I’m fed up of seeing people out and about soaking up the sun with no care in the world, when we have to continue to shield until the end of June.
Iris’ friends will be starting go back to school, while she has to stay off. Try explaining that to a 5 year old who misses her friends.
In an already hard time, Covid-19 has made it harder. A lot harder.
We clean lots. And I mean lots. Disinfectant, bleach, sprays. All to keep germs at bay. Normal day to day germs that wouldn’t affect you and I, but to someone with no immune system, could be bad. Desperately trying to make sure he doesn’t get a fever and end up back at our local children’s ward, because we know he is safer at home. Using your gut instinct, so commonly talked about amongst my ‘cancer mum’ friends about how to keep them safe. On edge with every single ring little cough, raised temperature or new symptom, each time thinking “Could it be Covid” even though he is screened regularly for it.
Ellis is not himself this week, he’s struggling. He feels sick, his mouth is full of blisters, his saliva is thick and gloopy, his bones hurt from the GSF injections, his little hair that started to grow back gave him false hope and has fallen out again. His eyes are sore, his chest hurts and stomach hurts and he feels sick. These are the “normal” symptoms he has had since the chemo started, the things he has accepted are now just part of his life.
On his rare time off chemo, we would love to take him out for the day to get some fresh air and exercise.
To visit family to help him feel part of everyone like he’s not doing it alone. To give him something to look forward to when he’s in the ward, crying his eyes out because he feels alone.
To treat him to something simple like an ice cream down the beach, something we used to do regularly. Something to bring comfort in his ever changing fast paced life.
To meet his friends and feel like a kid, rather than a patient.
All I see over Facebook is healthy people moaning about being “stuck in”.
You’re not “stuck” anywhere, you are safe. Your children are safe. Your loved ones are safe.
Being “stuck” is being on a hospital ward for 72 hours each week, not even able to go to the toilet on your own because you are attached to 4 drip machines. It’s having to have drugs pumped into your body, which poison you and make you feel rubbish but at the same time save your life. It’s longing, aching to go home, to the place everyone else feels like they’re stuck.
I wish our problems were just feeling stuck indoors, in our safe home, with our health.
Im trying to be ok and get on with things, but some days are tough. Some days I write off before the day has properly begun because I juts know that I have no fight. But that’s ok. I know we all need to allow ourselves to feel how we need to feel, as long as there is an end point.
A lovely friend, a lady of a boy with osteosarcoma too, told me about something she does. When she is struggling she will think of one thing she is grateful for, one positive thing. She said it works and helps her, so I am trying it too.
One thing I am grateful for despite all this is quality time with my family. I love them all so much and love our little family unit.
But I don’t like my husband when he challenges me to 30 days of yoga.
Especially when I realise why the instructor has over 5 million views. Yoga pants don’t leave much to the imagination.
We’re on day 4 and I’m considering filing for a divorce.
I’m not even joking.