Thursday, 7 July 2011

Trying to cope with the latest news, an update as promised.

Did have the biopsies on the 28th......overnight stay. It was my 5th in 12 months. Was told, that the ENT People were in the theatre next door to where I was having Surgery, so both were going to 'take a look'. The Consultants came round next day, and was informed they had found a 'thickening' at the base of the tongue. A specialist Nurse came to see me also, she gave me her card with 'phone number, and her email address.
Was discharged on the 29th, but within 15 mins of getting home, this Nurse phoned, and said they were trying to get the results of the Biopsies by Monday 4th July, and to be at the Clinic, unless I heard from them.

I was called in to the Clinic, and was met with several Consultants, who shook my hand , and introduced themselves. Was asked question after question, about the Pemphigoid, which I have had for over 5yrs. then this Consultant started talking in depth, stating he was fron Weston Park....which is the Sheffield Cancer Hospital.

He didn't beat about the bush, stating that I had Cancer which was inoperable, they would have to remove the Tongue,Voicebox etc., and I wouldn't survive the Operation. (Sorry if it's too much information) I'm unable to have Chemotherapy, because of the condition I already have (Immune System).I asked 'how long'...if i didn't have the suggested treatment, was told a matter of months, and I would become so very unwell, with glands swelling etc...... I'm to have 7 weeks of Radiotherapy, 5 days a week, with weekends free. I will become very unwell, unable to eat etc. so I am having a PEG fitted in my stomach, and a 'Mask' will be made for my Radiation treatment.I will visit each day, unless I become too unwell to be at Home.This is a bit rushed, as I have to be at the Dental Hospital this afternoon, for teeth to be checked out,before Radiation can start. It all should be taking place within the next 2/3 weeks. I am frightened because the side effects of Radiation, soreness,sickness, and eventual PAIN. I am uncomfortable everyday to some degree, so don't know how I will cope, but so many have before me, and will after me.

We are in shock just now, so this is just a brief update, to anyone who still follows my Blog.

Along with all this Allan's Mum is in Hospital, having a triple Heart Bypass on 8th July.....a lot for him to cope with just now.
Allan will probably 'move in' with me for a while, as the treatment starts.....
Thanks for taking the time to read, and will update soon...



  1. Well Aileen,shocked iasn't the word,it is such a lot to take in for sure.I myself am having probs just now.Only came online to check my e. mails out,when I found yours.Been in and out of bed since last Thursday myself.I have had problems getting to your blog, as I am running my AOL through IE now,and taking in all that is new, I cannot find half of what I want on the new AOL.Guess I have been on the old one to long.I did write to you snail mail, for when you got back from your holiday.I hope you recieved it.Know you will be in my prayers always and I will write again, as soon as poss.I too am backward and forward this week at the docs.Been twice already and to go again in the morning.Prayers too for Allans Mum and Allan of course having to cope with all this.Take Care God Bless Kath xx

  2. Aileen..I like Kath am shocked..I don't really know what to say except I am so terribly sorry my love and I wish I knew what to else to say..we have been mates for ages through AO Hell and I am gutted..I will continue to keep you and Allan and everyone in my prayers and please know I care very much what happens to you...I can't do much from over here but if you ever want to me..big hugs..Lyn

  3. lyn sent me over don't know me, but due to having lost my mother to cancer 40 years ago when i was 19, the BIG C is a personal monster to me. my heartfelt prayers and thoughts are with you as you go through this and i hope you will come through with flying colors. keep lyn posted so that she might keep us posted on CALL FOR SUPPORT. may your future be full of sunshine and hope and lots of love and good health and happiness. hugs.

  4. Aileen, Marie from the old AOL Journal days. I am so sorry to read this and in shock like everyone else. I don't really know what to say except that you have my deepest heartfelt prayers and love. Praying for miracles here, which happen every day. (((((hugs)))))

  5. just seen message from Lyn on call for support on Facebook,just to say i wish you the very my thoughts,take care,mort.

  6. I found your blog via Call For Support. You don't know me, Aileen. I wanted to let you know that you will be in my prayers over the coming days and months. I am so sorry, honey. So sorry. Val

  7. came over via Lyn.. just letting you know you're in my thoughts and prayers~ wishing you the best!

  8. Aileen I'm here via Call To Support. I'm so sorry about your DX!! Is it possible for your Drs to consult with a radiation oncologist by the name of Dr Harry Quan, of Johns Hopkins? He's a leader here in the field of Head/Neck oncology radiation & treated my husband. Please contact me if you need more info! All the best, Maire

  9. Hi Aileen once again I write,in here.I put a message on facebook alerting Lyn,as I had checked out your blog a couple of times and noticed no comments but my first one.I am so happy Lyn found my message,as like I said blogger has been a pain of late and people have had difficulties.I myself didn't know how to alert the call for support blog or I would have done it myself.Nor am I realy up on facebook as yet.I hope you don't mind that I didi this,but to me all prayers help.I hope your weekend has been a decent one considering,and I pray Allans mum has overcome her big op with much success.Know you are all in mine and Roosters prayers always.I havn't been online since Friday,and that was only an update on myself..So take Care love, keep that fighting spirit up and I will call in again soon.Sorry I am having to comment anonymous.Love Kath xx

  10. Hi hon,
    Hoping you remember me from "Hey Let's Chat" I am so very sorry to hear this latest news. I will be praying for you, hon. If it were possible I'd come visit, if only to make you laugh. :) People tell me that I have the ability to do that. Take care. Know you are on many prayer lists. Love ya.

  11. Oh Aileen... I'm so sorry to hear your news, and to think of all that you will go through in the coming months. I will keep you in my thoughts m'dear. Please let us know how you are doing, when you can.

  12. My dear Aileen,
    I have only just come on line today after being off for a wee while.
    Your news of your results are shocking! I can imagine how you and Allan are feeling. Especially re- his family worries too.
    I hope and pray that you will be given the best treatment possible and that you insist on following up Maire's helpful suggestion. You never know my friend.
    My thoughts and prayers are with you and Allan.
    god bless you both!
    Jeanie xx

  13. Hi..came by way of Guido on Facebook. I am so sorry to hear your health problems. My BIL just went through the same thing, they told him stage four cancer of the mouth. My sister and I tried to fatten him up a bit (which did work) before he started the chem/radiation treatments. Actually about two weeks after treatment started was the worst for's three months now and he is feeling better. His Pet scan showed the tumor free of cancer..of course he has to be checked every couple of months now. I hope that you have the same luck with the treatments and am saying a prayer for you dear....

  14. Thinking of you ... lots of love... Allan xx

  15. Aileen, You and husband are in my prayers. This is raven from rebuketheworld...I will pray everynight!!! Iam very sorry!!! Its such a difficult time to go through this phase but try and hope...hold onto it...!


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