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Week 5: PET Scan Results

Photo: Courtesy of Ariane Mason.
It’s been quite a while since I wrote my last blog post, mainly because I spoke way too soon and chemo did indeed get the better of me.

Diarrhoea, mouth sores, neutropenia, bone aches, migraines, exhaustion, mental fatigue, constipation, muscle cramps, anxiety, shivers, insomnia, piles, tooth infections, acne, weight loss, weight gain, stomach cramps, raised heart rate, hot flushes, nausea, joint aches, dizziness, hair loss, water retention, swollen ankles, sun spots, trapped wind, fevers, anaemia, breathlessness, paranoia, loss of energy – thanks chemo, you angel in devil child clothing. I know you’re making me better but is this all really necessary?

Hodgkins is a type of blood cancer that affects the lymphatic system. The lymphatic system is part of the immune system. It contains a fluid called lymph which circulates clear, infection-fighting fluid around the body. Hodgkins develops when lymphocytes (part of this fluid) start to multiply in abnormal ways and collect in weird places. Chemo is designed to kill all these nasty abnormalities but unfortunately in its war path it also destroys all the good blood cells too – neutrophils, white blood cells and haemoglobin.

So all this means that I’m having a double whammy of blood fighting fun this summer. The cancer is killing my good, infection-fighting blood cells and the chemo is killing my good, infection-fighting blood cells. As well as all my other blood cells. Basically, my immune system is fucked and my blood counts are suffering. And what happens when your immune system is fucked? You get infections. Constantly. You have to take extra precautions to stop you getting infections, doing obscene things such as not eating brie, blue cheese or shellfish, eating a steak well done (the horror), washing your hands a million times a day, not mixing with babies or children and not going to crowded places. You do all of this and then get an infection anyway. If your temperature goes above 38c, that’s it, busted. The first time this happened I called the chemo helpline at 11pm on a Sunday night. The nurse told me to immediately go to A&E. Once there I was treated like absolute royalty – no waiting for eight hours in A&E before getting seen, no no, I was rushed straight through onto a bed and hooked up to a drip of antibiotics to flush out any infections before they developed into sepsis. Or “bleaching the body” as the nurse so beautifully put it. Once the bleaching had finished I was admitted into hospital for few days, pumped full of more antibiotics and then discharged with more antibiotics which continue to play havoc on my system for a week or so.

There’s also the anaemia to put up with, caused by the chemo bashing the living day lights out of my haemoglobin. Intense headaches that just won’t go no matter how many pain killers I take, getting out of bed and almost falling over from dizziness, getting out of breath just from walking up stairs, jelly legs and the constant feeling that I’m going to pass out. To counteract these lovely side effects I’m given a blood transfusion. I’m hooked up to a drip of blood and it slowly transfuses into my body. It’s a strange concept, having someone else’s blood pumped into you, but so worth it. Within literally an hour of having the transfusion the colour returns to my cheeks and I’m back to my old, hyper self. Dracula ain’t got shit on me.

I’ve had two blood transfusions so far and have been admitted to hospital three times with a possible infection. It’s pretty boring if I’m honest. That’s the thing with cancer, it’s boring. Your whole life seems to revolve around it. The constant checking of temperatures, the 37 days in hospital in just three months, the small talk about how I’m getting on, the cancelling of plans because I’ve been admitted to hospital, again, or because I’m too tired to do anything; the stares on the streets from strangers for having no hair. Cancer, cancer, cancer following me around like an annoying, small dog.

I’m now halfway through my treatment and it’s becoming a slog. All the words associated with cancer, that I didn’t connect with initially – battle, fight, struggle – are becoming very real for me. Week by week, treatment by treatment, it is starting to get tougher. The cumulative effects of chemo are slowly starting to ebb away at my positivity and strength. Three months until this is over, I have to keep telling myself, three more months of chemo and then a life time of FUN.


4th August 2016, another momentous day in this journey. PET scan results day. The day which determines whether or not I am in fact fighting cancer’s ass.

The usual gang (parents, Baz) arrive nice and early to hospital and take our seats in the waiting room. I’ve made extra effort today, put on a leopard print head scarf, lots of jewellery and make up in a bid to look like I’m definitely fighting cancer. That somehow, by having the outer appearance of health and togetherness, that that will mean on the inside my body is acting in much the same way, fighting the cancer cells and providing the good results I’m after. There’s a lot of self willing going on as I sit in that waiting room; there’s a lot of self willing going on daily in my head. The nurse comes over to tell us that unfortunately, due to IT issues, there’s been a problem receiving my scan images from Cheltenham. Are you fucking serious? IT issues? One of the most important days of my life to date and you’re telling me you’re having IT issues?

Finally, an hour and a half later (the longest hour and a half of my life), we’re called through. First I’m weighed (standard practice before clinic) and I am 60kg, which means I’m back to my normal, healthy weight – a good start. Chris [consultant] hands me the results from my PET scan. "Just read the first line of the conclusion", he says. “Ariane has had an excellent response to treatment.” And now something weird happens. I can’t quite grasp what I’m reading, I can’t process it, I almost don’t believe it. I don’t suddenly feel elated and full of joy. I’m not over the moon and wanting to go out dancing across the roof tops. It doesn’t connect with me. It doesn’t sit right. It isn’t good enough.

Chris takes some time talking me through everything. I am PET Negative. Confusingly, this is in fact a positive indicator that means I am responding to treatment and the cancer cells are starting to diminish. He shows me my scan images. The yellow lights that were previously dotted all over my body on the first scan have gone out. There are no more yellow lights ANYWHERE. Chris is very certain that I’ll be in remission once my treatment has finished. We also decide that for the last half of my treatment, I’ll be put on a much less intensive chemo regiment called ABVD. Prior to this I’d been on BEACOPP-14, which is a very toxic and pretty intense chemo. He assures me that this should be an easier chemo to cope with, with less serious side effects both in the short and long term. I still need reassurance “So it’s good news then?” I ask him. “How much better could it be?” Chris’ straight up tone helping to reason with my confused, fuzzy chemo brain. “Your B symptoms have gone, you’re responding to treatment, all the lights have gone out, you’re looking and feeling much better – it’s a fantastic result.” So I’ve passed the first cancer test with flying colours, grade A patient.

We leave the room, each shaking his hand, thanking him as much as we can. I grab his hand, shaking it vigorously and looking into his eyes for probably too long; how do I thank someone who is saving my life? We’re in the corridor and both my parents and Barry gather round me, crying. “Such amazing news,” they shout. “Oh my God, fantastic.” They hug me and I can sense the sheer relief in all of them. Outside in the car park we have another group hug. But I won’t let myself feel relieved, I still need to be practical, I still need to stay grounded. Their joy almost fills me with doom. I am a realist. I know I am only half way through my treatment and that no matter how much support I am given, no matter how many people love and care for me, no matter how much PMA I show or brave faces I put on, cancer can still be a bitch and throw things at you when you least expect it to. This battle is still very real and ultimately it’s my poor body that’s going to be dragged through this, one blood bashing chemo at a time. I don’t want to allow myself to get excited because I am scared, very, very scared, still, and I know that although the cancer is going, it has not yet gone.

And then the guilt kicks in. Guilt’s an evil bastard isn’t it? Why have I been so lucky? What about everyone else battling through cancer who don't get the results they want? What about them? Why is my current fate better than theirs?

It takes a few days for the enormity of these results to hit me. And like with most emotions, they hit at the most random of times. I’m sat on the toilet and suddenly the relief floods me. A huge smile spreads across my face, I do a few mini fist pumps and the tears roll thick and fast. All the courage you have shown, all the positive energy you have been channelling, all the mental and physical pain you have been through has all been worth it. You are kicking cancer’s ass. You are getting better. You are going to be okay.
Read the first part of my story here
And the second part here
Part three
Part four