What a few weeks we have had, Emelia has been put through the mill, my journey was a rocky road this is like a very fast twisty rollercoaster mainly going upside down.
3 weeks ago she woke with a swollen hand and arm, we rang the hospital just to check this was nothing serious, they said A&E to check for a blood clot. Wasn’t expecting that. So another long day sat in A&E, she was very self conscious, was hot in her hat, but didn’t want to sit there bald, also her bad eye doesn’t look in the same direction as her seeing eye, so felt people were thinking she was looking at them. Unlucky due to her being Autistic i was allowed to be with her, we were there at least 5 hours. After tests that were inconclusive she was allowed home with antibiotics and blood thinning injections, as a precaution, with an appointment for Monday for an ultrasound. Mondays ultrasound showed a clot in the vein her PICC line is in (the PICC line is inserted into her vein in her arm, they use this to give her, her chemotherapy and to take blood from) the doctors in A&E said the PICC line was also not working. Nottingham insisted they did not want the PICC line removing, so now we start worrying that she can not have her chemotherapy the next day. She was told she needs her injections daily and after chemotherapy finished tablets for the rest of her life. The blood clot could be the result of the PICC line or the cancer, we did double check not because she had covid vaccination on Saturday- reassured not.
She had her 2nd cycle of Chemotherapy the next day, there wasn’t an issue with PICC line, the A&E doctor wasn’t doing it right with flushes etc – who knows 🙄. She tolerated this round better, she was not sick and didn’t hallucinate but was totally wiped out, and slept lots. Think she will be hearing the bleeps from machine in her sleep (attached to machine for over 48hrs) she was allowed home on the Friday, her consultant has reduced her pain relief and steroids- all good signs.
First top up went well, home same day just very tired after this one but she didn’t seem to pick up. We should have took this as a sign …..
The next Tuesday top up day was a hard day. I had my mammogram the week she was an inpatient and they called me back as they had seen a 14mm image that they wanted to look at more closely, my appointment clashed with her chemotherapy top up, so not only was she having chemo she was worrying about me. Lucky after an ultrasound and a different mammogram the doctor couldn’t see anything so gave me the all clear- yay. I returned to her, her consultant, sarcoma nurse and Mark were with her, she is anaemic and needs a blood transfusion as well as chemotherapy. So a quick visit turned into an 8 hour visit, they let both myself and Mark stay with her, we watched Harry Potter in the retreat room and played pool, this helped the time pass. Another young person was having chemotherapy in the retreat room as well, only her 2nd visit, she was being very sick, and looked scared- its just heartbreaking to see.
We were told if Emelia’s temperature stays ok she will be home after her blood transfusion. Lucky it was fine, so home we went. The next morning her temperature was high, so rang the hospital, bring her into to assessment ward, we will have a look at her. So at 8.30am we are taking her back again. We let her sarcoma nurse know and she rang ahead and explained I would need to stay with her. After tests (and a giggle pushing her to x-ray) it was decided she needed to stay in, so moved to another ward whilst waiting a bed on the teenage cancer ward. IV antibiotics and fluids given, they kept an eye on her over night, after being told she could be here 4 nights and then maybe 2 days, we were given the good news she can come home after 1 night, with antibiotics.
She isn’t great, very tired, fed up or should I say pissed off with it all, made harder possibly because, Tom has had to move out, so he can attend college and see mates as restrictions are lifted, he struggled with shielding, so moving out is safer for her. But must be hard for her to see him moving out having a life, starting something new and exciting. For me, its upsetting he went so quick, no build up to get used to it, I know its the right thing, they all need to fly the nest but …….
I just wish the rollercoaster would slowdown – I know it will not stop anytime soon, but a slowdown would be good, then we could raise our hands and enjoy our time together ❤