The first time I went to the Oncology clinic I was nervous. I knew I was one step to finishing my treatment, but I had no idea what would be in store for me these next few months. I cried a lot. In the waiting room, in the toilets, in the chemotherapy day unit. I’m a curious human being so I had already googled my condition and my treatment to see what could possibly lie in store for me. I asked questions to several doctors, nurses, you name it… I wanted to have some sort of control over what was going to happen to me. My life really did take a dive and I was powerless to stop the change. I did pray as I sat waiting for the drugs to be prepared that God would guide the drugs and destroy all the bad stuff and leave all the good stuff untouched. I have never prayed so hard in my life! I just kept saying, ‘Lord, just protect my organs and good cells and let the drugs to their job in getting rid of the annoying, nasty stuff’. Let me explain a little more about what’s been going on so you can see where I am coming from a little more.
The first and only sign that I had cancer was noticing a large lump on the left side of my neck just before the Christmas of 2010. Looking in the mirror, I thought it was weird as it was only on one side. Cancer didn’t cross my mind – at least not on a serious level. I joked with my flat at university saying ‘Oh look, I’m growing a second head’, ‘It’s become a part of me now, I’d be sad to see it go’ and ‘Oh, what if it’s cancer’ (chuckle). I didn’t take it very seiously as you can tell. I mean who would want to even consider that to be a possibility? I thought I was under a lot of stress and it was nothing more than a swollen gland. However, it was soon becoming clear that my second head was indeed not getting any smaller. Was I a medical marvel and should start thinking of names for my future companion or actually book an appointment with the GP in Plymouth? (I was at university at the time – I am not that crazy living in Swaffham and wanting to travel 6 hours for a doctor :P). Seeing the doctor, he quickly referred me to the hospital to have a biopsy, so they would operate on my neck, take a sample of tissue and then determine my fate. The referral letter the GP gave me was the first big scare and the real eye opener to what could happen. The words were written ‘to eliminate a possibility of cancer’. Yeah. That would do it. First major tears as soon as I got back to my flat. The GP said I shouldn’t worry, it was likely nothing and tried to comfort me… I actually laughed and told him that I am sure he has to say that…
Anyways, before I even had the operation, I saw a consultant who arranged for me to have two needles shoved into my neck for cell samples and an ultrasound. That was quite uncomfortable for someone who was then not too familiar with needles! There was a lot of scraping of my skin to get cells and I can just imagine my lovely friend Emily Raven shuddering at the thought. She was the lovely support that day I went to be told officially that it was Hodgkin’s Lymphoma. When I was told I had cancer, I pretty much went with it.. until I asked if I had to leave university and the consultant said it would be for the best. I then burst into a never ending stream of tears. The biopsy then went ahead the following day and I waited a few days before it was made known I would have to leave university that weekend. Hardly had enough time to say goodbye to everyone. I actually didn’t get to say goodbye to everyone, which was pretty harsh, but everything happened so quickly.
I realise I have written an essay and you are all still wondering what the hell Hodkin’s Lymphoma is. I think the best thing to do would be to link you onto a website that explains it clearly: http://www.macmillan.org.uk/Cancerinformation/Cancertypes/LymphomaHodgkin/AboutHodgkinlymphoma/Whatislymphoma.aspx
It really is quite a lot to explain so please, read about it to gain more of an understanding of the general diagnosis.
I decided to undertake a clinical trial at Addenbrooke’s Hospital in Cambridge. It is called a RATHL trial. http://www.cancerhelp.org.uk/trials/a-trial-looking-at-pet-scans-and-treatment-for-hodgkins-lymphoma
By participating in a trial I felt I could help others in the future who are diagnosed. Trials are needed to help decide on the best course of treatment using the latest research against the best existing treatments etc. Where would we be without modern nedicine and discoveries if methods were not tried and tested? I wanted to give back something to the world of medicine as I was relying upon modern treatments to cure me. I had to have a PET scan which is an extrmely detailed scan, like a live feed of how the cells and organs are working at that precise moment. There are only a few in the country and the point of the trial is to see if these scans can contribute to decisions for treatment for Hodgkin’s. You have to have a radioactive liquid injected into you and wait an hour before having the scan. Then you lie on your back for half an hour with your hands above your head. Very slow and boring. I have recently seen the scan and I had a lot of cancer going on!
Then after all the fun and games of the above, I then had to complete 2 months of chemotherapy before having another PET scan to see what difference the treatment has made. (The second PET scan results were awesome… after only 2 months I had only two hotspots on either side of my neck and a bit under my arm – amazing!).
My post is called ABVD because that is the name of the drugs that are going into me. There are four types: Adriamycin, Bleomycin, Vinblastine, Dacarbazene. Originally, I had a tube going directly into my chest for the first 2 months where the drugs were being pumped into. This was called a central line. I was always worried about getting a clot or someone tugging at it and it falling out! I had an infection and was in hospital for a week. My central line had stopped working, but they didn’t remove it straight away although it was on the ‘to-do’ list. One night, I woke up and felt a pain under my armpit and in my neck, like when you lay on your armand it becomes stiff almost. However, me being the lazy bum I am, I went back to bed. The next morning my neck vein had enlarged and I found out I had indeed got a blood clot in my chest and under my arm. Great. Just another thing. I had the line removed the day after I think and had a new PICC line put in my left arm, which is just a longer tube that travels up your arm and into one of the main veins near your heart. Due to the clot, I now have to inject myself in the stomach every night with a blood thinner for 6 months which is really awful, but I am used to it now and it has become second nature. The PICC line didnt last that long either to be honest… it got infected. My body hates me haha :). So now I have a canular every 2 weeks in my hand to pump the lovely chemicals into me.
I haven’t had as rough a time as some people. The only side effects were my hair started to thin (it never fell out completely), so I had did the brave thing and asked to have it shaved off. I looked like a menacing skin head for ages. However the beauty of wigs and head scarves. It’s growing back really fine now… a bit like baby hair… awwwwww. At first, losing my hair was the worst thing in the world I could have ever thought to happen. I was wrong and I had a lot more challenges in my way since the beginning of being diagnosed. I felt really nautious the weekend after treatment for the first few months or so. I lived on ginger biscuits and sprite…and bread sticks. It wasn’t fun. But I have a new pill now which has conquered that feeling so far, so let’s hope it works for the last few months! Apart from that I dont think I have had anything else to worry about which has been awesome. Admittedly the annoying stuff that happened in hospital and the injections have been a setback, but mild in my opinion.
My post ABVD (Another Brave Victorious Day) really emphasises that each day is a victory. I am having my next lot of chemo this thursday so really thought I should explain a bit more about the last few months to put it into some context. I feel that I have been brave through it all, but looking back and still looking forward, God’s hand has really been on my life. I am feeling victorious as each time I have the chemo I am getting closer to beating the cancer well and truly. Also, it is another victory for God, that I can use my experience to give Him the glory and say, ‘Hey, Big G has really been looking out for me!’
I have written another essay and I could go into more depth as this year has been jam packed full of medical mojo. It is an insight into my world these last few months. Chemotherapy officially should end on July 28th and then I will have follow up checks and hopefully can be released back into the wild again! God is permitting this to happen in my life and already I am noticing the change as I have become more eager to learn about Him and have started this blog to share with others.
Here is a verse of encouragement (one of my favourite in fact):
“…we also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.”
I pray today that you can see God in not just the beauty of nature or the love that we show each other… but you can also rely on him when suffering and hardships come. He is always there, day or night for a chat! Pretty awesome stuff if you ask me…
Take care and God Bless!
If you've recently been diagnosed with Hodgkin lymphoma and have yet to receive treatment you could be eligible to take part in a new clincial trial. Read more here.