HI there Guys

Just thought that I would share with you a great website that I used while I could not speak and which allowed me to have my own webpage so others could get my daily rundown without having to ring around and find out how I was doing. I only wished that I had known about it sooner as it would have been an excellent tool for my family to use while I was in hospital too. It is such a wonderful medium and until the gift of speech is taken away you don't realise how valuable these kind of options are. It is a non profit organisation too who care about people not money so this service is free. The link is www.caringbridge.org if any of you are interested in having a look at mine feel free, but I have not contributed any journal entries since January cause me can talk now :geek:

www.caringbridge.org/ok/kelley

Hope this is helpful for some of you.

Regards, Kelley

Editor: corrected web link error - krishan

Hello Kelley
Just looked at you rads photos and it reminded me how awful an experience it is even though I have my own pics that I occasionally have to look at if there is webpage problem. Don't you think one of the worse things of all is being bolted to that table. It seemed even worse to me to see such a young person as yourself bolted to the bed. As we get older we know our bodies will fail, but to see you on that bed made me cry for you inside.

I hope you are coping with the trauma of it all. As you said in another letter here you are a good actress, but I am convinced that attitude helps us win through.

Thanks Kelley, I found that website and am in the process of making me a page,, it is fun on one hand and quite upsetting on another. Going over all this again and again... It is a very painful thing to talk about at times. Thank you for telling us about it...ALways, Vicki Lynn

Hi Pauline & VIcki Lynn

This is the second time that I have replied, but the first one did not appear so I will try again! Thanks so much for responding & I am sooo glad Vicki that you are going to use this site. It is such a great way for your loved ones to stay up to date with your progress and a great way of expressing your feelings and experiences daily. Please keep us posted with your link when it is up & running.

Pauline yes I absolutely loathed being bolted into that head mould daily & on a few occasions the ray crew had to run in & release me as I had a few panic attacks. They use to play my favourite J.LO cd each day & I would try to focus on happy thoughts and rise aove the claustrophobia! The worst would have to be the initial making of the head mould where I was locked in for an hour....just the thought of it stirs feelings of fear! Also I found the mouth mould pretty tough going as the weeks went on, pretty painful with the ulcers and all.

Yes feeling that my body let me down at a young age has been a challenge..also not once during treatment did I ever see another person under the age of 60, so I felt very alone. Although the Doc's told me that having youth on my side can help with healing etc. I use to be very fit and active so this whole experience has been extremely confusing..I don't fit any of the criteria???...but hey I'm here to complain about it right!!!

I am so happy that I can share this Caringbridge website and maybe help in some way, as I cannot tell you how wonderful it has been for me to join this site and chat with amazing people like yourselves who understand.

Love to you both
Kelley

The mask experience was one that terrified me too. Having it made was like a form of torture as I hate not having air and was worried about suffocation as that dental paste flowed nearer my mouth and nostrils. I whimpered all through the experience asthe paste set whilst trying to be very still. It left me feeling shocked. Nurses saying the worst part is over were partially right. What I hadn't reckoned on was being bolted to the table and then left alone bolted to it during the radiotherapy.

A week after treatment FINISHED at my check up I learnt there was video of the procedure of making the mask and being on the simulater etc. Just no one bothered to mention it. Seeing a video of it would have helped so much mentally.

The phrase in your letter that strikes me is """being very alone""" - I think it dawns on us all at some stage that this is something we can only do alone however many people think they are with you. The aloneness of a cancer diagnosis is beyond description.

Hi Pauline

Yes I understand all that you say about the suffocation part, I also feared that too but it seems that the staff kinda become immune to doing their job & I think sometimes forget that for the patient the experience that we go through is so alienating & that by the time we reach the Ray dept we have already been through so much. I was never informed of any video that shows the procedure???

Unfortunately I have not had the blessing of much family support through my journey but was lucky enough to have them meet me at treatment each day. Between zaps they would run in and hold my hand....but still it is true you are very much alone at this time. I found the whole radiation experience very taxing emotionally, like I was suddenly different to everybody I knew around me.

Everything about 'C' has felt very odd to me, like being out in the deep, deep ocean with waves continually crashing and it feels so scarey because you can never be quite sure which direction that they are going to come at you from??? But still it is instinct to continue treading water with the hope that a boat will pass or land will become visable I think the worst part for me is losing the luxury of peace of mind & the knowledge of what is necessary to survive. I spose I kinda feel robbed of my innocence, like a part of me that has made me 'Kelley' my whole life was taken away & the new me is pretty foreign...like a pair of shoes that just don't fit no matter how hard I convince myself they will. I'm not sure if I sound silly or how well I have explained myself but I hope I have made some sense.

Warm Regards
Kelley ( :

<<Everything about 'C' has felt very odd to me, like being out in the deep, deep ocean with waves continually crashing and it feels so scarey because you can never be quite sure which direction that they are going to come at you from??>>

You explain yourself with great eloquence Kelley. Sadly this really is one of those things that you can only honestly relate to when it touches you as an individual.

I never really knew what an oncology department would be like or the feelings of having no control until I found myself in one having the radiotherapy. It was a bit of a shock to the system being amid fellow cancer patients. It suddenly dawned on me I was one of them as I passed through the chemo area and saw heads covered in kerchiefs and fuzzy regrowths and emaciated bodies and people looking very ill and very alone and very resigned.

Its 2 years since my radiotherapy began on Sept 1. Yesterday at my check up I was told I would definitely have been dead by now if I had not had the radiotherapy. I believe them - I know how ill I felt, but one is on constant alert for symptoms and so I can really relate to your words << I think the worst part for me is losing the luxury of peace of mind & the knowledge >>. Oh for peace of mind and no intrusive doubting thoughts.

Kelley & Pauline, I was just reading your posts. Wow, I gues we all have the same feelings about the MASK. I was terrified. A nurse, laughing at something another nurse had said to her, walked me back into this room. No one but us in there. I asked her what were we doing in there. She, laughing still, said, OH I am going to make your cast mask. Ok, I am thinking, and what is this for. You are so intemidated by all of this that you don't know what to do or to say. What you want to do is run. And what you want to say is HELL NO!. But instead we sit there quitely while they have there backs turned to us. Mixing all this stuff together. I don't know about you two but she offered nothing. I had to ask about everything tho I had no idea what I was asking about. The smell I will never forget. Never. The when I had to lay there until that formed to my face. I have never been closterphobic(spelling) but I certainly was that day and everday thereafter. I still am. I have a lot of hair. A lot. So I had to get a hair cut first before I had the mask made. I hated every single minute I was in that room on that cold table. I used to count to myself so that would calm me down. There were a few times I vomited just thinking about having to go there. But I made it thru it and vowed I would never ever do it again. LOL. That was a joke. Little did I know. Always Vicki Lynn