Looking back through my Facebook timeline I found a joke between a friend and me about constipation and squatting while pooping. In hindsight, this was most likely my first symptom of bowel cancer. That post was in June 2016 just before my 39th birthday. I was a busy single mum, working full time as a bookkeeper and volunteering as treasurer on the P&C of the kids’ school. On the off weeks when I didn’t have my 3 girls, I was dating and socialising with friends. Life was busy but fun and full of laughs.
Fast forward to February 2017, I had started a new job as General Manager of a Newcastle District Golf Club in January and life was even more hectic! I was still suffering from some constipation, which I kept mostly under control by drinking more water and taking Metamucil supplements. But then I started to notice some blood on the toilet paper when I wiped and a little blood in the toilet bowl after a bowel movement.
I was concerned about the blood and change in bowel movements, so I made an appointment with my GP. She examined me and said I had an anal fissure and this was the cause of the bleeding. I have had anal fissures before after having babies and I questioned the diagnosis, as in my previous experience they had been really painful! She explained to me that this one was more internal and so it wouldn’t cause pain. So I left the doctors with a sense of relief that it was just a fissure and nothing more to worry about and I needed to make sure I moved around more, ate more fibre and drank more water.
Skip ahead to the beginning of July 2017, one week after celebrating my 40th birthday. Life could not have been better. I had started a relationship with an amazing man at the beginning of May and things were going great. Loved my busy, challenging job. The kids were all fantastic, doing great at school and my ex-husband and I were friends, working together to parent the girls. Life was finally going in the right direction after having a few rough years with the divorce and adapting to being a single mum, not to mention some not so great relationships along the way. I remember I even said to my girlfriend around this time that life just seemed too perfect at the moment.
Well, I obviously jinxed myself as I came down with a bad dose of the flu. I was so busy at work installing new systems that I couldn’t take any time off work. The following week I was exhausted and had to take a few days sick leave. During those days off I started getting stomach pains and I would have to rush to the toilet and the pain and cramps I experienced could only be compared to labour pains… I knew something was not right!
I made an appointment again with my GP, this time I could only get in to see a locum doctor. During the consult, the GP said that the pains and stomach upsets were most likely a response to the flu, but this didn't sit right with me. I explained to him the continuing symptoms I was experiencing, bouts of constipation, blood, and a change in shape of my stools (they were narrower). He didn't seem overly concerned about any of this and suggested I wait a couple of weeks and if I still was having these symptoms to come back. I wasn’t happy with this and went over everything again and said I just don’t think this is something normal and I think it needs further investigation. Reluctantly he wrote me a referral to a General Surgeon for a consult and said he was sure they wouldn’t find anything wrong.
I left the GP’s office and immediately rang the surgery of the general surgeon. I managed to get an appointment the following week. When I walked into the appointment and explained my symptoms to him. He said to me “I’m not going to examine you, I’m booking you straight in for a colonoscopy”.
Thursday 27th July, I awoke from my colonoscopy, the doctor walked into the recovery room and made a beeline to my bed. "I'm sorry I wish I had better news," he said, "I've found a tumour, you need to come see me tomorrow". I can't remember anything anyone said to me after that, I just broke down crying.
The hospital called my girlfriend to pick me up and when she saw me she knew instantly something was wrong. That afternoon was hell! I think because I was so upset and shocked that the hospital just wanted to get me out of there. I left without eating anything. My girlfriend dropped me home and asked if I wanted her to stay with me. I said I just needed to have a sleep, as I was exhausted. Not long after getting home from a mixture of the stress of the news and the side effects of the aesthetic I started vomiting and couldn’t stop, anything that touched my lips would make me vomit. My partner ended up having to take me to the emergency department to get the vomiting under control. I did not sleep that night…
Friday 28th July was supposed to be the beginning of fun weekend for my girlfriends and I, as they had organised a girl’s weekend away to celebrate my 40th. My girlfriend, who collected me from the hospital the day before , picked me up for my appointment with the General Surgeon and together we went to find out what he had found in more detail. He explained to me that a tumour was around 10-15cms along my rectum and he was not comfortable with doing surgery in this area and was referring me onto a Colorectal Surgeon and they would be in touch early the following week. He also gave me a referral to have a pelvic CT scan. We left the surgery and my girlfriend straight away rang a couple of Imaging Centres to see who could get me in for a CT scan the quickest. I ended up having a CT scan that afternoon at 2:30 pm and then headed away for the girl’s weekend. This weekend was the best thing for me. I had the support of my beautiful friends and was partially distracted from all the scary thoughts running through my mind and the wanting to just burst into tears constantly.
I rang the Colorectal Surgery first thing the following Tuesday, as I was going insane waiting for the phone to ring. I saw the specialist on the 9th August. He scheduled me to have another colonoscopy on the Friday. Two colonoscopies in 2 weeks, I was as clean as a whistle!! (From my experience I would recommend the Pico Prep over the Movi-prep any day of the week). I also had to go have an ultrasound and MRI.
Another week later I was back at the Colorectal Surgeon’s office for my full diagnosis. I was feeling really positive and after doing some of my own research, I was thinking that this was a Stag e 1 or Stage 2 cancer. When the doctor told me it was Stage 3, I was gutted. He explained to me that my case had been discussed with a group of surgeons and oncologists at the weekly roundtable meeting they have and the recommendation for me was to have radiation and chemotherapy followed by surgery and I would end up with a temporary stoma which would be reversed 3 months later.
I didn’t ask during that consult what my prognosis was and I have never asked what my chances of survival are… it's not important to me and it's not relevant as I'm going to kick this in the arse and no way will I be dying of something as boring as cancer.
Now I had my full diagnosis it was time to tell my children what was going on. It was breaking my heart knowing I was going to hurt them with this news, just like when my ex-husband and I sat them down to tell them we were separating. Before I told them I went and saw my psychologist (I have been seeing her since the lead up to my separation and I recommend 100% having someone to talk to that's not family or friends) so I could talk through every and help me work out what I was going to say. The girls all reacted in their own ways. My 15-year-old was fairly stoic and brushed it off with "well at least it's not serious like lung or breast cancer" but I knew she was putting on a brave face. My 13 year old just broke down as she is my sensitive soul and my 7-year-old didn't quite understand the situation but thought it was funny that mum had butt cancer. We still say I have Butt Cancer!
Telling my parents and grandparents was really hard too. I think they still don’t want to believe I have bowel cancer.
During this time I also let my partner know that it was ok if this was all too much for him to handle. We had only been seeing one another for less than 3 months and I would understand if he didn't want to continue our relationship. He basically told me to shut-up and he wasn't going anywhere and would do everything and anything he could to help me get through this… Of course, I broke down crying!
I set up a Facebook Messenger group with my girlfriends so I could let everyone know what was going on in one message rather than repeating myself over and over. They, in turn, created their own group to discuss how they could help and support me throughout this. I must state here that I am a very independent stubborn person and I absolutely hate asking for help or being a burden on anyone! I had to lay down the law to them when I got a text from a girlfriend saying she was coming to get my dirty washing to wash! Over my dead body! But I did let them know they could help me by inviting me to dinner on the nights I didn’t have the girls or go for walks with me etc.
The following week after my full diagnosis I had my first appointment with my Radiation Oncologist, a radiation planning appointment and a PET scan and my first appointment with my Medical Oncologist. It was a busy week! I also got my first and probably last tattoo on my left inside wrist with a cancer ribbon and the words “Not Today” which is a part of a quote from Game of Thrones "There is only one god, and his name is Death, and there is only one thing we say to Death ‘not today'." I have looked at this so often in the past few months and it has given me the strength to keep on fighting and believing in myself when I have just wanted to curl up into a ball in a corner and cry “why me!!!”
I commenced the first of my 25 treatments on Thursday 31st August exactly 5 weeks from the discovery of a tumour, and I finally felt like I was doing somethi ng to fight and take back some control or ownership of my life! I had radiation Monday to Friday and I also took a chemotherapy drug Xeloda that is tablet form morning and night on my treatment days. Rest days on Saturday and Sunday.
My PET scan came back with an abnormal flash of my entire bone marrow and immediately my mind went into overload as my grandmother passed away from Multiple Myeloma. I was referred to a haematologist and he scheduled me for a bone marrow biopsy, which I had done in the pathology rooms under local anaesthetic. OMG!! I never realised how many different types of pain there are and when they extracted the marrow sample it was like having my femur broken from inside out! Thankfully nothing diagnostic came back in the report.
Radiation and Chemotherapy overall weren’t too bad. I went great for the first 3 weeks or so. I remained working pretty much full-time during the diagnosis/investigation/treatment-planning month and continued working fulltime by scheduling my radiation for early morning or afternoon appointments. The side ef fects I developed from around 3.5 weeks were fatigue and loose bowel movements from the radiation and hand and foot syndrome from the Chemo (for me it was burning in hands and feet and when I walked it felt like shards of glass were embedded in my feet. The skin then peels in thick layer of skin off my entire foot). My Medical Oncologist reduced my dosage of the Xeloda and this helped control this reaction. It was hilarious when my Radiation Oncologist cheered when I finally asked for a medical certificate to take some time off work. He had been asking me every week if he could write me one (hahaha little did he know I was still doing some remote work from home!). During this treatment stage, I felt so grateful to have such caring and supportive doctors and Radiologists and even the receptionists were amazing, we would joke around and laugh a lot during my visits to the centre.
After my radiation/chemo course was over, I had 6 weeks for my body to recuperate before surgery. At my first pre-op appointment with my Colorectal Surgeon, he said he wanted me to have a consult with a Gynaecologist Oncologist to discuss having a hysterectomy at the same time as my bowel resection. Because the tumour was very close to my reproductive organs, I also had a cyst on one of my ovaries, which showed up in my ultra-sound. As I have finished having children I wasn’t fazed too much by this suggestion. We also discussed the possibility of not needing a temporary stoma. I told him, I would consent to one if he thought I needed one and would leave that for him to decide during the surgery. A surprise when I woke up! (Yes, I have a warped sense of humour and am lucky that all my specialists have one too and we all have a laugh during my consults even when there are tears)
The Gynaecologist/Oncologist said from the roundtable meeting the specialists have once a week on current cancer cases, that it was agreed that a total hysterectomy including the removal of my fallopian tubes and ovaries was recommended. If cancer reoccurred there was a high chance of it happening in my ovaries, uterus or cervix. So this meant that I would have to go on HRT after the surgery. He explained to me the risks verse rewards of going into early menopause and taking the HRT and I accepted that a hysterectomy was the best way forward for me.
I think the seriousness and extent of the operation ahead of me only became real after I had my pre-op appointments at the hospital and with the Anaesthetist. This was going to be a long surgery. The appointment with the Stomal Nurse was also an eye opener with the reality of having a stoma and needing a colostomy bag. I think out of everything that was going on this was the biggest fear for me. I went home and did a lot of reading and watched YouTube videos showing women changing their bags… I laughed and I cried and I kept watching these until I was desensitised.
On the 23rd November, I went into a 5hour surgery for a laparoscopic bowel resection with +/- stoma and laparoscopic total hysterectomy ; my 2 surgeons tag teaming one another. I woke in recovery and in a lot of pain and tubes coming off me everywhere. The first thing I asked the nurses “did I have a stoma?” The nurses gathered round pulled down the blankets and I held my breath… No stoma!!! YES!!!! High fives all round! I actually thought I had one as I had an anaesthetic pump attached to my abdomen, which pumped a constant supply of local anaesthetic into my stomach muscles and the dressing over this looked to me like a colostomy bag in my haziness. I also had a PCA so I took advantage of that and pushed that button regularly!
I spent the rest of the night and half the following day in ICU and it took around 4 attempts to get me into a chair without vomiting or looking like I was going to pass out. Both my surgeons came by to see me and they were both very happy and said the surgery had gone better than planned and even though I didn’t consent to it they decided to do a vaginal hysterectomy rather than making an abdominal cut (they also removed my bowel the same way). I responded “no, not good enough… put it back in and do it again to what I consented too”… it really hurt to laugh!
Recovery for the first 3-4days was not fun!! I was in a lot of pain but I have to say thank you to who invented the PCA and local anaesthetic pump because without that I don’t know what I would have done! I was allowed to go home from the hospital on day 6, managing my pain with just paracetamol. I was very grateful to be back in my own bed.
My pathology came back a week after leaving the hospital and I had an appointment with my Colorectal Surgeon. There was no sign of cancer in any of my reproductive organs, the tumour was almost non-existent and only a few stray cancer cells in the tissue, no cancer cells found in any of the 20 lymph nodes they removed. I thought I would be ecstatic with the result but strangely I just felt MEH… it was a weird reaction and not one that I expected at all. Thought I’d be high fiving like in recovery.
It definitely took the full 6 weeks for me to feel ok again in my abdominal area and things are still settling down regarding my bowels and getting used to what is now my new normal.
I went and saw my medical oncologist 3 weeks after surgery and I was really caught off guard when he told me I would need to do 6 rounds of chemo starting New Years Day! 6 rounds are 14 days of Xeloda tablets then 7 days off and repeat 6 times. Therefore pretty much 4 months of treatment.
When I got home from this appointment I broke down! This was not what I expected! I was hoping 2018 was going to be a new year with no cancer! I was looking forward to getting my life back to normal, going back to work fulltime and being able to plan holidays and my future. Now I couldn’t see past the next few months and not knowing how my body would react to this new treatment regime. I felt it wasn’t fair on my work to continue to with my role, I didn’t know if I would be able to work or not and so I made the very heartbreaking decision to resign. I must be ok at my job as the board of directors refused my resignation and instead offered for me to take a leave of absence while I go through the next few months of treatment. I am truly very blessed to have such supportive people in my life!
So here I am at the halfway mark of my treatment and it hasn’t been a walk in the park! We are still trying to find the right dose of Xeloda where my body doesn’t go toxic and I end up debilitated with blurry eyes and sore hands and feet. I am currently at the lowest dose they can give me and so far this hasn’t been too bad with only mild hand and foot syndrome. If I cannot sustain on this level I will need to change to an intravenous chemotherapy drug. I will need a portacath put in and have to wear a pump for 48hours every 2weeks. I’d much prefer to take some tablets! But at the end of the day, I'll do whatever I need to do to kick this cancer in the arse and try to keep smiling and laughing.
So that’s my story so far….
Out of this whole experience, the one thing that has been constant is my feeling of being the odd one out. When I walk into a waiting room for treatment or a specialist’s appointment I get funny looks from the people in the waiting room. First, it's a look of “what is she doing here”, then after I come out looks of sympathy. Even now after radiation/chemo, surgery and now in the middle of chemo again, I’ve looked healthy! I don’t look like a stereotypical cancer patient with no hair and looking sickly (although there have been quite a few days when I've felt like a cancer patient due to the side effects of the treatments). E very medical person I have met along the way is shocked at my diagnosis and has said to me I am not the normal bowel cancer patient they see. I am young(ish), fit, healthy, not overweight etc. etc. so this disease is still very much seen as an older person disease even in the medical community. This is why it is crucial if you have any symptoms at all that you are concerned with, request to have a further investigation and DO NOT let anyone tell you, you are too young to get bowel cancer! If I hadn’t pushed the GP in July for further investigation my cancer may have spread to other organs and I’d be Stage 4. If my GP in February sent me for further investigation maybe I would have been Stage 1 or Stage 2 and I wouldn’t be undergoing such intensive treatment?
I would not under any circumstances wish or want anyone to go through what I’ve been through over the past several months! It has been at times an emotional and physical hell! I am truly blessed to have wonderful supportive kids, partner, family, friends and work to help me get through this difficult time. I occasionally post Facebook updates of where I’m up to in treatment on my timeline and I share the posts from Bowel Cancer Australia. Seeing one of their posts is why I have spent the day writing my story (didn’t think it would be this long!!) to raise awareness. If my story can prompt just one person to go to the doctors and get an early diagnosis, then my journey has been all worth it!