For those of you who haven’t seen the hashtags and posts of people sharing their stories; today is World Cancer Day. A day where people from around the world campaign for awareness about every single type of cancer you can think of.
While the majority of the awareness posts you see will be about breast cancer, cervical cancer, testicular cancer, prostate cancer, and leukaemia (not hating on these for getting more awareness, they are the most common, so of course they’re going to!), I’m going to attempt to bring awareness to the cancer that affected me; Lymphoma.
Don’t know what Lymphoma is? (Well other than that it’s a cancer, of course). Don’t worry. Neither did I until I was told my the doctor that I had it. While I am no medical expert, I am going to briefly explain what Lymphoma is before linking to all those credible websites that I was directed to when I was diagnosed. But first, here’s my story. In full in a brief nutshell.
It was December 2014 when I first discovered the lump. It was right at the base of my neck, just above my left collarbone. For a brief moment I dismissed it; that side of the collarbone had always been a bit more “chubby” than the other so I just thought it was that. But as I put my hand on it, I could actually feel a real lump there. With my granddad dying from Leukaemia a mere 6 months before at that point, I immediately panicked and phoned the GP, who told me to come down as soon as possible to have it checked out.
As soon as I was in the consultation room though, my worries were put to ease. The doctor told me that it was one of my lymph nodes that have swollen, but since I’d recently gotten over the flu, that was more than likely the reason it had swelled up as it tried to fight the infection off. I was told that it should go back to its usual size soon, but if it hadn’t within 4 weeks to come back in as they’d have to investigate further. I thought that would have been the end of it.
As you can guess it was far from the end. The death on my nan postponed me going back to the doctors a little bit, but I was back in the GP’s by mid February. The lump hadn’t gone down… in fact it had gotten bigger. I was worried. After everything I’d already been through in the past few months, this was the last thing I needed.
My GP put me down for a series of blood tests. They all came back fine. He sent me off for another load. They came back fine too. It was then he sent me for an ultrasound scan, which is where things finally started to become a bit clearer. The radiologist couldn’t tell me much, but he told me that it wasn’t one swollen lymph node but two, one underneath the other, and that they didn’t look the way they should. He then referred me to the maxillofacial department in order to get me down for a biopsy. This was in mid March 2015.
By the beginning of April I was being examined by the surgeon. From then on things went very, very quickly. He booked me in for my biopsy a week from that day, being sent straight to have my pre-op check up that day. My biopsy was done under general anaesthetic and was supposed to be an outpatient procedure. It ended up being inpatient, though, due to some complications that arose during the surgery. The next day I was discharged and had to wait a week to get my stitches out and get the results. Then I was diagnosed with Lymphoma. We were mid April by this point. The next couple of weeks I had a series of scans to determine the stage of my cancer, had meetings with the cancer team to discuss my treatment, and by May 5th I was starting chemotherapy.
So what is Lymphoma?
I won’t go into too much detail as I’m no medical expert and there are plenty of expert sites that can tell you much more. But lymphoma is a cancer of your lymphocytes, one of the types of white blood cells that you have. Like all kinds of cancer a mutation occurs in the lymphocytes and they mutate at a quicker rate; hence the swollen lymph nodes/lumps begin to show. There are two types of Lymphoma; Non-Hodgkins Lymphoma and Hodgkins Lymphoma (which is also referred to as Hodgkins disease.) The difference between the two is difficult to explain, and like I said I’m no medical expert, so I won’t go there. I was diagnosed with Hodgkin’s Lymphoma.
The most common symptom of Lymphoma is the swelling/lump which are most often found in the neck, armpit, or groin. As I’ve mentioned my lump was in my neck, but it was actually two swollen lymph nodes in that area instead of one. Usually the lump is painless, but my nurse said some people experience pain there when they’ve consumed alcohol which I could never quite get my head around. For some people this is the only symptom they have. Others experience what are called “B symptoms”. Lymphoma patients will have A or B put after their numbered stage depending on whether the showed other symptoms or not. A is no other symptoms. B means they showed other symptoms. In my case, I was in the B category as I showed the symptom of drastic, unintentional weight loss (from June 2014 to December 2014 I went from a size 16 to a size 10).
Of course just because you have a swollen lymph node doesn’t automatically mean you have Lymphoma. Like I said, my GP originally thought they were inflamed because they had recently had to fight off an infection. But if you do have a swollen lymph node DO GET IT CHECKED OUT. It is more likely to be nothing than something, but it’s better to be safe than sorry, and your GP will take it seriously.
Lymphoma can be quite an aggressive cancer BUT is super responsive to chemo, so can be treated relatively easy. As for kind of treatment you have it varies from case to case as far as I’ve seen. Some people just have chemotherapy, some people have radiotherapy as well. For me I just had ABVD chemotherapy, which was given to me every two weeks. My treatment was supposed to be 6 months, starting on 5th May and ending 5th November 2015. However, due to responding really well to treatment I manged to get away with only 3 months of chemo and was given the all clear in August 2015. Just in time for Reading Festival which I’d brought tickets for before the diagnosis. — I should have just sold the ticket, though. While it was a great weekend, my body was in no way ready for it after being round house kicked by chemo. I was running on empty by Friday, and got the most disgusting case of festival flu which knocked me for six and I couldn’t shake it off for 2 weeks because my immune system was non-existent.
Like I’ve said, cancer and it’s treatment effects everyone differently but chemo absolutely knocked for six. I think it was the fact it was every other week, but I literally would only feel vaguely good enough to go out and do things for the last 3 days before the start of the next cycle. Another problem I had was with my veins. One of the chemo drugs can be particularly nasty and caused some stinging and pain (can’t quite remember the reason why). It was solved quite easily by just slowing down how quickly the drug went in, even though it did double the treatment time. Some people get PICC lines put in before treatment, but I was stupid enough not to. Let’s just say if I ever had to go back and do it again, I’d get the line in. It got to the point it was difficult to find a vein that actually worked, and it sent my anxiety though the roof so much so I took Valium for the last 4 treatment sessions. — To the nurse I hit on while under the influence of those drugs, I am very VERY sorry.
Side effects of the chemo also very. My hair survived the first two treatments but after a while started to fall out. For a minute it was sad… but then, as much as I hate to say it, it started to get very annoying. I remember going to a birthday party on one of my good days. They had a BBQ and I remember my friend shouting over “Johanna, your hairs in my burger!” It was mortifying. Let’s just say I shaved my head and donned wigs a week later. The sickness is brutal, but there are drugs combat that, which worked pretty effectively, even if I did have to take them more often than originally agreed. The things I struggled with the most was the mouth sores that chemo caused. I was given a mouthwash to combat it, but it never seemed to work for long, and sometimes even so much as drinking plain old water was painful. The other thing was being neutropenic all the time (which basically means I didn’t have enough white blood cells cause chemo killed them all, so I was stupidly vulnerable to infection) which meant I had to inject myself with a stimulant in the stomach everyday. I remember the first time I was so scared of doing it, but by the end I was just all like stab and go!
What causes Lymphoma is still actually unknown, which sucks, but basic cancer causing factors do put you more at risk. Hodgkins Lymphoma is usually found in people in their 20’s or 70’s and non-Hodgkins in people over 65. BUT IT CAN OCCUR AT ANY AGE. So please, please, please keep checking your lymph nodes. It’s literally just as simple as checking your breasts/balls for lumps and is just as important, really. Ever since my diagnosis I make a habit of checking my neck, armpits, stomach, and groin for any signs of lumps and I suggest that everyone else does the same.
For now, I’m all okay. I’ve been in remission almost 1 year and 6 months now, and hopefully that streak continues. But for now it’s another 3 years and 6 months of regular check ups to make sure the nasty lumpy doesn’t show his face again. Even after the 5 year mark it may still come back. While chemotherapy and radiotherapy does treat cancer, and in my case at least treated it very well, you couldn’t actually call it a cure. Relapses happen. They don’t happen to everyone, but they do happen. And that’s the fear that every single cancer patient has for the rest of their life.
What I’m trying to say is cancer is no joke. So, while it may sound cliche, please check yourself before you wreck yourself. Feel for lumps, go to your smear test when you can get them, go to the mammograms too. Literally any sign of cancer GO GET IT CHECKED. It’s more than likely to be nothing, but it still could be something. My swollen lymph node could have easily been due to fighting an infection, absolutely nothing. But it wasn’t, it was something, it was cancer. If worst comes to worst, you’ll be thanking yourself you got it checked and caught it early like I did, rather than have left it because you thought you were being stupid and now it’s harder to treat.
Want to find out more about lymphoma form a better medical perspective? MacMillan explains it brilliantly. It was the first site I was point to when I was diagnosed and was one of the few that explained it in words I actually understood, so hopefully it helps you guys out too.
Since it’s World Cancer Day, there’s a group of charities that have come together to campaign. Take a lot at their page, maybe buy one of their unity bands, and donate. I’ve brought a unity band and plan on donating to CLIC Sargent as they are the charity that helped me through my diagnosis. Here’s the list of charities that have partnered up this year;
- CLIC Sargent
- Cancer Research UK
- Breast Cancer Care
- Breast Cancer Now
- The Movember Foundation
- Anthony Nolen
- Bowel Cancer UK
- Children’s Cancer and Leukaemia Group
- Marie Curie
- The Royal Marsden Cancer Charity
There are also plenty of bloggers out there supporting the cause today, some who’ve had cancer, and some have had someone close to them experience it. Here’s just a short list:
- Nick from Pounds and Sense is posting about his diagnosis of prostate cancer.
- Nicola from Sparkles At Midnight is posting about her diagnosis of liver cancer.
- Barbra from The Crafty Caker is posting about her niece’s who died from neuroendocrine cancer
- Bex from The Art of Healthly Living is posting about mesothelioma and how exercise can help relieve the symptoms.
- And Emma from Jigsaw Parenting has two posts. One about cervical cancer and one about Acute Lymphoblastic Leukaemia