Day 171: The Cancer Wall
In my last post I talked abour cancer fog. We’ve been living in a state of groundhog day. But this last week has felt like i’ve hit the cancer wall.
It is Easter holidays for Bilbo and between Rich and I we’ve taken most of the 2 weeks off. Aside from Thursday i’ve been off and we’re looking forward to the extended weekend with Harrison too.
But days off here and there are no substitute for a holiday, a proper break. And man we need one. We need some proper down time. Not a day here and then a hospital appointment there. We need a time out…some respite. And we need it soon.
My self care has always been travel. For years i’ve always had at least one if not two holidays scheduled and deposit paid. These have included short trips to see my brother in Germany, to package holidays in the sun to exotic trips to Thailand.
And the reason these breaks were so important to us is because they were the protected time. Time for the boys to have Rich and my undivided attention. A time to turn off our mobiles and focus on the boys, each other and discoverying a new place.
I know our time will come again. We will get back to that life, but for now much needed vitamin D, relaxing on the beach and dancing our hearts out at the minidisco are on hold and I’m feeling it now more than ever.
How’s Bilbo doing?
His treatment is going really well (touch wood) today he completed his 4th dose of methotrexate and that leaves us with just one more in this round of treatment. Only 20% of patients make it to the final dose so Bilbo is doing really well. He will have bloods done on the 28th to see if he can tolerate it and then we’re done for interim maintenance.
Of course written like that it seems easy. The reality is Bilbo has a week of feeling lowsy after today. He won’t want to eat much and he’s feeling/looking a lot more tired than usual.
His weight has been dropping and he feels a little less round these days.
And he is incredibly emotional. Bilbo’s emotions are like a rollercoaster. We’re trying to ride it out as best we can but it is hard. Hard on everyone including Harrison.
He’s dealing with a lot for a 5 year old. And we sometimes forget this when we see him showing such bravery and strength on a daily basis.
Wednesday was a stark reminder of just how fragile he really is.
As we went into the room for his lumbar puncture Bilbo began to shake and cry. He refused to show the doctor his wiggle and then he started screaming “what are they going to do to me, they want to kill me” of course all of this is over in minutes as soon as the anesthetic kicks in he fell to sleep in my arms.
Rich and I left the room and I was a wreck. This is on top of him really struggling with some of the regular treatments he has to have. Dressing changes are challenging. He gets really distressed when he has his chemo injection. And he worries so much.
I wish I could just wrap him up in cotton wool and take it all away.
Make A Wish
We’re so grateful to have been accepted by Make A Wish. This will be a wondeful opportunity for Bilbo to embark on a magical wish journey.
BUT the only wish he wants is to not have Leukaemia.
We’ve been working our way through the Make A Wish book to try and open up Bilbo’s imagination but it has been really hard. I think whilst we’re in this funk it is better to pause, so we’ve postponed our meeting with our make a wish contact. There is no time limit and in some ways we’d prefer to enjoy the wish when he isn’t in frontline treatment.
The Cancer Wall
I think in some ways Bilbo has probably hit the cancer wall too. He has talked a lot about not wanting to be poorly. And today he has blamed me for having leukaemia. I’m not sure why it is my fault, he offers different reasons. One is that I didn’t keep everything clean enough…
This has broken my heart. We’ve been really clear with Bilbo that his cancer is no ones fault and we don’t know why he got it.
We’ve always focused on how we’re getting through it and how strong he is, how many people are there for him, how many people love him and are willing him to get better.
He’s done so well up to this point. I know by now it probably sounds like a platitude but he really has, he’s so tough, he is smashing cancer and his consultants are amazed at his determination and strength.
But seeing him struggle day in day out, take his meds, take the prodding and poking. Dealing with the food tastes. Being tired and frustrated. Hating his wiggle. Blaming himself for us not being able to go on holiday. Telling me not to talk about swimming as it makes him sad. IS SO FUCKING HARD IT HURTS!
And then he gets up every single day with that huge smile ready to face the new day. And I know that he may have hit the cancer wall but he will get over it.
Smashing The Cancer Wall
Me on the other hand…I think I need some time. I need to process where we are on the journey and figure out what is going to help me smash through the cancer wall. I’m breaking up the milestones so they feel achievable.
I need some goals. To feel useful, I need to focus my energy back on being positive. I need to smash through the cancer wall and come out the other side.
And whilst i’m facing the wall I must remember we’re surrounded by amazing friends and family – thank you!!! And my gorgeous Godber boys.