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
Saturday, 24 January 2015
The New Beginning
So we're starting from scratch, like I have just been diagnosed...Well it pretty much feels like I have so will go with it for now. Everyday a letter or a call booking me in for something, Only missing one appointment missing now then I'll have my full set. It's all starting to sink in now and feeling more real and with that comes less sleep and more nerves!!! WOW. I'm going through days of purely tears and some of...pff it's all going to be fine, it's me, this wouldn't happen to me!
So I have some dates through, two main important ones:
6th Feb 2 CT's and an Ultrasound. Thank goodness the Ultrasound is first as I know what I have to drink before my CT ;) that would have been interesting the other way round lol
16th March Oh gosh the results, But it's only the results if they achieve getting an old CT scan from my local hospital from 2 1/2 years ago and my CT from pre op little over 3 years ago. If they don't get them then I don't know what this is.
I don't know what I'm hoping the outcome is... Ok obviously "Hey they disappeared!" would be perfect!!! but with the new tumours showing up I'm seriously doubting that's it. "The original one hasn't grown but you do have new ones", that's an ok outcome, better than others I can think of.
But right now it is literally my mind doing over time and no matter how much people say to you "It's going to be fine, just stop thinking about it" yep, lets just say that's not going to happen, worst sentence ever! You can't stop the mind doing it's thing. So for now keeping as busy as I can and during the bad moment speaking to the people I love , not to much as to make them fed up with me but enough to keep me sane.
Thank you all for being so amazing <3 I owe you all big time!
So I have some dates through, two main important ones:
6th Feb 2 CT's and an Ultrasound. Thank goodness the Ultrasound is first as I know what I have to drink before my CT ;) that would have been interesting the other way round lol
16th March Oh gosh the results, But it's only the results if they achieve getting an old CT scan from my local hospital from 2 1/2 years ago and my CT from pre op little over 3 years ago. If they don't get them then I don't know what this is.
I don't know what I'm hoping the outcome is... Ok obviously "Hey they disappeared!" would be perfect!!! but with the new tumours showing up I'm seriously doubting that's it. "The original one hasn't grown but you do have new ones", that's an ok outcome, better than others I can think of.
But right now it is literally my mind doing over time and no matter how much people say to you "It's going to be fine, just stop thinking about it" yep, lets just say that's not going to happen, worst sentence ever! You can't stop the mind doing it's thing. So for now keeping as busy as I can and during the bad moment speaking to the people I love , not to much as to make them fed up with me but enough to keep me sane.
Thank you all for being so amazing <3 I owe you all big time!
Wednesday, 14 January 2015
Fast Tracking
Hey Guys!!
Sorry it's taken a few days to write this, needed a few day's to digest and think it all through myself first. Was a long appointment and a lot to remember, which some I think I have already forgotten, but will do my best to put the details in here correctly.
My beautiful mum and gorgeous husband joined me at this appointment as I felt to emotional to remember everything I wanted to ask and remember all the answers. I didn't want to come out feeling I still had questions. They was amazing support to.
There was a lot of points to the appointment, Past, present and future and for now lets concentrate on the last two.
My Consultant for the day (not my main one but did get to see her to) I can't fault him, he was amazing! He dealt with my tears, anger, fears and frustration with ease. He listened and responded to everything! I still feel no comfort yet but maybe after the next one I will :)
After nearly an hour of talking, pressing, prodding and somewhat discomfort later, speaking with both this lovely consultant and the main lady! We got a lot done and a LOT of upcoming appointments. It was almost like carrying a library of paperwork out of there lol. So what's next!
Pain management:
After explaining how over the counter ones don't touch the pain, I was prescribed one I had been previously told I wasn't allow but she thinks it will be ok, I have taken it a few times since and was ok with it although it has done nothing for the pain either. She is also writing to my local doctor to say if they don't work to prescribe me a specific stronger one with her permission. I will try these ones for a few more days first, I've never been a fan of tablets and can deal with a certain level of pain so if I can I would like to avoid the next step up from them for as long as I can.
Scans:
In the next two weeks I am going to be having two CT scans, one for my chest and one for my abdomen to see what these little suckers are upto! Then I will have an Ultrasound on my jaw to see what the lump is. In the mean time they will collect my past CT scans from two other hospitals to compare them to the soon to be recent ones.
Appointments:
Following both of these scans I am to see my Consultant again in March and will also see a Maxillofacial team to discuss the lump in my jaw, what it is and how we get rid of it!
The biggest disappointment of the day was sitting in the waiting room to see Desmoid specialists, looking at all the tumour leaflets and not seeing a single leaflet for Desmoid's. I know we're rare but don't we deserve some source of information? Even if its just one side of a piece of paper? Must we Google everything and feel scared and frustrated by all that's out there?
This is one of the main reasons I started this blog, Even the hospitals make you feel alone! Well your not :) and I hope my page is somewhat, if at all helping somebody out there.
I hope you are all well and pain free <3 Much love x
Sorry it's taken a few days to write this, needed a few day's to digest and think it all through myself first. Was a long appointment and a lot to remember, which some I think I have already forgotten, but will do my best to put the details in here correctly.
My beautiful mum and gorgeous husband joined me at this appointment as I felt to emotional to remember everything I wanted to ask and remember all the answers. I didn't want to come out feeling I still had questions. They was amazing support to.
There was a lot of points to the appointment, Past, present and future and for now lets concentrate on the last two.
My Consultant for the day (not my main one but did get to see her to) I can't fault him, he was amazing! He dealt with my tears, anger, fears and frustration with ease. He listened and responded to everything! I still feel no comfort yet but maybe after the next one I will :)
After nearly an hour of talking, pressing, prodding and somewhat discomfort later, speaking with both this lovely consultant and the main lady! We got a lot done and a LOT of upcoming appointments. It was almost like carrying a library of paperwork out of there lol. So what's next!
Pain management:
After explaining how over the counter ones don't touch the pain, I was prescribed one I had been previously told I wasn't allow but she thinks it will be ok, I have taken it a few times since and was ok with it although it has done nothing for the pain either. She is also writing to my local doctor to say if they don't work to prescribe me a specific stronger one with her permission. I will try these ones for a few more days first, I've never been a fan of tablets and can deal with a certain level of pain so if I can I would like to avoid the next step up from them for as long as I can.
Scans:
In the next two weeks I am going to be having two CT scans, one for my chest and one for my abdomen to see what these little suckers are upto! Then I will have an Ultrasound on my jaw to see what the lump is. In the mean time they will collect my past CT scans from two other hospitals to compare them to the soon to be recent ones.
Appointments:
Following both of these scans I am to see my Consultant again in March and will also see a Maxillofacial team to discuss the lump in my jaw, what it is and how we get rid of it!
The biggest disappointment of the day was sitting in the waiting room to see Desmoid specialists, looking at all the tumour leaflets and not seeing a single leaflet for Desmoid's. I know we're rare but don't we deserve some source of information? Even if its just one side of a piece of paper? Must we Google everything and feel scared and frustrated by all that's out there?
This is one of the main reasons I started this blog, Even the hospitals make you feel alone! Well your not :) and I hope my page is somewhat, if at all helping somebody out there.
I hope you are all well and pain free <3 Much love x
Saturday, 10 January 2015
Long Over Due!
So as we know I was diagnosed with Desmoid Tumours 3+ years ago on my organs and was basically told they was growths and nothing to worry about and as they had done nothing since I believed this, even though some new lumps had arrived. In November after mentioning the pain to the doctor who was about to do my Sigmoidoscopy I find out they aren't that friendly and I should have been having 3 monthly MRI scans to watch and see if there growing. Well as new ones have arrived I'm going to go with yes, there growing. So Even though the one consultant that found them had sent a letter to my other consultant (yes I am greedy and have a few of them lol Some of you collect stuffed toys or stamps, I'm collecting consultants lol) this consultant being part of the Sarcoma and Desmoid team I'm guessing hadn't read the letter? Well anyway it's all being sorted now and I am finally seeing her on Monday and at a guess this is to be referred to the specialist team and find out the name of the Oncologist I will see and be booked in for my MRI. I will also be asking about pain management as the last few months the pain has increased, along with my appetite decreasing along with my waistline... but hey who can complain about losing a few inches huh ;)
So only 2 more sleeps to go before I get some answers about the past 3 years and hopefully some information on what the future holds. In the meantime I hope you are all well and pain free <3
So only 2 more sleeps to go before I get some answers about the past 3 years and hopefully some information on what the future holds. In the meantime I hope you are all well and pain free <3
Pain Stricken!
I was writing a post about my upcoming appointment until I just had the WORST past ten minutes in along time!
It was like a massive spasm at the bottom on my ribs, feeling like my ribs and stomach were twisting. My breath taken from me and the pain, oh I can't describe!!! It scared the life out of me and I just wished it would end. And it did but something wasn't right and I touched where the pain had been and dully still was, the Desmoids on my ribs were now pushed up, so much so my husband could finally see and feel what I was talking about! I've always been able to feel them I guess because I know my body better so knew what it felt like before I had them. Is it weird knowing he now has felt them to is reassuring? Like what I've been saying is real? does that make sense?
So I'm sat here with them still up as the pain is finally passing, a little tearful and still a little breathless wondering what on earth just happened. More so than ever looking forward to my appointment at the hospital and most definitely looking forward to my first MRI to see what these little suckers have been up to.
But I am also lucky as soon as I could move I spoke to my friend who has some in one of the same areas as me and straight away she knew what I had gone through and was reassuring. Desmoid buddies are a great thing to have and I hope you all have yours as I am truly thankful to have found mine. Thank you hunni <3
It was like a massive spasm at the bottom on my ribs, feeling like my ribs and stomach were twisting. My breath taken from me and the pain, oh I can't describe!!! It scared the life out of me and I just wished it would end. And it did but something wasn't right and I touched where the pain had been and dully still was, the Desmoids on my ribs were now pushed up, so much so my husband could finally see and feel what I was talking about! I've always been able to feel them I guess because I know my body better so knew what it felt like before I had them. Is it weird knowing he now has felt them to is reassuring? Like what I've been saying is real? does that make sense?
So I'm sat here with them still up as the pain is finally passing, a little tearful and still a little breathless wondering what on earth just happened. More so than ever looking forward to my appointment at the hospital and most definitely looking forward to my first MRI to see what these little suckers have been up to.
But I am also lucky as soon as I could move I spoke to my friend who has some in one of the same areas as me and straight away she knew what I had gone through and was reassuring. Desmoid buddies are a great thing to have and I hope you all have yours as I am truly thankful to have found mine. Thank you hunni <3
Saturday, 3 January 2015
My Story So Far.......
As Promised Here is my story so far, will update as we go :)
When I was 16 my father was diagnosed with Bowel Cancer :( from this me and my siblings were tested for a hereditary condition called F.A.P ...Familial Adenomatous Polyposis. Out of 6 of us both me and my older sister was diagnosed and had our large intestines removed followed up by a Sigmoidoscopy every two years, then yearly, then added a Gastroscopy. Nearly 4 years ago my consultant sent me to a new team in London to be under specialist in F.A.P and from there first check up they found a 3.5cm growth (largy polyp with some changes in the centre) in my Duodenum and was sent to yet another London hospital as they had another specialist and a better internal scan machine ... yep that's my full name for it, a internal scan machine lol... They did there own checks and biopsies and discussed me with a board of specialists and decided I needed a procedure called Whipple's. Basically this means taking a little off everything, Stomach, Gallbladder, Pancreas, Intestine and of course the Duodenum. The day came, I went to sleep and I woke, they hadn't done much except give me a new 9 inch scar. When they paralysed my body to do the surgery there they were, proud as can be and standing tall....My Desmoids! I guess they opened me up to be sure of what they were and I believe untangle me a bit but to be honest with all that happened I'm not sure exactly what they did. So from there I was told they couldn't do the surgery as the Desmoids were attached the the organs and this weakens them and sewing them back together is, how I like to put it...sewing jelly together. The stitches could hold but a high chance of the threads sliding through them like jelly and it all falling apart inside me. So there I was with Desmoids, yep no Idea what they were and still with this growth (large Polyp) and now 6 monthly biopsies on it, FUN!. After this and a few low points I just got on with everything, worked, moved and just got one with life. Had some pain start but ignored it and when I saw one of my consultants mentioned it with his reply "You shouldn't have" and left it at that, then the next time mentioned the pain and permanent nausea but nothing. Then went back to my old hospital in November for my yearly Sigmoidoscopy and mentioned this to the Doctor doing the procedure to be asked when my last MRI was, slightly confused I said never. This is the moment I started learning about Desmoids. Within minutes he had an appointment for my other consultant, which I may add I had been trying to get and asked repeatedly for over a matter of years to speak about the pain but never go one. So In a week I will be seeing her and seeing what's next and in the mean time found groups and sites to learn about them and different types and chatting with people who have been through a lot to. The path forward looks a bit scary but hopefully I will be one of those in the future saying I'm a surviviour!! But either way I know/hope they will learn from me and my body and help someone In the future, I'll be one of there textbooks :)
So yes that's me, Only bit that's not in there is my amazing supportive family and friends, especially my mum and husband! My mum......I could never thank her enough for being so amazing and strong through all of this. Hope one day I manage to show her how grateful I am for her being here. My Husband, my rock could never ask for more from him. I'm a very lucky woman :)
Links:
What are Desmoids
F.A.P
Sigmoidoscopy
Gastroscopy
Whipples
MRI
Internal Ultrasound
When I was 16 my father was diagnosed with Bowel Cancer :( from this me and my siblings were tested for a hereditary condition called F.A.P ...Familial Adenomatous Polyposis. Out of 6 of us both me and my older sister was diagnosed and had our large intestines removed followed up by a Sigmoidoscopy every two years, then yearly, then added a Gastroscopy. Nearly 4 years ago my consultant sent me to a new team in London to be under specialist in F.A.P and from there first check up they found a 3.5cm growth (largy polyp with some changes in the centre) in my Duodenum and was sent to yet another London hospital as they had another specialist and a better internal scan machine ... yep that's my full name for it, a internal scan machine lol... They did there own checks and biopsies and discussed me with a board of specialists and decided I needed a procedure called Whipple's. Basically this means taking a little off everything, Stomach, Gallbladder, Pancreas, Intestine and of course the Duodenum. The day came, I went to sleep and I woke, they hadn't done much except give me a new 9 inch scar. When they paralysed my body to do the surgery there they were, proud as can be and standing tall....My Desmoids! I guess they opened me up to be sure of what they were and I believe untangle me a bit but to be honest with all that happened I'm not sure exactly what they did. So from there I was told they couldn't do the surgery as the Desmoids were attached the the organs and this weakens them and sewing them back together is, how I like to put it...sewing jelly together. The stitches could hold but a high chance of the threads sliding through them like jelly and it all falling apart inside me. So there I was with Desmoids, yep no Idea what they were and still with this growth (large Polyp) and now 6 monthly biopsies on it, FUN!. After this and a few low points I just got on with everything, worked, moved and just got one with life. Had some pain start but ignored it and when I saw one of my consultants mentioned it with his reply "You shouldn't have" and left it at that, then the next time mentioned the pain and permanent nausea but nothing. Then went back to my old hospital in November for my yearly Sigmoidoscopy and mentioned this to the Doctor doing the procedure to be asked when my last MRI was, slightly confused I said never. This is the moment I started learning about Desmoids. Within minutes he had an appointment for my other consultant, which I may add I had been trying to get and asked repeatedly for over a matter of years to speak about the pain but never go one. So In a week I will be seeing her and seeing what's next and in the mean time found groups and sites to learn about them and different types and chatting with people who have been through a lot to. The path forward looks a bit scary but hopefully I will be one of those in the future saying I'm a surviviour!! But either way I know/hope they will learn from me and my body and help someone In the future, I'll be one of there textbooks :)
So yes that's me, Only bit that's not in there is my amazing supportive family and friends, especially my mum and husband! My mum......I could never thank her enough for being so amazing and strong through all of this. Hope one day I manage to show her how grateful I am for her being here. My Husband, my rock could never ask for more from him. I'm a very lucky woman :)
Links:
What are Desmoids
F.A.P
Sigmoidoscopy
Gastroscopy
Whipples
MRI
Internal Ultrasound
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