Trials, treatment and yet more treatment

I  was unsure about writing a post completely dedicated to my treatment journey. The main reason for this is that my treatment has not gone to plan… at all! In fact that is probably the understatement of the century. Think Donald Trump being elected president of the most powerful country in the world… oh, wait, that actually did happen. 2016 really was a shitter wasn’t it! But also, I am acutely aware that, unfortunately, many of you reading this will be touched by cancer in one way or another over the years and I don’t want you to look back and go oh shit that JJ girl who wrote that weird blog said this was going to be awful. But, as my wise little sister said “No-one is going to go ‘oh JJ said it wasn’t nice, nah, I’m not going to bother’. Hate admitting she’s right but good point there G! But I think without talking about this, a significant part of the journey is missing so I am going to take the plunge and just say it. Cancer treatment is brutal!!  Like the worst thing you could ever imagine. And you are willingly offering yourself up to this. You value your life so much you are prepared to be dragged through life-altering treatment just for the chance to survive. That’s some serious commitment to staying in the world, believe me!

I think the first thing for me to say is that the world of cancer treatment is a minefield of medical jargon! Suddenly you are thrust into an unfamiliar and quite frankly bewildering world of blood counts you never even knew existed, ridiculously long drug names that I’m convinced they just play lucky dip in a bag of letters to come up with and there are so many different combinations of treatment that quite often you might meet someone with exactly the same diagnosis as you but on a completely different treatment plan. What most people don’t realise, myself included before I myself was thrust into this strange other world is that quite often you are given a combination of different drugs either at the same time or one after the other to achieve the best chance of success.

You are also actively encouraged and (to be honest in my opinion wrongly sometimes) expected to be actively involved in decisions about your treatment. Something which I myself found incredibly hard to deal with when a) I had no idea what they were talking about and b) I could hardly remember my own name never mind making the final call on decisions about my life! I remember on so many occasions practically begging my medical team to make the decision for me; I just couldn’t face being “responsible” for any more. I already felt like it was my responsibility to make sure the treatment worked and I genuinely got to the point just recently where I just didn’t care anymore about being asked what I wanted. I just wanted to be passive; to lie there and let them do whatever they felt they  needed to do. This was both a blessing and a curse -for me it was a relief if I’m honest but for those around me I think they found it hard to watch. I have always been staunchly independent and if I’m totally honest a bit of a know it all sometimes and here I was just nodding along and not even asking too many questions about what the doctors were suggesting. They worried I was giving up but to me I was just going into survival mode.

The following is the story of my journey through the first treatment I received during this year…

After my hysterectomy when the doctors gave me the unexpected diagnosis of locally advanced stage 3 cervical cancer, they then shone a beacon of hope for me to be able to live a relatively normal life whilst undergoing treatment. You have no idea how happy I was to hear this; the last thing I wanted to be a “proper” cancer patient. I wanted to still work, I wanted to not let this get in the way of all the plans I’d made. I was far too busy being JJ big boots for cancer treatment.  There was a trial that was half way through its 5 year plan. With an amazing success rate! It involved oral chemotherapy and a radiation implant rather than the traditional (and I have to say rather barbaric) radiotherapy and chemotherapy treatment. The plan was that for 8 cycles of 6 weeks each, you took the oral chemotherapy every day for 3  weeks and then you had a lovely, glorious 3 weeks off where you felt well. You also had a radioactive implant attached to your pelvic bone for 6 months that gradually released the radiation you needed to blast those pesky cells. The combo of these two types of treatment was supposed to be equivalent to 5 doses of high dose chemotherapy and 20 radiation treatments, the NICE recommended treatment for my cancer. None of the nasty side effects such as your hair falling out, changes to vaginal walls making them fibrous and painful, no extreme fatigue – the list went on.

I was in!!

So, 2 weeks after my hysterectomy, off I trotted to get this magic implant fitted. They simply went in through my belly button, drilled a very small hole in my pelvis and attached the implant on a loop, “don’t want it floating around your body do we” they joked as I heard them drilling through my bone.

It’s so weird writing this now because at the time it felt like all this took months, but actually by this time we were talking less than 7 weeks since I had been to the doctor and here I was already well on my way into the world of cancer treatment.

The doctors assured me it would take a good couple of months for me to notice any side effects from the implant, by which time I would have side effects from the chemo anyway. My partner picked me up from that appointment and I felt so well I asked to go out for a drive. We had a lovely day in my favourite little town, eating and me blabbering on as usual about all the things I was going to do; her nodding along at me – standard.

Within 6 hours I was writhing around in agony, my skin was burning, I felt so sick, I couldn’t stop shaking. I was scared, I was confused, I felt like I had no control over my own body… but I thought maybe this was how it was supposed to feel when it first went in, so I waited it out and then rang my trial nurse the next day. She was concerned about my symptoms but agreed perhaps my body was just getting used to it, people can have all sorts of reactions to things is what she said; I agreed. We scheduled for me to have my blood taken in a couple of days. During that time I’ll be honest I was in a lot of pain and distress. I didn’t want to admit how scared I was because my family were already so worried but wow when I look back I’m still not actually sure how I got through that time!

I shudder even now when I think of those first few weeks. Long and short of it is I got radiation poisoning . Your radiation levels were never meant to go above about 6 on this scale they used; mine went to 9 within 1 week of having the implant in and stayed like that pretty much for about 4 months. During this time I carried on going to work just as soon as I could – I was still determined. People kept saying why didn’t I have the implant out.  I couldn’t; if I did that I wouldn’t be able to continue with the rest of the trial and have to have “normal” treatment which I knew meant going off work completely. I wasn’t ready to admit defeat yet. I could do this!

The hair that they said wouldn’t fall out, fell out within 2 weeks of the implant being fitted, before I had even started my chemotherapy! I looked seriously ill (in fact I was looking just now at pictures of myself from that time and I don’t look much worse now, and I’ve now had a year of treatment and some seriously strong chemo in the past few months). My choices were carry on and have a blood transfusion in the hope that would help my body to process some of the radiation, or come off the trial and have the implant out. Now, I have (had I probably should say, I look forward to receiving it now- oh the relief of transfusion day is unbelievable! How things change!) a serious phobia of blood so the idea of a blood transfusion seriously freaked me out. On the day I had my first one my best friend was messaging me as I was there in the hospital hooked up to all the machines: “I’m sprinkling some unicorn dust on the blood. It’s not blood anymore, you’re fine”. Little messages like that were what I held on to during those first few months when everything was so new and scary. I couldn’t admit how petrified I was – if I did I would crumble.

During my time on the trial my cancer spread. First they discovered it was in lymph nodes much further away from my original site and I had half the amount of lymph nodes you have in your body removed (you have waaay more than we realise by the way). At this point the doctors were still quite confident that the treatment would work and, although I no longer fit the trials  guidelines to be included in their data, they suggested I continue because they couldn’t recommend better treatment at the time. I was happy for these couple of months. We went on the holiday we had booked the previous year, pictures of me in cool headscarves on the beach uploaded to facebook. Although it had spread I was convinced it had been in those lymph nodes all along and had simply only shown itself now. I was having regular blood transfusions to keep the radiation under control. Don’t get me wrong I was exhausted all the time and pushing myself to the limits of my abilities. But I was still working for 4 out of the 6 weeks in each cycle, although at reduced hours and temporarily leaving the job I had just moved into before my diagnosis to help things be more manageable for me. My hair grew back during that time as well as my radiation levels were kept under control and I sported a funky short do. Work were amazing; my friends and family were so supportive. We’d got into a routine – we all knew 1 week of the 6 I was in bed, I could hardly lift a cup and needed constant help, then I would pick up again and tell them all to bugger off. I had this!

And then came the big blow. Suddenly I got really poorly out the blue. One day I was okay, I was managing, the next my blood pressure plummeted to 60/40 , I could hardly hold myself up, I felt like my body was racing yet all I could do was lie there. I had no temperature control. I lay there in bed breathing fire breath onto my sisters arm yet I was shivering I felt so cold. My wonderful nurse said she wasn’t happy and did a full blood count. My cortisol level, which is responsible for all your adrenal responses in your body was through the roof. Why?

Turns out I was “treatment resistant” to the drugs I had been on for all those months and whilst myself and my doctors had been working hard to keep me well my cancer had been having a little party in there! When they scanned me my kidneys and adrenal glands lit up with tumours; the cheeky bugger had made itself well at home in there. My friends and family were devastated. All I felt was guilt. To be perfectly frank I couldn’t even look any of them in the eye I felt so ashamed. Why hadn’t I been able to stop it growing? Why didn’t I just have the traditional treatment from the start? Why was I so stupid to not notice my kidney function declining to that point?  I have to say, I’ve still not quite come to terms with this part of my story and I don’t think I’ll ever be quite okay with accepting that it is just one of those things, no matter how much I beg my family and friends to believe that. I’ll always feel that in some way it is my fault and feel awful that I am putting the people I love most through this next stage in my life. That’s the thing isn’t it whenever anything horrendous happens… you question it and it takes time to come to terms with;  it’s completely normal,  I know this, and yet there are times when I still question why on earth I am putting myself and the people I love through this.

So, I sat there in a meeting with about 6 medical professionals and little old exhausted me discussing what they felt they could do for me next. “It’s time to bring out the big guns” they said…

It was time for some serious cake to get us all through!

JJ x

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