The Cancer Whisperer

I was 28 when I was diagnosed. Stage 2 Grade 3 cancer. I’m 30 now and in remission.

I’ve been MIA from this website but only because I’ve been busy getting treatment and living life - attending christening, weddings, birthdays and funerals!

I’ve been sliced n diced (mastectomy), nuked (chemo), zapped (radiation) and have been lucky enough to have the spectacular expertise of Prof Pennington do my recon (DIEP Flap).

I’M BACK! Yes, I am an excellent clothes horse because I am a bit like Frankenstein’s patchwork quilt underneath, but scars do heal and I am ok with that.

As my brother likes to tell me, my life is a bit of a country n western song. My sister died, my dad died, I got Jack the Dancer (Cancer), mum had a stroke and Trevor the Beagle died.

I remember asking my dad when I was about 25, "Dad, by the time you were my age, you’d had a rough childhood. You had lost your mother and sister tragically. You were conscripted by your government and fought in a war (he was a Vietnam Veteran) and you were expecting your first child. Didn’t you ever feel like life was being a bit hard on you?"

I distinctly remembering Dad telling me that when you say it like that maybe, but that he’d always felt lucky. I never really understood what he meant until now. I didn’t realise what life had in store for me and that on paper, my life does resemble a country n western sad song. I wouldn’t change anything.

Don’t get me wrong a lot of it was sh*t. But as Babu in the UAE said when I went to bring my sister’s body back, "This is life."

I’ve jokingly started to dubb myself the Cancer Whisperer because I seem to be getting emails/letters from people asking to give advice to the recently diagnosed. I heard of a friend-of-a-friend being diagnosed. She’s 31 and very similar to me in that she has no family history.

I ended up writing her a long letter and in writing that letter, I realised it was more a letter to my 28 yo recently diagnosed self than it was to her.

For myself, for those of you recently diagnosed and for those who like a good yarn.

Here it is!

___________________________________

Dear You,

This is Martin’s sister, Phillipa. Sonya told me what’s going on and she said she’d given you my number. When I was in your situation, the last thing I wanted to do was ring people I hardly knew! So I thought I’d write you a letter.

I hope you’re doing ok. I can’t avoid sounding clichéd, but at the beginning it can feel like you’re on a rollercoaster with no way to get off. You just need to sit tight and ride it out because it is bearable.

You will get through it…albeit with bad hair! That’s been the worst for me. I feel good now. Back to normal. But my hair is still struggling. I’ve had bad hair for all my friends weddings and 30th Birthday Parties! I’ve gone from bald, to patchy, to bad eighties perm to a mullet.

When I was first diagnosed I struggled to find people close to my age to get advice from. Those that I did meet, where the Angelina Jolie type; BRACA1 / 2 gene that had the preventative surgery. They didn’t have chemo/radiation. So dependent on what your treatment plan is like, I’m happy to give you some hot tips that I wish people had told me before I started.

Here are some for where you are right now: Get your money’s worth from your doctors. Write down your questions before you go in because otherwise they tend to fly straight out of you head once they bamboozle you with all their doctor jargon

Post-surgery: Buy tight singlet tops from Myer. The Basque ones that have a V at the front and don’t have shoe-string straps are the best. I may have only had one boob but it was massive and I got paranoid it was flopping all around the place. Also the Ahh Brahs from BigW are better than the ones from Target etc.

Buy a loose-leaf A4 folder to put all your medical crap into…you will accumulate heaps. Ask you GP for copies of stuff like the pathology report.

I had never had any type of surgery before. A mastectomy is a relatively simple procedure. They’re not working on bone or major organs so its relatively painless…more a tightness or slight discomfort from the stitches so don’t stress about the pain. I always said if I have to lose an appendage, better a boob than an arm or a leg. People say stupid stuff. Be prepared! Your bullsh*t tolerance goes out the window so this can get awkward. These are my personal favourites where I had to bite my tongue…or giggle.

Pajama shopping before I go in for surgery: friend pulls out sexy lingerie and says "What about this one….wooo." (she was being serious) Well, maybe you’ll meet a hot doctor and fall in love." Good point because life is exactly like the movies? Not to mention I’ll be at my dating peak with one boob and a bald head! That’s why you get cancer right? To widen your dating pool to doctors.

Sunrise: I was watching the morning show when some hack said that statistics show that if you have more than 10 friends then you have a better chance of surviving cancer. WTF? Mum and Jenny took me out to see a movie after my first surgery. Turns out they didn’t read the synopsis because it was about a dude dying of cancer. Awkward, but still a good movie. "I know this person who had breast cancer and she’s fabulous now, she worked through treatment, it’s all about what you eat…BLAH BLAH BLAH." Breast cancer is a hot ticket item. Everyone has either had it or knows someone who has had it. They’ll tell you what you have to do. How to fix it. You can either smile and say thank you. Or tell them to jam it! It’s a tough decision so I’ll let you decide. You’ve already got it so eat what you want. If you want to fall in a heap for a bit, do it. Just make sure you get back up.

The things people say on Forums can freak you out! They’re either too depressing or too over-the-top positive. I treat them a bit like I do FB. I go on and get what I want but then get off. There are some who are on there ALL the time. I don’t feel I have to vent my frustrations out 24/7 to strangers. Yes I had breast cancer…but it’s not the main point in my story. Use it how best suits you.

Find a good psychologist/councellor who specialises in cancer patients. They’re free. Ask your GP or oncologist. Even if you feel you don’t really need it, still go, the resources are there so use them. My thinking in going was that at the time my family was very sensitive because of Gab (sister) dying so everyone is still hurting. Family deaths, illnesses, they all have an accumulative effect on people. It helps to have someone to talk to who is not emotionally involved with you. You can then say what you really want/feel without hurting people’s feelings. In some ways it will be harder on those closest to you and family members can go to the psychologist as well. I booked my mum in for a couple of sessions which helped. You will become the Kim Kardashian of the cancer world. I told my parents they may as well have taken out an ad in the Daily Advertiser because I’m fairly sure the whole of Wagga knew.

You will get cards from strangers. Emails from random people (that’s me!) Lucky charms and holy medals. It can feel intrusive and strange that people know so much about your personal life. I figure, the more positive energy and thoughts people can send your way the better. Embrace it. Play the cancer card. I always wore my cancer turban to the car mechanics to make sure they didn’t rip me off. Used it to get the tv remote from my dad. This is your time to be selfish. Take the help from others. If the roles were reversed you would do the same so don’t feel guilty.

I’m not sure if this email is helpful. As I said before, you’ll be getting inundated with advice and know-it-all’s. So just chuck this out if you find it unhelpful. I just figured it’s better to send this to you rather than not.

I have Amanda ( my wig ) if you want to borrow it. It’s a good expensive one. Cost me like $400 and I don’t mind loaning it to you. I didn’t think I’d want a wig but it’s handy when you’re feeling well and want to go out without everyone staring at you because you’re a cancer patient. I also have oodles of head scarves and hats. Many of which I didn’t even use. If you want them too let me know.

Chemo Tips:

1. Second week of the first round of chemo is when you’ll get really sick. That’s when your immune system is at its lowest. If you end up with no white blood cells this is when that will happen. Check your temperature and if it goes up even a bit head to your chemo nurse and they’ll sort you out.
2. Hit your Metamucil/benefibre ASAP. I got bum fissures that are apparently common after having babies. They didn’t heal for soooo long. This brought tears to my eyes. Take some laxatives with stool softeners. Prevention is better as once you get them they probably won’t heal til you finish treatment.
3. Get a juicer but make sure you have someone willing to make you lots of juices. Maybe even add the benefibre to that.

Hang in there and be kind to yourself.

Everyone copes in their own way.

If there’s one thing you get out of a situation like you’re in is the realisation of how strong you are and how much the people around you love and care for you.