So, in terms of monumentous occasions, today should have been one. Well, it was one, but also wasn’t.
After over a year, we have finished chemotherapy. Not going back to edit it, but interesting that I said ‘we’ because that’s actually how it felt. Which feels selfish, as it was Ro’i who went through it. Cliched as it sounds, there is nothing worse than seeing your child suffer.
– I can handle the journeys to Tel Aviv
– I can handle stays in hospital
– I can even handle the guilt to my other kids when they are neglected more than they would usually be.
But it’s when Ro’i says ‘why me?’ and ‘I just want to be a normal child’ that it kills you in that special reserved place in your heart.
So physically it has been Ro’i, but it is ‘us’ who has been there with him emotionally with platitudes to his questions and not sleeping at night or sleeping too much at night or sleeping too much all day and all night…
And it has sucked. And when the other kids complains that they are losing out, they are correct and there is no good answer, because the answer is that all of our priority in the last year has gone to trying to save Ro’is life. Which sucks for the other kids and also sucks for us. And also sucks for anyone who has been affected.
…and so the chemotherapy has come to an end.
And there is no celebration or party or sense of relief or sense of closure.
As the doctor hinted today, we are about to enter the hard part.
Mixed in with the cancer was the brain surgery and the Posterior Fossa Syndrome that followed it and the radiation and the chemotherapy.
And now that has to be dealt with…
Psychological and emotional effects. Physical and mental effects. Social and side effects.
And rebuilding our own lives and Ro’is siblings lives and his grandparents lives to deal with the ‘new reality’.
The first hurdle is clearing the cancer. We need to have an MRI which hopefully will give a clear indication that there has been no growth of the tumor which is not meant to be there as was removed by surgery.
Until we have that, then the ‘cancer’ part is not really over. Which is why finishing chemotherapy today was not really a final closure until we know that all of his treatment has worked and that it has not yet come back.
That will be in the next few weeks hopefully.
…and then every 3 months and then 6 months and then every year we will need to have another MRI to check that it hasn’t returned.
(Ro’i asked today if he would still need to have an MRI at 70!)
The only way to be able to continue at all is to assume that all will be fine on these MRIs. It is not worth having any doubts as doubts don’t help anything or prepare you for anything anyway.
So, although it is the natural thing to say, “congratulations on the end of chemo” or “that’s great” is NOT the right thing to us right now as to us, the chemo (or the cancer) isn’t over until the whistle blows.
And then we need to start dealing with all of the other crap which ain’t life threatening but brings about its own challenges.
So, are we happy and delighted that Ro’i doesn’t currently have to have more chemo? F-yeah. But I am still very scared and feeling exposed about the next step which although much closer to ‘real life’ still has many unknowns to it and far less protection.
To the outside, things will start to appear more normal. Ro’is hair will grow back and he will start going to ‘school’ more. PG in the future he will not need a wheelchair and he will start putting on some weight and grow stronger. My hope is also that the further that we get from the surgery, the less the mental effects will show.
The other children will have a right to expect us to jump up to the plate. Our heart will be torn in half every time Ro’i comes up against a wall and fails. I’ll have to start being more sociable again… 😉 And we will need time (lots of it) to start dealing with the effects of the trauma on us also, which has taken a second place to the ‘life-saving’ issues.
So, thank you to everybody who has been there over the last year and a bit. We have received so much kindness from so many places that wasn’t expected – and also many that was more expected. We will probably never be able to return as much as we have been given both emotionally and physically. But every last biscuit or watsapp or prayer or smile was appreciated so much and helped us more or less get through an extremely difficult chapter in our life.
Life can really suck. And has. But seeing the amount of help that we have received has really helped build up our hopes again in ‘life’ and living.
Our needs now will be different and will change daily, weekly and monthly as we try to rebuild our lives hopefully smoothly.
So, yeah chemo has finished which is incredible. And now we are trying to gain the strength for our next stage.
