I have many visible scars from various diagnostic procedures over the last 18 months. I have a scar on my ribcage from my chest drain, a scar just under my arm pit, and a scar just underneath my right breast, from my Hodgkin’s biopsy. I also have scars on my arms from cannulas, and from a bite from my son, that wouldn’t have usually scarred, but because I was going through chemo, pigmentation was altered. Then I have a scar on my throat, from the thyroid surgeries. Those are permanent reminders of what I have been through. They won’t go away. People can see them (OK, maybe not the rib and breast one so much) and will wonder what they are. The ones that are bold enough might ask. The ones that aren’t might talk about me to others later, asking them if they know what it is. Those scars don’t bother me. It’s funny, because maybe they should. But I don’t find myself hiding my thyroid scar, by making sure I wear a polo neck, or a scarf or a necklace, because I don’t … [Read more...]
My Childhood Cancer Experience
I am often asked if I get tired of telling my story…the answer is no. Each time there is a different perspective to view it from, different lessons to learn from it, and new words to describe it. But most importantly, someone is hearing it for the first time, making me feel as though I’m sharing it for the first time. Despite the multitude of times I’ve told it, I always seem to have difficulties pinpointing where to begin- I cannot remember when and how I began feeling ill. It seemed somewhere in my conscience, I knew that my incessant coughing, sickly complexion, and unimaginable fatigue was something greater than the everyday ailments my doctor diagnosed me with. It was the fall of 2007…I grimaced as another needle drew another blood sample for what I was certain would be another misdiagnosis. The initial hope of being diagnosed with something “easy to fix” morphed into desperation for simply a diagnosis. Some nights I would lie in bed, fearing that I had … [Read more...]
Starting a New Fight
I'm not sure if I've mentioned here before that I had to have thyroid surgery recently? When I was having my PET scans for my Hodgkin's, they found a hot spot on my thyroid which didn't change with treatment. I was referred to ENT and after a biopsy came back inconclusive, they decided to operate. The operation included them removing half of my thyroid gland, and a lovely 3 inch scar on my neck (roughly where a man's Adam's apple is). Six weeks after my operation, I got the results. I had the obligatory chat on the way to the consultation room: “How are you today, Roz?” “OK, I think, I’m hoping YOU can tell ME.” We walked into the room and there was my surgeon, his registrar, another professor, a nurse, and a nurse counsellor. When there are that many people in the room, it’s never good news. Doc: “We’ve only had your results back today” Me: “Right. And…” Doc: “It’s positive” Me: “Meaning?” Doc: “It’s … [Read more...]
One Year Later…
A year ago, I went for my chest x-ray, after going to see my GP the previous day. That chest x-ray was the thing I needed to start the ball rolling to get my final diagnosis. 48 hours after the x-ray (Thursday), I was to get a call telling me I needed a CT scan the next day (Friday). I didn’t sleep from then until I saw the chest consultant (Tuesday). I was convinced I was going to walk into that room to be told they suspected Hodgkin’s, but now, they suspected a cyst. If only. The surgeon who was going to be removing the "cyst" that suspected it could be lymphoma because of the pain I was having whenever I had the tiniest bit of alcohol. The reason I saw him? Because I was bricking it about the operation, and wanted to see him to see if I could cancel it. He wouldn’t let me. That operation, or at least the thought of it, was the scariest thing I ever had to go through. I spent so much time reading up on it, I’d convinced myself I was going to die. I was asking my … [Read more...]
It’s Not Fair!
Today, I had quite a big "It's not fair" moment. Throughout my illness and my treatment, I've managed to avoid most of these, but not today. What, exactly tipped me over the edge, I don't know. I have heard of people coping fine throughout their treatment, and then afterwards reflecting back and realizing just what it is they've been through. Maybe that's true of me. I am a member of an online lymphoma forum. In this week alone, I’ve read about two (young) men who lost their battle with Hodgkin’s Lymphoma. A guy called Brian, who was 37, and left his wife and two children, and a guy called Mike who was 33. I’ve never met any of the people on this forum, and I probably never will, but you start to feel a sense of community with those that have been through, or that are going through what you have. My upset today was how my life has had to go on hold while I have fought and am recovering from this thing. And even now that part is over, I'm waiting for test results on my … [Read more...]
Remember the Time…
It's been 2 months since I finished chemo, and it's beginning to seem like a distant memory. It's strange looking back and remembering that every 2 weeks I had to go for chemo, and that every week I'd have a blood test. And what about the fact that I used to have to give myself an injection every 2 weeks? It all seems like a different world. I never felt like I had cancer. I don't know why. Maybe it's to do with the fact that I was never ill as I thought I would be after chemo. I expected to have to take to my bed for days on end, but it was only 48 hours after treatment that I would have my really bad day. The achy bones was my worst thing. I felt like an old woman. All of my bones, even my knuckles would ache, it was like no pain I had ever experienced. I would have rather given birth again! So, now it's all over, things have started to get back to normal, whatever "normal" is. It's been so long since life was normal. I say that, but in 2 weeks time I'm having an … [Read more...]
Lymphoma? What’s That?
Recently, I had the pleasure of helping out the Lymphoma Association at some Fresher Fairs. They were there to raise awareness of Lymphoma as part of their PITS campaign. I don't know what the stats are in the USA, but here in the UK, lymphoma is the most common cancer in the under 30's and the sixth most common cancer fullstop, yet we know so little about it. Whilst, I by no means am a medical professional, I have, unfortunately, come to know a fair amount about Hodgkin's Lymphoma over the last year. In a nutshell, lymphoma is a cancer of the lymphatic cells in the immune system. It is classed as a blood cancer and is spilt into two types. Hodgkin's and non-Hodgkin's. I don't know much about the latter, but there are a lot of different types. There isn't a cause of Hodgkin's, there isn't anything that you could have done differently, or not done to ensure you don't get it. Unfortunately, it's just one of those things. There are certain "risk factors" though. You are more … [Read more...]
I Fought Like a Girl!
Hi. I'm Roz, 29 from England. On February 9th this year, I was diagnosed with Nodular Sclerosis Hodgkin's Lymphoma. People have asked me if I was surprised when I got my diagnosis, and my answer is no. I'd been going to the doctor's with a Hodgkin's symptom since July 2009, it just so happens that because it was a very rare symptom, the GP I saw hadn't heard of it. I then saw another GP who also hadn't heard of it. This symptom was pain after alcohol consumption. We're not talking copious amounts of alcohol here, literally a couple of mouthfuls. I would get shooting pains in my shoulder, really intense shooting pains. I'd have to go and have a cry and a lie down for an hour, it was that painful. Alcohol pain is a very rare symptom of Hodgkin's. Not many people get it. The more common symptoms are night sweats, unexplained weight loss, painless lumps in one or more lymph nodes, itchy skin, and fatigue. The alcohol pain was my only symptom for a long time. For … [Read more...]
