Update and Apology

Morning everybody,

Before I start I really want to apologise for being absent for so long, I'm very disappointed in myself for not making more time for blogging but family and personal life problems have been difficult to cope with. Simon is struggling with a few things and I'm trying to support him whilst working on our relationship, dealing with the huge amount of essays and a presentation at uni, as per also trying to manage my health. So, in effect, I'm not trying to give excuses just explain why I've been gone for so long, and I'm genuinely very sorry. 

Anyway, on to the crux of the matter, I would like to give everybody an update on, well everything basically because so much has gone on since my last post! In terms of university things are going pretty good actually out of the 3 assessments we have completed this year I (and my group for one of the assessments) managed to get firsts in two of them which is absolutely amazing and well done to everyone else who submitted them all! I'm helping out friends with uni work and trying to work together, a study busy kinda set up and that's pretty fun too to be honest, I've always thought that teaching others is one of the best ways to consolidate your own learning so as I'm helping others I'm learning myself. 

We have just managed to finish our first semester of year 2, despite having 5500 words to write for essays over Christmas I am definitely looking forward to the break because we don't go back to uni until late January 2018! Actually, speaking of essays once I've finished this post I'll be starting another essay which I'm hoping to finish on Wednesday night or Thursday, probably Thursday because I'll get some absolute quiet with Simon and everybody else being out of the house and I tend to focus better when I'm alone; total loner me ha!

Oh Christmas as well!!!!! I'm crazy for Christmas it's the most wonderful time of the year (ha see what I did there) and I've had everybody's presents bought and wrapped since October so definitely ready to go now, as you can see from the picture as well we have got our christmas tree up and decorated and spent a lovely night a few weeks ago watching Home Alone. Oh also it was my birthday on the 14th of December and I turned 22! one of my oldest and most lovely friends managed to get Taylor Swift's 22 song stuck in my head ha, thanks Leanne, I can't wait to meet up with her tomorrow we never get enough time to see one another being so busy. I was totally spoiled for my birthday and Simon had booked us a weekend away in a log cabin with a hot tub... pretty amazing and I'd never been in a hot tub, by the end of the weekend I didn't want to leave the hot tub either, a nice glass of wine in your hand and bubbles was absolutely perfect! The picture to the right is the view we woke up to on Sunday and it was absolutely beautiful. Honestly, though, essays or not I am so excited for Christmas this year, I'm hoping to get up a post soon as possible, probably Thursday evening all about Christmas traditions in the Savage/Simpson home. 

 

Things with my health are kind of progressing weirdly, random things are going on in my body and it feels like an uphill battle to get some support. If you can remember I told you guys that doctors were wanting to put me on Liraglutide or Saxenda/Victoza as it might also be known, I did a whole post on it and what my concerns about it are, obviously there is a black box warning on the drug as it can cause different kinds of cancer or pancreatitis, this was a massive worry despite people telling me otherwise because there is a clear history of cancer in my family anyway, my mam, grandma, and great grandma have all had a kind of cancer, my cancer levels are raises slightly anyway so in my opinion, to put me on a drug for weight loss that I might not react to and the average weight loss for a normal person is alb every 3 weeks, this would be too risky a decision for me. So, yesterday when I attended my RVI appointment I basically putty foot down and refused that option for treatment, as impossible as it might be I would rather use my last breath to try and improve my health in terms of lifestyle changes rather than do it via a dangerous, in my opinion, drug. 

At the RVI yesterday the doctor has told me that I need an emergency gynaecology appointment because I've had issues with bleeding between periods and one major issue involving a lot of pain and bleeding, the doctor seems quite worried about that. I'm not too worried about it to be honest mainly because I have always had issues with my periods, and especially with endometriosis and PCOS, sometimes weird things can happen but at least it's best to get things sorted, I remember having a phone call with my GP surgery about the bleeding between periods and I had explained all my issues and the doctor on the other end of the phone told me and I do quote "oh it will be nothing" which is an alarming response from a GP but I have to admit my surgery is absolutely appalling. It's in this instance that I'm more thankful for my consultants and specialists at the RVI, they do such amazing work and I'm happy to be one of their patients to be honest. 

Oh I am also being referred to a sleep apnoea clinic... Apparently I snore haha! That'll be interesting to say the least :)

To be honest that's all I have been up to recently it's been pretty hectic trying to get ready for Christmas and going away and essays, presentations, health issues, family arguments and a whole lot of other stuff!!! Still I'm overjoyed to be back and absolutely can't wait to get bak to blogging regularly!

Thanks to all you guys who stayed with me and keep checking the blog regularly, I'm hoping to have exciting news soon as well as I may be arranging a call with someone from Rhythm, the company developing the drug Setmelanotide! So keep your eyes and ears open for that post coming soon hopefully :)

Have a wonderful day everybody!

Thanks for reading xxx

Life Update and Worries - The POMC Series

Morning all!

Well, it's been an eventful few days and a very busy week! This post is going to be a quick update and a talk about a few worries I have at the moment. Me and Simon got back from York on Friday night and went to see out best friends Annie and Aidan before we went home,it was lovely to see them after a few days and catching up is always fab, Aidan and Simon are like a couple of kids laughing away at youtube videos they've been wanting to show each other over the last week; honestly, I love seeing Simon and my friends get on, makes me extra happy. 
Anyway, last time I posted an update I said I would be taking part in an interview with Sophie Dishman of University of Sunderland which I did Monday passed and honestly she was absolutely fantastic, such a professional and so kind, I'll be posting a link to the interview and talking a little more about that when I post later next week so please keep an eye out. After that myself and Simon, Annie and Aidan all went to Sunderland and Darlington to grab lunch and just relax together for a while, nothing special just a chilled out relaxed day. 

Flowers Simon bought me <3

On Wednesday me and Simon got to head down to York after a doctors appointment and it was SO hectic trying to get everything together it was really mad! We ended up forgetting our inhalers, both myself and Simon are Asthmatic so it was a bad move there but I just prayed that nothing would happen, however that's not our luck really... Anywho, we stayed in a B&B called The Willows near York and just passed Harrogate and oh my it was so lovely! The proprietor was so kind and welcoming and totally understanding about my dietary needs, he was accommodating and an all-round great man, the room we stayed in was lovely, very private and comfortable with beautiful views to his fishing pond. 

On the first night we decided we would get tea somewhere and decided on a Chinese restaurant called Sweet Basil, the staff were lovely but (and here comes the usual unexpected medical problem) Simon ordered chicken chow mien which didn't include any information on what it contained just how much the dish would be so Simon thought he would be fine, he is severely allergic to nuts and somehow there must have been traces of nuts in the food as he swelled up like a balloon and couldn't breathe so we had to get him to York hospital really quickly, he was given a strong inhaler and steroids and was thankfully alright after a few hours. Still I was out of my mind panicking... no epipen no inhaler, no idea how to get to the hospital and my husband-to-be haven an allergic reaction in the passenger seat! God that was scary. 

Lunch and cocktails!

After the ordeal of the night before we decided would go into York and headed straight for The Shambles and The Shop That Must Not Be Named, a Harry Potter themed shop full of awesome stuff, I managed to get friends and family some gifts like notebooks, fudge, decorative lights, drink flasks and stuff so everyone was catered for thankfully. We headed into other shops and had a general look around which was lovely to be in an area other than Durham or Newcastle; we started to get hungry after a few hours of shopping, albeit it took me around 3 hours to walk round the shambles as I needed frequent breaks. Simon found a restaurant called divine which looked as though it had food that both of us could eat which i was grateful for considering I'm not sure Chinese was the best idea for the night before. We got pasta and risotto which was very nice and filling and Simon bought us a few cocktails to be going on with. It's important to note that earlier in the week I had been discussing the possibility of getting on to a Setmelanotide trial for a drug that aims to treat those with genetic obesity diseases, up until this point I had not been eligible and was waiting for more information via phone call that day from my main Doctor in Cambridge. So, obviously I was quite stressed and the few cocktails I had definitely helped, and they were yummy. 

Stunning Cathederal

Anyway I was meant to get the call from Dr Farooqi at 12:30 but she had been called into a meeting and I didn't receive it until 4pm, the same time we were due to be going to an escape room. I found out from my doctor that drug companies are refusing the trial for those with one genetic fault as it is deemed more helpful for those with 2 genetic defaults, however she did discuss with me the possibility of another "treatment" called Liraglutide, a regular injection into the fatty part of the stomach or thigh. Only issue is this drug causes Thyroid cancer in animals, pancreatic cancer, pancreatitis and a whole host of other problems in people... so now I'm panicking and hopping to get more information out of my RVI doctors as soon as possible, I want a treatment and my doctor says I need one as soon as possible but at what cost? Is getting an immediate treatment worth possibly risking my life? I have no idea but I'm scared and confused at the moment and will be writing another post about Liraglutide as soon as i know more info. 

After the call we ended up in Gr8 Escape York and it was amazing!!! We had lots of clues to figure out and had to escape to room to get our spy school diploma, unfortunately we are both bad at maths and the people monitoring us actually gave us the answers to a few clues haha! Still, we failed but honestly, it's the best experience ever!! I loved it as did Simon and can't wait to take out friends there! 

The next day was home time but we thought we would go into York city centre again and do a few things we never got to, we managed to get into a few shops which we never had the day before, Travelling Man where I bought a book called 'My Lesbian Experience with Loneliness" (awesome book by the way!), a Model shop so Simon could get some trains and things, and we went into the York dungeons which was hilarious, scary and utterly fascinating all in one! Overall it was a fab trip and we have made some wonderful memories,  got a lot of things to think about and will definitely be returning. 

Other than our trip to York I have become involved with the Sunderland University SU Buddies Scheme and and extremely excited about that, I go back the week of the 25th and my amazing best friend has been accepted into uni for her dream course which I'm so proud and excited for. I really can't wait for university to start but in the meantime I'mm be blogging more, reading up on course material, chilling and just doing me! 

I hope you all have had some amazing days this week as well! Thank you for reading and keep sharing ladies and gents! 

xo. 

Life Update and Exciting Future Projects!! The POMC Series

Hi again everybody! 

Image from google.com

So, it's been over a week since I made my return to blogging and explained that the focus and style of the blog would shift significantly and oh my gosh the support has been absolutely amazing! I truly cannot thank everybody enough for all of the comments, likes, shares, retweets and such. Most of all I would like to thank everyone who has taken the time to read the posts, to talk about them with their families, I've managed to get in contact with some of you whom have been reading the blog and honestly your stories are so touching and heart-warming. I'm really glad some of the posts have helped you guys and I'm overjoyed that the posts have given some even a slightly better understanding of Pro-opiomelanocortin deficiency disorder! That's the whole purpose of the blog. 

This post will be slightly shorter than usual but I just wanted to give you guys a very quick update on how life has been recently. Therefore, I shall begin with last week, I had been waiting on a phone call from my nurse at Cambridge hospital to find out whether or not I was eligible to take part in a drug trial, last Thursday she called me and turns out that because I only have one gene faulty in one pathway I'm not eligible just yet although she did say that if the drug works well on those with 2 faulty genes and doesn't need any development the tablet should be available to all of those with genetic obesity diseases. I was obviously devastated but that was actually what drove me to get my blog up and running and get so involved with fundraising and awareness raising for this condition; even if someone is not entitled to a drug to help them medically, their lives could be made better if there was more understanding and knowledge in the general public of this disease. 
Obviously you guys know how it went after starting the blog, I developed The POMC Series which is a series including any posts related to POMC and in the first week of blogging I've gained well over 1,000 views, I've connected with some amazing people and managed to do a couple of things I never dreamed I could with this page!

Now, since starting the blog up again a couple of things have happened, both of which I'm extremely excited and hopeful about these two things. First off, after posting the initial post about returning to blogging the President of the University Student's Union and vice president of wellbeing and engagement took and interest in it, who may I say are two of THE most amazing, kindest men I've ever had the true pleasure of meeting, made some absolutely wonderful comments about the blog and was far too kind about me. The president has always made me feel extremely comfortable and welcomed at the university and we met last year on freshers week and had to drag me to get my freshers band I was so nervous! Anyway I approached him after he made the comments and explained what my aim was and how could I work with the university in order to raise awareness and give a friendly face for those who may feel isolated or excluded from others. I had a meeting Tuesday passed which was very emotional and touching for us all I think and we have managed to set out some aims and overarching factors that we want to include or happen. 
Currently, we are scheduling another meeting for  sometime later in the first semester to discuss more ideas as we are hoping to maybe do something around the second semester, this is an extremely exciting turn of events and I'm feeling very confident and determined to carry this on!!

The second exciting thing that's happened is that on one of my posts that was shared by the Student Union president an amazing young woman and journalist has approached me and asked if she could conduct an interview with me about my condition and what has driven me to get to university, this opportunity is so great. I'm aware that this fabulous lady has worked at a number of newspapers and is an exceptionally talented and competent journalist so working with her this Monday is going to be very inspiring and enlightening. She currently writes for the university's newsletter so I will be making sure to ask permission to post that right here, ladies and gents! Keep your eyes open for more information about that. 
So, all in all everybody it's been a bit of a hectic week! I'm so excited to get all of these things underway. To be honest other than those major things all I have been up to is spending time with my friends, spending time with Simon, I had a day out the other day buying all of my stationary for uni which I'm always super happy about! I'm still trying to read the books I got from the Uni library to prepare for the next year (again massively excited about! ONLY 24 MORE DAYS!!), I've been planning, writing and posting blog posts for you all and finally me and Simon are getting ready to head off to York next week for 3 days which will be a long needed break away so I shan't be posting those few days although i will have a lot to post about when we get back!!

Exciting times are a'coming! 
Thanks for reading guys and I'll keep you up to date on everything going on, I'll also be posting a few more POMC related posts so look out for those! 
Have a great day! 
xo

Top 4 Favourite Places to Visit - in the UK!

Now I must admit I am far from what anybody would call a traveller, I am not one to sit and ponder all of the gloriously hot or exotic places I'd love to go. I'm much happier thinking about all of the road trips and visiting to do right here in the UK; however I have been to a few places so far in life, all in the UK obviously. I was thinking today while I was travelling up North (East) from down South about all the places I have been and how much I've enjoyed where I've been. So I thought it would be a good idea to make a post on my top 4 favourite places to visit in the UK. I'll only be putting 4 because these places are very special to me and wherever else I've been, the experience simply hasn't matched up with these 4 locations.

4. London - One things you should know about me, particularly for this post, is that I am 110% NOT a city girl, I can not stand the hustle and bustle of city life and would much prefer to be in the countryside... or better, at the coast. London however is such an amazing place! I first went there when I was 6 or 7 but unfortunately it was to spend 5 days in hospital so for the majority of the time I was there I barely saw a thing until I was allowed out. Oh but when I was I was absolutely gob-smacked, the place was brilliant with so many people in fabulous clothes walking around, the history of the capital is astounding too! If you're ever to visit London I highly recommend going to the London Dungeons and Madame Tussauds, my Mam almost got her eyebrows singed off in the Dungeons ha! It is a wonderful place to visit and should be on anybody's bucket list.

3. Edinburgh - Edinburgh, what can I say about it? The views are phenomenal, especially when you're up a height and get to see the whole city in its glory. It really is a splendid view, although the language barriers may be a stumbling block, if you're a strong accented Geordie you may have difficulty understanding the Edinburgh accent as I did ha! The history and culture of Edinburgh is so rich and varied its a wonder how anybody couldn't be fascinated with the place.

2. York - York is fab and has some absolutely wonderful markets, particularly around Christmas time, I've recently visited York again and the magnificence of the architecture hasn't diminished at all. The Cathedral is a must see for whoever is considering a visit there. There's so much you can learn about the whole of UK culture and history from the city, the architecture, as mentioned before is great and offers some fantastic photography opportunities. Also there are SO many cute tea rooms for those of you who're like me and can't resist a real Yorkshire cuppa tea.

1. Whitby - My all time favourite place to visit has to be Whitby. It's a small coastal town in North Yorkshire and, as with all of the previous places I've mentioned, it has a fantastically interesting and captivating history (including the fact that Whitby was the place Bram Stoker set and wrote Dracula! *fangirl squeal*) and some views that would melt your heart. It is not for these reasons that I love Whitby with such a passion, it's because of the memories the place holds for me; some of my happiest times have taken place in that little seaside town. Vintage, beautiful, comforting and my "soul place", Whitby is and always will be at the top of my list of favourite places to visit. 

                         

Let me know about any of your favourite places to visit.

Love Katheirne. X