#19141 12-15-2005 03:23 AM | Joined: Jun 2005 Posts: 5 Member | OP  Member
Joined: Jun 2005 Posts: 5 | I was a caregiver this year to my sister who was diagnosed with tongue cancer. It was rather sudden and very alarming at how agressive both the cancer and treatments turned out to be. She completed her treatments (surgery, free-flay reconstruction, radical neck dissection, radiation & chemo)in Jun 05 (after just turning 50. She had none of the risk factors associated with this type of cancer - non-smoker, non-drinker and one of the nicest, kindest persons I've ever know.
Two weeks after returning to her home, she had laboured breathing, high temperatures and was checked out both in emmergency (after 5 hours waiting), as well as a new family doctor. On both ocassions, they sent her home even after we specifically asked for her to be checked out for pneumonia (having researched the symptoms. She collapsed at home at the end of the very week she was given the all clear by A&E and her new doctor. They resusitated her after 20mins - but she was already brain-damaged and was rushed to emmergency. We switched off the respirator a few days later after all the family and friends were able to fly over to the US. The diagnosis - pneumonia!
I cannot begin to describe this loss. Even now in Dec 05, it is as if it were yesterday. A constant re-living of events. I do hope that this post does not distress anyone unduly. The purpose of this article is two-fold:
1) Please do not hesitate to check out anything unusual during recovery, however small or insignificant this may be. Also, get the advice from where you're treated. We were treated in a different city to where my sister lived and so when she experienced problems, we went to the local healthcare. If necessary, stay in the same location for a few weeks after if you live away to make sure that the expert help is at hand if and when needed. We keep wondering if we had made the trip to the treatment hospital instead of the emmergency if the outcome would have been different.
2) I have now returned home (the UK), and am very keen to do some voluntary work with oral cancer patients, even if it is visiting the patients who are having chemo to read or listen to their stories. I am not medically trained but I have lived through the most difficult days and treatments with my sister. From a selfish standpoint, I am hoping that this may help with the healing.
If anyone knows of hospitals in the London or Essex area where oral cancer patients are treated, please do let me know asap. Any other suggestions for helping other survivors or patients would be very welcomed.
Thanks to everyone who helped us by your messages and life experiences. It was invaluable! A special thanks to Brian who is a true champion!
God Bless. | | |
#19142 12-15-2005 03:51 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Emily,
I am shocked and stunned by your loss. Sadly, this is not the first time I have heard a story like this here.
Thank you for sharing your story and very sound advice. Three years later and I still have the same medical team.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#19143 12-15-2005 04:01 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | That's a terrible story and I'm sure your loss is very difficult to deal with.
This type of story makes me really glad I was treated locally and have local docs--I'm sure you're right about the difference that made. I also finished treatment in early June of 05 and two days after the end of treatmnet started running a high temp (it was on a weekend). My MO's office was all over it when we called, although the doc on call was not my MO but his partner in the practice. He made arrangements for me to be admitted to the hospital right away and the MO kept me there for nine days on IV antibiotics (and gave me chest xrays and a CT of my mouth and neck) to be absolutely sure he had ruled out any kind of dangerous infection that could exist. He never did figure out why the temp happened (it wasn't pneumomnia)or why it kept spiking for a week and 1/2, but I felt very confident that I had the best possible care there until he was absolutely sure I was OK.
Everyone should get this after they go through the ordeal of chemo, radiation and surgery for oral cancer. I hope you do get the chance to be a helper and advocate for others, Emily.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#19144 12-15-2005 05:55 AM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Emily - I am saddened by your loss in such an unecessary way. These doctors should be held accountable for their inaction.
Your desire to help is admirable. I hope that you will continue with us here on the boards at OCF, as your experiences as a caregiver allow you to have insights that will certainly help others. Your making the time in this period of grief shows that you are truely concerned for the welfare of others...you will always be welcome here.
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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#19145 12-16-2005 04:26 PM | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2003 Posts: 235 | Emily,
I am really sorry to hear of your loss, and disgusted by it. Sadly these situations are not uncommon. Several weeks ago my wife's grandfather was checked into the hospital with a kidney problem. That cleared up, but unfortunately he died ten days later from an infection that he got at the hospital.
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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#19146 12-16-2005 04:39 PM | Joined: Nov 2005 Posts: 306 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2005 Posts: 306 | Emily - I am saddened by your loss. Your sister was so lucky to have you there. Your story reminds us how fragile our health can be.
It is wonderful that you want to reach out to others. It shows real strength in your heart and character. Give yourself some time to heal and to regain your strength. There are many who can surely use your caring. Good luck to you, Tom
SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
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