I so want to post, but feel quite unable to inflict the horror of this nightmare on those of you suffering and recovering from this bloody disease.I read the forum every day and thank god for the success stories and the continued invaluable support of the man who has become my private cancer buddy who you all know as dancingwithroses.Alan ... thankyou.

all my love to you all

liz

Liz,
I really don't think you should hold back at all! The sad struggle you and Rob are going through is of equal importance to the success stories on here. & if they make one person out there take notice & see a doctor for whatever reason then it wont all be in vain.
People need to hear the bad to apreciate the good.
People need to understand and be aware.
& most importantly of all...
We all care about you and have followed you through this time. & cryed for you. & laughed with you. & we don't want you to feel you have to spare us.
We're all here if you want to let it out.
Thinking of you both,
Michelle

Liz
I wanted to reply to your previous posts just to offer support but just couldn't find the right words.Chelle has summed it up so well there is little more to add.There are many people here who have followed your story and empathise with what you are going through.Please feel free to 'talk'to us.
Take care
Sheila

Liz, we are all here for you, we have been worried about both of you and we want to be with you to see this awful thing through.

Below are some entries on my cancer blog diary that i write every night It seems easier to write on the oral cancer foundation as i dont feel quite so personally connected to the vast membership there as i do to our very cosy group .If anyone wants to read the whole thing go to
Oralcancerfoundation.org topic -Cancer Blogs



No one can ever know how they will feel until they are faced with the prospect of such a horrific end to a young unfulfilled life.I firmly believed that i would be strong enough to let him go but inevitably i am hanging on to him for grimm death and dont ever want to let him go.I foolishly in the heat of an emotional moment made him a promise i was never going to be able to keep and now i must suffer the consequences and live with the memory of the desperation in his face.
Alan you have nothing to apologise for at all you have always been the voice of reason and sound guidance for me throughout this ordeal which would surely have been impossible on my own.The caring and emotional salve of the people on this site make every days end more bearable and renews my spirit for the day to come.

Today i arrived at 9.00am to find him sitting in the garden in the rain.He seems weaker now and i noticed his hair was unwashed.I asked him why and he said he was waiting for me to help him,so we toddled off to his room and i took my shoes and socks of rolled up my trousers and jumped in the wet room with him.I showered him shaved him and washed his hair then rubbed him dry and helped him get dressed.He felt better and i felt very needed so it was a mutually beneficial experience,that had us both dissolved in childish giggles.
We talked a lot about our conversation of the day before and he said his personal nurse had spent some time talking to about what had been said and explaining all the emotional and legal reasons why it was not possible to hasten his end but offered him some options on how it would be managed.
Th medical director came to see us and talked right through robs condition and how it was being manged and how he felt about being in the hospice,then he offered rob some options.
He concluded that rob would prefer to be more sedated than he is at present so he is not so horribly aware of whatis happening to him but was not yet ready to be sedated to a level of permanent sleep.

They started him on valium three times a day and are going to see where that puts him .He is also to have oromorph whenever the pain reaches more than 2 on the 1-10 pain scale.
He had his first dose at 1pm and was sound asleep by 1.15.He spenta good three hours in his chair dozing comfortably.

On the family front his poor sister is distraught at the news that her husband who is at their home in portugal has contracted Viral hepatitis type A and is not well at all.After much soul searching she has decided to fly home on thursday and it is tearing her apart.I will miss her badly as she brings me lunch every day an takes amber home and walks and feeds her.This allows me to stay at the hospice as long as i want to.
On Saturday my niece is to be married in worcester, a county in england that is at present under 4 feet of water.Her mother is having a complete breakdown and my brother is flying home from ahbu dhabi today and has no idea of the situation he is walking in to.I badly want to go to the wedding as my mum and my children will be thereand i will not see my brother again for two years when he goes back next tuesday.I just cannot make that decision until the last minute as i cannot risk not being there for rob at the end.

his morning i woke up with a really sore throat and now i am full of the cold.Just what i need,so iam going to bed with honey and lemon and a dose of hot brandy,and recharge my batteries for whatever tomorrow will bring.

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Liz in the UK
Wife of Robin aged 44 Dx 8th December 2006 SCC T1N2cM0 Partial Glossectomy,Bilateral radical neck dissection.IMRTx30,Recurrence and lung invasion 4th July 2007.All hope is gone but our faith stays strong.

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Posts: 278 | From: YORKSHIRE UK | Registered: Feb 2007 | IP: Logged



Cookey
"Above & Beyond" Member (200+ posts)
Member # 3983

posted July 24, 2007 22:29
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Another day dawns and with it the anticipation of how things will be at the hospice. Arrived at 9.30 to find him in dark and desolate mood again although happy that the sun is shining at last. Pain levels were very high from 6.ooam and he was on his third dose of Oromorph by 10.00am.The Valium has left him feeling very hung over so he missed this morning’s dose. The dressing is not brilliant and causing him a great deal of distress but his key nurse Jane is on duty and she soon gets things sorted out. I cried a lot after I got here sitting in his room while he was outside and Jane came and talked to me. At times the sheer enormity of what is to come just overwhelms me.I have a very heavy head cold just to add to the mix and I feel awful, taking lemsip and ibuprofen every 4 hours and feeling well and truly sorry for myself.
Robins sister has booked her flight home and got the good news today that she has been successful in getting their mother into a care facility(she has had alzheimers for 6 years),so this takes enormous pressure off the family,and lets them deal with losing Rob without the distress of their very confused mother.My brother rung me from the airport last night while he was waiting for his flight home for his daughters wedding,he seems to have settled in well to life in the UAE, and thinks he and his wife are going to like it.
The doctors have reviewed robs pain medication again and are starting him on a diamorphine syringe driver with oromorph for backup.They have stopped the patches because they just cant find any flesh to stick them too anymore,his pain control hasn’t been good today.They are also putting a patch behind his ear for the mucous.I don’t know much about it but it goes behind his ear.

This afternoon he has been petulant so I sat out in the garden by myself and left him to it.His daughter called and is coming in to see him tomorrow,and today he got a Get Well Card!!!!
This evening we sat in the sunshine with all his family.Brother Sister and Nieces he was very quiet but seemed content to be surrounded by his nearest and dearest,and as the sun set we said goodnight and went our separate ways leaving behind a frail man clinging on to life by a thread

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Liz in the UK
Wife of Robin aged 44 Dx 8th December 2006 SCC T1N2cM0 Partial Glossectomy,Bilateral radical neck dissection.IMRTx30,Recurrence and lung invasion 4th July 2007.All hope is gone but our faith stays strong
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Cookey
"Above & Beyond" Member (200+ posts)
Member # 3983

posted July 26, 2007 05:50
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Robins road gets darker by the day as his suffering just goes on and on.He now has very little substance to his face below the jaw line as the disease process claims more tissue by the hour.Yesterday his face started to swell badly again and by the evening his dressing was choking him to such an extent that i had to undo the tape holding it in place.His relief was instantaneous and the nurses spent an hour redoing it but the tape is now tearing his skin when they have to take it off so it is a long and fiddly operation.

Robins sister flew home to Portugal this morning to be with her husband who is now quite ill with a chest infection as well as his hepatitis and she and her twin brother spent a few quiet moments with Robin alone as they all absorbed the thought that it might be the last time they will ever be togather.

Robins body remains strong in some respects and his awareness of what is happening is all consuming i pray every night that the diamorphine will soon transport him to a level of remoteness that means he can relax and let nature take its course,but the horror of his disease process is bowing even the most experienced of the cancer nurse specialists who tell me daily how cruel this particular cancer is in death.

At present he is on 540 mg diamorphine over 24 hours with 230 mg break through oromorph,add to this diclofenic,steroids,tomazepam at night 150 mg amitryptilline,valium twice a day and still he wanders around like a caged lion.The rain fell all day and prevented him getting out in the garden and this makes this seem much worse for both of us as he has never been good at being confined in enclosed spaces. the forecast after today looks promising.and i hope he will soon have the sun on his face again.

Just off to walk the dog before headiing over to the hospice to give him a shower and a shave.
Keep up the good fight one and all

liz

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Liz in the UK
Wife of Robin aged 44 Dx 8th December 2006 SCC T1N2cM0 Partial Glossectomy,Bilateral radical neck dissection.IMRTx30,Recurrence and lung invasion 4th July 2007.All hope is gone but our faith stays strong.

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Posts: 278 | From: YORKSHIRE UK | Registered: Feb 2007 | IP: Logged

Liz

I hope one day you will be happy again.In terms of myself sometimes I feel I am taking my recovery for granted and complacency is setting in.

I feel better than I ever have but reading your posts and others on here makes me realise how lucky I am

Wishing you and Robin all the best

Robert

This message has been edited. Last edited by: Robert E,

Hi Buddy,

I echo Michelle's sentiments entirely. I know you appreciate that we are not voyeurs and you must remember that new people start on the journey you and Rob are on every day. We are all here to give support and it is only fair that people understand the worst as well as find the will to look to the future.

Your particular journey is the worst but it cannot be ignored; Rob's despair and resilience shows us the reality and necssity of good caring palliative support, and I know from reading your blog how much comfort Rob and others in his situation find in the refuge of such a warm and caring Hospice environment.

We never want to make this journey alone nor be blind, deaf or dumb to its reality. Your and Rob's story of mixed courage and despair is one that is relevant to all who value life, friendship, love and community and when in the fullness of time your pain has eased your blog should form the nucleus of a novel which will bring greater understanding to the wider community. Your pal, Alan

Cookey it is good you can articulate your thoughts about Robin and his decline. As a society we are too protected by what the death process of someone mortally ill is really like. Posting it here is important for those who need to be aware that the process takes its own course. It's also important for others to know that all the caring goes on beside other family members having traumas of significant magnitude from their point of view.

This is what I meant when I wrote <<'... Despite being worldy I realise now how protected from seeing real death as opposed to drama on film when a head falls neatly to one side that we all are. Like birth I see now that death is a struggle as the body and spirit slowly shuts down and gives itself up. ........I never really understood what that was until I saw it ... '>> By writing and posting here you highlight that death is nota straightforward journey, that we are torn by wanting to keep our loved one with us and just as much want them to have the relief and cessation of torment that passing will bring.

Things you have written have brought back moments we had this past few months that were similar. The fact that Robin has become a shadow of himself. I would sleep on the single mattress on the floor beside my mother's bed. In the half light of summer mornings sometimes I thought I was looking at a skull as her body became more a shell of its former self.

Thank you for writing this so others can understand the process. You express your doubts and hopes so clearly. I hope you can make that wedding as I have no doubt you will gain strength from the support of sharing thoughts with your family.

More tears for you Liz,
Well done for sharing.
Still thinking of you both.

No i wont be going to the wedding.
Robin has at last entered what the hospice call the dying stage,and is showing clear signs of deterioration.
I arrived at the hospice at 8.10 am even though i was expected at 8.30 and Robin was waiting for me in his bathroom.He was anxious and upset as he seemed to think i was late,but it turned out the nurses had tried to help him shower and he wanted to wait for me.He undressed and i took his dressings off,and i faced the reality and horror of what he is going through full on.He now has two holes over his larynx,his neck has totally collapsed leaving a cavity 5cm long 4 cm wide and 3cm deep through which his tumour is clearly visible.All the skin between these two sites is black and despite a raise in the steroids his face and lips are swelling again.When he turned to get in the shower i noticed he had a hole the size of a golf ball at the base of his spine.This too is black and deep.Despite my best attempts he was not happy in the shower and when i washed his hair the soap ran into the cavity causing him major distress.
His personal nurse Jane came to dress his wound and then she took me to a room and explained that his agitation and manner is the first stage of the dying process,but that the posibility of fatal heamorrhage from his neck is at a critical point.I have been given instructions about what to do if this happens,and the possibility is accentuated by the severe coughing he has to do to expectorate the thick mucous he gets in his mouth.She says if he doesnt haemorrhage he will be gone in less than a week.
Robin and i sat in the garden and discussed sedation which they offered him a few days ago and he has agreed to have some sedation provided i can wheel him out in the garden to sit in the sun.
As the day wore on his neck was causing more and more problems,and he has a tight choking feeling that frightens me.
His pain seems to be under better control and he asked me to get his daughter in for one last time.The poor wee thing was distraught but he gathered her too him and showed her the love he feels for her despite their estrangement for 15 of her 17 years,and i was so proud of him.

This is without doubt the worst thing i have ever had to do in my life.To watch someone you love being eaten alive by this pernicious disease is a living hell, and i wouldnt wish it on anyone.

Oh Liz, my dear dear Liz, so brave. I hope it is some comfort to know that so many of us are thinking of you both and will be for the time you still have to endure and then beyond.

All my love
Angie

Liz just thinking of you. Hope I am not saying wrong things, but want to help or comfort you. I do undertand how suddenly Robin has moved into the dying stage as this was how it was with my mum.

I hope you have someone with you to help you through the next days.

This message has been edited. Last edited by: PaulineT,

Words fail me, tears don't.

Life and, it seems, death can be so cruel.

May you find the inner strength to cope with what lies before you in the days ahead.

A big hug from Yorkshire

Liz

I just dont know what to say

Our thoughts are with you both

Dave and Sue

Liz,

You are being so brave! We are with you in our hearts.

It will be very hard for you to Leave robin & go to see your brother. Could you ask him to come and see yopu whilst he is over for the wedding.

Jenni