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#52406 12-01-2007 01:03 PM
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I've not posted for some time.

Need to talk to someone, thats been here, that knows how hard it is.

Mum finished radiotheraphy in April 07, been a hard journey sionce then, many side effects, so painfull to watch.

Told in August that visually by looking in her mouth it had gone, and it was all good.

September scan carried out, October scan results scan show scare tissue or cancer is back.

November Biopsy

Friday 29.11.07 results show CANCER IS BACK, no option of treatment "things have moved on now , maybe less than 6mts, we will aim to give you a good and dignified death"

I knew this was coming, Mum knew it was back and had told me for the last 2/3 mths.

Just hearing the doctor confirm it made it real, until then I did not have to face the reality.

My BIG FEAR, she will have a bad death, but how do I prepare for what will come.

She so thin, her breath smells, the doctor said she has bateria and mould in her throat, due to her not swallowing anything.

She is also amazing, she just tells me to be brave and at least I have sometime to prepare, how can I prepare, how come she never cries, she tells me she hopes she dies soon as she is scared of being in pain.

Talking here helps but the tears just roll, I guess they have to come out sometime.

#52407 12-01-2007 01:21 PM
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Andrea

I am sooo sooo sorry you have to go through this. this disease is horrible and feels as though it shows no mercy .

It sounds as though mom is a pretty amazing and pretty strong woman . And you know I bet in her OWN time she does have her own moments. But being a mom we always want to protect our children and we don't want them to suffer , especially watching us go through somthing . It real hard to be a MOM and be sick . I have 5 kids ...all under 14 and when I was sick I wanted to be strong for them so they weren't scared. I couldn't bear them going through it . I never cried in front of them and I still do.

I hope that you all can find a way through this with some comfort and peace. I am always here to talk or listen as most of us are!

Shar


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
#52408 12-01-2007 02:04 PM
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Andrea: So sorry to know that your family must go through this....We will certainly be thinking about you all during this time.

Keep us posted and lean on us if you feel the need.

Lois & Buzz


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#52409 12-01-2007 02:46 PM
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Andrea,
Am here and in similar position to your mom.
Have done, and am still doing, the whole 'brave thing' for my kids, both of whom are away--have just amnaged a transatlantic trip to make sure my daughter saw me 'looking well', probably for a last time.
Cry when you need to, you can bet your mom will cry sometimes--but not when you're there, if she can help it! It's just what we do as moms!
We LOVE you to bits, and want you to know how much, a mother's love is the most powerful in the world, but we don't want you to see us suffering.
Andrea--hang in there and keep visiting the site--we are all here for you AND your mom--and the relationship between you!

Brenda x


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
#52410 12-01-2007 04:14 PM
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Andrea,

I know what it's like to hear the words that your loved ones cancer is back, but I haven't been told that there is nothing they can do yet. My heart aches for you and what that may be like. I understand how hard it is to be strong when you see your parent go through a difficult time. Your mom sounds like one strong lady, and I'm sure she has raised one strong daughter, even though you may not feel very strong right now.

Please know that you are not alone and that you and your mother are in my thoughts and prayers.

Joy


CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
#52411 12-01-2007 04:46 PM
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Hi Andrea
having been where you are just a short time ago,i just want to say dont be afraid to ask me any questions that you like no matter how dark.My e-mail address is in my profile and i am in the UK as well so only a phone call away.

Please take advantage of the superb palliative care teams available (Macmillan services)it really is a whole 24/7 family support and not just patient care.The one thing they are superb at is pain control and provide a huge shoulder to cry on for you and other family members.

When the pain starts to get bad a short stay in a hospice facility to get a pain management regime established will be invaluable and supportive,and usually only requires a few days .


Dont leave these things Andrea,get everything in place now so it will kick in a soon as you need it.
Where abouts in the UK are you situated?

One thing i would like to say is listen to your Mum.This is about what she wants now and how she wants to do it.There will be times you want to shout and scream things like "dont give up" or you may wonder why she doesn't want to fight it anymore or doesnt want to see people or to eat anything or sometimes even speak to people.

Take some time now while things are still ok to find out exactly how she wants to do this and then respect her decisions and assure her you will follow them to the letter,no matter how hard that is for you.She will have a more peaceful and calm few months if she can relax and trust that you will do as she asks.

When all that is done ,savour every moment because for a while these next weeks and months will become your most precious memories and will have to sustain you through some very dark days after she is at peace.

love and strength

liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
#52412 12-02-2007 06:00 AM
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I am overwhelmed that you guys take the time to reply.

Thank you, your words bring on my tears, but your words mean so much coming from people who really know how it is.

My step Dad is 82 and earlier this Mum came and stayed with my family for about 4 mths, this was hard on my Step Dad as he missed her so much but he could not give her the level of care she needed and we could not cope with them both (his daughter lives round the corner from him).

When she went home I tried to get help for them but it all seemed so slow and such hard work, that betwen us we did our best and as Mum got stronger things got better.

Do you think now that it is teminal she will get the help she needs to be able to stay at home.

The big problem is if she gets to week to take her food and medication via her PEG who will do it when she has so many time slots during a normal day.

Will nurses come in 4 / 5 times a day, I can't see how she will managed to stay at home and I know that where she wants to be.

Do I start making noises now and who to?

#52413 12-02-2007 07:07 AM
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Andrea--your first port of ncall should be the MacMillan nurses--you should have been 'allocated' one at the hospital and given a number---don't hesitate to ring!
They provide both practical and emotional support and will help you fill in any forms which will help mum get the care to which she is entitled.

Also, contact the GP surgery AND Social Services, so everyone knows what is going on and needed.

A visit to a local hospice with her might be a good idea--Cookey will tell you how good they are and what a blessing it was for her Robin.

You are in my thoughts during this sad time,

Brenda x


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
#52414 12-02-2007 11:34 AM
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Andrea,

I do not have alot of personal experience with having to deal with terminal illness, even when My grandmother passed it was unexpected. But there are people here who can see you through.

As far as Us all being here to repsond....There is NO PLACE I would rather be . After all this site and people on here have done for me ..this is the least I can do , But I also want to . It makes me feel better, Not that anything I can say can make you feel better or change it . But I do want you to know my thoughts are with you during this difficult time


Shar


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
#52415 12-03-2007 03:44 PM
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Andrea, my Mother went thru same thing,, just make her life as enjoyable as possible.. I took ,mine anywhere and everywhere she wanted to go and tried my best make her smile.. you have all my prayers


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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