So I’m still trying to get the hang of this site. I thought I’d start from the beginning. Hodgkin’s lymphoma stage 3. It wasn’t until November 2011 when I started getting really noticeable symptoms. Before that I remember mentioning to my dad that I just felt old. At 19 and 20 I kept thinking to myself why is my back so sore, my am I so tired? Is it because I'm 5kg overweight, is it depression, did I fall on my knees to hard as a child? I just didn’t feel right, like a 20something should be, but nothing was really wrong either. That’s the best way I can describe it. I felt old, I’d look at my old man and think, I pull the same face and struggle to get up off the couch just the same as him, but he’s more than double my age? So November, I weighed 94kg (slightly overweight, but ate healthy and was still active) I had just gotten out of a 5 and a half-year relationship, that wasn’t a good relationship towards the end, lets just say I should have left 3 years before. I was starting life again, I had been controlled and isolated. Moved out of home young and from 17 lived with my now x. So to new beginnings, I was so happy, living life as if for the first time. I lost a little weight... ok without trying I lost 26kg in 3 months! That’s not normal? I was sick all the time too, from October I had a flu/cold that’s would knock me every 2-3 weeks. Id have 5 days of being well, then another cold, another cough. Bronchitis 4 times this year since January 2012. I kept going to the doctors, just started a new job in November too at the Red Cross Blood Service, then just took a lot of time off work (I had never ever taken a sick day in my life or with my previous employer 1 year before. Life was going so well apart from my health. @ admissions to the ED I got so bad. Symptoms were lack of appetite at times, nausea, feeling sick (mainly when I was sick) dizziness, tiredness, fatigue, lack of concentration, rapid unplanned weight loss, sick all the time, coughs colds, flu, differences in bowel motions, digestion difficulties. I was sent away from ED once, no answers, my bloods would flag some things as abnormal but in the end everything checked out. Raised inflammatory markers and high white cells and high platelets. Nothing ever came of it. Then I had a gastroscopy and colonoscopy, they were sure I had Crones, nothing came up, everything was fine, case closed, this specialist that’s specialist, everything’s fine case closed, then Id have to wait to get acute symptoms again to pursue everything further. I met my now beautiful partner in November, all the changes in my life were positive. He is amazingly supportive. He met me right at the very beginning of my journey and has been there every step of the way. He gave me my first flu when we met and from there he recovered but I never really did. Eventually I moved house and decided to change my doctor of 7 years, she had been wonderful but these days things weren’t getting done. I went to a new doctor on a whim, I needed a new prescription for the pill, while I was there I tried my luck and told him everything that’s happened and how I kept getting dead ends but felt like something was still wrong. Based on my symptoms he suggested a Haematologist, as an auto immune disorder had not fully been looked at or ruled out, and it made sense, I was sick all the time, must be my immune system. He said they will test even for the rarest blood disorders and if nothing came up again to come straight back to the drawing board with him and figure it out. The doctor he send me to also just happens to be an oncologist and decided to order a CT of the chest abdo pelvis. All the bloods were clear I was shocked. But there was a shadow in the first slide in my neck, 1cm down and it would have been missed. It seemed as if it was all by chance. The Ct was for chest not neck. I remember clearly how the doctor told me. Looks like its Hodgkin’s, it may not be or it may be another type of cancer but it looks like Hodgkin’s. From there I knew I had cancer. More tests reviled more lumps and more nodes affected. MRI showed some in my chest, PET showed it was stage 3, on both sides of the diaphragm. A fine needle biopsy could confirm Hodgkin’s so I had lung surgery to collapse my lung and remove some nodes for diagnosis. Then I had emergency surgery 10 days later for a lymphatic leak that’s was collapsing my lung. Two major surgeries later and I’m still healing. I started ABVD chemotherapy last week on the 4/7/12, one day after my birthday. I shaved my head on my birthday. I’m pretty positive and everyone tells me I make them comfortable about the news because I’m so positive. I crack a lot of jokes. It helps everyone not just me. I asked dad for a glass of water, he couldn’t be bothered so I told him it was on my bucket list. We looked at each other and pissed ourselves laughing, then he got me my water. My best friend told me she would hold my hair back while I threw up, after I shaved it. It may sound hard to some but to me it’s just a bit of humour, and if you can’t laugh at yourself you cant really be happy. I’m enjoying breaking stigmas for my friends and family, and making comfortable environment where they feel like they can approach me, and not be all hush-hush and secretive because I’m sick. I do worry about some things, like how it affects my partner and family to see me like this. Chemo isn’t going too bad, sure I’ve been a bit tired and I had one day where I ran out of anti-nausea tablets so I had to go back into hospital for IV fluids and more meds, but it wasn’t bad, I had a lot of the symptoms before I started chemo. I would want to eat much because I was sick, I felt nauseated etc.. So really it’s a lot better than what I thought it would be. I thought Id be uncontrollably vomiting and incapacitated most of the time. I'm not doing too badly. I'm due for ABVD therapy every fortnight for 6 months. I'm getting a PICC put in next visit, I love swimming, I find it therapeutic so I'm a little shattered I cant swim with a PICC, and I’ll miss out on Summer but hopefully 6 months goes by like the blink of an eye. I also wanted to say Thank you for those of you who made it to the end of my novel and I hope you gained something from the beginning of my story. Cheers Alana xx
6 Comments
New Contributor
That is one hell of a story and I got to the end with no trouble at all. You sound like a wonderful person and with the attitude you have you will do well. Thanks for the story it makes me realise a lot of things are not that bad.... chin up dear Lizzie1040
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Occasional Contributor
I too enjoyed reading your story . I agree that humor can really help, I hate when people tippy toe around me. Good luck with it all, I am so glad you found a doctor who was able to help. Cheers Rikki
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Contributor
Welcome Alana and thanks for sharing ur story. I hope this site is a great place to vent, share and provide strength at this very difficult time. So far my positive attitude has helped me through many tough times. I know ur positive attitude will go a very long way. Keep kicking some cancer ass 🙂 and good luck with chemo. Rubes
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Hi ALana, Wow I relate so much to your story, I can't believe how many similar experiences I have had, with doctors not knowing what's wrong for over a year, going to Ed and being sent back home confirming there is nothing wrong with me. You are very young and you will be all ok, it is clear how strong and positive you are and that will get you through. I was diagnosed with non hudgkinson lymphoma march last year at 32. And I have heard so many survivor stories of young ones with hudjkenson lymphoma. Lots o good news out there. Thank you for sharing your story. I will be thinking of you and praying for you 🙂
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Hi Alana. just wanted to let you know that if ever you need to talk about anything or you would like advice on anything my door so to speak is always open. Nothing but positive thoughts are being sent to you at from me
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New Contributor
Thank you everyone who has posted. Not doing too bad so far, getting use to a really cold head but my beanie collection is building. Thank you also for the support you have offered it is a very kind thing for a stranger to freely offer.
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