Monday I go for a 6 month ct scan and chest x-ray. It's a frightening time only made more so by the death of my husband on Labor Day. He collapsed with heart attck or stroke and medics were unable to revive him. There are so many tasks that need to be done, but somehow I am unable to concentrate on any.

If only the scan and X-ray are clear, I will be better able to move on. I am open for any and all suggestions for coping during this difficult time.

Adenoid Cystic Carcinoma Stage III submandibular salivary gland. Neutron radiation treatment ended 12/24/02

Hello Lily,

I don't have any great revelations for coping at this time in your life. I just wanted to reply and let you know someone out here cares and is thinking of you. I am sorry for your recent loss. I'm sure more members of OCF will be along and maybe they will have helpful suggestions, or maybe they will just let you know we are here, and sometimes that in itself may help you cope.

Good luck on your scans. Keep us posted.
Dinah

Hi Lily, I am so sorry to hear about the loss of your husband, coupled with everything you are going through with your own illness. When things like this happen - it is so easy to be overwhelmed with a wide range of emotions and fears. That is understandable. As far as the cat scan and x-ray are concerned, please know that you are not alone when it comes to nervousness and apprehension when it's time for scheduled tests like these. If you were to see some previous posts by patients (and caregivers) you will see that this is to be expected. We are all human, and the fear of what tests like these can reveal can just simply drive a person bonkers! My husband who was treated for stage III/IV SCC at the base of the tongue - just went to see his oral surgeon yesterday, his radiation oncologist today...and also had to get bloodwork done and an x-ray as well. Waiting for results truly is one of the hardest parts to deal with. The best advice I can gice you is to reach out to friends and other family members now - and don't be afraid to ask for help with chores and various tasks, etc. Also - if you are feeling more overwhelmed than you think you can handle - it would be wise to talk to a Counselor who will be able to help put things in perspective for you. Also - remember to do things for YOURSELF - things that have always brought some comfort and happiness - sometimes, something as simple as a nice stroll around the block or in a park can help clear your mind. I hope these suggestions help to some degree...although time is often the only remedy for such things. Know that we are here for you to cry, vent, scream...whatever helps you to feel better. You are not alone. God bless during this time of healing for you, and my thoughts and prayers are with you for good health in the future. Take care.

Lily,
I don't think I could express myself any clearer than the posts prior to mine, but I will add that your husband went thru this battle with you and I'm sure he'd want you to keep on fighting and not give up hope. He's pulling for you from wherever you feel he is now and looking out for you. So keep him in your heart and find stenghth in the good memories .
Diane

SCAN RESULTS

Today I got results of the scan. The neck area is clear, but the lungs looked suspicious. They will schedule another scan of the lungs. I knew this was a very real possibility, but hoped against hope that it would wait a few years. It is exactly one year now since the original diagnosis.

Lily, just now read your first post, firstly we are very sorry for the loss of your husband, along with your illness seems too much to bear. We are about to battle our 3rd reoccurence. There is alot of love and support here on the board. Tests themselves make most of us crazy..Just hang in there, which right, like I know ! Easier said than done......remember, you don`t have anything conclusive yet, so like alot of us here try to do, is just take one day at a time, or minute, or hour ! Believe me, alot of us have been through this, so stick around........Our prayers are with you.......Packer and Dee

Hi Lily,

Words alone cannot express my feelings about the loss of your husband and and feelings you are having waiting on your test results. Please no that I and alot of other members of this forum are pulling for you. Your husband would want you to keep up the fight. Please let us know when you find out the results. My prayers are with you, Dan

Hi Lily,
That's a lot of stuff to grieve all at one time - your precancer healthy self and now your husband. Add to it the fear and anxiety that all these tests bring and it's easy to see (from the outside anyway) why you can't concentrate right now. Most people would have difficulty concentrating with just ONE of the three. Be aware of the five stages of grief and how they may impact your daily life (and the stages can come concurrently and not in order). Most local hospices offer grief counseling and you may find that useful. Private counseling with an MFCC or someone at your church (if you attend one - many churches have "people helper" programs with people that will walk along side you through this) may be helpful. Your burden is certainly something too heavy for you to bear alone at this time.

There are some books that may help you understand whats happening, if you are able to read them, like Elisabeth Kubler Ross, "On Death and Dying" or "Death: The Final Stage of Growth".

I will pray for comfort for you and your family...

I wanted to send you an email directly, but you have that portion of your profile blocked. My private message to you was not checked in the "my profile" part of your web page for several days so I am posting a portion of it here. I can tell you that in the first couple of years after radiation I had similar scares. Each time a new radiologist would read my films they would say that portions of the upper third of my lungs looked suspicious, and it would set things into motion. But each time it was determined that that was residual scarring from the radiation treatments of my neck (which is not as localized as they would like you to think), and the panic level went back down after additional testing. I now routinely have abnormal lung scans, but it has not been cancer in 5 years. Radiologists have to report everything that falls into the range of abnormal, and issues related to damage to the lungs that occurred during your treatments might very well be what they are seeing. Good luck in your next set of scans, let's hope this is all that it is. Survivorship is like this. Always waiting for the other shoe to drop. You would think that it would get easier as time passes, but no one that I have talked with indicates that to be so. It's something we will all carry for the rest of our time. Try to keep it all in perspective, and try to find some good in each day no matter how dark they seem. And please don't spend more time alone than necessary given the other sadness that has happened in your life. Having others around, and being able to share your sorrow with them helps a great deal. They may not have answers, but just their act of their listening makes it a little better.

Brian,

Thank you so much for sharing the information about radiation scarring making for an abnormal lung scan. The report from my scan has really thrown me. There is so much to do at a time like this (dealing with all the post-death paperwork) and I simply am unable to concentrate. I think that holding fast to this possibility will help me through the next few days.

My next scan is scheduled for Monday. They tell me if that is abnormal, the next step is a biopsy. But I refuse to think ahead that far.

I am sorry my profile did not allow for sending e-mail. I am not the most computer literate person around here, but think I have now fixed that.

Lily

Results of the most recent ct scan received today. There are a number of small nodules in both lungs as well as two suspicious lymph nodes. They will refer me to a thoracic surgeon for biopsy to determine which cancer (adenoid cystic carcinoma or the breast cancer) has metastasized.

Lili,

Do your best to keep your spirits up. You conquered so much . YOU CAN DO IT. Always remember your husband would want you not to give up. Ask for help and feel free to vent to anyone on this site or whoever you can use as a sounding board but keep on fighting. My thoughts are with you.
Diane

Hello Lili,

My thoughts and prayers are with you during this difficult time in your life.

Life deals all of us some challenges that we will never understand.

I know that being with family and friends help more then anything else during these times. Praying and journaling is huge to get you through one day to the next.

Again, you are not alone, even though it may seem like it. I will take you with me in my thoughts and prayers to help you lift this burden you are carrying to give you more strength and courage. God Bless...and Take care....Flo XoX

Hi to all my new friends
I have read many of the old posts and try to keep up to date with current issuses. I would just like to try and share my recent experence with you, like I suppose many of you my public persona is bright, cheerful, postive, upbeat and of course everything is Fine, Will be Fine, worried? no not me. Well last night was spent in the ER at the hospital with me having taken half a bottle of temazapam, worse than that I took them while on the phone to by best friend, who is the only one who knows all the details of my cancer. My husband is blind with advanced prostate cancer, my mum is 80 and I thought that I could carry all their loads as well as my own, I WAS WRONG. So please if anyone out there is tying to shoulder a load to heavy, please, please find someone to help you. It may seem ironic that with one breath I am trying to survive and in the next breath I am trying for suicide. This has not been an easy post for me, but if it helps just one person out there to avoid what I have been through in the last 24 hours then it has all been worth it.
Thanks to all who share their thoughts, let us hope that the power of friendship across the world can be of benfit to us all.
Helen.

Dear Helen,

How brave of you to come on to the forum and share that with us. I admire your courage and that is what you have, regardless how you feel today. Many of us have been there and need to hear from you. My faith is what keeps me going.."if God leads you there, He will lead you through it"
And now we need to get you HELP! As indeed you are not Superwoman! Please contact your church, or social services or anyone who can give you the physical and emotional supposrt you need.
We love you, Helen........Please keep us informed on how you are doing, OK?
Judy U

Hi Judy
Thanks my friend says I am not superwoman, true I couldn't wear the tights! But seriously thanks I have found what I think is a lump in my tongue, not the red or uclerated bits, it is as I slide my tongue between my teeth I am sure I can feel a lump, maybe just scar tissue from the last op, but also there appears to be a something in the back of my throat as I swallow, now this all my just be a panic attack, but my next hopital is not until the 28th of Oct, I am probably just having a panic attack but I am p***ed off! Thanks for being there. my motto has been Live Well, Laugh often, Love Much but today is crumbling!
Luv Helen

Hi Helen,

Please don't do anything rash. We are all hear to vent to. I want you to know that people on this forum are all very supportive of each other and pull for everyone to survive. There are bumps in the road that we all have to experience before we are over this dreadful cancer. Without this forum to gain information I don't know where I would be. Take care and post often. Dan

Dear Helen,
And don't forget "dance as though no one were watching" I think a dance is in order here. Helen, I know precious little about medical care in the UK but is it possible to get an earlier appt. re:your tongue? Oct 28th is a bit of a wait when you are this scared. Keep writing and let us know, OK? It may be a panic attack but it is very real to you right now and that is scarey. Hang with us.
Love
Judy U

Helen,
Although I haven't walked in your shoes, I do understand. Please, take a deep breath and know there are people who care about you. There's a lot of help available to assist you in getting through life's bumpy patches. I've found the world is full of very warm hearted individuals who are eager to help. My thoughts are with you.
D

Hi everyone
Many, many thanks for all the posts and e-mails, your support has really helped, I have managed to resolve some of the personal issues in mylife, didn't realise the overload that was happening. I am going to our family doctor tomorrow and will TRY to talk some of this through with him. They don't tell you that along with the cancer your whole life gets screwed up in knots, I am sure the last 2 years have contained more than 24 months!!!!
God Bless you all, will keep you posted.
Helen

Hi Helen,
anxiety and depression are part of this disease and the NCCN has a guidance document specifically for "Distress Management" just to deal with those mental health issues. Some doctors ARE aware of these and will advise or prescribe medications to counteract the problems before they get out of control.

Most of us suffer extreme anxiety in the beginning, some with each followup appointment or even waiting for test and scan results. Most of us also suffer depression post treatment. So what you are feeling is "normal" under the circumstances. Like Lily, you also have a tremendous burden above and beyond your own issues, far too heavy for you to bear alone. Maybe your family doctor can give you a referal to a psychiatrist to get you appropriate medications to get you through the rough spot, "talk" therapy with a psychologist would be helpful also. This is a great place to vent in almost complete anonymity also -one of the fringe benefits of the internet.

Like you, I tend to be the positive, upbeat optomist.

There's a reason why they don't do cancer jokes on Jay Leno or late night comedy shows. I am grateful to God that I occasionally see some humor in it now, albeit a dark humor. Last week I emailed out to my supporters a list of 8 "benefits" of radiation.

I didn't see much humor in it while I was in treatment though, although I kept a stiff upper lip while I was dealing with the radiation techs, even though they warned me I would end up "hating them" (which I didn't -they were my life savers). So many people take it out on them -theirs is a thankless job. I always tried to keep it light with them and let them know how much I appreciated their efforts (no matter how much I was suffering).

Anyway you've come to a great place. We have walked in your shoes and understand what you are going through. Keep coming back!

Helen
Please try to get an appointment with the ENT as soon as possible. Waiting when we find a lump AND have a new diffuculty swallowing is not a good idea. If the ENT can't see, you maybe your dentist can. Maybe the Dr. would be willing the schedule the CT scan before he sees you to save time. You just don't need the stress of worrying about the unknown in addition to all the other stress you are under. Pull some strings if you have to.

Take care,
Eileen

Hi everyone,
One week on and I'm still here, not because of any help from my family doc, but in spite of his supercilious attitude. He laughed said I needed a holiday, dismissed my concerns about my tongue and throat, I was left feeling neurotic! Only three weeks till my check-up, if they find anything at all, I shall take the report to my doc and stuff it where the sun dont shine!!!
Takes for all your support over the past few days I will keep you posted.
all my best wishes
Helen