Part 1 – It’s harder now than it was in the beginning

Really struggling with doing a blog post with everything that has been going on for tumour trooper so I will do it in a few parts. Photos below are all of happy times for Angel, the beginning of her journey.

As most of you will be aware if you have Angel or Bev on Facebook,things have slowly caught up with Angel over the past months and she has lost her sparkle feeling low and hates having a brain tumour, in her own words it’s harder now than it was in the beginning.

School for Angel has been a struggle since befor Easter, up until May 29th she has had at least one day off a week, which is due to either fatigue or aching and being stiff and falling asleep a lot during the day, blame the hypothalamic syndrome, not only this she has had moments of forgetfulness, forgetting the alphabet, doing basics spellings and writing sentences , words only part there and when asking her to read what she has wrote she will say what she sees is there but it is not, as she is stressed about forgetting things and not being able to remember things she has even had a rage were she has pulled some hair out.

Best decision for Angel was to reduce her timetable so she just does the options she has chose and the core subjects and drop all the other subjects,but she is in school everyday.

Bev tried to get hold of Dr Didi(endocrinologist) to see if he could see her early to check all her hormone levels, but could not get anywhere, she also updated Natalie her clinical psychologist what had been going on and an appointment was arranged for 31st May at Alder Hey.

The clinic appointment went well, Natalie is sorting out support for Angel in Blackpool as seeing her infrequently is not enough, she needs something more often in Blackpool even if that is in school, Natalie had got hold of Dr Didi herself and informed us he would see us at oncology clinic at 2pm, Bev thinking he had a clinic then.

On arrival at oncology clinic, it was not endocrine clinic it was immunology but they knew Angel was coming, normal weight height was taken and not long after that Dr Didi arrived, he had only come especially to see Angel he did not have a clinic that day , (Bev is so glad she asked to change consultant to him, it makes a massive difference he actually listens to what is going on with Angel and puts himself out for her). Bev did all the talking he just listen, all Angels hormones levels that were last done were normal so Angel was to have her blood done again, to check her thyroid levels,even if the levels are still showing normal he was still looking at upping the levothyroxine to give her a boost to see if the issue of tiredness was to do with that , he did stress to Angel the effects of hypothalamic syndrome and was she happy, which Mum did think at the time she was,so off they went to have bloods taken for Mum to ring back in a couple of days to get results.

Part 2 to follow

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