"Nice ginger hair" - "Thanks, not for long, I have cancer!"

Telling people you have cancer is a strange, hard, painful, funny and weird thing. It's a whole mix of emotions. I chose not to tell anyone other than very close family and friends till a few days before I was beginning chemo, which for me was a good couple of months. I felt it was only fair I let myself and the small group of people I knew it would hurt most to get their head around it before I went and told everyone. I went through multiple test, surgery, IVF and another minor surgery without really telling anyone. This worked for me.

 I had to tell some people in work and simply saying the word cancer was like a punch to the chest that griped my heart and choked me bringing stinging tears to my eyes. It's just a word... I had said it before... my dad had it for goodness sake! But this was different.

When it finally sets in that 'wow this is actually quite scary' it breaks you a little. I remember talking to my boyfriend about what was to come and we just got really upset all of a sudden and told each other how scared we were with quivering lips and tears then just holding each other tight and saying it will be ok, but I kept thinking "what if it's not ok?" I'm forever grateful I had him to be through every step with me.

I met and old friend in town and he said "Nice ginger hair" and I just came out with "Thanks, not for long, I have cancer!" I giggled a bit and when I stopped and realized with his face that was only funny to me. I did a thing that became a regular occurrence, I had to comfort him, tell him it was "baby cancer" that I'd be ok and so on. I soon noticed that as I got used to it, telling people started to hurt them more than I and I had to say things to make it ok for them.

It was a few days before I was scheduled to start chemo and I was fed up having to go through my cancer story with people I was telling so I decided that since the majority of the people I knew were on facebook I'd make a post there to tell people and anyone that didn't know via that i'd tell when I met them. So, on the 30th of January I made a post saying
"I have cancer, lets discuss?
I've tried telling everyone individually and I'm sure I'm gonna have missed a few and they'll be upset I never told them, so, here's your opportunity to ask me about it while I feel up to it."

It was comforting to hear people say how well I seemed to be dealing with it, it made me tell myself I was. Heck I even had organs offered to me! haha I really love the people in my life, each and every one of them are special whether I see and talk to them every day or when in times of need.

Boobies, kitties and cancer.

Not long after my diagnosis I tried to get myself into a mental state of "I can do this!" I tried to think of ways to make myself feel better about the whole thing. I expected the many hospital appointments and notes to come so what I did was get myself a nice new diary for the upcoming year, a nice vintage pin up type one so that when I was in the docs office taking an appointment I could open my diary flashing some Bettie Page style picture. This was my idea of fun and I knew it would at least make me smile and maybe even cheer me up a bit. I totally recommend doing something like this, maybe even get cats? or space ships? or Doctor Who? something you know will make you smile. Plus, organization is key and all that.

Next I tried to make my living environment as clean and comfortable as I possibly could. I tidied, de-cluttered, cleaned and rearranged everything in my room. I then got myself lovely new bed sheets and candles and stocked up on a bunch of stuff from Lush. For me, my room was were I spent most of my time so it had to be super comfortable and clean because my immune system was already failing me and I knew it would get worse.

My kitty Sebastian showing off my bedding

I then bought and borrowed a bunch of games and books and stocked up on snacks. Living in ones room gets boring fast so make sure you have something to keep yourself entertained. I also had all seasons of Doctor Who, Bones, Castle and Batman the animated series on my laptop. I tried to think of things that would keep myself and my mind busy so I got into origami, cranes were my favourite with their symbol of good fortune and longevity.

I tried to make the most of my hospital trips, most of mine where to Glasgow. A place I had been surely 1000 times but it turned out there was lots of places yet to be discovered. Even just going a nice walk will lift the day. I'd go for food (breakfast being favourite) to museums, gardens whatever was close. One of my favourites was to the Glasgow Cathedral. I think it was because I have an affinity to old things, also I like to believe I'm a princess.

This feels like self harming...

Next I want to talk about something I feel is very important for others out there who may be at the start of their diagnosis/treatment. I was diagnosed in December but I didn't start treatment until February 5th even though I was at a late stage and the doc wanted me to be treated ASAP. Why!? you ask, that's madness. I was told that if my treatment needed to be altered further down the line that there was a possibility that it would affect my fertility and at that point it would be too late to take any precautions. I didn't want to take any chances.

As I said, I feel this is very important because I wasn't offered fertility preservation right away, I has to ask about it and for others with the stress of the bigger things that are you going on you can forget about the little future things that affect your quality of life or life progression depending on how you feel about it. However, if it is essential to your well being that you skip fertility treatment and go straight into chemo, then do it. Fertility treatment wouldn't be worth it if you're not around in the end.

Ok, back on point. I was put in touch with and IVF clinic via my consultant, luckily it was only a 40 minute train ride from where I lived. I will say, if this is a route you choose to take, leave your dignity at the door, your partner also if they're involved. I had my first appointment at the clinic on the 11th of January, I took my mum for support but thinking back it would have been better taking my boyfriend purely because it was decisions we both made together in the end and my mum had her opinions on what I should do but ultimately its what you or both you and your partner want. Perhaps take a friend if you're doing it yourself. The first appointment was information loaded, all about what drugs you will be taking, their side effects, the overall procedure and your options. These options are egg or embryo freezing. I chose embryo freezing as I had talked it over with my boyfriend, everything. There is a lot to think about before you make this decision. How long have you been with your partner, is it a stable relationship, do you trust them and so on because there is a large pile of forms to tick boxes on and sign and in amongst those forms there is consent, if you break up, will your partner still allow you to use the embryo's if you need to? If not then opt for egg freezing. I have been with my partner CJ 5 years, just over 4 at the time and we are very stable, trusting and all the rest, we still talked it all over even though we knew what we'd do.

Remember what I said about your dignity? Well... Also on the first appointment I had to get a ultrasound scan. Not the easy peasy lie on your back and get some jelly on your belly type scan. IVF scans are... internal. Very uncomfortable but very necessary. They show the nurses what your system is like, they need to see how accessible your ovaries are and such. I discovered through this that I have a heart shaped uterus, who knew! This did change anything, just means in future I can only have 1 embryo at a time because if two succeed and I had twins it could create complications, plus I can pretend i'm the Doctor (Who) since I wouldn't be lying when I said I have two hearts. The scans are regular thing, they happen every few days so that egg growth can be monitored. Oh and they're vamps! Each scan appointment will also include blood checks to monitor your hormones.

On the second appointment I brought my boyfriend CJ. We had a ton of forms to fill in, we both had blood taken (they have to check for HIV and such), I got scanned and he had to provide a sample for sperm analysis, so yeah, again with the dignity thing. Top tip - tell your partner to bring their own eh... material... hospital environments aren't very relaxing. Before I left I was give a little case full of syringes filled with hormone related drugs which you are shown how to inject by yourself, all the injections are done the same way, subcutaneously (into fat) into the belly or thigh.

 The first one is called Gonal f , it is a pen type injection that at the start is done several times a day then it is down to once a day. It is a lot scarier than it looks, it doesn't really hurt and it is very easy to do however I was always hesitant doing it. It felt like self harming.

Gonal f

About 3 days later I began another daily injection, this was called Cetrotide. This stops your body from releasing your eggs so that everything is controlled. This injection is even bigger and scarier but it's truly not that bad. I did this for about 8 days.

Cetrotide

The very last injection is done in a very specific time window before egg collection. This one is called Ovitrelle, It looks very similar to the Gonal  f  pen and works just the same. Some people call it the "trigger" injection as it's role is to mature the eggs for collection. I believe the specific time is because the eggs have to be matured enough to use but not released from the follicle. I was out at the cinema with my boyfriend when I had to take mine haha I just casually jagged myself in the dark while watching Django haha.

Ovitrelle

3 days after my Ovitrelle shot I went to a very lovely hospital (Nuffield in Glasgow) the nicest hospital I had ever been to in fact for egg retrieval. I remember it was super early, I had to be there for 7:30am which meant I had to be awake at about 5am to get ready and travel. I was very nervous about the whole thing as it was a small surgical procedure in which a needle is inserted into the ovaries to collect the eggs. The anaesthetic that is given is supposed to keep you semi awake but all I remember is feeling woozy and saying to the room of about 10 people "you must see so many funny faces in here" and going straight to sleep. I was very glad I slept through the whole thing. During the retrieval my boyfriend had to do his thing and provide a sample to fertilize the eggs, this was done in vitro (injected in) so there was a better chance. Soon I was wheeled back into my room ordered breakfast which was eggs royale and then told that 7 eggs were retrieved, 5 of which were mature so only those could be used but all 5 of them fertilized! Our little embryo's were then left to form overnight and frozen for possible future use. These are our little Pingu babies. The hope is that they will not need to be used by us and if that is the case we want them to go to science for stem cell use (ooh controversial I know) 

Frozen embryos

I feel very lucky that in my country we have a health care system that allowed me to be able to do this, for free, fast and in a private hospital. I am forever grateful. I went through a process that would normally take couples years and hundred, maybe even thousands of pounds within about 2 in a bit weeks and for free. 

"Hodgkins disease? Yay, least it's not cancer... oh"

Now this is the story all about how my life got flipped, turned upside down and I'd like to take a minute just sit right there I'll tell you how I became... A cancer patient.
Where to start... In December of 2012 I was 20 years old with a pretty good life. I was living with my parents, studying HNC Biomedical science at college and also working at my first proper job in a hospice charity shop. I had my kitten Sebastian to look after and my loving boyfriend I had been with for just over 4 years. I loved life. I started getting an incredibly annoying itch all over my arms then there was a cough that seemed to never stop followed by noticing lumps on my neck near my collar bones. It wasn't uncommon for me to have a cold so I suspected that it was some sort of infection causing the cough, that the lumps were swollen glands and the rash was something else minor but I knew just to be safe to go straight to the doctor as my dad had a history of cancer.

Fine Needle Biopsy

On the day I seen the doc I was assured it was most likely something a course of antibiotics would take away but he sent me to the hospital that day to get a fine needle biopsy, it was straight forward and painless. I decided then not to tell anyone except close family members, my boyfriend and best friend. 
A few days later I had a consultation appointment, my mum came with me. Sitting in the waiting room felt like a lifetime. Finally, it was time, I knew my diagnosis soon as I had walked in the room. The atmosphere just screamed "it's bad news!" and the face on the doc was one of pity. I can't really remember much of what was said other than the doc saying "it's Hodgkin's Disease" and my mother "Hodgkins disease? Yay, least it's not cancer..." and me tutting at her and explaining it is, indeed cancer. The doc told me "it's the good kind of cancer to have", if you say so. I remember feeling like, right, ok, what next, lets get on with it. On the taxi ride home I text my boyfriend telling him my results, and trying to assure him everything would be ok. I thought I was fine but on the taxi ride home I burst into tears talking to my dad. 

Surgical Biopsy

About a week or so later I was scheduled for a surgical biopsy of a lymph node on my neck... the idea of surgery terrified me but I kept telling myself its minor. It was minor, no complications and very little pain. The only scary thing that happened was coming around from the anaesthetic and thinking I was waking during surgery but nope. The results of the surgery confirmed the type of my cancer was nodular sclerosis Hodgkin's lymphoma. The CT scan I had following that confirmed it was stage 3AS, which meant it was fairly advanced, asymptomatic as I didn't have night sweats and dramatic weight loss and S meaning there was spleen involvement. Scary stuff, "It's the good cancer" kept spinning in my head. The last test that made a big difference to what could be done for my condition was the bone marrow test and thankfully it hadn't spread to my bones. When I went to get my stitches out the surgeon came to see me and apologised for ruining my christmas, like it was his fault. This changed my attitude to things quite a bit as I wasn't gonna let this ruin anything for me. I had an AMAZING christmas, lots or joy, food, snowy days and just general cheer. I was lucky in that I got to choose not to start chemo right away, I had the holidays to enjoy with my friends and family and that's exactly what I did.