So far today has been total frustration!
I had an awful night, my itching kept waking me up every hour or so.. For those with babies who wake up to breastfeed at night “i totally get you, but you won’t get me”, waking up because of intense itching is different. A constant reminder that somethkng in your body is not right.
So after pretty much minimal sleep i had to be up before 8am because i had an appointment with my fertility doctor at University College London Hospital (UCLH) at 9:45am.
As i’m not allowed to take public transport and there is literally no place to park outside UCLH i had to uber it. I mean whoever designed that hospital did they not think about patients who are ill or have mobility problems? I’m not refering to myself but those elderly or pregnant patients.. Not everyone can catch a taxi.. Sorry for ranting, but iv currently appointed myself spokeswoman for patients!
First i had a ultrasound scan to look at my womb – they need to know all was okay to begin with before treatment, so if i have problems in the future they can compare! So scan was all good as expected.. Wuhoo im still a woman..
Next i was seen in clinic by my gynaecologist – fertility doctor. I was in the department till 2pm.. Total exhaustion.. Whilst waiting to be seen i was sat close to other young patients who had been diagnosed with lymphoma who were at different stages in their treatment. It was refreshing to hear one girl who talked about how her hair grew back.. That definetly gave me a confidence boost.. I can’t wait to talk about my hair growing back!
Anything excitingly new from todays appointment? Not really.. There is still no concrete plan for my fertility because we are waiting for my PET scan result.. In the mean time i have been given injections to inject myself.. They work by putting my ovaries to sleep so they are less active and hence less likely to be affected by treatment.
My medications (i will be self injecting into my tummy 3 injections every day):
I feel everything is moving so slowly.. It’s just not fair.. I waited several hours today only to leave with no clear outcome..
I am fed up of waiting.. The bank holiday weekend is coming up and i will next be seen on Tuesday for another scan of my womb to see how the injections have worked..
Whats more frustrating is that my appointment with my haematologist has been rescheduled for the 8th of June! I really dont know when i will get my PET scan result.. Time is ticking.. At times i feel so vunerable.. I really have no control over my own health.. Im speaking as a patient who spends her day sat between 4 brick walls waiting for things to move forward.. As a doctor i’d probably tell myself “this is the NHS things dont happen just like that, there are other patients in a similar situation, sit back and trust the team looking after you”.
On a positive note on the way home i managed to get a nap in my uber taxi.. It feels so good when i can sleep and forget about everything..
My younger sister has now finished her exams and its time i told her about my health.. How am i going to break the news.. I just dont know.. I’ve upset enough people as it is.. I just worry she finds out from someone else.. My mind is constantly racing.. I’m really trying to juggle everything as best as possible.. It’s not easy..
I’ll let you know how it goes..