Update on Resilience, My Word of the Year

Update on Resilience - My Word of the Year

Improving my Resilience is My Goal for the Year

My word of the year is resilience.  I thought I would update my readers on how my goal of improving my resilience is going.  Resilience means to keep trying despite setbacks, to never give up.  I chose this as my word of the year to inspire me even when I feel like giving up.  

One Year After Being Diagnosed with BRCA2 Genetic Mutation

It is one year since I was diagnosed with BRCA2, a genetic mutation that increases your risk of cancer.  Since I was diagnosed with BRCA2 my life has been altered dramatically.  A year ago I was a productive member of society with a job, and pretty good health.  As soon as I got that diagnosis I knew that I wanted prophylactic surgery.  There was no doubt in my mind.  I have looked after patients with ovarian and breast cancer my entire career and I always had in the back of my mind that I would take any steps to avoid either of them.

What is BRCA2?

Because BRCA2 increases your risk of cancer by so much, and if you do get cancer it’s usually the most aggressive kind, the best treatment is to avoid it.  I had been screening yearly for 10 years leading up to this, and there’s almost a feeling of inevitability about it.  You’re waiting for them to tell you that one of the areas they’ve been watching has become cancerous.  So there was really no decision to make – I was going to have prophylactic surgery.

BRCA2 Mutation Cancer Risk infographic.  For women, the cancer risk is 40-84% of developing breast cancer, 11-27% ovarian cancer and 2-7% pancreatic cancer.  Source: Ovarcome
BRCA2 Mutation Cancer Risk infographic. For women, the cancer risk is 40-84% of developing breast cancer, 11-27% ovarian cancer and 2-7% pancreatic cancer. Source: Ovarcome

I expected both surgeries to go well.  You never consider that there could be complications, the only thing on your mind is getting rid of the offending organs that could give you cancer.  First cab off the rank was my ovaries – a relatively low risk, minimally invasive operation because I had already had a hysterectomy.

Suffering Surgical Complications 

The complication from this relatively small, keyhole operation is rare, but has changed my life.  I went into bladder retention – my bladder was stretched beyond capacity and has not sprung back into shape.  I have an atonic bladder now – it doesn’t work.  It’s probably permanent because the nerves were damaged and the muscle fibres stretched beyond their limits.  Even corrective surgery by a urologist hasn’t made any difference.

There is one positive – because I’m a nurse I can self cathetarise so I don’t need an indwelling catheter.  To be able to pass urine I need to insert a cathetar.  I get really upset about this because at 54 years old, I don’t want to think my bladder is completely stuffed.  But the reality is that it IS stuffed.

More Surgical Complications Post Mastectomies

The complication after the bilateral mastectomies was also rare.  This was another life-changing complication that I’m still dealing with.  I haemorrhaged on the left side post-operatively.  My blood count dropped really low and I needed several blood transfusions and emergency surgery to locate the bleeding area.  The swelling remained for months afterwards.  I needed even more surgery to wash out the cavity and treat  the area for infection.

Lifetime BRCA1 and BRCA2 Cancer Risks for Men.  Many people do not realise that BRCA1 and 2 affects men as well.  Prostate cancer runs in my family with my grandfather, father and brother having it.  Dad also had pancreatic cancer.  Melanoma also runs in my family - brother, sister and son.  Source:  Basser Research Centre for BRCA
Lifetime BRCA1 and BRCA2 Cancer Risks for Men. Many people do not realise that BRCA1 and 2 affects men as well. Prostate cancer runs in my family with my grandfather, father and brother having it. Dad also had pancreatic cancer. Melanoma also runs in my family – brother, sister and son. Source: Basser Research Centre for BRCA

The Physical and Mental Affects of a Prolonged Recovery

My recovery has been prolonged because I wasn’t allowed to do any exercise apart from walking until the swelling subsided.  That meant six months without using my upper body for anything more strenuous than lifting a cup.  When I was finally allowed to do yoga, my muscles went into spasm and I was in severe agony.

I knew that I wouldn’t be able to improve my upper body strength without professional help.  My GP was very understanding and supportive and has much more insight into patients returning to work after injury or surgery.  He referred me to an exercise physiologist to build up my physical strength.  Because I was struggling with the emotional fall-out from all of this, he referred me to a psychologist as well.

Improving Mentally and Physically

It’s approximately 3 months since then.  Emotionally and mentally I’m so much stronger.  My psychologist helps me to look at things from a different point of view, and has given me strategies to deal with the grief and stress.  She doesn’t pat me on the hand and tell me it’s going to be alright.  I need more than that.  I need to work through the emotions that have come up from these surgical complications.

Physically, it’s been a hard slog.  The exercise physiologist can’t increase my exercises too quickly because it can result in severe muscle pain.  I do an hour long program that she gives me, three times a week.  I see her once a week to ensure I’m doing the exercises with the correct technique, and to learn new exercises.

The ultimate goal other than improving my resilience, is to return to work.  My boss has offered to reduce my hours to two shifts a week which will at least enable me to return to my job.  She has been incredibly supportive throughout the whole ordeal.  I couldn’t wish for a better boss.  If I continue to improve at my current rate, I will return to work in April.

Lack of Understanding From My Surgeon

Today I had a post operative visit with my breast surgeon.  There is always a little bit of anxiety leading up to these appointments because I’ve had so many occasions where I felt really upset.  Usually his first question is  “Are you back at work yet?”.  Despite me explaining that my employer won’t let me go back until I am back to 100% capacity and able to do CPR and heavy manual handling, he never understood.   I always felt like he was judging me for it – as if I didn’t want to work.  He even asked me straight out a few times if I wanted to work.  

Not once has he ever taken the blame for what happened to me.  In his opinion, my post-op haemorrhage couldn’t possibly be his fault.  He tried to shift the blame, even sent me to see a haematologist to find out if I had a bleeding disorder.  

Post-operative Complications Can and Do Happen

As a nurse, I know that post-op complications can happen.  When they consent you for any procedure large or small, part of the consent process is to discuss the complications that may happen.  I’ve only seen a haemorrhage after breast surgery once in my career and it was as dramatic as mine.  

I’ve been unlucky to suffer a few complications post surgery previously so I have a better understanding than most people.  That is why I’ve never blamed the haemorrhage on my surgeon.  But the fact that he tries to shift the blame to me has worn thin.  I’m not contemplating getting compensation for this, or suing him, but a lot of people would. 

The Cost of a Prolonged Recovery 

This has cost me a massive amount of money in lost wages and medical expenses and I’m just lucky I had income protection insurance through my superannuation fund.  I don’t live my life with regrets usually but there have been times when I’m really depressed because of the way my life has changed in the last year.  

BRCA and cancer - BRCA1 and 2 increase the risk of cancer for both men and women.  Source: Penn Medicine's Basser Research Centre for BRCA
BRCA and cancer – BRCA1 and 2 increase the risk of cancer for both men and women. Source: Penn Medicine’s Basser Research Centre for BRCA

Even though the last year has been difficult, and my quality of life has changed, I’m still able to be positive about the future.  I wasn’t willing to accept that I would not be able to work again.  At times I have wondered why I try so hard.  Then I count my blessings.  My parents both died of cancer, and it looks like my brother will too (he has advanced prostate cancer).  I have beaten cancer and don’t have that hanging over my head.

Being Resilient and Looking to the Future

Even when things seemed hopeless, I still had the power to change direction.  I wasn’t willing to let fate decide that I would never be well enough to work again.  I sought help.  And I continue to work hard to get back to the person I was, changed in many ways but the old me.  That’s what resilience has meant to me in the last year.

If you would like more information on BRCA genetic mutation and cancer risk, these are the other posts I have written:

Shared on Weekend Coffee Share Linkup on Natalie the Explorer’s blog, Life This Week Linkup on Denyse Whelan’s blog and Senior Salon Linkup on Esme Salon’s blog

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20 Comments

  1. Christina that is an ENORMOUS burden to have had to bear for all those months – I didn’t know about the bladder side of things – which is horrendous to say the least. I’m so sorry for all that you’ve been through. Having worked for a surgeon (the last horror job) and knowing his inablility to relate to patients in a particularly compassionate way, I totally understand how frustrated and upset you’d be with your breast surgeon. I hope things continue to improve and you get back to work by your planned date in April. x

  2. Hi Leanne, I haven’t been ready to share my bladder problems up til now because there’s shame. I’m getting a second opinion from another gynaeurologist just in case there’s something they can do. Yes, doctors’ bedside manner leaves a huge impression on their patients. Thankyou so much for your kind words, it means a lot.

  3. Christina, You’ve been through so much yet you stay positive, you deserve a big Resilience medal. I’m shocked at the breast surgeon’s insensitivity. No patient, especially post-cancer operation, should be made to feel anxious or guilty about returning to work. From my circle of family and friends, some of them are cancer survivors, I learned that these people want to be back their pre-operation routine, including work, because it makes them feel some normalcy and have some control over their day. Please be kind to yourself and let your mind and body recover. I hope your health continues to improve. Thank you for linking with #WeekendCoffeeShare.

    1. Thank you for your beautiful words Natalie. Luckily he’s the only person, professional or personal, that has ever said anything like that. Yes, that is very true that we just want to get back to normal. I want to be a productive member of society again! My surgery was prophylactic thank God – I didn’t have cancer treatment to worry about as well. Regards, Christina

  4. Hi Christina thank you so much for sharing your inner thoughts, feelings and experience with your surgeries and post surgery traumas. You are so brave and I remember interviewing you for the podcast last year and was so inspired by you. I had really no idea that you’ve been having such terrible post-op issues which are permanent. The surgeon certainly has shown no compassion but on the flip side your boss has been supportive and it is wonderful you can return to work soon even on less hours. It will help give you a focus. I admire you and yes your wOTY is a perfect choice. I’m sure at times it would be easy to say ‘why did I do this?’ but you have shown continued strength and resilience all the way. Thank you for being you and we really must organise a coffee IRL. We live next door to each other. xx

    1. Hi Sue, that interview seems so long ago now! I felt stronger emotionally back then, probably because I was optimistic about my recovery time. As time has worn on and my progress has been so slow, my mental health struggled. But I’m getting there and now at least I can see the end in sight. I have never regretted doing the operations, even after all that I’ve gone through. Not having to worry about breast or ovarian cancer is such a weight off my shoulders. Yes, I really look forward to catching up again in real life. Thanks so much for your continued support, I really appreciate it, take care, Christina

  5. You really have been through the mill Christina and I appreciate your honesty and openness throughout your recovery. I do hope you are improving and can only imagine how difficult it is to take it slowly when all you want to do is return to your usual work and activity as quickly as you can but slowly does it. Thanks again for the useful information and for sharing your thoughts.

    1. Hi Deb, thank you so much for your lovely comment. I definitely can’t wait to get some normality back in my routine. I miss my patients and colleagues! Recovery always seems to take longer the more we age. It’s frustrating but it’s how our bodies age. Take care, Christina

  6. Oh goodness….so much to go through amidst an already crazy time. Hoping this year is a year of breakthrough for you and that you are able to inform others with all you have learned and gone through. Thank you for sharing your journey.

    1. Hi Kirstin, Yes having to go through all this with Covid-19 was difficult. I could even have visitors during a few of my hospital stays. Thank you so much for your kind words, I really appreciate them. Regards Christina

  7. I feel privileged to read your story. Resilience is an appropriate word … but brave and courageous also come to mind. Your positivity despite the complications is awe-inspiring. Thank you so much for sharing this deeply personal, yet important message with us.

    1. Hi Molly, what a lovely thing to say – that you feel privileged to read my story. I guess I’ve always been a writer and the posts that come the easiest are the ones I write about my own experiences. I hope that my words help other people. Thank you so much for your lovely comment, regards Christina

  8. Oh wow, I would certainly have fallen in a heap many times so your resilience is phenomenal. I’m sorry you’ve had such challenging experiences. As you say, there’s always a fear of something not working or going wrong but you never really expect it to happen.

    You talk about your background being something that is able to assist you in dealing with what’s come your way but I think your resilience is certainly just as valuable a resource. x

    1. Hi Deborah, Don’t worry, there’s been plenty of times I’ve fallen in a heap! I wonder why some people are dealt so many blows in life and others seem to have an easy road! But we don’t really know what other people are going through – they may be carrying the world on their shoulders. I just hope by sharing my story I can help someone. Thank you so much for your lovely comment, it means a lot, Christina

  9. That is a huge amount to go through. I’m sorry to hear the surgeon’s reactions – I get angry easily now with those types of attitudes from medical staff. Lack of empathy doesn’t belong. To be honest, i nearly didn’t read the post as I feel resilience gets abused by corporate needs (we’re not doing anything wrong by firing people, and increasing workload, you’re just not resilient) but I’m glad I did read now. I hope things keep improving for you.

    1. Hi Vanessa, thank God it’s been the exception rather than the rule for me as most of the medical professionals I have dealt with have been very supportive. Sometimes I think working with them as colleagues before being their patient has worked against me. I agree that there seems to be a lack of empathy there. Thanks so much for your lovely comment, Christina

  10. Oh my goodness what a roller coaster and more you have been riding through medical and surgical misadventures and in your striving for cancer prevention. Sharing so frankly now I hope has eased any kind of ‘shame’ about your bladder damage. I know that we cannot help feel ‘ashamed’ but by telling us about it I hope you can feel the care for you.

    Honestly, the lack of empathy from your surgeon does not fit my idea of good professional care. You can be assured that the surgeon is worried about being sued and so is very defensive.

    Living with what “IS” now for you shows me you are incredible woman of resilience. Thank you for your honesty and update.

    Thanks for being a consistent, caring and contributing blogger to this community I call #lifethisweek. Next week we are sharing our snaps (photos) and that’s an optional prompt. See you next Monday, I hope, as always.
    Denyse.

    1. Hi Denyse, actually you have said it very well – it certainly has felt like a roller coaster at times! One step forward, two steps back. I agree with you about him worrying about being sued – he has never charged me a cent for any consultation since then or even the two further operations I needed to repair the damage. I don’t have the energy or resources to go down that route. Reading the comments on this post has been so lovely – I definitely feel cared for within this community. I’m very happy to be a part of it. Thankyou for your beautiful comment, it means a lot. Christina

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