So, this time tomorrow I will be heading to the hospital. Scared is not the word. All consuming terror is closer to it. It's not normal for me to be sorting out kitchen cupboards at 7:30 on a sunday morning, yet this is what I found myself doing earlier - keeping busy.
Mostly it's the unknown I'm worried about - how much pain will I be in? How much mobility will I have? I'm pretty compulsive about planning things down to the last detail so not knowing everything doesn't sit well with me. I have other minor concerns too - like the oxygen mask they use when putting you under. It always sets off a panic reaction that I just can't help. No matter how much I tell myself it's just oxygen and it's fine, if that mask goes flush against my skin I feel like I'm suffocating and cannot physically stop myself from pulling it off. The last two ops I have had they have allowed me to hold it myself just a millimetre above my mouth which is fine (because I'm in control) obviously as soon as I'm under they attach it but that's fine too. I hope they will be accommodating of my silly fear tomorrow....
Waking up is my biggest concern. Thanks to my recovery being mucked up during my last op I'm very apprehensive. Hopefully I can discuss this beforehand and have my fears alleviated but again, it's an unknown, and that scares me.
I really don't know how I'm going to cope, but I just want to get it over and done with and get back to my family. I won't have any internet access whilst in hospital, but I'm taking an old fashioned notebook and pen and if I'm not too spaced out on drugs to write will compose my blog updates and give them to my lovely husband who has offered to update this page for me - so watch this space!!
Sunday, 17 July 2011
Saturday, 2 July 2011
Wait and See is Not For Me!
As I have searched the web and (virtually) met others with HS it has become apparent that most people who have had wide excision surgery had much larger and/or aggressive stage 3 areas than mine. So it seems to me to be important to address WHY I have opted for surgery at this point before I have exhausted other options. There are reasons, they may not be reasons others would have, they may not be right, but they are reason enough to me:
1. I do not believe any other treatment option will work.
A bold statement I know - and I may not be right, but my gut and my research tells me that for me at least this is true. I respect other people's experiences, I respect and thank them for sharing these experiences online so that people like myself can read them. Time and again I have read that people have tried this drug, that drug, the other drug etc etc and have ultimately ended up having surgery after years of no success. Not everybody, that's true, some have had remission from drug therapy - but nothing I have tried so far has worked for me.I have no desire to take stronger and stronger drugs to try and find one that works for me - whilst in the background my HS gets worse and worse and therefore harder to treat.
2. It's getting worse.
Every flare up seems to be worse than the last, and it's spreading. It used to favour the top half of my axilla now it is edging ever closer to my breast. Should I wait and see if it stays put and risk having to have a larger area excised in the future? No thanks - I would rather have it removed now before it forms more tracks and becomes harder to remove.I believe that the earlier it is dealt with the more chance of success I have.
3. My quality of life NOW is not acceptable.
Above everything this is the main reason. Yes, other people have "worse" HS than myself, but ultimately right now this condition is having a huge negative impact on my life. It stops me doing things I want/need to do, it causes me pain, it lowers my self esteem. Yes, it could be a lot worse (and I believe if left it would quickly become so) but I'm not prepared to put up with my life being continually disrupted just because it's not as bad as it COULD be.
4. It won't stop fighting - so neither will I!
There are no guarantees - the surgery may not work. But I have a shot at actually removing this horrible affliction - not just suppressing it, not just reducing it but actually removing it. I may not beat it, but I'm going on the offensive - You want to mess with me HS? Let's see how you fare against the scalpel then!
5. I owe it to my family.
It is not fair on my husband and kids to keep having to put up with a mummy/wife who either cannot do things we had planned because of the pain or keeps ending up having emergency surgeries disrupting everybody and causing worry and stress. HS CAN be hereditary in some cases (not all) so there's a chance that one or both my children may get it later in life - I need to know if this will work if done early enough for their sakes too.
1. I do not believe any other treatment option will work.
A bold statement I know - and I may not be right, but my gut and my research tells me that for me at least this is true. I respect other people's experiences, I respect and thank them for sharing these experiences online so that people like myself can read them. Time and again I have read that people have tried this drug, that drug, the other drug etc etc and have ultimately ended up having surgery after years of no success. Not everybody, that's true, some have had remission from drug therapy - but nothing I have tried so far has worked for me.I have no desire to take stronger and stronger drugs to try and find one that works for me - whilst in the background my HS gets worse and worse and therefore harder to treat.
2. It's getting worse.
Every flare up seems to be worse than the last, and it's spreading. It used to favour the top half of my axilla now it is edging ever closer to my breast. Should I wait and see if it stays put and risk having to have a larger area excised in the future? No thanks - I would rather have it removed now before it forms more tracks and becomes harder to remove.I believe that the earlier it is dealt with the more chance of success I have.
3. My quality of life NOW is not acceptable.
Above everything this is the main reason. Yes, other people have "worse" HS than myself, but ultimately right now this condition is having a huge negative impact on my life. It stops me doing things I want/need to do, it causes me pain, it lowers my self esteem. Yes, it could be a lot worse (and I believe if left it would quickly become so) but I'm not prepared to put up with my life being continually disrupted just because it's not as bad as it COULD be.
4. It won't stop fighting - so neither will I!
There are no guarantees - the surgery may not work. But I have a shot at actually removing this horrible affliction - not just suppressing it, not just reducing it but actually removing it. I may not beat it, but I'm going on the offensive - You want to mess with me HS? Let's see how you fare against the scalpel then!
5. I owe it to my family.
It is not fair on my husband and kids to keep having to put up with a mummy/wife who either cannot do things we had planned because of the pain or keeps ending up having emergency surgeries disrupting everybody and causing worry and stress. HS CAN be hereditary in some cases (not all) so there's a chance that one or both my children may get it later in life - I need to know if this will work if done early enough for their sakes too.
Friday, 1 July 2011
Wide Excision
I still don't know as much about the procedure as I would like, but here's what I know about what is going to happen so far:
They are going to remove essentially my entire armpit - from the top of my breast to the top of my armpit (so about 4 inches long by 3 inches wide) and remove skin from my thigh (the "donor site") to graft onto it. The dressing will be initially stitched on to give the graft the best possible chance of taking. I'm going to be staying in for about 4 days, and after that will have to travel there 3 times a week for dressing changes (I did ask if I could have that done more locally - but apparently as the graft only has a 50% chance of taking they prefer to do it themselves as they are highly specialised)
I will not have much mobility at all for the first couple of weeks (and will probably be off my head on pain meds) - the surgeon has told us that I will not be able to care for the kids by myself for at least that long. Total recovery (or recovery enough to function normally) should take about 8 weeks if the graft is successful, longer if not.
So that's the technical stuff - as for how I feel about it all that's up and down. Of course I'm happy that something is being done at last, but I'm also very very scared. I'm scared about the pain, about the sheer horror of it and I really really don't want to be away from kids for so long. I'm worried about money (8 weeks at least with only sick pay, plus it will cost £16 a time to travel there and back for my dressing changes) but mostly I hate the thought of being alone in hospital and hardly seeing my kids (it's an hour there and back so it wouldn't be fair to drag them there and back every day) or my hubby for several days.
I would like to just go to sleep and wake up in september when it's all over please!!!!
They are going to remove essentially my entire armpit - from the top of my breast to the top of my armpit (so about 4 inches long by 3 inches wide) and remove skin from my thigh (the "donor site") to graft onto it. The dressing will be initially stitched on to give the graft the best possible chance of taking. I'm going to be staying in for about 4 days, and after that will have to travel there 3 times a week for dressing changes (I did ask if I could have that done more locally - but apparently as the graft only has a 50% chance of taking they prefer to do it themselves as they are highly specialised)
I will not have much mobility at all for the first couple of weeks (and will probably be off my head on pain meds) - the surgeon has told us that I will not be able to care for the kids by myself for at least that long. Total recovery (or recovery enough to function normally) should take about 8 weeks if the graft is successful, longer if not.
So that's the technical stuff - as for how I feel about it all that's up and down. Of course I'm happy that something is being done at last, but I'm also very very scared. I'm scared about the pain, about the sheer horror of it and I really really don't want to be away from kids for so long. I'm worried about money (8 weeks at least with only sick pay, plus it will cost £16 a time to travel there and back for my dressing changes) but mostly I hate the thought of being alone in hospital and hardly seeing my kids (it's an hour there and back so it wouldn't be fair to drag them there and back every day) or my hubby for several days.
I would like to just go to sleep and wake up in september when it's all over please!!!!
June 2011 part two - The Hospital From A Different World...
On 29th June I travelled with my husband to the Queen Victoria Hospital in East Grinsted to meet with a consultant plastic surgeon. The journey takes about an hour. It is a specialist hospital (mainly reconstructive, plastic surgery, burns, head and hand specialists from what I can gather) and I was very shocked at how it looked - it appeared consist of a series of huts, requiring you to go outside in order to walk from one ward or department to another. It may not look impressive, but within a minute of arriving it was very clear that this was a hospital where the staff are incredibly friendly and helpful, and it seems to feel much more laid back and less hurried than my local general hospital. The receptionist on the front desk acted more like a hotel receptionist than a medical one - big welcoming smiles and all the time in the world to help us find where we were going. In fact, you never got the feeling that you were bothering or holding up any of the staff, the receptionist in the outpatients dept chatted away to patients like old friends and everyone working there just seemed happier than at a normal hospital.
Nevertheless, I was expecting to be fobbed off. When I saw the plastic surgeon I was all full of everything I wanted to say, all the points I needed to make - essentially ready for a ruck! I was totally flabbergasted when he looked at my axilla and was just totally self-assured and matter of fact (he had the air of someone who knew all about it - a shock in itself). There was no hesitation he stated that "well all that clearly needs to come out" and muttered about "what have they been playing at?" and "what's the point in medications that don't work?" - finally, finally someone who had not only treated it before but was more interested in actually trying to solve the problem than giving me pills and hoping I'd shut up. He felt that because of the tracking (sinus tracts) in the area the only sensible course of action is to remove the skin, including sweat glands.
I was then expecting there to be a 3 - 6 month wait for the op - and was totally shocked to discover it would be in less than 3 weeks!! Everything then happened very quickly (the Queen Victoria, I discovered, is a very efficient hospital) I went from not even knowing if I would be offered surgery to having all my pre admission obs, tests and interviews done in the space of 2 hours!! This was fantastic, of course, the only drawback being that I hadn't had time to get my head around the fact that I was actually going to have this fairly major operation, so I didn't really know what questions to ask.
It was a surreal experience - even the nurses taking my blood pressure knew all about HS. It really was as if I'd fought through a fog and found an oasis in the middle of it where everyone understood me.
Nevertheless, I was expecting to be fobbed off. When I saw the plastic surgeon I was all full of everything I wanted to say, all the points I needed to make - essentially ready for a ruck! I was totally flabbergasted when he looked at my axilla and was just totally self-assured and matter of fact (he had the air of someone who knew all about it - a shock in itself). There was no hesitation he stated that "well all that clearly needs to come out" and muttered about "what have they been playing at?" and "what's the point in medications that don't work?" - finally, finally someone who had not only treated it before but was more interested in actually trying to solve the problem than giving me pills and hoping I'd shut up. He felt that because of the tracking (sinus tracts) in the area the only sensible course of action is to remove the skin, including sweat glands.
I was then expecting there to be a 3 - 6 month wait for the op - and was totally shocked to discover it would be in less than 3 weeks!! Everything then happened very quickly (the Queen Victoria, I discovered, is a very efficient hospital) I went from not even knowing if I would be offered surgery to having all my pre admission obs, tests and interviews done in the space of 2 hours!! This was fantastic, of course, the only drawback being that I hadn't had time to get my head around the fact that I was actually going to have this fairly major operation, so I didn't really know what questions to ask.
It was a surreal experience - even the nurses taking my blood pressure knew all about HS. It really was as if I'd fought through a fog and found an oasis in the middle of it where everyone understood me.
June 2011 part one - Down Times and Derms...
A few days before I was due to see a dermatologist for the first time my left axilla decided to erupt in one of the worst flares I have had. It's hard to describe the pain of it. I couldn't sleep - every single movement made them rub together and made me want to cry with the pain of it. I SHOULD have phoned the doctor - but past experience told me I would most likely be sent straight to hospital and be in surgery having them removed within a few hours - I didn't want that seeing as I had my long awaited specialist appointment coming up. Continually removing individual lumps does NOTHING to stop more coming up - it does give you relief from the current ones but at a price. The wounds have to be repacked every day for 4 weeks and due to the physical nature of my job that means a month off work every time I have them done - and they can be back in the same spot or nearby before the wounds have even healed.
So, instead of seeing the doc I went to work trying not cry with the pain. While out working I felt the scar from my previous op split open from the pressure of the lump under it - cue lots of gunk. There was nothing I could do to dress or clean it at that point and within an hour I started to feel sick and shaky - when I got home and took my uniform off the side of my breast and my upper arm had gone bright red and was hot to the touch. I had some anti bis left over from a previous prescription so took them in the hope it might control things until I could see the derm.
By the time I arrived at my derm appointment I was about as low as I could get. In pain, feeling sick and not really wanting to be out in public (no bra, no deodorant etc). Now, I know med types don't really like you looking into things on the internet too much, but when you have a condition that few doctors have even heard of what the hell else are you going to do? Thanks to the wonderful HS online community I had heard many experiences and read lots of research and I was pretty certain that long term meds were not for me. I already knew what drugs she would try and give me and had come to the conclusion that they were not the solution I needed - even if they forced my HS into remission it would come back either when I stopped taking them or when I became resistant to them.
Disclaimer: This is not to say that long term meds aren't good for some people, some have great success with them, but I had done a LOT of reading and given the stage I was at and my own dislike of taking anti biotics long term I was convinced I didn't want to go down that road.
Well, enter the derm and I knew straight away that this wasn't going to go my way. She asked what was wrong, I told her I had HS and she replied "Where did you get THAT diagnosis from?" - oh dear, not a good start. I'm afraid I burst into tears as here I was at the absolute end of my tether with the pain feeling at times that I would just like to go to sleep and not wake up again, incredibly fragile and feeling anxious at being out in public and it was immediately apparent from her whole demeanour that she was not giving my suffering the respect I needed her to. Anyway she looked at it and agreed it was definitely HS - she was infact quite shocked that it had caused so much scarring and pitting in just 9 months and remarked that other patients she had seen had taken years to progress to this stage - she even called a second derm in to have a look.
Anyway the whole appointment was pretty horrible and degrading, and when I suggested surgery she practically laughed - it was very obvious that she was not going to entertain the idea. So, I ended up with the 2 pills I was expecting her to try and give me (Clindamycin and Rifampicin) and left feeling pretty hopeless.
The pills made me feel very very sick, and the following week was one of the worst of my life mood wise. I felt disgusting, smelly and depressed - I could find no joy in anything and felt like I didn't belong in such a beautiful, wonderful world as ours.
However, little did the derm know when she scoffed at the idea of surgery that I already had an appointment booked with a plastic surgeon 2 weeks later......
So, instead of seeing the doc I went to work trying not cry with the pain. While out working I felt the scar from my previous op split open from the pressure of the lump under it - cue lots of gunk. There was nothing I could do to dress or clean it at that point and within an hour I started to feel sick and shaky - when I got home and took my uniform off the side of my breast and my upper arm had gone bright red and was hot to the touch. I had some anti bis left over from a previous prescription so took them in the hope it might control things until I could see the derm.
By the time I arrived at my derm appointment I was about as low as I could get. In pain, feeling sick and not really wanting to be out in public (no bra, no deodorant etc). Now, I know med types don't really like you looking into things on the internet too much, but when you have a condition that few doctors have even heard of what the hell else are you going to do? Thanks to the wonderful HS online community I had heard many experiences and read lots of research and I was pretty certain that long term meds were not for me. I already knew what drugs she would try and give me and had come to the conclusion that they were not the solution I needed - even if they forced my HS into remission it would come back either when I stopped taking them or when I became resistant to them.
Disclaimer: This is not to say that long term meds aren't good for some people, some have great success with them, but I had done a LOT of reading and given the stage I was at and my own dislike of taking anti biotics long term I was convinced I didn't want to go down that road.
Well, enter the derm and I knew straight away that this wasn't going to go my way. She asked what was wrong, I told her I had HS and she replied "Where did you get THAT diagnosis from?" - oh dear, not a good start. I'm afraid I burst into tears as here I was at the absolute end of my tether with the pain feeling at times that I would just like to go to sleep and not wake up again, incredibly fragile and feeling anxious at being out in public and it was immediately apparent from her whole demeanour that she was not giving my suffering the respect I needed her to. Anyway she looked at it and agreed it was definitely HS - she was infact quite shocked that it had caused so much scarring and pitting in just 9 months and remarked that other patients she had seen had taken years to progress to this stage - she even called a second derm in to have a look.
Anyway the whole appointment was pretty horrible and degrading, and when I suggested surgery she practically laughed - it was very obvious that she was not going to entertain the idea. So, I ended up with the 2 pills I was expecting her to try and give me (Clindamycin and Rifampicin) and left feeling pretty hopeless.
The pills made me feel very very sick, and the following week was one of the worst of my life mood wise. I felt disgusting, smelly and depressed - I could find no joy in anything and felt like I didn't belong in such a beautiful, wonderful world as ours.
However, little did the derm know when she scoffed at the idea of surgery that I already had an appointment booked with a plastic surgeon 2 weeks later......
Thursday, 30 June 2011
A Little Background...
I first heard the term Hidradenitis Suppurativa in October 2010 - when I had my first emergency surgery to remove 2 excruciatingly painful lumps from my left arm pit. I had had isolated lumps/boils/abscesses call them what you will for years but never thought anything was "wrong" until these two bastards appeared and it was apparent that this wasn't "normal" - less than 4 weeks later I was back in hospital having another one dealt with and my axilla (armpit in laymen's terms) has gone from bad to worse to total war zone since then.
I'm not going to go into the mechanics of the disease because this is not what this blog is for. I will just say that is evil, painful, disgusting and relentless. I'm also not going to go into the period between October 2010 and June 2011 because it would simply be a long list of doctors who didn't know what they were talking about and treatments that didn't work punctuated with hospital visits for emergency surgeries.
In many ways I'm lucky - I got a diagnosis relatively quickly compared to many I have spoken to (some people wait decades to find a doctor who knows what it is) so to go from undiagnosed to under the knife in 9 months is actually pretty impressive in HS terms. I'm also lucky that my only advanced (or Stage 3) area is my left axilla - I have occasional flares on my inner thighs and in my right axilla but nothing like the devastation that has occured in my left.
Wide excision is a dramatic step - but I simply cannot go on living my life at the mercy of my own skin. It is impossible to describe how it makes you feel. Quite apart from the pain there is the drainage (which smells) and the fact I cannot wear a bra when it's flaring, or wear deodorant - so not only does HS bring with it terrible pain but it lowers your confidence and self esteem to the gutter. In short - it's got to go!!!
I'm not going to go into the mechanics of the disease because this is not what this blog is for. I will just say that is evil, painful, disgusting and relentless. I'm also not going to go into the period between October 2010 and June 2011 because it would simply be a long list of doctors who didn't know what they were talking about and treatments that didn't work punctuated with hospital visits for emergency surgeries.
In many ways I'm lucky - I got a diagnosis relatively quickly compared to many I have spoken to (some people wait decades to find a doctor who knows what it is) so to go from undiagnosed to under the knife in 9 months is actually pretty impressive in HS terms. I'm also lucky that my only advanced (or Stage 3) area is my left axilla - I have occasional flares on my inner thighs and in my right axilla but nothing like the devastation that has occured in my left.
Wide excision is a dramatic step - but I simply cannot go on living my life at the mercy of my own skin. It is impossible to describe how it makes you feel. Quite apart from the pain there is the drainage (which smells) and the fact I cannot wear a bra when it's flaring, or wear deodorant - so not only does HS bring with it terrible pain but it lowers your confidence and self esteem to the gutter. In short - it's got to go!!!
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