Tiffany Gray

Story continues - The end of 2022 was upon me and so was the beginning of 2023.  I was seeing my specialist about every 3 months aswell as my GP, making sure I was okay with the medicine and side effects etc.  Then in January 2023 I had my first scans.  I had my first ever mammogram and also an ultrasound.  This was to check to see if anything had spread in the other breast.  They don't do any other scans, as they find it detrimental to run you through lots of other scans.  So there I was having this first mammogram.  Surprisingly it didn't hurt, it was just uncomfortable.  I should have had one years and years ago, because then the story might be a little different.  After the mammogram the assistant went out to check things with the doctor.. she was gone for so long I started to really stress again.. I had been in this position before, and it hadn't ended up good.  I think I was hyperventilating when she came in and said that it all looked fine but they would do the ultrasound aswell as the specialist wanted it.  Thankfully that went good too.  The following week I was back at the specialist and he told me things were looking great.  Now I just had to have my next surgery.. the reconstruction.  That would occur in two months time.. more time to wait and stress.

Back to the story.  So chemo had finished and radiation had finished and then there was, well nothing.  No weekly blood tests, no daily visits.  You feel lost at first.  You get so use to having medical thing after medical thing that when it all finishes, you have no idea what to do.  I did see my oncologist and my surgeon and they both decided to put me on the medication Tamoxifen.  I heard awful things about the drugs you are put on after breast cancer.  The side effects can be really bad, or they can be nothing at all.  I was put on Tamoxifen because I was not officially declared as being menopausal.  Tamoxifen is a drug that reduces the chance that cancer cells can grow when you have hormone positive cancer.  Side effects can be further cancer in another area of your body.. or blood clots.  You are kind of damned if you do and damned if you don't.  But I went on the tamoxifen drug.  I saw my surgeon and he told me that all things were going well, and in six months time I would have my breast reconstruction surgery.  I was not looking forward to this at all.  However, for now, I was doing well, I was clear of medical stuff and I could do some things for me.  I decided to go on a road trip to Queensland with the kids.  Time to make some memories and have some fun before the next steps.

Let's talk about radiation.  After my chemo had finished I was told I would need up to 6 weeks of radiation.  I was referred to a cancer clinic close to my work with the hope that I could have radiation there and then go to work.  Radiation occurs every Monday to Friday for the duration of weeks you require.  I went in for my tests and they told me that I would need 5 weeks of radiation Monday to Friday.  Sweet no problem.  Then they told me the price.... $22K.  Yep, getting sick is really expensive.  Radiation is not covered by private health, it is covered by Medicare and was required to be paid up front... yikes.  You do get a rebate, but as always with Medicare there is a gap.. mine was around $7000.  Still a lot of money.  I ended up having to work out an arrangement with the cancer place so they said the fee was paid each week, and then Medicare would send me the money and then i had to come up with the gap each week (around $1400).  It was trying times.  Radiation itself was okay.  It takes longer to set things up then it does to zap you.  I had to breathe in while the machine wizzed around me.  When you have to hold your breath for 30 seconds for radiation, it can be quite frightening, but I always managed to do it.  One thing that did happen through radiation, was all the squishing to my chest area actually made my breast expander de-inflate.  Through chemo i had needles to the boob/breast expander filling the expander up with water.  Unfortunately the pressing of the chest for radiation made the water leak out.  But that was about the worst of the radiation side of things.  The staff there were absolutely marvellous.  I got to know the nurses and the reception staff who were always so welcoming, so friendly and made you feel important.  I managed to do all five weeks daily radiation while still working every day.  I would just wizz in there first thing in the morning, and then wizz out to work.  On my last day of radiation, it felt like saying goodbye to friends.  But those friends stood there with me while I rang that bell, loud and proud.  It was just before my 49th birthday.  My chemo was done, my radiation was done.  Seven months of intensive cancer treatment and now what?

And the story continues - My chemo regime lasted around 5 months.  The first 4 rounds of chemo were two weeks apart and were very very intensive chemo.  I had every second Thursday off work to go and have my chemo and then rest.  Every other day I worked from home, managing my section at work to ensure things ran as smoothly as possible with me being absent from the office.  My lovely dad took me to every chemo session.  Then after those 4 rounds, I was put onto 12 weeks of a milder chemo.  I mean, chemo is still pretty full on, but the weekly stuff was not as bad as the initial chemo and I started to feel a little bit normal again.  Unfortunately this was the time of covid, so every week I had to do a RAT test and also had to make sure I didn't have any possible covid contacts.  My children however were still attending school and were classroom contacts continually.  I let the hospital know that my kids were contacts, but were not covid positive, and I was definitely not covid positive.  However, being a close contact of a classroom contact meant I could not go into the hospital for my chemo.  I tried so hard to get them to change their mind.  I contacted the Head of Medicine in SA.  I went to the media and did a story.  And then finally common sense prevailed and I was allowed to be put in a separate room for my chemo (my dad was allowed to sit with me for that one too).  But unfortunately one of the weeks I actually got covid (not sure where from) and was unable to get my chemo.  They were not sure how long it would be before I could get it, so I changed to the public system where they were a little bit more relaxed with the covid rules, so as to ensure all their cancer patients could get their life saving chemo.  My dad started taking me to the RAH each week and I would work before and after my chemo session.  But after a few weeks, I felt well enough to drive.  I would work from home, then drive to the hospital. They would hook me up and I would hook up my laptop and work, while answering phone calls too.  The nurses thought it was funny, but also thought I was great for being so strong.  Throughout my whole five months of chemo, I only had 4 days off sick, those being my intensive chemo days at the beginning.  After 5 months off, the last chemo session came and went, and I finally got to ring the bell.  Now it was time to look at the radiation part of my treatment.  I was tired, but knew I had to keep going.

Next chapter of the story.  The beginning of 2022 was upon me and I knew it wouldn't be long before I had to start chemo.  I knew it was very likely that I would lose my hair so I went to the local justcuts and just got a bob cut in preparation.  I looked up the effects of chemo and found that I could try and save my hair by doing cold capping.  This is the process where they put a very tight swim cap looking thing on your head which freezes your scalp.  You may not have as much hair loss, but most people do get bits and pieces of hair loss, and it also increases your time in the chemo chair.  So my response to this, was no thanks, let's just go with the flow.  My first chemo was in February 2022.  I had no idea what to expect.  My dad took me on the day to the hospital.  I was very nervous, but due to covid, my dad couldn't come in with me.  Alone again.  The first chemo I received was called the red devil.  It is bright red, and my specialist likened it to a nuclear bomb going off inside you.  Well anyway they hooked me up (I absolutely hate needles by the way), and they syringed in the red devil chemo while I sucked on an icy pole.  They make you do this so it freezes your mouth in the hope that you don't get mouth sores.  Then after the red devil I had another type of chemo.  I was in the chair for just over an hour and they gave me biscuits and sandwiches and soft drink.  They really do look after you and my first chemo nurse was male and was so very lovely.  I never saw him again after that day which was sad, because he was very good at making me feel at ease.  After the chemo session that day I went home and suprisingly I felt energised, probably because they make you take steroids and a whole concoction of drugs to stop nausea etc.  I also had to arrange an appointment with my GP for the day after chemo to get a needle in my tummy.  This needle encourages white blood cells, because obviously you lose a lot with the chemo.  And that was the first chemo cycle done.  At this point I knew I needed to do something about my hair before it started falling out.  The lovely Marcela from Longko was fabulous.  She came to my house and in my family room she shaved my head to a number one.  It was a scary experience but she made me feel comfortable with the whole thing.  Again this is something I cannot thank her enough for.  This chemo regime would be my norm for the next two months.  Every two weeks I was in there, hooked up, red devil, icy pole, then other chemo, sandwich, soft drink, lots of drugs, home, feel engergised, needle in guts the following day and so on.  After the second round I started to feel the symptoms.  Tiredness, weird taste in mouth, didn't feel like eating, feeling flat, and then the hair started to go... This is when the kids realised that mum was not well.  Once the hair goes, that is when people start to worry.  And I still had a long time to go yet.

My story continues on the lead up to Xmas.  I had come out of hospital all wrapped like a mummy.  This meant I could not shower.  Do you know how hard it is to not have a shower when you usually have one every day.  I had to sponge bath.  It can be very awkward.  Obviously the biggest issue was not being able to wash my hair.  My hair was all manky and greasy a week out from surgery.  Thankfully my Aunty's hairdresser Marcela arranged for me to attend her salon "Longko" at Mawson Lakes where I was treated to a professional hair wash and blow dry.  It was so lovely and I felt so special and if anyone is looking for great service, please go see Longko.  (Marcela will feature in a few stories through my blogs as she was a great support).  Xmas and New Year came and went and were a bit of a blur and during that time I saw my specialist who told me that my surgery had gone well.  He told me that they had taken out all of my lymph nodes from my left armpit, and 4 out of the 23 had cancer cells in them.  He said in the big scheme of things, that was good odds.  He told me that my cancer was hormone positive and was considered to be Stage 3, Grade 2 overall.  He said it was decided that I would have to undertake about 6 months of chemotherapy and then 5 to 6 weeks of radiation.  He told me that this would start in February, once I had recovered enough from the surgery.  I was then put on an exercise program to try and raise my left arm.  At the time I could't raise my arm at all.  5 days into the New Year I commenced working after having 2 weeks away from work.  Thankfully I was able to work from home.  It kept my mind busy so I didn't wallow in self pity.  I felt normal for a little bit, but I knew that chemotherapy was coming soon, and I was getting quite anxious.  How would I cope with that?

Back to my story - After I woke up from the surgery I was in pain, uncomfortable pain.  I guess you are in pain when you have had half your chest and arm ripped open.  I was bandaged up and could see a little mound on my left side.  You see I had opted for a breast reconstruction, so the Dr had placed a breast expander in, in the hope of stretching my skin so a breast implant could be placed in there after all of my treatment.  I was hooked up to 4 drains which were draining out blood and other crap.  It was very uncomfy and it hurt to move.  The first 24hrs I felt so sick, so tired and so not with it.  If you came to see me and I can't remember, I am sorry.  However, I do remember my mum there, I remember my ex partner brought her in.  I remember my work colleague bought presents from my lovely work mates.  I remember lots of flowers.  I remember I didn't see my kids.  They weren't allowed to come because of covid, and I just wanted a hug from them.  I spent five days in the hospital, on a concoction of drugs.  I must say that the nurses were all great and my Dr came in to see me every day, sometimes at 8pm at night, just to make sure I was alright.  And the food.. well as private hospital food is, it was lovely.  I managed to get released from the hospital 2 days before Xmas.  I was now home with my babies, and it was time to start looking forward to 2022 and the next fight in this battle.

Story continues - The day had finally come.  I had finished all my tests, there was nothing else to do but go back to the specialist and find out what I was dealing with.  I was so anxious.  I remember I was sitting in the waiting room and couldn't stay still.  I was so fidgety, I just wanted to get in the room and find out what was going to happen next.  I think that day the specialist was running about half an hour late.  It was pure agony.  And then he called my name.  I walked in and he went through all the tests... left breast, yes for cancer, left axillia node yes for cancer.. bones clear, brain clear, rest of body appears clear.  In his words, it was looking as best as it could be.  He told me that he had conversed with the other specialists and a full left mastectomy was the way to go, followed likely by chemo and radiation.  I told him I knew that this would be the case and I just wanted to get on and get it done.  He said he knew I would just accept it as I was tough and he liked that about me.  He scheduled the surgery for 8 days time.  I was booked in for the week before Christmas, on a Saturday.  Before then I had to get a dreaded PCR test for covid.  I remember at the time I had to book into a covid drive through station.  I remember going.  I remember almost punching the woman that was trying to stick the thing in my nostril, and then remembering that a covid test was the least of my issues. The covid test came back clear.  I remember work being wonderful.  My boss at the time said I could have all the time off in the world.  I told him that I would like to keep working as much as possible.  He said whatever I needed would be accommodated.  I cannot thank him enough for that.  And then the Saturday of the surgery was upon me.  I went to the hospital, in tears, frightened, not knowing if I was going to be okay, if I was going to be in pain.  I was taken to a waiting room in the surgery where people asked me questions "what is your name, why are you here, what surgery are you having".  I still couldn't believe I was going through all of this.  Then I was wheeled into surgery.  The anaesthetist knew how scared I was.  He tried to calm me by asking me what he should buy for his nephew for Xmas.. should he get him Star Wars merchandise?  I knew what he was doing, he was talking to me until I went under.  I tried to fight it.. I am not going under, I am not going un.... (and then the surgery began) .

Back to the story. - After a whirlwind week of doctor's diagnoses and doctor's appointments, the following Monday came.  They day I was to be thrown through scans and machines.  I had an ultrasound first off where I was hooked up so dye could be run through me.  Well when the dye is injected they tell you that it will feel like you are weeing yourself.  But you are not, it is just a warm feeling through your nerves.  Could have sworn I did pee myself a little though.  The machine was like a round narrow tunnel that wizzed around me at speed.  I then had to wait for my second scan.  I was sitting in the little room all alone and crying my eyes out.  It is so hard to go through things by yourself.  Covid times were not fun.  The second scan was the MRI.  I had to put both boobs into little boob holes face down.  Then I had head phones put on and got to choose my music to try and relax too.  They didn't have the dance channel so I had to listen to normal commercial radio.  The MRI moves you into a long tunnel.  Thankfully laying face down I didn't get claustrophobic.  The MRI took a long time.  At least 15 minutes.  Lots of noises.  It was quite daunting.  Then the last scan was a bone scan where I layed on a table and a machine wizzed over the top of me.  That was easy.  Then they sent me to pay the bill - $900 thank you very much.  And then I was allowed to go home.  Two days later I received a call from my specialist saying he wanted me to have one more scan.. the PET scan.  So the next day I was back in again.  I was given some needles and a little blood test, and then I was hooked up to a machine where they pumped chemicals in me.  I was not allowed to move during this time.  One hour of sitting still.  They apologised because the tv was not working so I couldnt watch that.  I said that is okay, I have a book.  Nope, can't read the book.. can't move, so not allowed to turn pages.  That hour went so slow.  Anyway then I was allowed to get up and get on the table for the scan.  Twenty minutes after I was done, I was sent to the paying area and another $500 thanks.  Getting sick is expensive... and then the waiting began.  Two more days until I found out what I would be dealing with.

So where was I.  That's right, I had just been to the Dr and had it confirmed that I had breast cancer and the following day I was in to see the Specialist.  He is a lovely man, who spends his life dealing with boobs, usually making them bigger, but often treating them for cancer.  He looked at my scan and told me that I had three lumps in my breast, one big and two small, and also the cancer had gone to my lymph node.  He said the cancer seemed hormone positive, and had probably been with me for awhile, so the few months it took me to get seen really didn't matter that much.  He said that the following week I would need to be thrown through every scan known to exist, so that they could see where it was and what I would have to deal with.  He told me that no matter what, he would be there and he would do everything to ensure that I got the best treatment.  He told me it was likely I would need to have a mastectomy and also chemotherapy, but we would know more at the end of the following week.  The first few weeks of finding out you have cancer are the absolute worst of the whole journey.  The not knowing how bad it is.  The not knowing what will happen.  The fear of not being around for your kids or to see them grow up.  It was all real.  I was now on day 5 of this journey and I had lost about 4kg from stress and not wanting to eat.  Now I had another big week coming up for me.  Lots of scans, lots of needles.  I was frightened so much and I felt quite alone.  Everyone's lives were continuing and mine seemed at a stand still.

Back to my story - After going through the ultrasound process at Bensons and knowing that things were not good, I had a three day wait to go to my GP for results.  Boy those days dragged.  On the day of the appointment I was at work when the GP office rang me to tell me that I should bring a support person to my Dr's appointment.  With those words, all the wind was knocked out of me.  You know right there.  This is not good.  I mean they are not asking you to bring a support person so you can celebrate with champagne that your scans were good.  I was flustered from that point on and I cannot thank my work colleagues enough for what they did that day.  They drove me home, they drove my car home and they told me how much they loved me and how much they would support me.  Looking back now though, I should have taken someone else as my support person to the Dr's office.  I should have taken my mum, or one of my friends, or one of my wonderful work colleagues.  I took my partner, and I now realise that people process things differently.  I am not sure that it was the right thing to take him, but you cannot change the past.  My Dr was beyond amazing and I am so glad she has been on this journey with me from the start.  It must be so hard to tell someone that they have cancer, but she was wonderful.  She was compassionate, empathetic and made me feel at ease. She asked if there was anyone in particular I would like to see as my specialist. Thankfully I had the card with the name of the breast surgeon on that the assistant at Benson's had given me.  My Dr told me that she was going to actually suggest him.  She told me she would do a referral for the specialist, and I should hear something soon.  She told me she would be with me every step of the way.  I left the Dr's office with a million things swirling through my head.  Would I be alive for Christmas.  What would happen to my kids.  Why did this happen to me?  On the drive back the car was very quiet.  My partner asked me what we should tell the kids.  I said I would tell them the truth.  I didn't want to scare them, but I didn't want to keep things from them.  15 minutes after leaving the Dr's office we pulled up into my driveway.  My phone rang.  It was the specialist office.  They told me they had arranged an appointment for me the following day.  Yes it was moving quick and I was trying to process it all.  What would tomorrow bring?

My story continues on the day I went to Benson Radiology.  I went by myself as I wasn't expecting things to be bad.  Also it was covid times, so I couldn't take anyone with me.  I had a lovely woman who did my ultrasound.  She didn't say anything, and was very friendly.  After the scans she walked out and told me the Doctor would look at my images.  She didn't seem concerned.  Next minute I have her walk back in with another person who said that they should probably do a biopsy.  This is where everything changed.  They said that I had some suspicious areas in my breast and also my armpit (the lymph node).  Even though they don't tell you it's cancer, you know it ain't good.  Well I freaked out.  There I was alone (apart from medical staff), crying and just wanting my children (and my mum).  I felt like I had reverted back to being a child.  It didn't feel real.  I thought "I will wake up from this surely".  But no, it was real.  The Doctor at the time was horrible.  I was devastated, hysterical, frightened and unsure what to do, and she was abrupt and rude and basically scolded me for acting, well like a crazy person.  However, the original woman was beyond lovely.  She held my hand throughout all the procedures.  I can tell you a needle into the boob and armpit flipping hurts like a you know what.  This woman was there for me.  She comforted me, she hugged me, she told me that it would be okay.  She told me that the first part of the journey was the hardest and that breast cancer was well researched and there was lots of treatment.  I don't remember her name, but I remember her kindess.  I think she must have been through something similar.  She gave me the name of a breast surgeon and said "if the worst comes out of all these tests, this man will be there to help you", then she gave me a hug and I left the rooms... sore, upset, red faced and then sucker punched even more by having to pay $600 for this experience.  They really need to do something about the financial aspects of cancer.  You don't need the added stress when your world is falling apart.  I left there so low, and now I had to go home and tell my family.  I also had to wait for three days to find out if indeed it was cancer and if so what the next steps would be.  I was at the lowest point in my life.  I just wanted a hug.  I just wanted my kids.  I just wanted to live.

So where did this all begin.  It began in August 2021.  I needed to get a prescription for birth control, so I headed to the local GP, an older male Dr.  Yes i was nearly 48 years old and the Dr told me I was getting a wee bit old for the pill.  Thanks Doc.  He told me to come off it and see how I go.  So off I came.  In early September I went away with the kids for my birthday, and whilst away my breasts were very sore.  I think it was the rush of hormones from coming off birth control.  Girls you know how it feels.  Anyway I was rubbing the breasts to try and make them feel better and that is when I felt it.. a little lump.  I mentioned it to a few people and everyone was of the same opinion.  It's from the hormones, it's probably nothing, you will be okay.  After a few weeks, I thought I better go and see a GP just to check.  Getting into a female GP was easier said then done.  Not many GPs were taking on new patients, the one female GP I had seen in the past wouldn't take me anymore, and I finally got an appointment with a female GP for 6 weeks time.  So for 6 weeks I waited and waited, and then the day before the appointment they rang me to tell me that the Dr I had booked was not taking new patients.  Well I was very stressed and told them that I thought I should get looked at, so they recommended a new female Dr.  I booked in to see her the following day.  On the day she checked me out, and told me she didn't think I had anything to worry about.  She didnt think it was suss, but just to double check she gave me a referral for an ultra sound.  I waited a few weeks before I tried to book an appointment because I had so many things going on with the kids.  By this stage it was late November.  I rang Bensons Radiology and asked to book an appointment.  "Oh no" the lady says, "I don't have anything for at least two months... unless you can come by in about half an hour as we have had a cancellation"...  I only realise now how lucky it was that I rang when I did and that the other person cancelled their appointment.  I didn't realise at the time how the next few hours were going to change everything forever.