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Joined: Aug 2011
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Hi there -

Apparently you've been swarmed with media requests, but Brian suggested I post this here.

I'm doing a story for the Wall Street Journal on hospital menus for cancer patients. A number of them have spoken about pureed menus for oral cancer patients or those with mouth sores.

I'd like to talk to someone on the receiving end of the hospital menus, good or bad. I understand that most oral cancer treatment is at home, but I'm specifically looking for someone who has tried some of the pureed menus.

Please contact me off list or on a private message.

All best,

Dawn Fallik

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Bringing this to the top


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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again


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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I am dying to share my story of hospital food and Alex's cancer but unfortunately we are in Australia.

Luckily most oral cancer patients won't have experienced the joy of pureed food in hospital as most don't have to stay too long. Poor Alex, however, was stuck in hospital for an unscheduled 50 days and experienced the complete disconnect between delivery and removal of meals and someone taking responsibility to ensure he actually ate them. Alex was charted for a "soft" diet which seemed to have been code for "patient too far gone, no variety required". It seems the job of the catering staff (sorry don't know what they are called) was to drop the tray off and pick it up again with no responsibility to check if the patient had eaten anything or have any dialogue with the patient at all. The nurses certainly didn't check either so if the patient was unable to complain or had no appetite and kept their mouth shut(as Alex did) it would be completely overlooked. Alex lost 12 kilos (26.5 pounds) in hospital over a period of about 4-5 weeks because of this.

Variety? Yep, breakfast was custard an acidic drink like orange juice and a yoghurt. Lunch was custard an acidic drink like apple juice and a yoghurt. Dinner was completely out of the box with custard, a cup of tea and a yoghurt. If you had an appetite at the start, a few days of that ensured you didn't by the end!! But maybe I exagerate slightly - the yoghurt came in different flavours that Alex was unable to differentiate as well.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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I don't think I received pureed foods at the hospital. They gave me soup that I could sometimes eat, acidic juices that I couldn't drink, cream of wheat that was too thick to swallow. It seemed like it was just a general soft diet with no thought given to the fact that my tongue was tethered to the base of my mouth and covered with sores. I ended up mostly just drinking ensure and sneaking in lattes.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
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Fortunately I keep kosher and was able to have food ordered from a local kosher outlet and in consultation with prior consultation with the hospital nutritionist I was able to avoid the awful canned suppliments when I had mandibular reconstruction. I stirred in approved amounts of a powdered protien supliment get the required amounts of vitamins and nutrients.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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