COVERING ALL THE BASES

Image: Freepik #brca2 #genemutation #breastcancer #ovariancancer #previvor #keepingmylife

I feel it is time to write an educational piece based on some guidelines regarding interactions with people who have a BRCA 1 or 2 gene mutation. Words or actions may impact someone more than you know, whether it is for better or worse. This BRCA2 journey is emotionally exhausting to say the least... and so, it is helpful to understand how to approach it as an outsider. This is purely to educate and assist others.

Keeping My Life – Its purpose.

The purpose of the ‘Keeping My Life’ blog is not only a way to process my thoughts through a written outlet, however to generate awareness of the BRCA gene mutation, its consequences and most importantly, a form of education, if it helps save someone else's life then my job here is worthwhile. Let me be clear, this is not a game, the notion that cancer may develop within me on any given day or time is real, it may well already be. I am a real person with thoughts, feelings and future prospects.

I truly hope that one day ‘Keeping My Life’ will help someone going through the same journey, help them to know that they are not alone, that their thoughts, emotions and experiences are justified. It may also help educate the people surrounding them, just to assist in knowing what they are going through. I know for one, that many people in my support network, friends or family, can not comprehend the level of torment I am enduring.

Let me help you understand…. knowing that I have the BRCA2 gene mutation is both a blessing and a curse. Some days are torture, I overthink things, I have nightmares, I am scared as hell and it all is rather tormenting. Other days, I am empowered by my decision to kick cancer’s butt before it has a chance to take hold, I know that I am doing the right thing for not only me, however for my families sake and I am grateful and blessed to have the knowledge to do so. This journey is a constant emotional roller-coaster. I am not asking for sympathy, just a little empathy and support in any way you can, no matter what it looks like.

Covering all the bases.

Anyone who knows me personally, understands that I constantly seek knowledge. I am a researcher. I look at things realistically and explore all options. I cover all the bases! Do not think for one second that I have not researched every diminutive option available to me whether it be about the cancer risks and if I can reduce these in any other way, the preventative surgeries, public versus private surgery options, pre-cancer clinical trials, annual monitoring, preventative medication, and the crippling financial options to cover the surgeries, pre and post-surgery care and my husband’s time off from work to be the main caregiver to our young children.

It is fair to say that not everyone understands the consequences of having a BRCA gene mutation and the emotional roller-coaster that people on this journey experience. I have acknowledged what my sister has gone through with her breast cancer journey, I see it in the support groups I am part of and I feel if people were educated, they will be aware of the impact they have on others. So here are some helpful guidelines and suggestions to assist you when you are in the presence of someone going through a BRCA journey. Some are relative to certain BRCA journeys and others not.

THE DON’TS - What NOT to say.

At least you are getting a new set of boobs!

NO! NEVER SAY THIS! As mentioned in my previous blog posts, I am happy with the breasts I currently have and if I did not think having a prophylactic double mastectomy and reconstruction was necessary, I would not do it! I mean, no one in their right mind would even consider putting themselves through this if it was not necessary.

How about you get a smaller or larger cup size?

Really? Nope! Do not even! See comment above.

Why don’t you go through the public system?

Ok, there are several reasons here however I will only go into the main one being that I will be put on a waiting list, some people in my support group have waited up to four years for their surgery because, and rightly so, the cancer patients get preference. Given the high risk age I am currently entering, time is of the essence, I really do not have this option. Unfortunately, I may as well sit around and wait for the cancer to develop before choosing the public system.

Maybe you could get implants instead of DIEP reconstruction as it is cheaper and less invasive!

This really is a personal choice, so you are questioning a decision that has been made based on much research and consideration. I have an idea of ultimately how I would like to look and feel at the end of my reconstruction surgery. The end result is vastly different between both these options. Yes there are pro's and con's to both reconstruction options, however all has been carefully considered.

At least you will get a tummy tuck with the DIEP reconstruction!

While this is true, and yes it can be seen as a positive, it is a necessary part of the DIEP surgery and it has possible complications and repercussions. There are several things that can go wrong here but let’s not focus on that. The recovery time is substantial with this surgery however I feel that it is absolutely worth it. A downside to this type of reconstruction is when I undergo the second cancer risk reducing surgery, the bilateral salipingo oophorectomy (removal of ovaries and fallopian tubes), the surgery will take a little longer as it is more complex due to the rearrangement of abdominal tissues from the DIEP reconstruction. This option will give me a nice big scar from hip to hip and around my belly button which I will see for the rest of my life. I also will need to undergo physical therapy to re-train my abdominal muscles. So while I might look wonderful after all the healing, physical therapy and emotions of going through such major surgery, there is a long road ahead.

At least you won't have to deal with menstruation any more.

Ok, while this may be the case after I have my extraordinary organs that created my children callously removed from my body (the ovaries and fallopian tubes), there are other things I will have to deal with that are a lot worse.... like surgical menopause which is a hell of a lot harder to deal with than spontaneous menopause... my breast surgeon advised me that her patients have told her after surgery feels like you have been run over by a truck, and then had that truck reverse back over you! Not to mention the long lasting consequential effects of having those organs removed which not only throw your body into a hormonal upheaval, however also cast a shadow on possible cardiovascular, bone and mental health issues, just to mention a few.

Oh well you just have to deal with the cards you have been dealt!

Do not even get me started on this one!!!! It is not going to end well for me or you!!!

Surely you can access financial assistance through insurance or Centrelink?

No! Believe me, as stated above, I have researched every option and even received advice from my financial advisor. This is why I am currently saving what I can and fundraising support from you in order to assist in the funds required to undergo the first surgery, the prophylactic double mastectomy and breast reconstruction.

Maybe you should stop breastfeeding and just get the surgery!

This one….. it is close to my heart and what you need to understand is that breastfeeding for me is not only a personal journey between me and my babe, it is this amazing thing that my body is currently doing that I will never be able to do again after the double mastectomy as the milk ducts and entire breast tissues will all be removed. Breastfeeding, for me, is special. How awesome is it that I can continue to nourish my babe for now. I wish to do this for as long as I possibly can without jeopardising my health and cancer risk. My plastic surgeon has advised I am required to cease breastfeeding three months before my surgery. My breast surgeon has suggested it is fine to breastfeed until about 12 months, given that I will be 39 this year, however has stressed that I also need to have the surgery before age 40. Hence the timing of stopping breastfeeding to have the surgery is something I struggle with daily and is the main point that upsets me the most.

THE DO’s - More favourable things to say or offer.

Showing your support through words

Acknowledge the challenging journey by offering words of support or understanding. There are so many ways to do this, however here are just a few simple suggestions:

“I’m here for you if you need me”

“What you are dealing with is crap”

“You are doing the right thing”

“You are beautiful, strong and you will get through this”

“I can help you out after your surgery”

Offer financial support

Offerings of financial support are very much appreciated and acknowledged at this point in time. We are a single income family of five… there is a mortgage, bills, food and other such expenses to fund before I am able to work in surgery savings into our budget. Contrary to my children's belief, no, there is no money tree in our back yard... however if anyone comes across where to get one please let me know! Hence, I am truly grateful for the fundraising support I have received from my Facebook page, my beautiful mother’s group tribe and local Inverleigh, Winchelsea and Bannockburn communities. There really are some generous people out there. If you need help, do not ever be ashamed to ask for it.

Offer assistance post surgery

It is expected that I will endure a somewhat lengthy recovery period after the prophylactic double mastectomy and DIEP breast reconstruction, up to three months’ worth. For this time I expect to be incapacitated and unable to do any lifting and will have limited movement so I will not be able to do simple things such as household duties, cook, clean and care for my three young children. My duties will include resting on the couch, possibly some Netflix and consuming food that makes me happy. So I will need help! Any help required might look similar to that after having a newborn, but without the baby. Things such as providing cooked meals and snacks, doing dishes, washing, household cleaning, caring for the children, helping with school/kinder/daycare drop off or pick up or even taking them off our hands for a play date would be extremely helpful.

Normality

As mentioned above, I do not seek sympathy, however empathy would be friendlier. Help me to feel normal especially after the surgery when I will feel anything other than normal. Going through this journey and not exactly knowing what is to come, however researching it and seeing my sister going through it first-hand terrifies me immensely. I have been told to expect some of the toughest days that I will ever encounter.

I am having trouble coming to grips with the fact that my breasts will be completely removed and replaced with something that will never be the same, that I may never regain full feeling in my chest, that the organs that helped create life will be removed with a slice of the knife, that ultimately, my body will undergo a surgical massacre. Yes I’m freaking out! So post surgery, offer me a friendly face, come Netflix and chill with me, bring me my favourite treats (chocolate and salt and vinegar chips will do nicely! Haha.), send me a message to check in, come for a slow walk with me once I am able to do so. Most importantly, do not forget to check in months down the track. The recovery process will go far beyond the physical healing of surgical incisions, it will continue to be a journey of physical and mental rehabilitation.

Adjustment disorder.

According to Medline Plus, ‘adjustment disorder is a group of symptoms such as stress, feeling sad or hopeless, and physical symptoms that can occur after you undergo a stressful life event.’ These symptoms occur when someone is having a hard time coping and/or the reaction is stronger than expected.

I feel that this disorder is easily experienced by anyone on the BRCA journey. If you happen to be on the other side of a vent or emotional breakdown post surgery this may be why. So please do be kind, offer support, listen without judgement and offer some sort of general nicety.

And so the journey continues…

---

Reference credits:

Medline Plus https://medlineplus.gov/ency/article/000932.htm