with a positive attitude, Felicity Gibson feels like a fraud for asking for help with subsequent mental health issues
Baldy Bites Back
Posted on: Tue 12-Jan-16 15:21:48
(20 comments )
When I was diagnosed with breast cancer, I was absolutely determined to enter my new world with a sock it to 'em attitude. And I did - wow, how I did. I blogged, I talked, I tweeted, Facebooked and Instagrammed (not to mention mammogrammed), proudly showing off my puffy body and baldy head. I didn't care how I looked; I had cancer!
And then, almost as suddenly as it came, it went. I didn't have cancer any more, and it was time to return to normal. Except I had no idea where I could find 'normal', and I wasn't sure how I'd ever be able to return to it if I didn't know the way.
That's when I started sinking. That's when the voice came into my head. You're not good enough, it said. And it told me this repeatedly until my own thoughts became lost and all I could hear was that voice banging against the insides of my brain. You're ugly, you're fat, you're mutilated, your husband's going to leave you, your children hate you, you're a dreadful mother, a terrible wife, a horrible sister and an awful daughter. All these phrases, without fail, became facts in my ragged, bruised, tortured brain. It was exhausting. It still is.
Just before Christmas, I went to the doctor. I was prescribed Propranolol for my anxiety; he didn't consider me in need of anti-depressants. Then, in the two weeks of dark tunnel that was my Christmas and New Year break, something cracked. One morning, after being particularly unpleasant to my husband following an evening of self-medicating with too much gin, I sent out a couple of emails asking for help. As I wrote the emails to organisations offering support for people affected by cancer, I thought I might be sounding a little melodramatic, but I wanted to get them off before anyone else woke up - and before I re-read them and lost my nerve.
I felt as if the months I'd spent managing the physical side of my breast cancer diagnosis with a smile on my face were fraudulent. It was all a lie.
A week or so later the replies started coming in, and I caught sight of my original emails. My words swirled about in front of my eyes; paranoid, anxious, worried, usually very happy marriage, sabotaging all that, help me, sinking.
More than anything, I felt embarrassed; weak. As if the months I'd spent managing the physical side of my breast cancer diagnosis with a smile on my face – mastectomy, chemotherapy, radiotherapy, hormone therapy – were fraudulent. It was all a lie. I wasn't an 'inspiration' or 'brave' or a 'pink hero' or even remotely close to all those terms that got chucked at me when I was fighting the good fight. I was feeble, cowardly and powerless and I had finally done the thing I'd sworn to myself I wouldn't – I'd asked for help.
I never wanted to be seen as a victim. It's impossible to get through a day without being confronted by cancer – in newspaper articles, on billboards, TV ads – and most of the time, it's support for 'victims' that's being offered. I hate that word. Hate it.
At the moment – as far as anyone knows – I don't have cancer. This could change tomorrow, or next week or next month. I live day to day in the shadow of what hold cancer might yet gain on me. I should be carefree, light, but I am not. I wonder if my most difficult battle is still to come.
When you've got cancer you use all the reserves you've got to keep your head above water. People understand that you're going through the mill and might not be up to your usual standards of socialising, making jokes or parenting. You're excused for being rubbish because you've got the best excuse there is. When the cancer has gone you're expected to step right back into the place you left, but you don't fit that vacancy any more because that person is gone. You can't fill the corners properly and there are bits that bulge out of the sides, and all the time while you're trying your hardest to squeeze this square peg into this round hole the voices are screaming at you, reminding you of your failings – the failings cancer left you with.
Here, on the other side of cancer, the noise is deafening, and my head cannot grasp nor engineer the one thing it craves – silence.
By Felicity Gibson
I'm not sure how you're supposed to reply to guest posts, so sorry if this isn't appropriate. I suppose you are defined as having "finished treatment" as surgery, radio, chemo are done but if you are taking tamoxifen or letrazole or something similar, this may very well be the side effects of them. Just because they are one little pill you take at home, it doesn't mean they are not treatment. They really are powerful and so as well as being effective from a cancer PoV, they can be a bit of a bastard re side effects. Don't expect too much of yourself, most people should appreciate that you don't magically snap back when "treatment is complete". My mum has "had" cancer. I'll not live another day without thinking about cancer.
This really resonates. I knew how to deal with the illness. Brave face, keep positive, don't let the children catch on. Get through it.
But how do I deal with the fact that I am now totally paranoid about recurrence. Am convinced it will come back at some point. And feel ashamed that I don't have a more positive outlook?
Thanks for reading, ladies. I know, there's so much grin and bear it to get through isn't there? The blog helps enormously, more and more it's clear I never was - and never will be - on my own. Felicity X
I finished "active" treatment almost exactly a year ago (am on Exemestane and Prostrap injections) and I still have times of terror of it recurring, but I also have times when I feel I can look forward to the future, and then I feel I am tempting fate and "don't want" to look forward to things just in case it comes back.
All the support is there for you during treatment, but when you suddenly go to 6 months between appointments its SO HARD to believe that you might be OK.
Its very mind over matter, and a friend who is 2 years ahead of me says that with every month and every year, the feelings get better.
Cancer is a life changing experience for a person - I am a far cry from the carefree first time mother with an 11 month old when I was diagnosed, and nobody but somebody has been through it can really understand. But chin up and work on a day at a time and I really think things should feel better in time.
Thanks, Rodent. It's true, it's impossible to 'get' unless you've been through it. I do feel like I'm beginning to mend, slowly... Fx
I'm sorry to read your post.
I haven't had cancer.
I did however go through a horrible experience, which this highlighted the failures of the previous 5 years.
I am not the person I was before. They damaged me too much for me to remain the same. I am a shadow. That bit I get. You have my understanding on that issue.
Hope the support you called out for recently helps you.
Again I apologise if it is not the done thing to comment on guest posts.
After I finished my active breast cancer treatment, I felt a massive slump into many of the feelings you describe. I found articles written by Dr Peter Harvey very helpful.
I've linked to one - the old site that they were on has changed and the links within the articles no longer seem to work (for me at least) But anything he writes is worth a look through if you haven't seen them, Dr Harvey has a very good understanding of the psychological minefield we face when treatment finishes. There are links to other books he suggests are helpful _ haven;t read them so can;t recommend - but they are there if you think you might find them interesting.
Hope you find these useful if you haven't seen them. Thank you for your eloquent post Felicity. I wish you all the best, and am waving across the parapet in my own muddle headed up and down way.
My teenage daughter was treated for cancer, and is thankfully now well. I accompanied her throughout and when the treatment ended, after two years and three months, people expected us to be incredibly happy. In truth I did too! But we weren't and neither were any of the parents who I met at a post treatment information day.
I now think of the way we reacted as similar to post traumatic stress disorder. During diagnosis and treatment, you keep going because it it the only way to get through it. But afterwards, it is all relived and the trauma of what we went through can really hit home.
Now, nearly three years on from that time it is receding, but my daughter has not regained the carefree optimistic personality she once had despite academic and personal success.
It is good to hear this issue being raised and many thanks for doing this to the guest poster and all the other posters too.
My baby sister was diagnosed with cancer. My life as I knew it changed at that point. I had to watch my parents, the 2 strongest people in the world sobbing in terror. All of our lives changed that day. My little sister is now 7 years in remission and has 2 babies of her own. We were all like you for a good couple of years after her treatment ended. I think you have to accept that the person you were has gone and embrace the new person you are. Further down the line we are the closest, happiest family you could ever wish to meet. It's a cliche but we do count our blessings as we have faced the worst and come through it. You will get there so be kind to yourself and take all the support you can find.
That completely resonates for me too! I'm now over a year in from "active" treatment but still dutifully taking the tamoxifen, back at work, back to being a mum, but I'll never be the pre-cancer me again.
Apart from anything else, the physical differences are hard to ignore - no breasts and much much fatter (combination of early menopause caused by ovary removal and the drugs).
I am hugely happy and grateful to still be here, but the new me is not as easy to live with as the old!
Great post, thank you.
I totally get this - my cancer hit me in the middle of a divorce and due to the ongoing divorce being particularly acrimonious the treatment was just another thing to get through. I am 6 months past radiotherapy treatment but trying to get the hormone treatment right is proving far worse - tamoxifen didn't agree with me so have been on injections and tablets but i have had to stop this as the effect on my skin is driving me mad - not sure if i have an infection or its a reaction to the drugs but im back at the screening unit to check me out and investigate another lump. I dont think ive even started to process what ive been through yet - i dont feel like ive been through cancer - fortunately I am already on antidepressants. I cant wait for the day when this is all behind me. Thank you for speaking out about this.
Am right there with you - 3 years after treatment finished and I still don't know how to deal with it. I'm not who I was, but I don't know who I am now. My treatment took my ability with words, and in a job where being quick and articulate is vital this continues to shake me. I'd quite like to hate the cancer for it, to be cross with someone or something for it, but I'm just, well, a bit empty.
That's a bad day. The good days, and they get more frequent, it's all ok and we can carry on. Not sure you ever quite get over writing your own obituary in your head though.
Strength to everyone who deals with this. Oh, and I'm no "victim", not a "sufferer", I'm not brave. I just am.
I dont know what to say really but my mum is going through this now and ive never heard anyone else speak about it. She had lung cancer, had lung removed and no chemo and 6 years clear now. But she is left with such bad depression, anxiety and a major phobia of sleeping (scared she wont wake up) which gives her constant panic attacks and palpatations. She has become an alcoholic. She has asked and asked for help from the doctor, for councelling but the doctor just gives her sedatives which ahe doesnt want.
I feel helpless i dont know how to help her
I'm so sorry you are feeling so low. It is hard but it does get better. Just hang in there. And let people help.
Firstly, I'm so sorry to hear you've been through such an ordeal. And secondly, I know exactly how you feel, in fact I could have written the same. I was diagnosed in July with a large brain tumour at 28. I fell ill overnight. Literally went to bed fine and woke up in ITU after almost passing away.
Within a month I had a craniotomy to remove it. It was fully resected so I wasn't offered any further 'just in case' therapies as it can cause other tumours in the brain.
Everyone said, wow you're so strong, I don't know how you do it and so on. But if someone had told me a few months before, I was going to find out I had this and need major surgery, I would have broke down, saying I couldn't do it. But what choice are we given? My kids were 8,4,3&3. My mum was in bits, my partner nearly saw me die in our bed. I had no choice then to put one foot in front of the other and get on with it. I went down for my surgery excited to be rid of the thing that could kill me.
When I got home, and life went back to (new) normal, I fell to pieces. The kids were at school, started nursery etc, life resumed. Only I hated my new life. The fear of it coming back (currently 50/50 odds) terrified me and left me scared for the future. Instead of being glad to be alive and see my son start reception and my twins start nursery, I was in despair. I was supposed to be relishing my kids, so greatful to be with them, instead I'd snap at the smallest thing as my head was somewhere else, worrying about ifs, whats and maybes.
I'd read an article about some types of antidepressants stimulating brain tumours, so I'm too scared to take any. Research is taking place now as they think certain ones can help keep them under control, but I won't risk taking anything just incase. I took up the offer of seeing a psychologist arranged by my nurses at the brain hospital as they felt I was dealing with it "too well", it did help to cry my heart out to a stranger. Tell her all my fears. Knowing she has no attachment to me. I won't upset her by saying that sometimes I think what was the point in me surviving the night I became critically ill, if I'm going to live my life in fear and in turn be a crappy mum, partner and daughter.
Speaking to her did help. And so did getting my first MRI check up results (all looking good, thank God.) For now, I'm trying really hard to believe my tumour won't come back, I will live to be an old lady, see my grandchildren, not leave my mum without a daughter. I'm trying hard to get back to the old me. Do fun things again. And for me, it starts with forgetting (as much as I can) that this ever happened to me.
I think you've spoken such truth, that only other people who've been where we've been can understand. We should be so happy, but we have a cloud hanging over us. Life will never be the same. People expect you to be so glad you've come through it, but in reality, it's only just began.
I hope you continue to be cancer free and well, in both body and mind in time.
I totally get this too - and I am coming up for 4 year on from my last 'treatment' (am still taking Tamoxifen).
Really interesting to read - I thought it was the menopause or just some kind of depression. I'm just tired the whole time and lacking any energy or oomph, but feel I should be really alive, having 'come through it'.
<Waves to kurrikurri>
I understand. I have recently started doing an exercise and mind/mantra program that I found thru Kris Carr's Crazy Sexy Cancer website. It is for something called Shrink Session by Erin Stutland. Basically it is 5, 20 and 45mn cardio and yoga type sessions that you do while repeating mantras. I thought it sounded a bit lame but there was a 5 day challenge and it really helped reset my mindset. It's about letting go of negative thought patterns and thoughts that might be holding you back. As she says "the thoughts that we have over and over become the beliefs of our lives" And of course the exercise (even the 5 minute sessions) make you feel better. There is one part of it I really like called "Soul Stroll" which you download and listen to while walking/running/biking. I would try that first and see what you think. I think you can download it for free. The website is www.shrinksession.com If you sign up there is also an incredibly supportive facebook group. Its not based around cancer, but I think that could be helpful (although certainly there are people dealing with it too). My other recommendation would be to try Headspace's free 10mn sessions (mindfulness). I wish you all the very best.
My oncologist told me to prioritise being gentle with myself for one year after finishing surgery, chemo and radiotherapy. Your body has been through (and still is with hormone treatment) going through a huge trauma and massive changes so I suppose it's not surprising that we become depressed or anxious.
FWIW - I find all the magazine and tv articles about women cheerfully battling cancer unhelpful. I took the approach that I would deal with the 60% survival rate stats and the trials of treatment and changed body afterwards in whatever way worked best for me. For me that involved occasionally explaining that I was feeling crap despite looking okay (aside from being very very thin) but it was okay as I knew the treatment would end soon.
It's ridiculous to expect patients to go back to normality as soon as treatment has finished. You are changed.
However, four years on I hardly ever think about the cancer.
Give it more time FluffyG - you'll get there. Very best wishes.
I too identify with this, I had a very curable type of tumour and had surgery for this. I was even excited about having the surgery like a previous poster and busy with the recovery process after but now definitely feel different. I've been overeating and worry about every little ache and pain. I have a new sense of getting old, mortality and that bad things can happen to me. Good luck all of you with your recoveries and I hope you get the support you need. I suppose sharing on here is a little help, knowing you're not alone.
The way I've dealt with the most challenging times in my life looks really good. I deal with high pressure very well. But the crash which follows, when things are 'better' is bad. It's like you've used all your reserves getting past those bad times, but then you're left with nothing in you. A lot of people don't understand it, because I think people deal with things so differently. They think, "Things are ok now, what's your problem?" whereas if I'd fallen apart during the challenge, they would have been full of sympathy. I think it's just a different way of dealing with things. It will take time to get over this trauma you have been through. In the meantime, I found Citalopram was really wonderful for me.