I was diagnosed with ALL from a blood test with no symptoms other than being slightly anemic. I was called by my GP and told to go to the emergency department and expect to stay over night. Before I knew it they were doing a bone marrow biopsy the next day and admitted to the hematology ward with an ALL diagnosis. I was told not only could I not go home but my mum couldn't visit due to covid (I've just turned 26 and still live with my mum we are extremely close). I spent 30 days in hospital the first couple of days in a isolated room then on a bay and hospital life just drove me crazy and literally gave me anxiety. I couldn't sleep at all and in the end they had to give me sleeping tablets. I couldn't cry the entire time I was in the hospital and therefore couldn't really process.
I'm now home visiting the day case as an outpatient daily all of last week and three times this week and my bloods are improving and I have an appointment with my consultant next week after my bone marrow biopsy end of this week. I have been put onto the UKALL14 regime and know that my team is wanting me to be an inpatient again for the next chemo cycle which is 28 days. I have just been so much better at home, mentally, emotionally and physically and the thought of going back in makes me want to cry and give up.
I feel like I'm being selfish also as my consultant thinks they caught it very early and is hoping I will be in remission after the cycle I've just completed. I have peripheral neurothopy, loss of taste and a clot from my picc line but haven't really had any other side effects from chemo other than fatigue and bowel issues which aren't too bad and a little bone pain which I'm hoping is from the GCSF I have to inject myself with, so I've been really lucky again so I feel like I'm just whining but I can't explain how upset the thought of being an inpatient again makes me. My team at the hospital are all very caring and have been brilliant, the nurses on the day case really make me feel involved in my care.
So I guess what I'm asking is for other peoples experiences both as an inpatient and if anyone has been an outpatient including if on UKALL14. Thank you so much for any help I don't want to worry my mum with my worries.
