Thursday 22 December 2011

Emerging from a dark place.......

Regular followers will be aware of my Health problems for the last 5 yrs, and attending various Clinics. Having being diagnosed with Pemphigoid (compromised Immune system) in 2007, along with Biopsies, and Laser treatment, in April 2011 was found to have a 'lump' in neck area....was sent for Ultrasound, CT and MRI Scans, and core Biopsy. this was found to be 'secondary' Cancer, and it had progressed from somewhere else, but where?.....into hospital for another 'investigation' and then found at the base of the tongue.

Our life was turned upside down at the end of May when I was diagnosed with Pharyngeal Squamous Cell Carcinoma (Stage3). Was told I wouldn't survive an Operation, and unable to have Chemotherapy because of other health complications, including Diabetes. Radiation was the only thing on offer for me.
We were due to go on Holiday to Wales the next day, and duly went, but our thoughts were very much in the future, and what was going to happen.

My last Blog entry was the night before being admitted to Hospital to have a PEG(percutaneous gastronomy tube) inserted in my Stomach (July), this was for when swallowing would become difficult......little knowing how soon that would be! (don't know how to get rid of the WHITE bits...sorry)
Next followed two 'fittings' for a head 'Shield' to be used throughout..... I thought this was for protection, BUT, it's so that they can bolt to the Radiation table, as treatment is given. It probably sounds horrendous,but you get used to it, and going every weekday from August 5th-September 23rd. There is usually at least three Radiographers in the room with you, and they are mostly very kind, and you get to know some of them more than others. It's a constant round of Dr, Dieticians,Speech therapist etc...you get a bit weary of it all, as you progress through treatment, but it is neccessary, and they really look after you.
I was determined to 'eat' normally, but couldn't even swallow Water within a few treatments. I have lost almost 3 stones in weight, and the Consultant said the 'feeding tube' is my best friend just now.
The actual Radiotherapy isn't painful, it's what comes after, the skin breaking down etc. was told it would get worse at the end of treatment, and it did!

Allan said I looked like I'd been attacked by a Shark.....(if you can see the dark areas, a little of that remains, but mostly healed....that was quite an ordeal......and now it's what is going on inside. I have had Thrush on the tongue for weeks now, and have had 5 lots of antibiotics, also developed Lymphedema in the neck area (fluid not draining). Going to see someone with that on 28th December, at a specialist clinic.It has been one of the hardest things I have ever had to deal with in my life, but with Allan's help and care, we cope.Still unable to eat solid food, but now managing to swallow Water....I have been back to Clinic on the 5th and 20th December, and the District nurses still come to see me. I was told it will be months before I'm really well, and may never get back to 100% me.Allan keeps me going and encourages me, as I've had some down days recently.
We start the New Year 2nd January with 'review' MRI Scan .
Hope it's not too much information, but some people have been really concerned via letter,cards, email etc.

We can only hope for a better year 2012.

This was  made for me.....a long, long time ago by Donna (D's Designs) don't know if she is still around?

20 comments:

  1. I'm so sorry to hear of all that you have been going through, Aileen but pleased that you have had lots of support to get through it all. NHS staff are often criticised for uncaring attitudes but I think when you are in long term treatment you often find the gems of the profession. Stay strong and I wish you all the best for the coming year.

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  2. Such a lot to go through, Aileen... you are a very strong person, that's for sure. I'm so glad that you have your Allan.
    Take care, and please keep us updated whenever you can, m'dear.
    x

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  3. Oh Aileen I cant begin to imagine,what this has all been like,for you . bless your heart ,and Alan for keeping you positive .I pray the new year brings better health for you ..love Jan xx

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  4. I am so pleased to read a message from you..What a year you certainly have had. You have gone through so much as has Allan,,Bless you both.
    May you be able to enjoy a peaceful Christmas and our prayer is that you will gain strenth as the days passs and can once agin look forward to happier painfree days..
    LOve Sybil x

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  5. Dear Aileen,

    Bless you! You have gone through the mill for sure! Although I have gone through the chemo and the radiotherapy in the past, I am so glad mine was not where yours is. I feel your discomfort and distress. You are such a strong woman! Alan is so caring for you too. Bless him!
    My thoughts and prayers are with you. I wish you a speedy recovery and a healthier New Year. Thank you so much for taking the time to let all your friends know how you are. You are so brave! I am sending you lots of healing thoughts and prayers.
    God bless you both.
    Much love
    Jeanie xxxx

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  6. Sorry I am late with my comment Ailleen,but I haven't been online,until yesterday for five that was all.I feel so sad you have had to go through all you have this year.I myself havn't had a good one health wise,as you well know.Though not what you are going through.I was ill 3weeks up to Christmas,and took the risk of going away to Wales.A suprize booked by Rooster.Got back for the New Year,it was wonderful.MayI wish you and Allan everything you wish yourself for 2012,and I hope everything went well on the 28th.Thinking of you often.Take Care God Bless Kath xx

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  7. It's me Lyn..thanks for your Christmas card and email..I was in England for Xmas..just got back..I wish you all the very best love for 2012..bless your heart..always thinking of you...x

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  8. Aileen, I was so sad to get your Christmas card and read what you're going through. You have tremendous courage and I know that Allan keeps you going too, bless him. Sorry I didn't send cards this year but I've been off work sick for a couple of months with ulcerated legs so I've been in bed a lot. I wish you good luck with the treatment Aileen, if anyone can fight their way out of this it's you. I hope the MRI scan review went well on the 2nd. Saying prayers for you to give you strength to defeat this. xxxx

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  9. Oh Aileen, was so sorry to read all of this today. Thank goodness for Alan who has been your angel through all of this. God bless you both. I am keeping you in my deepest prayers and hoping that things continue to improve. ((((hugs)))) xxoo

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  10. i am so sorry you are having to go through all this,glad you have someone to lean on when things get rough.you tc,in my thoughts,mort x

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  11. Oh my,bless your heart..what an ordeal and such pain you have endured. Saying I am sorry seems so trivial,but please know it is heartfelt. I wish and pray for a full recovery for you. Bless Allan and his tender care.

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  12. Prayers are being said. You are truly an amazingly strong woman! I am so glad you have someone who loves and cares for you. You both are in my prayers!

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  13. Prayers are being said. You are truly an amazingly strong woman! I am so glad you have someone who loves and cares for you. You both are in my prayers!

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  14. sending prayers & love. wishing this new yr brings you health & happiness.

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  15. Stopping by from dear Marie's blog. I'm a fan of Wordsworth and Emily Dickinson, too, and went to the same college as Emily Dickinson. I am keeping you in my prayers!

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  16. Hope that everything is now okay for you, fingers crossed. I didn't have radiotherapy, they have kept that as a 'in case the chemo fails' backup.

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  17. Eileen, just came by to say thanks for visiting my blog. why hav eyou bot been blogging for a while...Hope you are not too poorly
    Love Sybil xx

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  18. I hope you're doing OK Ailen, I just popped in to see if there was an update. xx

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  19. Hello again Aileen,I just called around as Jeannette did to see if there was any any update.I hope all is going well Aileen.I am not online too much nowadays.Too much going on in my life and not all of it good,I am afraid.I did e.maill you a while back and didn't get a reply,so I thought I would write here.I hope all is well.Prayers for your healing.Take Care God Bless Kath xx

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  20. Aileen..just coming to check on you my lovely..I wrote and thanked you for my bday card but never heards back..I pray you are doing okay..

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