Well I decided that as I have not attended clinic since 2008 that I had better go this year and I also wanted to meet the new clinical nurse for genetics, I even made a huge effort and did my 24hr urine sample.
Unfortunately Angel went missing on the Saturday before I was due to go to the clinic so I really didnt want to go but good friends told me that I still need to take care of myself, so I headed off and when I had got halfway to Oxford I realised I had left my 24hr urine sample at home!
It took them about 10 minutes to be able to find a good enough vein in my arm to be able to inject the dye, once the MRI was over I headed to outpatients to see the Genetics Doctor and then the eye specialist. Dr Halliday did not seem too worried about things and informed me they were having a meeting about the scans on Thursday, 8th Sept and that they would write to me with the results in about 2-3 weeks time. My eyes were all ok but they want to take a photograph of my left eye which is the one I had the problems with earlier this year.
So I headed off home, all anxious, as I just wanted to go searching for Angel. Thursday came round pretty quickly and I was in London attending all day meetings, so it wasnt until I was on the train back home that I saw I had three missed calls with messages, they were from the hospital, my heart sank as they have never called me about my results before, I also had a missed call from my GP, wow I was popular!
So my VHL has decided its been a bit neglected and wants some attention, its very kindly given me some extra tumors to think about, 1 in my pancreas and 1 on each adrenal gland. I am not very sure what this means but all I know is that I have to do a further two 24 hr urine samples and am being referred to two different consultants.
In a way I am very relieved as I have not been feeling well for a while and started to feel like I was just becoming a lazy old lady, who just moaned about being stressed and down all the time, with no willpower but now I know I have these extra lumps, it could be them that are making me feel how I am.
All there is left for me to do now is play the waiting game and see what happens next.......
Shellie B xxx
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Hi Shellie
ReplyDeleteI'm sorry to read about these new tumours, I hope you are coping as well as possible. Stay positive, try to minimise stress and keep strong, as I think you are.
Good luck with further tests & treatment,
Best wishes,
Annette