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    rachael67 posted:
    I just read your post below, and wanted to, first of all, welcome you to the community! Tho' you have felt alone and not able to interact with those who might share your feelings of being overwhelmed and lonely and unhappy, now you are a part of a large, caring group who will be there to hold your hand and to listen!!

    As to feeling down or sorry for yourself, let me assure you that is OKAY!!!! Tears help wash away the bad feelings that tend to visit us every once in awhile! It's okay to cry and to scream and to curse the fates! Honestly, we all do this from time to time!! (And it isn't always because of cancer...We vent and have pity parties from all sorts of bad hands we are dealt!) The important thing is not feel guilty about feeling sad! And equally important is to limit the time for your pity party!! Feeling sorry for your self only is effective when taken in small doses...Any more than that and it becomes toxic!!

    If you find that you are more often sad than not sad...Or going along in neutral... it is time to let your medical team know about this! You may need an RX for some anti-anxiety drugs. You needn't be on them forever, but they certainly can help anyone thru a bad period. Many of us have been helped and feel much better for doing so.

    So, please come back and share this journey with us....We've been there/done that and do share much! It helps to be with others....You will be amazed at how often we laugh!! And you will too!!!

    There are only two ways to live your life.
    One is as though nothing is a miracle.
    The other is as though everything is a miracle."

    Albert Einstein
    supergrangran responded:
    Hi Rachel

    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.

    Hope all is ok with you.

    Lots of love
    rachael67 replied to supergrangran's response:
    Aw, Christine, it appears you have had few opportunities to laugh since last you posted! Just when you get a handle on one thing, another rears its ugly head! I am so sorry that you have to face so many challenges! Sometimes life just isn't fair!! (You have heard the old joke ~more ironic than funny!...If you wish to hear God laugh, tell Him your plans!!)

    Do you have folks around you that you could talk with or with whom you could do things (non-Medical for a change!!)? Are you involved with any activities which you do just for enjoyment?

    Gal, you need and DESERVE a break!!

    And you need support! Do you go to a church or synagogue? Is there a cancer support group? Or a depression support group? Please find a therapist or physician who really listens and whom you feel cares.

    Check with patient advocates, etc. to see if you might be eligible for some financial support too.

    And come back here often...It helps to share with others. In fact, go shopping for other online groups also who might offer a hand to hold when you need it!

    Meanwhile, please know you are in my heart and thoughts.

    Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
    jenna291 replied to rachael67's response:
    Hi Christine,
    Well I will be hoping and praying that the lump is nothing more than scar tissue. I know what you mean about paying the bills. Just want to pay them and live a good, clean and healthy life without so many darn curve balls!
    I hope you have someone to talk to, just to vent. It really does help.
    I am sending you a giant bouquet of flowers and wishing you all the best. Please let us know how you make out at the doctors.

    best ~ Jenna
    supergrangran replied to rachael67's response:
    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 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!!!

    God Bless XX
    supergrangran replied to jenna291's response:
    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.

    Hope all is well with you...

    Love and blessings

    rachael67 replied to supergrangran's response:
    You pleased me so by saying I had provided a bit of humor!! One of God's best medicines...That and the sound of a child's giggles!!!

    Speaking of the Almighty, the first follow-up I want to offer is for heaven's sake (quite literally!!) don't be so hard on God or on you!!! You have every right to be discouraged and/or frustrated despite the fact your regiment seems to have been successful! You have faced so many challenges and have bravely dealt with one and all! Your frustration doesn't reflect lack of appreciation, but merely reflects your humanity! Even Mother Teresa once stated that, tho' she appreciated the fact that God would never give her more than she could handle, she dearly wished that He didn't trust her quite so much!!!

    And the Almighty isn't nearly as thin-skinned as we often fear! He can take a lot that we toss in His direction...After all, is He not Love?! Give Him some credit and don't fear letting Him know you disagree with the path He has you walking or that you might question His decisions, etc. He's pretty strong you know...He is GOD!!

    Incidentally, any of His representatives such as your priest will also be more than understanding...unless they are poops!! And those you don't have to even give a second thought to! As we say about medical conditions, seek a 2nd opinion!! Okay??!!

    How wonderful that you work with sign language and the deaf, etc. Using that talent in church always made me think that one was praying twice...with words and with signs!!

    (Although I am addressing you here with many religious references, please know that I don't always agree with organized religions and frequently have many doubts...I say that for our members who might read this and feel turned off because of that. I have come to appreciate that there is not a single path to living a good life, a full and loving life...If the path we choose reflects our humanity and our fellowship with all things on this sweet earth, I cannot but believe we are all going in the same direction!)

    Please take care of yourself, continue to find others who offer you support when times are tough, and may your own efforts to ease the trials of others continue as well!

    Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
    supergrangran replied to rachael67's response:
    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.

    God Bless XXX
    supergrangran replied to supergrangran's response:
    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.

    Christine XX
    rachael67 replied to supergrangran's response:
    Hope you were able to get some rest!

    A little suggestion? As you know this can and has happened where you cannot tell what the trouble is, might it not be a good idea to keep a note which you can, at times like that explaining the situation can then pull it out so that you don't have to deal with dummies and suffer for so long?!

    Actually, hope it NEVER happens again!!

    Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
    supergrangran replied to rachael67's response:
    Hi Rachael

    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 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

    God Bless XXX
    rachael67 replied to supergrangran's response:
    What a good report...And, my Friend, those are tears of relief...well-deserved to be sure!! One can only stay tightly wound for so long...When released, much like a very tense spring or a fully inflated balloon, anything and everything can be expected! Don't be surprised if at work you find yourself with a silly smile that just won't disappear!!! Consider it a rainbow following the "showers"!!

    We're celebrating big time for and with you!!

    Many blessings.
    Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!

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