Anniversary

[Jules2]

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………………………………..................... Julie

[willow]

Wow, you have been through so much. You are amazing with your attitude and how you've coped. Great that you didn't miss your son's 21st. You have suffered so much. Thank you for sharing part of your story with us. Cancer is such a terrible thing ....Life isn't easy once you have experience it - don't rush into going back to work..make sure you are ready and do it because you want to not because you think you should or others expect it of you. Take care, Willow xo

[Mrs_Elton]

Hi Julie, Special request - Next time put the bit about the coffee at the top of the post please!!!!! Only joking......it was really good for me to be able to understand (using that very loosely of course) what your journey has been. Thank you for sharing. Over the past 8 months or so I have read many of your blogs and replies to myself and others without fully knowing your personal story. You have always given so much to so many on this site and I'm sure you do that in the 'real' world too! You are one special lady Julie. I am grateful for your generosity of spirit. Here's to the next 12 months, may it be a smoother ride than the last. kindest regards, Jill

[Jules2]

Hi Jill Thank you and I did laugh when i read about the coffee bit as I did wonder about that when i hit "send". lol Then I thought, oh well no one might read it. It's not the full story but it's enough for now. One day I think I will write the whole thing warts and all. I believe in giving we receive, so therefore we are all giving and receiving all the time on this site. Thanks to you and everyone on here because it all makes our journey that little bit easier to be able to read and share with one another. Thank you again Jill ... perhaps we are all special ladies on here? Oh better include the blokes in that one too ... just kidding guys, wouldnt leave you out! I have met some amazing people on this journey, not all on this site of course and I am thankful and grateful for being able to do so. Thanks again Jill. hugss Julie xo

[Jules2]

Hi Willow How are you? Thank you for your reply. 🙂 Yes, I was very blessed not to miss my son's 21st ... I do not know how I would have dealt with that one and am fortunate not to have had to. Life is not easy once diagnosed with cancer ... I totally agree!! My need to return to work is financial as I am a single person and by the time I have paid my rent I get $100 to live on. That wears very thin after a while, I can tell you. 🙂 Physically I do not know if I am ready just yet and of course mentally and emotionally. I do volunteer work one day a week and as I have mentioned before I am putting my sister in law's business on the internet for her, so I keep myself busy. Anyhooooo, I am sure something will "happen" as it seems to. Just frustrating at the moment. lol I totally agree we shouldn't return to work because it's expected of us. Thank you for sharing your journey also. hugss Julie xo

[carolyn2]

congrats on an anniversary jules life is full of its ups and downs

[vinouche]

Thank you Julie for your wonderful story. It makes me see how fortunate I am to have come trhough this first round of chemo without the problems you had. I think it will make it easier to carry on because if you can get through all of this and still have a smile then we can too, or at least try. Hope you have many more years ahead. xoxo S

[Jules2]

Thanks vinouche .. i think i was lucky really as some people suffer so badly. It's just a case of one foot in front of the other because that is what we do, least i think so. One thing i try very hard to not let cancer rob me of my sense of humour and my ability to be happy. :) I hope the same for you too, vinouche and for everyone on this site. Julie xoxo

[Jules2]

@carolyn ... yes, life is certainly full of ups and downs. 🙂

[WishingStar]

Hi Julie, I have been off the forums for the last week or so - I have been the carer for once - husband has been sick - so just wanted to say happy aniversary and what I agree with Jill - you have an amazing story of strength and reislience to tell, and have always been there to offer help to others over the last twelve months! Cyber Hugs Nicole

[Jules2]

Hi Nicole Hope your husband gets better soon. This time of the year is virus heaven it seems. I have my first cold in nearly 22 years! Quite strange to be sneezing and needing tissues. Hope you aren't getting too worn out. Ty for the happy anniversary ... it was harder than i thought to write about my experience. Anyhoooo tis the past and the future is the here and now and apart from my cold i am getting stronger so its a good thing. How are things with you at the moment, Nicole? cyberly hugss Julie

[WishingStar]

Hi Julie, Sorry to hear about the cold! Annoying things they are! I am ok. New username (longstory). My husband had a severe gall bladder infection and a heart attack as a result with a helicopter ride to our nearest capital city to boot - so I am the carer for now - but heading back to work this week as he is getting able to get up and out of the chair by himself etc. I am going for my 18 month check up in two weeks for the brain tumour - so starting to get the familiar butterflies back - but positive that everything is behaving!! Glad to hear you are doing so well - besides the cold! Nicole

[Jules2]

Hey Nicole I love your new user name! Hope you can find time to tell us about the story one day. :) Crickeys your husband has been through the mill. I had gall bladder problems years ago and it had attached itself to my liver, felt heaps better once it was out. Was the helicopter ride courtesy of the Royal Flying Doctors? Ahhhh all the best for your check up and try not to let the old brain get carried away with things that may or may not be! I just focus on anything and refuse to do that stress thing too much. Of course i get stressed to a degree but its a lot easier to not worry too much. Worrying is not going to change whether the cancer is back again or not ... is just going to ruin a few more days. I am being a sook about my cold ... lol which is kind of ironic really. Ok Nicole i wish you and your husband all the best and let us know how you get on with your check up. hugss Julie xo

[WishingStar]

Thanks Julie - sook away with your cold - why not!!! In Qld we have energex (an electricity company sponsored) helicopter airlift service, as well as the Royal Flying Dr. He is doing better - because of the heart implications, he will have a slow recovery - he is very frustrated, as is 34, and usually a fit farm worker - just was finally coiming to terms with my diagnosis - so a tad cranky if anything. Not stressing too much about the upcoming checkup - the upside about being busy. Look after yourself, colds really are terrible too although I was moaning the other day about having one, and everyone at work starting laughing - thinking it was funny - apparently they had always felt like major sooks whingeing about colds and flus around me after all the 'medical type stuff/aka horror' I had recently been subjected too - I just laughed - it had broken the ice - Colds do suck too!! They now feel free to whinge and moan about their own cold and flu type symptoms - its great!!!!! To be treated like a normal person again, ie someone that you can whinge about your flu too! - if that makes any sense what so ever! Nicole

[Jules2]

Nicole It makes perfect sense! I sometimes avoid people and situations where it is going to put me into the "cancer patient" category. How wonderful that the people you work with are now at ease and happy to whinge about such things as a cold! Glad to hear your husband was finally getting a handle on your diagnosis ... it is just so hard for everyone. Gosh re his heart and age, he is certainly going to have a new perspective on some of the things you have had to go through. The helicopter service sounds great, not sure there is an alternative here in the west. Although i heard of some angel flights from geraldton to perth, i think!?!? Not quite sure what is involved in those ones. take care Julie