Coronavirus & cancer: How are YOU?
I cannot count the number of times that I have been asked that over the last few months. It’s not that I don’t like to be asked it is just a very difficult question to answer. Before the diagnosis if anyone had asked me how I would feel if my child was diagnosed with cancer the answer would have been devastated, traumatised, distraught. And I have been all of those things but it is so much more complicated than that.
What has amazed me is how quickly the situation has become ‘normal’. The initial shock fades and then somehow life resumes just with a ton of added complications. We don’t have a choice but to move forward and to work our way through this. Ella says that she has always found it odd that people refer to her as brave. As she says there is not an option not to take this on. She can’t say ‘no thanks I don’t fancy doing the cancer thing actually’ — She can’t back out of it like a parachute jump or career change.
Of course its not normal and I know that no-one in the family is likely to escape from this unscathed. There is always the underlying anxiety, the lack of patience and the anger. It’s all kept locked in while we work our way through the next few weeks and months and it will come out one way or another. There may need to be therapy of some kind further down the track — there will certainly be things that need to be dealt with — but right now is not the time.
Right now we have to focus everything on getting through each day, each test, each medication. Although the cycles are broadly the same there seems to something new each time. This time we have had to learn how to give a GCSF injection to boost her immune system. This involves two different medications that have to be mixed together, two needles and steady hand. It’s also very painful so someone has to volunteer to have their knuckles crushed by Ella when its time to administer it!
Tomorrow we head to the Isle of Wight for a few days. I am very grateful to the clinicians for moving things around so we could find three days for the trip. Even something like this becomes very complicated. We have to make sure we are no more than an hour from the nearest hospital in case her temperature spikes and they have to have all her info sent in advance. We have had to move it twice because of scans and tests being booked in.
The little things make all the difference. The team at RUH have given us some stoma bags which will enable Ella to swim and paddle board. This (plus a great weather forecast!) have already made such a simple trip one of the most longed for that I can remember. Again hugely grateful to our friends down there for hosting us.
I love this picture. This is Ella heading out on her first date. Amongst all the craziness she has met a boy and right now he is actually the person that I am most grateful for. She loves spending time with him because he makes her feel normal. Tomorrow morning she is getting up at 4.30am to meet him and go and watch the sunrise….
Oh and her AFP is down to 1.2 which as the consultant says is quite frankly just showing off ☺️