Monday, 31 August 2015

"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.

Saturday, 22 August 2015

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.