All Emotions At Once

So I started this post about 20 days ago with

"A day with so many emotions!!! I don't know how to handle them all."

That day when you got all that ice cream you wanted but with a dollop of ketchup on top. Yep that's been my kind of day :/ "

And it was as far as I got. I then physically and emotionally lost it. With everything I already had to deal with, one more bit on top it turns out I couldn't handle. For the first week I barely slept and if i did it was on and off throughout the night, I got into a very depressive state. Didn't want to speak or see people, my housework became nil void and my health well it started kicking my ass.

I guess your asking why, when I'll tell you it may seem simple to some but to whom it's happening it isn't. Plus I have told doctors exactly whats happening before but finally I seen a consultant who told me I'm right!...So in one way it was a great relief, but on the other completely devastating. 

My bowels keep obstructing..... I'll be having a normal day, or sleeping and I will get an extreme urge to go to the bathroom, so I go and sit, and well do the natural next step but nothing happens yet still have an urgent feeling to go so try again and the feeling that follows, pain, hot flush, woozy and feeling so so sick. Early hours of the morning is its most popular moment, but happens at random points. I'll suffer discomfort and my stomach will balloon to the point where even my husband said "I think the Dr will test you for pregnancy today" and then it can be an hour or a few and it'll let it all out at once with barely any warning. Some times I get some air first (yes I mean fart!)

It's gotten worse recently, a lot worse, some days I can do daily stuff and others I'm taking pain killers and being out of it for hours at a time. BUT I finally got some sleep last Tuesday night and since then my mood has started picking up. If I have sleepless nights again it drops a little but hey I'm over tired its to be expected.

So I'm to have a "specialist MRI" not sure what that means but as my Desmoids don't show up on CT's whilst I'm in the MRI he wants to see if they can pick them up as well as the state of my intestine. From that we will see if they urgently need to go in and remove some intestine, and with the Desmoids covering them that's a BIG risk, Or to wait and if they close and stay closed be rushed to my local hospital, Whom last time I was rush in as it was a problem didn't know what Desmoid Tumours was.....So you see how wide my options are! Trust the specialists but with a big survival risk or wait and hope they notice and it gets worse before people who have no idea rush in.

All good times!

I hope you are all well and pain free <3

Update...Sorry It's Been A While

I'm so sorry it's been so long the past few months have been so crazy, but not with what your thinking, Nope! Not the Desmoids or the F.A.P, Nope!.... The lump in my face turned out to be a Tumour, I know exciting stuff right! My body is just chucking it all at me at once. So I have had the ultra sound and a MRI then a biopsy (that hurt like hell!! ain't gonna lie) and thankfully it was benign, but with the chances of it changing it's going to be coming out. Scar face here I come! So every 2-3 weeks I've been at the hospital for a procedure or the results but I have gotten great at spotting parking spaces though!! I know it's a real skill :D

So three weeks ago they said that'll happen in roughly 2 months, still waiting to hear a date. Just want It over with now.

On the Desmoid front I am finally seeing my other surgeon this Wednesday (the one the found and touched my Desmoids) to hopefully get the answers for questions me, my family and specialist all have and take it back to my specialist so we can finally get somewhere with that.

Other than that I'm having a bad time with pain and fatigue, feel like I'm missing out on so much as once home from work I'm so tired I'm not going anywhere or seeing anyone and even my housework is failing. Going to speak to my boss tomorrow about reducing my hours as my body is just not coping. Had to take this weekend off which to me feels like I've failed and I do not like to fail. So I guess right now I'm a little low in myself but I'll bounce back, I know there is always someone out there worse off than me so I give myself a short period of feeling low then kick myself back into shape. Usually happens when my hormones do there thing, it's when the pain gets worse to! I'm sure they're connected it's on my question list for my specialist in August.

Before I go I wanted to share something with you my husband said to me today whilst I paced up and down rubbing my tummy wishing the swelling would go down. I said I was frustrated that all the Dr's say now is, "Well there is nothing we can do now until they cause obstructions, we can't scan you regularly as that in 30 years it'll heighten your chance of cancer so we just have to manage it, here's some pain killers" And when I complain of pain in specific areas "Well you shouldn't" ...Well I do and I'm telling you, You saying I shouldn't doesn't change the fact that I am!!!! That answer really frustrates me! but my husband turned to me and said "Babe, it is all they can say because they don't have it and have no idea how it works or feels" Sadly I have to admit my husband has a point lol they don't. Plus when they say that I don't stand up for myself, that needs to change to. Just so tired by time I get to them it's all nodding and agreeing.

I hope you are all well and pain free <3

Results...Kinda?

Sorry It's taken me so long to update but I thought It best for me to understand my results first before trying to explain them to you, then I had more hospital appointments for other bits and news on them so It's been a little hectic.

Okay so my results are either one of two things, 1: My Desmoids are to small to show up on a CT (which would be great news) OR 2: They don't show up on scans (not so fun news). So they next step for them is I now have to return to the surgeon who found them when opening me up as he is the only person who can answer this. So the next step is booking in to see him and then returning back to the specialist in a couple of months to tell them what he said. I know what your thinking "Why don't they ask him?" Yeah they did with no response, So it is now down to me to personally find out and get my CT's from him as well.

What did highlight on the CT though was my closed Fallopian Tube is now full of fluid along with the Ovary (Fun Times!) So now have to go get that scanned separately and then see a DR for that, So excited..another Dr, YAY!

I Just met with another Dr (Yes I am collecting them now lol)  last week about the lump in my jaw and they want to biopsy it, they have also asked for a CT and Xray to, no Ultrasound as I already had that done. After all that I will see them next month to discuss surgery! Gosh the fun keeps on coming!

And thennnn lol Just one more! I am off to a plastic Surgeon who will fix my scar from when they found my Desmoids nearly 4 years ago as the top won't heal properly. By this I mean my body keeps telling it it hasn't healed yet so keeps healing so it is growing outwards which gets in the way sometimes and really itches to. It use to weep as well but last year that finally stopped :)

So yeah it's been kind of busy at the moment, and how I feel about it all changes daily but I keep on smiling as it's one of the things in life we have control of, being happy :)

I hope you are all well and pain free <3

The countdown

Okay so next Monday I get my results, find out where these are an how big they are and although I'm feeling positive and thinking of all the best options I am nervous. I keep thinking being nervous when you don't think the results are going to be bad is wrong, like I shouldn't feel this way. But tonight I learnt it's okay. Nerves are a natural human reaction to the unknown, or in some cases the known. You could have long hair and about to get a long bob and you feel nervous! Perfectly okay. About to go on a date and your nervous, also okay! There is no rule book for nerves, they just show up when they want to. How we handle them though is a different matter. I for one become short tempered and emotional so the second I feel the nerves feeling creeping in I am straight to my husband to let him know, not so he can give me sympathy!! No I don't want none of that, just so he knows his silly moments that would normally make me laugh, probably not the best time for them. Basically treat me like it's "That Time" again lol All us women get "That Time" and I tell him so my nerves don't cause us any problem. I usually tuck myself away with a film and a cheeky drink and let it ride over me, Then the moments that doesn't work I know I have my amazing husband and family who are there to listen or just for cuddles. So just remember, any emotion you are feeling, it's okay! Some may not understand it and that's okay to, we are all different. One thing I've learnt is... It's Okay To Be Different :)

I hope you are all well and pain free <3

Scan Time

So Friday was my first scan's In 3 years, Little confused? "My Story" post below explains all :)

So we left at 9am as my first appointment wasn't until 10:30am but our luck on the way there you wouldn't have thought we was going to make it. Not 2 minutes in and come to our first main roundabout and it is being swept by a road sweeper so we are having to wait, the lady behinds us decides we aren't moving fast enough for her and pulls into the other lane at the exact time we start pulling out. Seriously that sweeper isn't small she must have seen it, but apparently her better option was to go around and try cut us up *rolls eyes* I'm thinking she was in a hurry as she was then behind us until we hit the motorway and instantly she went around us into the fast lane and was gone, the speed was capped so I'm hoping the camera's caught her. So that drama over with we continued on, got through a bit of congestions and finally hit an all but clear motorway. A few moments of relaxing until we come to a slip road and just a few cars join, first well infront of us slides right over to the fast lane and was gone and the next a little green Micra joined and sat up infront of us for a short while as we approached along side two lanes over. Without warning this Micra flies two lanes over right infront of us doing alot less speed than us, If my husband hadn't reacted so quickly we would have gone straight into the back of him! Luckily behind us was clear so no other cars were put in danger. Needless to say the rest of our journey we was so careful and so on guard as they say everything comes in 3's but we arrived safely and in good time. First up was the Ultrasound on my jaw lump, I swear she was drawing a beard on me with the gel and could tell by her face it suited me for sure! I will get the results of this on Feb 28th...I know a Saturday!!! And in the morning to so no partying for me on the Friday tsk! Then was my CT scans for both my chest and Abdomen. I was fine up until this point, soon as I saw the machine the tears fell, This is it, This is now real. 3 years with no scan god what is it going to show, the nerves had definitely arrived. I held myself together for the scan keeping as still as possible, which apparently I did good at (gold star for me ;) ) Originally I was having to wait until the middle of March for my results but due to having been ill the recently (read post below for details) It is being brought forward, I have been given 2 dates and told one will be confirmed. So either on the 16th or 23rd Feb I will find out my results. Best results would be either no growth at all! OR Little growth making it a slow grower. The pain in new places and beautiful new lumps have me some what doubting it but there's always a chance the new lumps are adhesion's and the new pains are from something else but haven't been looked at properly as I have Desmoid's and so has been put down to them *Nods firmly!* Positive thinking will prevail!!!

It's been a long two weeks!

Gosh where to start! It's been a very long and not so fun two weeks. It all started with a migraine that came on towards the end of my shift at work. Now for those who know me I extremely rarely get a headache, like I think 6 maybe, one of which was a migraine, well this was my second. I came home and did the usually in the dark in bed ritual, all the good stuff and when I woke I was a little unwell with my tummy and really thirsty. Thinking nothing of it I just continued the day in my pj's and mostly sleeping feeling worse and more thirsty every time I woke, then the pain crept in, In my kidneys, abdomen and ribs. I had that weekend off so thought I would just rest and all would be right by Monday but I was wrong. Every daily thing I did would make me need to sleep, Getting dressed, Showering, making lunch, I would need to rest or sleep after. Every waking moment I had a drink in my hands no matter what I was thirsty all the time. I thought It must be a virus and would go in a few days. Sunday afternoon came and knowing I had work the next day knew I needed to push myself and do some housework to show myself I could go to work the next day, bad mistake! I figured the hoovering needed doing so lets do that, just a few movements and I was a little breathless...pff that's not going to stop me! So I moved onto the stairs, by the 3rd step I knew I should stop but stubborn as I am refused, by the 5th could barely hold myself up let alone hold onto the hoover itself so had to shout for my husband to help, Felt a little useless at the moment If I'm honest. After being "rescued" I laid on the stairs for a while catching my breath until I had enough strength to move up the stairs to bed and realised now was the time to see a Dr, something obviously wasn't right. In the morning I made an emergency appointment and by 11:20 was in seeing a Dr. He was just as puzzled as me, I didn't have an infection or a temperature. Hadn't had a fever at all, not diabetic and my skin test said I wasn't dehydrated so we was lost where to look next.He then suggested I call my specialist and ask her and if she said it was nothing to do with my Desmoid's to return and he would decide where to go next. I left the office feeling very frustrated as this response is so common for me now. My trip to the office had worn me so had a little rest and decided even though when the Dr's say to ring my consultant and I ignore them and everything fixes itself, this time I didn't feel right and decided to call my specialist nurse instead. She wasn't in but had gotten back to me the next day. I told her about the pain, sleeping and constant thirst and after a few questions she told me about things Desmoids can do to you body, this was one. She sent me a recipe for an the most vial tasting drink EVER! Even recommended I drink it through a straw to bypass the tastebuds as much as possible lol It was to rehydrate my body. A few days later and I was finally fully awake!! was a great feeling. The pain has now dampened accept for the odd dig here and there but that's common for me now. Finally today after soooo many days off I returned to work, you wouldn't believe how happy I was to be there!! Never thought I would be saying that! lol So if you was wondering why my blog and page has been so quietly lately this is why. I hope you are all well and pain free <3

Pain Management (this may get a little personal FYI )

So as I wrote in a previous post I have now received pain management finally! I'm still on tablets that can be brought over the counter which as per the others I had do nothing for the pain. I'm refusing to go to the next level but have had a few days recently where the pain has almost had me screaming and I've nearly given in. Everyone says if I need them then just take them  and to stop being brave! But I don't think people understand what that comes with. I wouldn't be able to drive on them, so couldn't get to work! and they make me sleep. I can't handle the thought of letting it overcome me! So I push through and feel better for it when it all goes away and feel I have defeated it for the day!! Puffing my chest out and strutting "Ha you won't defeat me!" These things already took some things from me, I can no longer wear normal bra's. When I sit one tumour sits on the other and putting a wire on top one of them is so uncomfortable there's no words. Trust me wearing sports bra's is not sexy and you do not feel womanly! So I will not let it take work or going out from me to!

I would be very interested if anyone has found any other ways to help with the pain. Tried hots baths etc, A hot wheat bag takes the edge off a little so will be investing in a new one of those as I have burnt the wheat in this one now! oppps

Please comment below if you know of other ways or feel free to messege me on my Facebook page

Desmoids Suck, Let's Help Find A Cure