Since my wife Amy had a Brain bleed, on October 30th 2012 that was caused from a burst vessel within the AVM.We have developed the AVM as our mission – Our mission of awareness of how serious and life changing this is,Our mission to become a survivor and a success of the AVM… and we will beat it.
This is our journey and we are sharing it with you…
As my wife was sent from west suffolk hospital.. Might I add tho, the doctor there was fantastic, he knew what was wrong with my wife very quickly, he then sent her to addenbrooks.
My wife was admitted to G3 ( brain specialist ward) from that they sent my wife to have an angiogram… Was told it would take an hour to do… Well 2 hour later my wife told us that she had all that she can describe as torture… She said the pain was excruciating, causing my wife to feel more than panic..the doctor who was doing the angiogram held my wife hand and with a softened and calm voice, sympathetically said “we have to carry on to find what is wrong” and the doctor was like this all the way through the angiogram. And even reassured my wife after it to.
When my wife returned from recovery, she did look grey, and very unwell, and unable to speak properly. And nurses all rushing round her, pumping fluids and drips in to her… I thought at this point she was going to die. Our children was in the waiting room wanting to see their mum… All I could think about was how can I tell them.This all started when the doctor that diagnosed my wife, wrote on a bit of paper ‘AVM’ and said “go on the Internet to find out what this is”.. The doctor could not even be arsed to explain what an AVM is. Knowing full well that she could not even spell her own name due to the bleed, let alone go surfing on the net. Shocked, when she told me was not even close to words I actually used, but that’s the closest one that I’m gonna use.For a whole week, my wife was bed ridden, she dare not cough or sneeze without the fear of the AVM bursting again… She had to lay still and calm… You try and do that on the best of days, see how long you last without wanting a wee, or a fag..
For that whole week the nurses and doctors in addenbrooks said she will be having an operation to remove the AVM… With the added fear of if she moved out of bed, or tried to stand she will have a stroke… As she was in a critically dangerous condition.Out the blue.. A new doctor.. Well new doctors to us, told my wife she
“could go for a walk.. And in fact you can go home”, and “and we will have you back within a week to have your opporation” .
Shocked, relieved, and excited, but also very nervous by the doctors decision… As we still did not know what the true depth of her condition was.
Scared and confused – we was close to being petrified as Amy is now a walking time bomb.
EACH DAY WE LIVED IN FEAR!
When we got home..
Each day we both wake up, and grateful for the whole day.. But living with fear of
“we can’t do that because of the AVM”
simple things like going swimming, or going for a social drink, even having a passionate night. My wife, if she want to go any where, she does need to have some one with her, firstly for her piece of mind.. Literally, and secondly, for a safety net.
A week had past… And we still had not received a letter or call from addenbrooks, my wife decided to call them as both of us have been getting anxious due to that doctor saying the op will done within a week. The conversation was this..
” are you available over Christmas ” that question was to my wife… And the other part of the conversation was ” your condition is very serious and we need two neuro surgeons to get together and plan your operation, and that could be in February”.
We was both relieved a little bit, as we have a nearly possible date for the op, but also very confused, very serious condition, but let our of hospital, and was supposed to have the op within a week of leaving the hospital. All we could think was, what the fuck was going on.Still being very cautious of each day, making sure that everything and everyone in our house is in a calm environment… With. 3 young children, that’s a massive challenge by it self..let alone knowing if my wife blood pressure raised, it could kill her. And that was all we thought about.
As Christmas was apon us too, we all had an awesome day, but still had the fear of we can’t do this because my wife can die.. By the new year.We have had a lot of people come and see us, but not realizing the seriousness of our condition, as all of them said ” it can’t be that bad, can it”… All I’m thinking is, fuck you.. This ain’t a common cold, or a fucking verocca that needs removing.. Even tho we both have explained what an AVM is, and also posted it on my blog, and also on face book..
Also have had people come round while they have been ill, we’ll I say ill, they have a cold… And they say ” I fell like I’m dieing”… How fucking insensitive, knowing full well if my wife cought that cold, it could actually kill her..
So yes.. It is that serious.
We really did find out who friends was. During this period. But we with all our gratitude does go out to the one that did support us. And many thanks to you.
But we soon found that we have had no support from anyone…
Sure, friends have been there and same with my wife’s family, but not in a supporting way… Apart from her mother who totally understands her in every way.We both have been looking on the Internet for AVM support groups, and advice… Yes there was a lot of advice, but not really any support. The support we both are looking for was to help us get out frustration of living with the AVM, knowing what we can do on a daily basis.. And what to avoided. Well we signed up to one group, and it took many many days to get back to us, and it was. Not really supporting. Oh well. Search more then.My wife had been feeling dizzy, and unable to walk long distance, also this particular day my wife had been sick, her head was throbbing, and was bearly unable to move, she was rushed back in to west Suffolk hospital… The doctors done their obs, and kept my wife there for several hours.. The out come was her blood pressure was raised, causing pressure on her brain. When my wife returned home, I made a poster for the front door.. Stating that my wife is really unwell, please do not knock. Many thanks for being understanding…. Well that did not work people still knocked on our door.. Shit..
The doctor at west Suffolk hospital was very surprised to hear that my wife has not had her opporation yet.. The said the will speak to addenbrooks to see if they can bring it forward… Still had no reply for addenbrooks… Our faith is decreasing fast.A few days later after my wife went to the hospital… She had to go and see her Genaral Doctor.. My wife sat down, and before she could speak… The doctors said ” your stressed” with that my wife walked out, and re arranged another appointment to see another doctor.. To which we both went to see, and stated by the doctor we have very right to complain and we did.
But we still did not get any answers from the doctor regarding my wife’s AVM.How we are today, is this.. We are channeling our focus into projects at home, this is helping us with by distracting of our thoughts of the AVM and anxiousness of the lack of any support from the doctors at addenbrooks and her own doctors, and disappointment from some of the people that have been around us.
We work well as a family unit. And we want to keep that unit as one.Both of our roles in life rotates a round helping people.. Professional and pleasure.. And we have never expected any help back as we love what we do.. But just a little understanding while we are going through this tough. Time.. Just having one person who will listen, and not turn the conversation on them selves… Is that to much to really ask for..I am delighted on how my wife has been, we are very positive people anyway, and she has been particularly positive through out this tense period… Don’t get me wrong, we do have some really negative days, and she has every reason to have them too, but we work through them and focus on the positive ones… And Knowing our condition, it’s being really hard to relate to anyone in either of our positive and negative days… It is tough… But we get on with it.. We have to… Our children have been brilliant though this…and we have not let this effect their life style at all, we carried on as normal for them…they are happy and then we are happy.. We have
Always been like that and not gonna change it because of an AVM.our whole out look in life has completely changed, we don’t live to work, or wait for the weekend, but appreciate each and every day that comes, and deffenitly try to make the best of each one too.
THE DAY IS COMING!
We are now at the end of January.. The operation is booked in for march 6th… And I’m pretty sure that the fears, anxiousness, and tensions will be building to great high As each day now comes forth.. After the opperation we dont know how long recoverery will take and It also does not help that the after care can be for a lengthly period, as she is at high risk of having a stroke too.
It’s now the day before valentines day… And as the pre assessment for the op is approaching us fast… But each day seems so slow….as we are dreading that day. My wife s getting more and more tired, with a constant buzzing in her ears, chronic head aches are getting more frequent, along side with them she is also feeling sick…Feels dizzy when she stands. When she has the motivation to do anything… It only lasts a few hours, tops, then the tiredness kicks in and quite suddenly. We have both noticed a personality change too, how the highs and lows can dramatically change quickly. We can now say that each day is tough.My wife had the pre assessment for the operation yesterday..she felt a bit more at ease after the surgeons had a lengthly chat with her… Confirming all the migraines and dizzynesss and sickness she has lived with most of her life are to do with the avm…. Reassuring her that she was mis diagnosed with any depression and anxiety as her on gp had put it down to… Made my wife feel so much better.
THEY CANCELED FOR THE FORTH TIME, ARRGGG !
As the build up of anxiety and stress hits an all time high, my wife’s operation to remove the avm from her brain in less then 24 hours… We are both double checking every plan we have placed, like having family looking after kids while my wife in hospital and I’m by her side, getting time all the house tidy, and the biggest one, keeping us occupied while we waiting for time to pass.
It’s now less then 12 hours to go, both are bellys are rumbling with hundreds of butterfly’s, we then get a telephone call from addenbrooks hospital, just to tell us they have canceled the operation and for my wife to call back in the morning….. We really can’t put in words what we are feeling right now… But anger and disoppointment is just two of the emotions.
The following morning, both of us are full of disappointment as we made at least 25 calls to addenbrooks hospital, and each call we was palmed of with ” I’m not the person that deals with that, give this number a call”. I had also contacted PALS in addenbrooks their response to us was ” goto the website and email us with your issue”.. Great service from all addenbrooks NOT !!!
In the end I left a firm message with the secretary of one of the neuro surgeons stating how my wife is feeling, mentally, physically and painfully..
The following morning, my wife had called addenbrooks again, and finally got another date for surgery.. 5th April 2013 , fingers crossed they don’t cancel for the forth time.
This is our story - please look out for the next post to see what happens with the opporation