Thursday, 22 October 2020

Things we wish we'd known: BRiC's Collective Voice

BRiC provides insightful nuggets of advice that we wish someone had told us at the time than we had to learn through experience.

“I think knowing makes me better able to cope. Not knowing leads to nasty surprises, a lot of fear and sometimes thinking that you're going mad.”

The shock
“I think initially it took me a while to accept or understand that you go into shock upon diagnosis as soon as I realised I could start to get my head round it.”

That everything in your life is about to change
“I wish someone had told me how this would change me and my life forever. That I will forever fear a recurrence and that nobody outside of this community will understand that. I wish I had known that support was vital, that I needed to take care of myself. I'm glad to be here, and I'm grateful. But life has never been the same.”

“Life for me also is not the same....I have had to tell them that I will not be allowed to return to my post due to the physical limitations. It’s really tough.”

“I wish someone had been forthright about having to make permanent adaptations post treatment and how quality of life will be, not may be, affected going forward.”

That the fear of recurrence – it never goes away
“I wish I knew how everyone else around me would move on when treatment was over and get back to ‘normal’ while I still feel mired in fear and fatigue. I wish I’d known how hard it would be to explain to those who haven’t had cancer that the fear never goes, that you can’t just ‘get over it’. That every ache, pain, scan, test is terrifying and that being told ‘don’t worry about it’ is frustrating and diminishes how real the fear is.”

"that once you have secondaries this fear does not go away. Scans are more frequent and any hint of progression throws life back up in the air as you run through another line of treatment. Ongoing scanxiety is all too real"

That I will have a meltdown after active treatment
“At the end of active treatment i had a complete emotional meltdown and seriously considered suicide. I felt i couldn't tell the medical team who had worked so hard to get me to that time. When i did break down during Herceptin treatment i was told these feelings are common at the end of active treatment and especially after sepsis (which i'd been hospitalised with weeks before). I was furious that i wasn't warned to look out for this, i spent weeks in emotional agony terrified to ask for help.”

“my breast surgeon told me at my first appointment when diagnosed don't worry I'm confident we can cure you. Well yes you cut the cancer out but now the fun really starts and I wasn't prepared for that”

“I wish someone had told me that after treatment finished I wouldn’t be able to forget about it as if it had never happened.”

That end of active treatment was the beginning of my journey

“I wish someone had told me the truth when I walked away from my final radiotherapy: the truth that this was the beginning of the journey rather than the end. I would also like to have known how dismissive some friends and family would be about any continuing worries. Almost all greeted me with 'well that's done, how lucky it was caught early, all better now.' I would like to have been informed about secondary breast cancer, and I wish someone had told me how lonely the fear would feel”

“I remember my family took me out to dinner to celebrate. I couldn't eat and spent the evening fighting back tears. Then I stayed in bed for several days, exhausted to the core.”

What Chemobrain is

“I wish I knew about chemobrain and forgetfulness, memory loss, difficulty concentrating and paying attention, and how this can affect my self confidence and self-esteem for a long time. I wish I was told that I can be feeling like a zombie and that it will be hard to go back to work.”

“I wish I had been warned about the negative cognitive effects of chemotherapy long after treatment has finished and what to do to improve brain function recovery.”

That I need time to grieve my losses
“I wish someone had told me a breast cancer diagnosis means you have to give yourself time and space to grieve your losses. You lose breasts, hair, feeling healthy and carefree, your femininity, the woman you used to be beforehand, your sanity and all in one fell swoop. Nothing will ever be the same again so, be kind to yourself."

“I wish someone had told me that the psychological impact on my hair would be bigger than the impact of the mastectomy. As you say knowledge is power (or as Foucault would say power (those who set the agenda) is knowledge”

“I wish I had known that I would grieve losses that I had no idea of.”

“I wish someone had told me that my hair loss after the first chemo was so dramatic I wish someone had told me the angst will go and I will be fine”

That hormone therapy can affect your sexuality

“I wish someone had told me about the lack of sex and intimacy lack of libido.”

“I wish someone had told me that I would fear sex and that it would be painful because of lack of estrogen due to Tamoxifen.”

“I wish somebody had told me about how Letrozole on top of ovarian radiation would cause vaginal atrophy making sex painful and ….. eradication of a healthy libido. It’s keeping me alive and of course I’m grateful for that but it’s the fact the impact of the drug on my body has never been discussed. I wish somebody had told me that worrying is an utter waste of time because life is short”

“Then no mention of the impact of the hormone therapy. I do wish the doctors had been honest, realistic.”

That treatment after-effects are harsh

“I wish someone had told me about the after- effects of treatment also. The pain from bones and joints, damaged intestines severe neuropathy, developed arthritis in my hands from anastrozole, and the psychological effects. I was always a happy person, now I have become a bit more serious, developed depression, thinking about the future and reoccurrence, was told I have only an 18% chance of being alive in ten years. I sometimes wonder was it all worth it. But life goes on and we have to change and face new challenges “

“I wish that I was told about how Tamoxifen and AIs would affect you cognitively, reduce your libido and make intimacy painful and difficult. “

“I wish I'd been told that radiotherapy doesn't just make the breast firm, it can also cause distortion and feel painful to touch.”

“I wish someone had told me about post mastectomy pain and nerve pain straight after surgery. It was a shock and frightening the different pains and sensations I had. Now I’m left with pain that no one seems to think is bad enough to worry about because I manage without painkillers. It has a huge effect on me emotionally though.”

That I could suffer chronic fatigue

“that I would have to alter my working patterns in order to manage the chronic fatigue.”

“I wish I had known how much the fatigue would challenge me in the long term. I am still suffering with it 9 years later and when I get tired I get weepy and irrational which I hate.”

“Fatigue meant l eventually had to give up my teaching job.....just didn’t have the same stamina either.”

What secondary breast cancer is

“I wish someone had told me the stats on primary BC developing in to secondary BC, and what signs to look out for. I thought when I had “beaten” it, that that would be it....then less than a year later.....BAM.

“I wish that secondaries were more talked about and less of a taboo conversation...”
That I would experience menopause

“I wish I knew that I would experience menopause and what to expect .... this has been so hard for me.

That the positivity cloak can be too heavy to wear

“I wish someone had told me about how much pressure there would be to be 'positive' (not just realistic and rational) and that there are so many possible reasons that 'it was my fault' (which it ain't).”

“I hate the implied pressure of “you must be positive, or else”! Or worse still the implied finger of blame “you brought this upon yourself by your lifestyle choices”! Yes I enjoyed cake/chocolates/a glass of wine/carried a little extra weight just like thousands of other women who DO NOT get diagnosed with cancer!”

“if I had a pound for every time I’d been told how positive I am, I’d be spending the rest of my life on the Riviera. The references to positivity are often used by well meaning people when they don’t know what else to say: ‘be postive’, ‘stay positive’, I don’t think the cancer really listens “

“the first moment i realised it was bad news was when the nurse in the ultrasound suite said something like "a positive attitude is so important" i wasn't feeling positive then and it made me feel like a failure.”

"So much better if told that need time to mourn - will pick self up again ... but also positivity and battling, etc. ultimately doesn't decide the outcome!”

That my medical team could have pre-warned me about side effects

“I wish the hospital were more honest about the permanent side effects and not just tell you about the side effects during active treatment.

“I wish the medical team were more upfront about recovery time, likelihood of complications post treatment eg Lymphoedema and cellulitis to name but two.”

“I specifically asked the medical team to tell me everything about the treatment and what could happen but all I got were booklets that suggested that the majority of patients would be back to “normal” circa 12/18 months post treatment what a load of wishful thinking that was.”

“I don't think I really wanted to know about what was coming in terms of treatment and after effects.....I would have spent too much time worrying about the possible impending problems.......saying that, I have been very lucky in that if I had a problem, I had a good unit/team at the hospital and online, so I could ring/ask questions and get answers almost immediately. That was a life saver. I put my trust in what they were telling me was going to be the most effective treatment”

That I would never feel the same again
“But most of all I really wished someone had pre warned me that I would never ever feel well again (as I had pre treatment) and that it would become my new normal”

“I wish I had known at diagnosis that the impact of treatment was not just the first months/year but so much more long-lasting.”

That cancer is NOT a battle to win or lose

“I hate the fight/battle language. Makes it seems that those who die of cancer are weak or failures in some.”

“I feel like that word has been thrown at me whenever I’ve tried to tell someone how I’m feeling. It makes me feel like I’m failing. When I felt so low last week and posted on this page it was so lovely not to hear it”

“I’ve found friends and family very hard to deal with and pretty much avoid them so I don’t have to try to explain myself.”

That support groups are invaluable

“Mentally you understand the physical side of the op, but the psychological side feels somewhat neglected. They keep saying there's support, but there's a long waiting list to access it”

“After my active treatment I found BRiC and with it the emotional support and understanding I need to keep me going.”

“Couldn’t have got this far without these kinds of support groups.”

“We need more timely info throughout our treatment and beyond - and an easy way of accessing it”

That the ‘new normal’ is hard to identify with
“that ‘normal’ doesn’t happen for many of us - then everyone around us thinks we’re just crap moaners ...”

“I have yet to come across one of those ‘back to normal in 12-18 months’ ladies. Good for her if she is out there but this is not achievable or real for the majority of us”

“I’d love to meet one just to find out why she’s so different to the rest of us mere mortals”

“When I saw him (my surgeon) last month about the continual pain, I was told I’ve got to stop worrying about cancer now and the pain will stop. Felt really told off.”

1 comment:

Rose Jurgen said...
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