Wee update last 3 times I went to hospital in am ambulance with breathing problems from the dystonia I actually passed out completely...the doctors in the emergency room seem to have some clout how they managed it I dont know but I am very grateful they got me an emergency appointment with the Neurologist....in short I left the emergency room at 5.45am went home and slept for a couple pf hours...should have been at the hospital for the Nuero doc at 9.30am but didnt waken till 9.40am...threw myself together and got to the hospital half an hour later than I should have thinking they are just going to tell me the doctor wont see me me because I am too late...and they took me straight in to see him...wee chat and he put me on the tablet form of the drugs that I get through IV when I am taken in by ambulance so result!!!
Now today I went to see the breast consultant to get the results of the lump recent found and it is scar tissue it is still there and I have to keep a check on it and if it changes at all I am to go back...but its still a result!!
All is looking good and here comes the silly bit I cant stop crying I know they are happy tears but they just keep rolling I dont even know what I am crying about I am recognising this past while has been scary but I could not afford to go down that road as I on one occasion only put my head under the duvet and it was so hard to get back up that I made a promise to myself that I would not allow this to happen again.
I feel so exhausted but at the same time It has been a long time since I could say I feel so well...this is crazy stuff!!
Think I just parked myself in hormone central and the train hasnt arrived yet to take me home back to my old life and hand me back my confidence and make it OK to start and plan things to do again.
Hope all is well with you and thank you so much for the support its good to rant...I do hope my eyes settle down after a good nights sleep because I look like I have been crying for hours.....ermmm actually I have but dont want to look like this for work tomorrow
In need of a wee moan....last night I was off to hospital again for treatment with the dystonia and it affects my breathing quite badly and my vocal cords!
Anyway to get to the point took meds at 10pm then took emergrncy care meds at 12 and by half 12 I recognised that I was in trouble so unlock front door and open it....this is the routine because when it gets going it deteriorates quickly and the last time I waited until the woman on the phone told me to open the door I fell and brought down curtains and plants etc so now if I think there is the remote possibility of needing to go I open the door and then get myself to a safe place/chair..
Paramedic arrived and asked whats the problem...I am gagging on a spasm in my throat can breathe and cant speak so he repeats the question 2/3 times and eventually I answer...his response...I have dystonia in my neck and dont have this carry on...cant answer him cant breathe...spasm release I then tell him My dystonia started in my neck and then travelled down the way so just you stand there staring at me and take notes because this could be you in 6 months!!
Why are you choking...why are you choking whyyyy arrrre youuuu choking....spasm releases and I repeat I have dystonia at this point the ambulance arrived and took over saying to him she needs to get to hospital now these spasms in the throat are lasting too long we need to move.
I was absolutely raging, mortified andcould not believe the ignorance. Got to hospital the ambulance giys counted my throat spasms and ran a commentary all the way in that spasm lasted 45 secs....took a cloth and wiped the seat from my face....its like a workout at the gym
Got to the hospital and 2 nurses that I know from previous visits said to the ambulance guys we'll take over from here christine is well know she just needs her IV injection and she will be fine. ...they stripped my top because of how wet with sweat and I was really well taken care of but that paramedic I can not believe the behaviour of him
Hope all is well I am hoping for a good nights sleep tonight went to work on about 4 hours sleep today.
I absolutely agree with you there are many ways to study for a university degree and all degrees have the same credit when we get there and we graduate.....therefore there are many ways to live a good life and to be good to the people around you and get back the love that you give out.
I am just so happy to be feeling better there are some things you dont want your nearest and dearest knowing until you are ready to tell them and the guilt is a ton weight gone so now I am finding the path a wee bit easier to walk.
I thank and hug every one that visits this site and shares what they have to offer I would be in a totally different place without this site of that I am sure.
Love and hugs to us all and many blessings for an easier path where ever that leads.
Thank you so much It has been a tough year and I am carrying so much guilt for not being grateful for my life but I am feeling better now things are getting more stable for me...It actually feels good to feel safe enough to say I feel so guilty!
I am hoping now that I can say I feel so guilty that I can deal with the guilt...This is like secret life you are only safe to be your self on sites like this and when you turn off the computer you have to stand in line...not a cancer patient any more, grateful for the life that chemo and radiotherapy has given you because you are not dead, work and pay the bills without colleagues knowing what is going on with you and so it goes on and on and on.
Rachel you have made me laugh for the first time in ages I love the ...if you want to hear God laugh tell him your plans....I am in mass every sunday in life and I actually sign mass for deaf people so I am quite involved with the church I have been too scared to tell anyone how I was feeling so I think actually getting it out there has helped...I also attend a Novena to St Perigrin who is the patron Saint of cancer patients once a month and there are deaf people there as well so I sign that mass as well.
I am also involved in a small project....basically looking for hearing people to meet deaf people half way in their place of worship which actually means I teach the hearing congregation for 5 mins before mass starts and they are now signing most of mass...it is amazing the difference it has made to deaf people and the atmosphere in mass gives me goose bumps. we go on holiday and we learn hello thank you goodbye at least but you stand in the same room as a deaf person and they are invisible through the problem of communication...I have a passion for this you may guess!
I have carried so much guilt these past weeks and months for not being grateful for my life after all the work my medical team did to get me through cancer and then dystonia was so hard to get any kind of help for I ended up going to casualty and they got me the help....apparently if you attend casualty for so many times a year (2 I am told) and at that point in time I had attended 5 times in 6 weeks 2 of them being within 36 hours.
In short things are more stable for me now and I now just have to ditch the guilt...I could not speak to my priest I could not bear for him to think bad of me and I know this is crazy but I just closed down until I came back on this site. I am still having my moments but I get a break in between them now.
Thank you so much for the love and support from this site its like having an extended family that really does understand you.
I got my report in from the works Doctor and it was actually in my favour and stated that I am covered by the disability laws but I have a review of my absence...5 times in 2 years has earned me a disciplinary action so I await the outcome and can only hope that it does not send the dystonia off the wall again as the date gets closer....last time hospital 5 days in a row before the appointment after midnight meaning that I worked on about 3 hours a nights sleep.
I can only work on not getting so wound up about illness being a fault that can lose you your job!!!
Its been a while since I have been on the site so I thought I give a little update...I am getting a lump checked out which I think is just going to be scar related. I also have been diagnosed with dystonia which is a movement disorder and it has been a tough year. Treatment for this is a ride in an ambulance because it affects the ability to breathe and then they put a cannula in my arm and give me procylidine and diazapam by IV. This settles the spasms and then it is a taxi home. It cost me a fortune - £100 in taxi fares before the Doctors organised something that meant i could stay at home and take a tablet to manage it. So safe to say life has been quite a challenge. I then had 2 weeks off work due to the dystonia affecting my spine and I was hospitalised after this. This earned me an appointment with Occupational health and the aftermath of this was that I was traumatised by the questioning not least because the thing he was most interested in was the canuala marks down my arm...I had been in hospital 5 nights in a row and then with 3 hours sleep I went to work. Stress affects dystonia quite badly.
So I plough on hoping to be able to continue to work to pay my mortgage/bills and in september I find out if the lump in my breast is scar tissue or if something needs to be done. I feel almost numb and have felt this way for a while and I have a feeling like it would be ok if something happened and I died from it. The Doctor put me on amitriptaline and it made me feel suicidal so I stopped taking this after 3 days and I feel that I am still recovering from those feelings. I am more motivated to care for myself but the situation at work has really knocked me back.
I am taking one day at a time and wish more than anything that I could retire or go part time at work I think that would help.
Thank you for your reply tell me more about yourself I am nine years in december away from cancer I am doing ok at the minute but now have dystonia a movement disorder Istill manage to work full time but it is very tiring
I am feeling a bit calmer now I have ranted about how inappropriate that Doctor was as he at the end of the day does not make the decisions it is done at a team meeting therefore he should have kept his thoughts for the team meeting.
Also I have gotten over the shock of the fact they even wanted to check a different area of the breast to the one that i was complaining about and now.....I am were I always am when I have a bad day.........for today I do not have cancer but I do have a life which may well be more challenging these days with the dystonia but a life I do have and for that I am grateful especially every time I look at my angel of a grand daughter she makes me so happy with her little ways (3 yrs old) she visited yesterday and i was mesmerised by her as was able to peddle my exercise bike and played on it for ages. She can not even reach the peddles sitting down so she peddles standing up at the age of 3!!!
Any way I will keep you posted and I am so sorry to hear about the bone problems those injections sound awful...dystonia as bad as it gets at least comes and goes but the best bit is when you go to the clinic and there are more dystonia patients we all sit in a row of seats waiting to be called men and women and we each have our own mode of twitching and twisting and grunting with the pain. Then in the middle of all this some one will pass a comment like are you one of us! and then you cant help but laugh I have never met a more social-able group of people in my life other than us of course!!!
Wee update!! I have just returned from the hospital I got a cancellation appointment and took it so the deed is done....mammogram and ultra sound.
The outcome was that some thing has shown up behind the original scar material and the Radiographer said it is not a definitive tumour but could not say without a biopsy if it is the cancer returned or if it is something else and I need to go to a pain clinic.
So I feel that I am no further forward and I also feel that it was and is almost a roll of the dice in his attitude and can cancer really be something dealt with on the roll of a dice....in short this has really unsettled me.
My clinic appointment is 29th May so feels like a long wait.
I think this is a bit scary but only because of the Radiographers attitude...first time around it was bump bump bump and the job was done and dusted...I felt guided and at times dragged along the road to recovery but at all times I never got the could be could be not attitude form an NHS member of staff.
OH THIS IS A NIGHTMARE SOME ONE WAKE ME UP AND TELL ME ITS TIME TO GO TO WORK PLEASE!!!!!
That choc was well needed today thank you!!! and the angels wings were absolutely there........
I was at the neurology clinic today getting the dystonia check up and they took some blood tests......will check it for genetic problems but also and quite intriguing they took a blood test to see if there is a connection to the breast cancer. I am not quite sure what they meant like are they talking about it being cancer or are they talking about it being related to the side effects of the cancer treatment. ...........
I would like to know if anyone else has had this experience of cancer giving you a neurological condition that you now have to live with.
Thank you so much for the support I am feeling so much better knowing that I am not alone and it is good to keep your eye on the light when things start to look a bit dark