Anthony Abel
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Blog update

Anthony Abel
Posted by
30 May 2015

My progress so far

I have really been wrung out lately emotionally regarding my illness.

I was not given enough information by the hospital at the the time of my diagnosis.

I got the impression that it was Azacitidine that may or my not work and that was it, I must admit I was so shocked

at the time I never thought to ask anything else.

I spoke to Patient Liason at MDS Patient Support who explained far more about how Azacitidine works in the body and what course of action I should explore if it didn't have the desired effect and if it should stop working, ie ask to be referred to Kings Centre of Excellence. They also sent me a pdf file of strategies to explore to cope with the emotional upheaval I am experiencing.

I start cycle number 6 on Monday June 1st which will show if Azacitidine is working as it should, and I will be seeing the haematologist on June 9th for results, crunch time. This time I will go armed with the many questions I want clarified.

Comments

01.06.2015

Hi Anthony,

Really sorry to hear that you've been finding things difficult emotionally recently. The emotional toll that having blood cancer can have on patients is huge and often underestimated.

I completely understand your frustrations as I've been there myself where I've been crippled by doubt and don't really feel that I was fully prepared or briefed in at my diagnosis. You've done the right thing getting in touch with MDS Patient support who are fantastic and have given you some really great pointers.

Ask questions and if you're not satisified with the answers you can always ask for a second opinion. It's important that you understand all of your options and get as full a picture as possible of prognosis, the treatment you're on and what to be looking out for.

It's all such a shock when you're diagnosed that you don't really take things in and questions don't immediately spring to mind. I kept a notebook to write down questions as and when they popped in to my mind and I'd also recommend that you also get in touch with your support nurse and establish a channel of communication with them as they can also ask questions on your behalf.

Good luck with the latest cycle - I've got everything crossed that the results show that teh Azacitidiine is doing it's job. Stay in touch and remember that our patient services team are also here to help in any way that we can. Our email is PatientServices@beatingbloodcancers.org.uk

Anonymous
01.06.2015

Dear Andy thank you for your supportive reply,
I am adjusting to the upheaval all this has caused me, it will take time I know.
I am already doing the things you suggested, ie keeping a note of all of questions and in regular contact with the liaison nurse.
I have also arranged to see the Oncology Councellor this month, which I am sure will help hugely.
I realise the importance of positive thought, because in this situation it's what one should always aim for, I am succeeding too and the dark thoughts are being kept at bay most of the time.
I'll post an update when I have seen the haematologist at the end of this cycle
Kind regards
Anthony