It Is my cancer anniversary today. One year ago today I went to the emergency department of my local hospital and that one trip was the very start of this huge roller coaster ride I have been on for the past year!
One look at me and I was told I was going to be admitted and from that very moment “I knew”. I knew that once gain it was cancer and this time it was to be a different cancer and a different journey. A journey that in a lot of ways has been easier than last time. This time around I knew how to keep myself sane and fairly upbeat and to keep worry at a level where it wasn’t too excruciating.
Whilst in the emergency department I saw the ENT specialist and he also stated I would be admitted. So whilst I was ill I wasn’t actually sick, albeit in a lot of pain. Once I was admitted I was told I would need to have a trachea fitted and I was a patient to be watched (due to the tumour in my throat growing more and thereby preventing me from breathing - hence the need for the trachea). I had one anaethetist visit me and refuse to assist with the operation and finally they found someone who would do it on the w/e. So Sunday morning was the last time I was to speak for 18 days. I was then placed in high dependency and they organised to fly me to Fremantle Hospital. What an incredible ride this was … plane trip was easy. Lol Luckily I had my mobile phone and could stay in contact with family and friends that way, although it was very, very hard being 200 km away and unable to speak to anyone. Luckily I was allowed to take a small overnight bag on the plane with me, although I was warned it was likely I would not be allowed that. What the heck I was going to do without toothbrush and toothpaste etc… I guess they would have provided, much nicer to have my own. My mother did the obligatory race to somewhere to buy some new pyjamas as I didn’t have that many at home! When I had the trachea fitted they did a biopsy and I had to wait for the results. I was also introduced to the pain management team at this stage and they took a few days to make me pain free, but pain free I was and eternally grateful to the lots of morphine, tegretol, panadol and anothe one that i cannot recall right at this moment.
The ENT ward at Fremantle is amazing. Very professional nursing staff, kind and considerate. I am glad they were very knowledgeable as the times where my trachea got blocked and I was unable to breathe was incredibly frightening and my respect and gratefulness to the staff at Freo ENT would only gain momentum as time went on. I had to deal with a lot of people who knew nothing about caring for tracheas and found myself in the educator role.
The results came through from the biopsy and I don’t remember this bit at all, which I now find quite strange. My lack of memory is quite possibly due to the state I was in by this stage. Plus I had been going to gp’s for 10 months with this problem and they totally ignored it and kept telling me it would ‘spontaneously’ fix itself. However, that’s another story for another time. Base of tongue SCC was the diagnosis and then I had to be placed under an oncology team. I was introduced to my cancer nurse who has been amazing this past year and been a constant source of information and support. Then I was transferred to oncology combined with daily visits from ENT, pain management, dietician and speech therapist. That would often take up the whole morning and often lead into early afternoon … then I would sleep and eat dinner and then pretty much sleep again till starting it all over again. I had my first chemo and had to stay in few days after that finished. By this time I was nearly my son’s 21st b’day and I was itching to get out of hospital for that. Of course it was not going to be the party we originally were planning but celebrate that we would!
I got out on July 21st (I think) and his birthday was on the 25th, so just in time and ta’dah I could actually speak again even though it was still a little bit painful. My brother had offered to have my son’s 21st at his place instead of ours and so a party was orgnised with family, family friends and my son’s friends. It was an amazing night and I was so proud of not only my son but also his friends. One came up to me and said “when I heard about my teacher being diagnosed with cancer I was sad and when I heard about you I was more sad”. The young man that said this was only 15! I was actually able to say a short speech and my brother also gave one on the night. Mine consisted of a lot of tears for the most part! I managed to stay awake all the evening and just layed on my sil’s and brothers bed for a couple of rests during the night. Took me a few days to get over but I was grateful I was able to be there and to the extent I was there.
Monday was blood test and wait for the phone call Monday afternoon, … all is ok. Then it was back up to Fremantle for my 2nd chemo. Easier said than done to travel 200km and very fortunate to have wonderful friends and family who drove me up and dropped me there. My mother came up and stayed in the accommodation provided by Freo Hospital and I was admitted to hospital this was always a Wednesday and I was allowed to travel back home on Saturday. Saturday was the day I would start that ‘squeamish’ feeling and I am sure those that have had chemo have experienced similar or same. Sunday was my worst day for nausea and this particular time was the worse one and here is where I coined the phrase “upchuck” for that is what I did! Trachea was getting blocked so then it was an ambulance to hospital because it upchucking was increasing. Emergency Department again (they actually know me on a first name basis now which is kind of funny to me!) and they wanted to admit me and yet they wanted me to go home because the hospital was full of bird flu contaminated people and due to chemo I was high risk of getting that. So try a different anti semetic and manage to keep water down my peg tube for an hour or so. Between the doctor and I we decided I would try going home and if it got worse I would go back again. I was home for approximately 2 hours and it started again and much worse, so another ambulance and back to the emergency dept yet again! Admitted to the wards and stayed there for 4 days, so for this chemo it was a 7 day stay in hospital. Then I had a week home and the following week was back up to Fremantle once again for my last chemo. During my upchuck phase I was able to see that I didn’t need any pain killers which was great because it was a good indication the chemo was working. That information was worth upchucking for!
For my next chemo I mentioned to my oncologist (who is an amazing man, very quietly spoken and yet I felt so secure in his care) about the upchucking lots and he changed my medication and I did not upchuck once. By this time the chemo was setting in and I was starting to get tired from that. Prior to this I would sleep a lot due to the morphine and now I was tired due to the chemo.
Next stage was to get over the Neutropenic stage and have some teeth removed for my radiotherapy stage. During this stage I would have a monoclonal drug also (cetuximab or erbitux). I had a small operation to remove a few back teeth that would be in the line of fire of the radiation and then I had a week at home before having to go to Perth for 2 months for the radiation and cetux therapy. During my stay in Perth I stayed at the Cancer Council place, Milroy Lodge. An amazing place to stay although a tad far from transport. It is set in a bush setting and all the rooms are very modern and clean. In fact the whole building and surrounds is just gorgeous and if I had been staying there under different circumstances I am sure I would have enjoyed it far more. On some of my trips up and down from Bunbury to Fremantle I stayed at Milroy or Crawford and without those places to stay at I do not know what I would have done. A big thank you to the Cancer Council for providing such wonderful facilities to stay at!!
I finally finished my radiotherapy and by this stage I had open weeping infected skin on my neck and just limped across the line for finishing treatment. The last part of this stage of the treatment was hard! Mentally, emotionally and physically! Then I returned home finally, although I stayed with a friend for a couple of weeks to begin with and it was weekly trips to the gp to get fixed up a bit!
There is much more to this story than I have told today … I think it is enough though. Today I can sit and type this and 12 months ago I was not sure if I was going to be around in a year’s time or not and now I live in 3 monthly blocks. Now I am almost ready to return to work, although the fatigue is still a real problem for me. The side effects are many and life is certainly not easy in a lot of ways and without the support of my family I would facing a much harder part of this journey. Now I am sitting here thinking, oh I haven’t mentioned that bit or this bit … and gosh if anyone has read this I hope you had a coffee and apologies that it is so long!
I have been home for quite some time now and it was great to come home finally. Over 5 months or so of treatment I was only able to spend 2 weeks and 2 days (not consecutively) in my own home. The grass out the back was up to my butt! So starts the next stage of the journey……………………………….....................
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.