A peak into the darkness
How do you deal with diagnosis of cancer? How do you feel? What do you say?
For the one in eight Australian women diagnosed with breast cancer every day these are the thoughts that run through their heads.
Kristy Woodlands is a mum, a wife and a daughter, and right now is in the fight of her life.
Kristy has bravely allowed us to publish her diary; it provides a window into the everyday of someone locked in a battle with breast cancer.
February 5, 2016
So today I am told that I have Secondary Breast Cancer. That it is in my bones “all over my body”!! Not something you hear every day hey.
I feel OK! I still have some breathing issues, but it is confirmed that the cancer is not in my lungs and that those breathing issues are being caused by mild bronchitis, which nobody seems interested in treating, due to the more pressing issue.
So basically if it were not for the breathing I would say I feel really good, so how is this possible I ask?
I am not losing weight.
My story so far as I remember it….
When my baby was seven months old, three or so months after I had finished breastfeeding (I had stopped breastfeeding Cody after three to four months due to a lack of milk), Paul noticed my left breast was denser than my right. At the time I went and saw my doctor who referred me for an ultrasound. The findings were put down to changes in the ducts due to recent breastfeeding.
Sometime later it was still there, so I went and saw my doctor again who thought it was probably nothing but gave me a referral for an ultrasound just in case.
I was conscious that the thickness was still there and lately it had started ‘tingling’, that is the only way I can explain it. My ultrasound was on a Tuesday. That day I did not return to work.
The ultrasound concerned the Doctor on duty, and he referred me straight back to my GP for a referral to a breast specialist, my GP then referred me to my Breast Specialist. I saw her the next day, and she was very concerned with the films and report, and the whirlwind began, this was Wednesday, 16th April.
Over the next two weeks my life became about doctors’ appointments;
1. Mammogram – nothing visible, possible minute calcium (I believe is cancer)
2. CT Scan with dye injection – again no overly scary results but not good either.
3. Five core biopsies were taken under Ultrasound – this was especially unenjoyable but again showed a small concern for cancer.
4. An MRI – and BAM! there it was lit up. The test showed an 8cm by 6.5 cm build-up of DCIS, non-invasive cancer that is only in the milk ducts.
By May 1, I was in the hospital having a mastectomy of the left breast.
I had four weeks off work for this, but overall I do not remember it being too physically painful, but was ultimately life-changing.
When I returned to work, I started Radiotherapy.
Six weeks of treatment five days a week. This was less than enjoyable. In a nutshell it was burning my skin and everything underneath to make sure that if there was any remaining cancer that it would be burnt to death!
This was not nice; it was exhausting and uncomfortable. Lying on that table day after day soon became a habit but then it started to burn my skin off. Anyway, it was manageable, and I think I got through it pretty well, and I worked the whole way so I must have been OK.
I then went through the next 18 months with one breast. That was OK, but I never felt right, I always felt that something was missing (haha) and I decided I wanted it back.
After all the research I decided on reconstruction of the left breast using my Latissimus Dorsi muscle, meaning the skin fat and muscle from my back plus an implant and creating a new breast on the front. As well as skin saving mastectomy of the right, so removing all my breast tissue and replacing it with an implant and fake muscle but keeping my skin and nipple. The reconstruction happened on Friday 18th Dec.
After this surgery, I had six weeks off to recover. The surgery was quite a big one and left me uncomfortable. I was sleeping on my back because that was the least painful and I slept with about seven pillows which looked very funny on the bed.
I spent Christmas and new years on the couch but gradually began healing, and all went well. At some point over this time I developed a cough, this cough was consistent and annoying. I was due to return to work on the 1st February 1, so I knew I wanted to get this cough fixed up before life went back to “full steam ahead”.
After trying some medication, my doctor sent me for an X-ray of the lungs to see what was going on.
I received a call Sunday night (31st Jan) from the doctor’s surgery saying my doctor wanted to see me. I sat down with him, and he told me that the report said that they could see possible Metastasis in my spine.
I looked at his face, I had no idea what that meant but I knew it was bad form the way he was acting and I just started shaking. He said, it looks like the cancer has spread, but I had to see my Breast Specialist to have it confirmed.
My world fell apart that day, I was by myself, and I walked home calling my husband and crying. I knew when I got home Cody would still be up, so I had to pull myself together but how do you do that?
Paul and I did not sleep that night. We googled Metastatic Breast Cancer, Bone Cancer, how do you treat it, how do you get rid of it, etc., etc. We cried, and we held each other in absolute disbelief.
I can’t remember going to see my Breast Specialist, but from there I was referred for a bone biopsy, a CT scan and full body nuclear scan.
My bone biopsy was on Wednesday Febuary 10. Man, this was painful! It was done at Jones and Partners at St Andrews hospital, which was great because then it was covered by Private Health Insurance. Nurse Andi was so nice and made me feel at ease, answered all my questions and even checked how much detail I wanted.
First they did a CT scan on my abdomen to check all the organs, Peter was the Radiologist, and again he made me feel relaxed. Then onto the biopsy which was being done under CT and I was being put to sleep.
This involved a needle being screwed into my bone to then have another needle go up inside and scrape bone away to be tested to identify what kind of cancer it was, the stage and the receptors, i.e., hormone and HER2.
I awoke and again was cared for by lovely nurses. The pain in my right hip gradually came on as they had injected a local in to ease the pain on awakening.
The next day was very hard to move and very uncomfortable basically at all times, they gave me Endone, but I felt quite sick in the gut for the next 32 hours or thereabouts.
Nurse Andi had told me that the CT results would be with Bochner by the next day but that the Biopsy results will take days as they need to ‘calcify’ the bone before testing and this takes time.
I am so very impatient so Paul and I discussed how I could get the results without being too pushy. So I rang Ashlee in the morning and “updated” her that it was all done and if they get the results that day could they please call me.
By 5 pm I had not heard anything so just rang to see if they had received them. Ashlee said they had, but my Specialist had been consulting but would call tonight.
She called three minutes later.
She had received all the results except for HER2 which was still being tested. Results were:
CT results showed my organs were all clear!! Best news we had received in weeks.
They are still concerned about my left lung, is it damage from Radiotherapy? Or is it an infection caused by the cancer?
As for the cancer, it was confirmed to be breast cancer. Meaning secondary breast cancer on my bones.
Meaning stage four.
I felt sick.
I wanted to throw up.
Deep down I still had this slight hope that the original scans had all been mistaken. I was wrong.
Paul was ecstatic (by ecstatic in this sense I mean really relieved), unlike me he knew it was cancer but the news of it not having spread to any organs is great news, and of course it is!
Cody was at my feet now wanting to talk to me while I had tears streaming down my face. ‘toughen up Kristy, suck it up for one hour and then let go, be strong for Cody’ and I did.
That was yesterday. Last night every time I closed my eyes I started having these weird nightmares that would scare me back to being awake. In the end, I asked Paul to hold me and finally I was able to drift away. Before sleeping, I sent a message to the nearest and dearest to advise them of the good news so that they too could get some sleep.
I would tell them the rest today. But now today I have a new outlook, I can manage this. In the end, my specialist said there was “no immediate danger of bones breaking or anything” which as far as I am concerned means I can treat it to shut it down.
Then if it comes back to life, I will do Chemo and shut it down again. I could live forever doing this until the Chemo damages something else of course. But the longer I live, the more time I have with Cody and Paul and the more chance there is of research making some discovery.
So I feel OK, I am going to meet with an Oncologist on Monday and also going to meet with my Great Uncle Franz Monday morning. Franz was apparently a specialist in Nuclear/Radiation Medicine. So he has offered to have a chat with me and see if he can answer any questions or give me any information. This is so very nice of him and I could not be more grateful.
So we have now had the discussions, life expectancy and quality, doesn’t that sound like fun! In consultation with my specialists I made the official decision today to give up my role as Branch Manager Adelaide Office. A job that I worked so hard to get and was supposed to be my step into something bigger. Instead, I am going to try dropping back to three days, utilising Income Protection. Tim is being very supportive and is allowing me to stay on at Adelaide Office as support of the new manager until a max of August. It is the right decision and although I am extremely pissed off that I am stepping down (without a promotion, which was my plan) the idea of working part-time is actually quite invigorating. Always look for the positives, right?
So got final results that it is HER2 +ve. The oncologist had previously discussed chemo for one hour per week for 12 weeks. He has sent me a whole heap of info to read and then discuss when we go see him Monday. So far the paperwork is showing as much more than one hour. But I will wait to talk to him Monday as I get the feeling every treatment plan is different.
Started HER2 treatment today. One hour of Perjeta followed by 90 mins of Herceptin. These two are foreign proteins that smother the cells and stop the HER2 Hormone from splitting cells. Therefore stopping or slowing spread.
Well we started, it is all done intravenously, and the nurse Mary was going thru some brochures and forms with me. I was feeling fine, or not feeling anything really; then I started to think “weird I can’t understand what she is saying, concentrate Kristy”, then I started a little cough and chest started to tighten slightly. Nurse Mary just excused herself for two secs, and I said to Paul that my breathing was funny. He replied with yeah you look a little red. Nurse Mary heard him, turned around, said something, and within seconds I had about six nurses all around me, Perjeta out and Saline in, oxygen mask on. My breathing got very hard, and apparently, I was covered in hives, and my eyes went red, and my temp went up to over 38.
Anyway, they injected me with some Antihistamine and Steroids, and after about an hour all had settled, and we proceeded to complete HER2 treatment without a fuss.
Thursday night was not fun. I felt horrible, high temp, very lethargic and just horrible. I believe this was the reaction but myself and Paul were quite scared and concerned.
I went to sleep about 8 pm and woke an hour later absolutely drenched. Back to sleep until 11 pm again drenched. Then woke at about 2 am feeling quite good. We got through it!
First Chemo today
Met with Oncologist first and discussed the night before. He explained that nearly no one reacts to Perjeta, but now that I have it will happen every time, so we have to take pre-meds. That just means some antihistamines and steroids before treatment, so not a big deal but he said that would stop it. Considering I have to have this every three weeks, it is a bit disappointing but a reality I will accept.
So anyway Chemo with cold caps today. I have been told that my hair will likely go anyway because it is so fine but let’s give it a go. Cold caps is very uncomfortable, but it gets cold in stages, and so it hurts as the temp drops but then settles so overall, not unbearable.
Chemo went without any troubles just a long day again.
Side effects have been OK so far. Friday and Saturday a little slow but overall OK, Sunday my mouth was really dry and sore, think this might be a little problem for me – mouth ulcers. But I just brush multiple times a day and use the mouthwash and floss every day. Do whatever I can to reduce the effects.
Alcohol does not taste great, bit stingy in the mouth and just not nice so at least I will go through a bit of a detox. And not one I have to struggle though as it doesn’t taste good so I, therefore, am not missing anything! Got to take any positives I can.
Chemo week two went well, Mum and Dad came along. It takes a long time, so I just have to allow the day. Appointment at 10.15am left home at 9.45pm, then got back in the car at 2.45pm.
First, wait for apt with Onc. He then takes me through to my area and puts the needle in my arm, they take some blood to check your cell count and flush with saline. Next the cold caps on. This takes a good 30 minutes I think, then they will start the chemo if the blood is back. They connect the chemo and that goes for an hour. Once finished we flush again with Saline and the cold caps stay on for a further one-hour minimum.
Side effects seem to grow gradually. I think I look fine on the outside, it’s the inside that suffers. But at least I can deal with them and can keep them to myself.
Kristy continues to fight the good fight today, but since March 2017 moved her diary onto a closed Facebook group.