Dear Cancer,

Dear Cancer,
I've never liked you, and neither has anybody else. I never asked for you to come into my life, yet here you are. You've frightened me, my family and my friends, and have placed an element of uncertainty in the back of my mind for the rest of my life. I can never be complacent again.
The last 6 months have been terrible, but you are more than welcome to them if it means I can have the rest of my life. You made me have to stop my studies (for now!) and gave me multiple trips to the hospital. You made me base my day around when to fit in the 40 tablets I needed to make me feel a little more human. Some of these tablets made me angry, depressed, and are believed to have contributed to my first seizure - but it's your fault not theirs. They are the good guys, you are not.
You took my hair, my figure and my confidence, but you will not take my personality - I refuse to let you take away who I am. I am still me after all of this, and I am proud. Although it is not official that you have left me (yet) I feel like you have. I know there is a chance in the future that you might visit me again, but I will be up for the punch up again if needed.
That doesn't mean you have the right to now go and bother someone else, but no doubt you will. I hope that soon a generation won't know what you are, but for now we will continue to will you away.
From Just Another Person You Chose To Affect

FINISHING RADIOTHERAPY... but what's next?

I finished my 11th and final session of radiotherapy on the 29th September, and it felt amazing. Compared to chemo it was a walk in the park, despite the fact I encountered a few side effects; a sore patch on my back similar to sunburn, a sore chest, pain when breathing deeply and indigestion/heartburn. I was treated mainly at the Nottingham Radiotherapy Centre at City Hospital, although for 1 week I was moved to the main hospital building while machines were updated.

For the treatment I was clipped into the bed, which was plastic and very narrow, using this mask.

The mask was made using thermoplastic, which becomes bendy and malleable after being put in warm water. This was then placed over my face and shoulders, before being cooled with ice packs for 10 minutes, and I can definitely say it was cold alright!
As the mask clips into the bed, it means that you can't move at all, which is its sole purpose.

The grey clips ensure the mask, and therefore you, are placed in the same position on the bed each time. The white sticker with the cross was the reference point for where the laser needed to cross to ensure precision placement of the machine, and therefore the x-ray. The machine was able to spin 360 degrees around me, meaning that the areas could be treated from the front and back.
Because of where some of the tumours were, above my collarbone, I had a headrest placed behind my head that had a wedge underneath my neck to tilt my head backwards. It wasn't the most comfortable of positions, but for 10 minutes each day I could put up with it. I also had to wear a navy blue gown as it had velcro on the shoulders so they could be rolled down to fit the mask, and I'm wearing it in the pictures below. (You don't have to tell me by the way, I know it is the height of fashion?!)

Now it is a case of waiting until my next PET scan, which I have been told will be in around 2 months. This is because the treatment continues to work for some time, which is why the side effects don't subside immediately. After this point, assuming I'm clear (fingers crossed) I will then have to have another short operation to have my port-a-cath removed. Then that's it! Well pretty much - I will have to return to QMC/City on a regular basis for the next 5 years but for tests to check that I'm still in remission, but this seems like a small price to pay for the rest of my life :)

How to: Become a Pharmacist

Easy! Just develop a serious condition that requires a range of medications to offset the side effects of the treatment you receive. In my case my Mum was the main 'pharmacist', and at the peak she was giving me 40 tablets a day.
These have included: Lactulose (although this didn't really do anything), Movicol, Prednisolone, Domperidone, Granisetron, Norethisterone, Paracetamol, Gabapentin, Sevredol, Fentanyl patches and slow release Morphine. I've had a range of different chemo drugs too, that we had to learn the name of so that we knew how long we were going to be at QMC as they took different amounts of time on different days: Vincristine (bleugh!), Etoposide, Doxorubicin, Cyclophosamide and Dacarbazine.
We were given a lot of different leaflets, but none prepared us for the amount of baffling names of drugs. Also, dealing with that many tablets under stress that a mistake could cause problems and under the initial shock of the diagnosis makes the job much harder. Help with that, such as organisation or writing out a plan etc., I think could reduce this stress.
Now I'm coming off painkillers also means that the amount of certain tablets changes between morning, lunchtime and evening. Again, this must be done carefully and slowly to ensure no withdrawal symptoms, and this is a balancing act in itself - however there has been much more help with this.
Despite the stressful situation, she did a great job. Thanks Mum :)

"You're so brave!"

A line which so many have said to me over the last 7 months. I'm brave for getting on with treatment. Am I?
I understand that people say that to support you, let you know they are thinking of you and to make you feel better about the way you are dealing with the situation - but I don't feel brave. Firefighters, police, the armed forces and paramedics - they are brave, walking into situations they may not know anything about to help or protect people that they don't know, so in comparison I'm just not.
At the end of the day, and this is the brutal truth, I faced 2 choices when I was diagnosed: have treatment or die. So I basically had one choice which meant sacrificing 6 - 9 months of my life in order to have the rest of it. That seemed like a pretty fair deal.
I appreciate all of the support I've received from family and friends, and with 2 radiotherapy sessions left, that's probably why I feel like this, as hindsight (as usual) is a wonderful thing, and for me is like wearing rose tinted glasses as I know chemo was bad, but don't remember it being that bad now.

Using a wheelchair

I am very lucky that I have only ever used a wheelchair once before in my life when my leg was in a cast, but the side effects of chemo meant that for a few weeks I needed to use a wheelchair when out and about as I couldn't walk far. I have had some interesting experiences whilst using it.
My Mum pushed me the majority of the time, saving my arms, but we have hit things in shops that maybe don't consider the width of a wheelchair quite enough. Lifts are usually available in shopping centres etc. but they don't think about making them large enough to turn the wheelchair around whilst in there so it can be pushed out forward rather than being struggled out backwards and perhaps into the path of other people.
Dropped kerbs sometimes weren't quite dropped enough either, meaning we had to reverse over some so that the larger wheels could negotiate it. Once we parked in a car park that when we tried to cross the road from it, we realised the kerb wasn't dropped opposite it, and rather that it was dropped 150m further down the road. This meant I had to be pushed down the middle of the road, with my Mum running as fast as she could behind me: not exactly ideal.
As much as I'm sure disabled access has improved over the years, from my short experience I've spotted several things that just haven't been thought through properly.

"You're just adding to the grey!"

The what feels like a saga regarding my scan results continues. I had a PET scan several weeks ago which determines whether I have responded well enough to the treatment to have no more or whether I need more; which could be radiotherapy or high dose chemotherapy or, if it got to this stage, transplants. My scan came back and my consultant said that because he was following the German protocol for my treatment that he would send it to them for a second opinion as it could not be decided whether the nodes in my chest were normal or still cancerous. I went back to the hospital on Thursday and was told that the specialists weren't 100% happy with what the German team had recommended for me, which was radiotherapy, and that my scan had now been sent to UCLH in London for a third opinion. It was explained to me that my results were pushing the limits of what the scan can detect and was much like very high pitched music - some people can hear it and some people can't, meaning some specialists were saying it was still cancerous and some were saying it was normal.
Later that afternoon I visited who could be my radiotherapist who explained to me the risks of having radiotherapy and side effects. He explained how much I'm in the grey area and that if I was an adult in the same situation that I would automatically be having radiotherapy and that Hodgkin lymphoma in a 17 year old is not really any different to a 23 year old. I pointed out that I'm 18 in 7 months, and he simply replied, "You're just adding to the grey!"
I would rather have the radiotherapy than not. That might seem odd, but in my head not only does the risk that the cancer hasn't gone outweighs the risks of having the treatment, but I would much rather be over treated than under treated. It would put my mind at rest, that I had finished the job, to have it. I'm getting more sure each day that the radiotherapy will be happening the more I think about it.
It gives me a lot of comfort to know that my case is being considered to such a depth. People criticise the NHS, and I'm not saying that it doesn't make mistakes, but I am immensely impressed with what is a free service. I have been treated incredibly well.
But nothing is ever straight forward with me! Hopefully I will get the final decision soon.

A Day in the Life of a Chemo Patient

After having this blog for a while now, I realised that I've never shown or explained how and when I receive my treatment - I'm used to it so that it's normal, and I only seem to remember it's not if my friends ask me questions. So, last week I thought that I would take some pictures and show how the process works. The pictures aren't gorey in anyway (I can't cope with it myself still!) but I apologise if any of them offend you.

This is the needle that's used to administer the chemotherapy. Before I started treatment I had an operation to have a single lumen port-a-cath installed around my ribcage. A tube then joins a vein in my neck to give the treatment. This means that I don't have to have drips inserted into my hands for each treatment, which at one point would have meant having that done 5 times a week. The red line is the small scar from the original operation, and I have cooling spray put on my skin so I don't feel any pain or discomfort from the needle, which can be left in for up to a week. The needle keeps itself in place naturally when correctly inserted, but tagaderm stickers are placed over the top to keep it sterile.

A Carefusion drip is used to infuse the treatment. Pressure is used to push the liquid from the bag into my bloodstream and is completely painless. Some drugs are administered by syringe straight into the tube attached to my needle, one of these that I have is called Vincristine. The chemotherapy that is administered using this machine is protected from sunlight with a brown bag as it reacts with the light. This picture shows a flush of saline which has to be used between each drug to make sure I receive the full dose.

The machine is set by the nurses to run each drug at a different rate to get optimal results from each. This means that two nurses must check the drug, my name, date of birth and rate of infusion before starting treatment. The machines can be pretty annoying though, I had one machine that stopped because I coughed, and another that used to stop because I sneezed! I get there has to be safety features but I think that's a bit much.
I am unsure what the next step is for my treatment, and I will not know until next week so I am just focussing on finishing these steroids which make me hungry, angry and a bit like a dragon.