It's been 83 days since my diagnosis. It has passed in a sleeping sick blur.
I wake at 5 with Richard and he reboots my meds and heat packs and I sleep again. Rising usually about 10 for a few mouthfuls of breakfast more meds and then time on the couch - watching trashy TV if my eyes can take it. An attempt at lunch at 12.30.Then back to bed for the afternoon till the girls come home around 4. By 7.30 I'm back to bed - dvds and shows on my ipad :) 10 pm more meds and back to sleep.
Repeat repeat repeat repeat times 83 days - 83 ???
Interspersed with trips to southport to HOCA- bloods oncologist hematologist - some night visits to A and E when it all gets too hard - always the same response still not right are you Tamar ? no no I'm not. Yet every night I say the same thing - tomorrow I will be better.
And today I can confidently say the cloud is lifting.
I am awake. I can focus. I can walk without swaying. I can eat. Food tastes.
I thought I had turned the corner last Saturday when I headed out to the shops. I had 3 hours of shopping - it was so so good. I came home exhausted but still feeling good.
By the evening the cloud was back and Sunday was our family party for the girls birthday. Too many people - I have been a hermit paranoid about germs and immune systems and sure enough I caught something.
The next two days passed in a blur of temperatures dizziness and nausea.
Determined not to go to A and E I text back and forth with my Aunt who's an oncology nurse and got the reluctant all clear to go to dinner - We headed out for dinner for the girls birthday on Monday night which left me in bed all day Tuesday.
Antibiotics have now kicked in and are my new friend.
So now I have finished the FEC regime of chemo after 4 rounds. It was combination of my oncologist having mercy and me begging for mercy. It was such a hard decision for me to ask to stop and he was always going to be guided by me.
I felt like such a failure not to be able to withstand another two rounds. Knowing I can never have it again- worrying what the effect of having two less rounds would be on my overall care. I'm still worrying but what is done is done - and realistically I would be heading back in tomorrow for round 5. I'm so grateful not to be.
I said I'm trying so hard to get through and have more but I just don't think I can. He said it not matter of trying. He explained it like drinking - One person can drink one glass of wine and not be fit to drive while another can drink a whole bottle. My metabolism just will not process chemo.
They believe that although the tumour has not shrunk it hasn't grown and the core of it has changed - He explained it as liquifying - breaking down and he also said that traditionally those who suffer through chemo have excellent results - so we will see.
Surgery is booked for the 14th of December and the pathology from that will determine further surgery and the next round of chemo. I should be back into chemo by the 10th of January - 6 rounds weekly from the "tax" family of chemos - they haven't decided which one yet.
So now I just have meetings with my surgeon and my hematologist - more blood testing (who accidentally over thinned my blood by 40% - grrrr) so trying to get the levels right. My blood clot is still there I need two more scans to see how it's breaking up.
and so we keep going. 83 days on.
Today I'm packing my girls up and sending them off to my sisters for a week. They are so excited to go swimming each day and night (Lisa runs the council pool in Richmond and it doesn't close until 7pm)- and to go horse riding! Poor Lisa - she has a 5 hour drive with two girls who "need" to take something to do in the car for a 20 minute drive to Robina. The furthest they have driven is the Sunshine Coast. They will also fly unaccompanied for the first time - I'm holding my breath about that one. It's the longest they have been away from us ever.
I'm looking forward to the quiet -the chance to get ready for Christmas and to go to a movie.
Happy days I hope to be sharing photos and craft soon :)