I am new and hope it's ok to post on this board. I have adenocarcinoma which I am told is a cancer that targets the epithelial cells.
In June of this year 2006 I went to the Dr. with leg pains and fatigue, he gave me a check up, x-ray and blood tests. The next day I went for a scan I have a 7.5cm mass on my left lung.
I then went for a bronchoscopy, one of the worst experiences of my life and the histology came back with the adeno cells, however it's been decided that the mass on the lung is a metastasis, as it's not the primary site, surgery is not an option. The primary is unknown. Chemo was discussed but as my physical condition is not good, I have severe muscle wastage and weigh about 95lb it's thought that chemo would destroy my quality of life very fast and/or probably kill me.
My Father had liver cancer and refused treatment he was given a max of 6 months to live - he lived happily for 5.5 years.
I am not too disturbed about not having any treatment at the moment. Being alone here it's most important that I am able to function and care for myself. I am living in a foreign country and don't know many people here or speak the language, other than that I am very happy here. It's the not being able to communicate about cancer which is the cause of my isolation.
When I first went to see my doctor here a 'friend' came with me to translate, she helped a few times then in the middle of the all the tests she disappeared, just calling occasionally or showing up when she was in the mood, this hurt, it hurt a lot, less than two weeks after being diagnosed. Just writing this helps me to understand why her behaviour hurt so much.
This has given me a major problem in that it's really hard to communicate with my Doctor, he speaks little English. I really want to try and understand what is going to happen to me so I can make arrangements, if I will need someone to come in and care for me, how will I know if/when that time arrives. I am afraid. Not afraid of death exactly, but afraid of the unknown, how this disease will progress.
My Doctor here is surprised as at the last couple of x-rays the mass in my lung has not grown. However I now get intense pain behind my shoulder blades. The mass is in the lower part of my left lung, not sure what that area is called.
I am having steroid injections into my knees as all the cartilidge there is gone, that was the reason for the leg pain.
Can I come and talk with you guys please?
Allow me to be the first to say "Welcome aboard!". I know I speak for the many of the outstanding people who post here. I hope you will take the time to get to know everyone. I think you will find alot of comfort and benefit from dialogue with people who have been battling with cancer in different ways and with different levels of expereince. If you have come to get better informed, I think this is a great place to start.
My wife basically has the same cancer as you have. She has a regular amount of pain in he back and so your condition is all too famaliar. She has also lost a considerable amount of weight and at one point was down to 102 lbs, but has since come back up to about 112 lbs. However, she just had chemo and is probably dropping a few.
I can tell you are a courageous lady. I look forward to seeing you around and hope your sojourn here is a pleasant one.
Hi Cee10- You have friends here. I often come to this site to find peace in knowing that there are many individuals out there sharing similiar adventures.
I'm also new to this site. I'm also diagnosed with a terminal illness and not afraid to die. Similiar to you, my fear is the unknown. The 'not knowing' and 'waiting for the other shoe to drop'. To help ease this, I have made a committment to live life fully every day. It helps to do this by knowing that none of us can fortell what is on the horizon.
Thank you Thank you Thank you so very much for your kind words, tears came into my eyes with your acknowledgement and understanding of the situation in which I find myself. I was diagnosed on July 19th, so a lot of pent up emotions.
Hi Bt, thanks for your suggestions, I did contact the UK embassy I am English, but no help is available from them.
I also tried with the help of an American friend to send my slides, records and scans to a cancer centre over there but they could not guarantee the return of things so decided not to follow up on that.
The Red Cross is a great idea I would not have thought of that one, thanks I will check it out.
Hi Conan, thanks for talking of your wife's cancer it does sound similar to mine. I do pray that her chemo is successful and that she gains weight. It can be so hard to eat, little and often is the only way for me I think of it as putting in essential fuel, the way a car needs petrol,
it does not make the process enjoyable but does give me the determination to eat something. Maybe it will help your wife if she thinks in that way about food. I am finding rice pudding easy, it's easy to make, easy to digest, just slides down and when I've had enough just
put in the refrigerator until later.
Sorry I made a mistake converting kilo to pound with my weight in the post above I'm 105lb = 48kilo
Hi Tom, you are so right none of us know what will happen tomorrow, and thanks for the reminder to live life each day to the full, sometimes thats easy to forget, when the clouds gather.
Tomorrow I have another adventure at the doctors, leg pain has returned in a big way, so hope to have some more injections in the knees. Boy how life changes never ever thought I would hope for needles to be stuck into my knees
Thank you all once again, you will never know how important your response is to me.
I feel for you. My mom has stage IV metastisized cancer that started from the lung to the brain.
anyway, with treatment/radiation she is cancer free now in her head. She has had 4 treatments of chemo now for the lung, and on the 30th we will find out how much more the tumor has shrunk. She had 30% shrinkage so far.
She goes to a comprehensive cancer center here in Michigan, and they are going to start her on a new lung cancer treatment machine which is a high intense radiation unlike typical radiation. If they can shrink the tumor with chemo, and then target the tumor with this tomo radiation therapy, then they can kill it at the root.
Don't necessarily give up on the chemo road. As I posted before, the chemo was hard on my mom the 3rd treatment. When she had the 4th, I was so sad for her as she was doing bad. I said some prayers, and really focused on the positive side of what the chemo is doing for the cancer, and my mom actually helped cook the thanksgiving dinner today (prep for tomorrow)..........SHE IS DOING AWSOME!
I would try to get yourself to a cancer center, not a hospital. They tend to only do standard protocal, and are slow in the process for testing etc.........
It took the main hospital here in michigan 14 days to tell us if the cells in her brain tumor were cancerous or not. yes, 14 days, and that was after our family went to patient relations with complaints. The cancer center my mom is now at would have had some results within a day or 2.
I'm so glad you have found this forum and I hope your sense of isolation is, to some degree, relieved.
After diagnosis, one of my major concerns was similar to yours: wanting to know how the disease would progress and affect my ability to look after myself, because I needed to make arrangements for someone to care for me at home.
Your question "What is going to happen to me?" is as unanswerable as "How long do I have?". You can do research, gain a great deal of knowledge about cancer, which is all to the good: but you cannot predict what this insidious disease will throw at you, or when.
There's so much that I don't understand about your circumstances. I'm assuming that you live in a country that's a member of the EEC and that your healthcare costs will be covered. How long have you lived abroad? How old are you? Do you live alone? Do you work? You say you are very happy there despite your knowing very few people and struggling with language and communication, and despite your illness; there are so many questions I'd like to ask you, but please don't feel obliged to answer if you don't want to.
If the Embassy couldn't offer help, they should have offered advice....at the very least a list of Doctors who speak English. I wonder, did they suggest you to go home to the UK to receive care? I think anyone with any heart at all would have advised you to go home, out of concern for you. That's how I would feel....real concern that you would be making things so hard on yourself
if you stayed abroad.
I have lung cancer...nsclc 4....which has metastasised. I cannot have chemo. The mass is in my left lung, much the same size as yours, and I have severe pain in my upper back/shoulders just like you. It's cancer pain. I use morphine (slow-release) capsules and supplementary doses of liquid morphine. I have about a dozen or more other daily medications prescribed for me, and a daily injection. I have Hospice care available to me, and attend a weekly day-clinic which gives me tremendous support. I live in England.
Are you receiving adequate pain-relief drugs and other meds from your doctor? You only mention injections for your knee problem.
I think you being very brave. You are in my thoughts and prayers.
Keep posting, offload some of those worries.
Somehow I did not see your post until now. I usually am on the posting board at least once or twice a day, but during the time the boys had off from school I did not go on until today.
I am sorry to hear of your cancer. I am not as familiar with your type of cancer as my husband has SCLC which is very, very extensive, but has survived 17 months and outlived what they had thought! My husband does have leg pain and no muscle left at all. He says his left knee is actually numb and has no feeling but he also has the cancer in his bones so figured that is the reason why he has no feeling.
You take care of yourself and I hope you can find someone to help assist you with the language barrier, how frustrating! I would keep asking around where you live to see if someone can help you.
Keep us updated and stay strong and have faith!
It's been a while I know, as I have been out living life to the full then coming home and collapsing - trying to live while I can. I had the injections in my knees and they enabled me to walk pain free for a while there. I also had a benzacillin shot (a long acting antibiotic) which relives the pain in my upper back, so I was fit to go :-)
The bad news is that the mass on my left kidney in increasing in size, so I now feel a constant pressure there.
An English lady who speaks a little Bulgarian came with me to the Doctors, so I was able to ask about end of life care, I will have orphine, when it's needed, but will have to arrange my own home care team, not really sure what care I will need, but at least I know I have to set up a system, so that it's ready to kick in when and if I need it.
My dear friend who I have known for over thirty years will travel from the states to be with me for the final days, I hope there is time for her to get here, when the need arises.
It's wonderful that treatment is working for your mom, and that she has you to care for her. It really sound as though she is getting the best of treatments. I don't think they have 'cancer centres here as such, for sure they don't in the small town I am at, but I do get my test results back very fast same or next day, so am not left hanging for the results.
The problem with my cancer is that the tumour in the lung is not the primary tumour, it's not the 'nest' so clearing that tumour will not clear me of cancer, the primary site is not known, but because I have so many metastasis, I am told that even if the primary were found and treated it's pointless. So I am going for the quality of life option. I have been offered chemo, but on pressing the docs, told that I am really too weak to tolerate it and that the chemo in my case would be an aid to 'hope and positive attitude'
I use prayer and visualisation techniques to slow the growth of the masses and create a positive attitude. (hopefully). God bless you and your mom.
It seems we are in a similar situation, other than location, I moved lock stock and barrel to Bulgaria eight months ago with the intention of living a rural lifestyle, opening a small meditation centre and to improve my health.
I was diagnosed with Chronic Fatigue Syndrome CFS, years ago in London, so have been unable to work for a long time, I was under medical observation for many years on a regular basis. The opinion here is that I have had cancer and a shortage of oxegen for many years. Also the medics here have discovered that I have had streptococcal (sp)infection and pneumonia, which has been recurring for many years, I was always getting chest infections in UK, but never tested for anything. - I am now clear of the pneumonia after the treatment here. Interestingly CFS is not recognised here, they test and test until they find the cause. I am 57 and live alone, with my cats.
No the embassy did not suggest that I go home to receive care, they were courteous, told me they could not help and bye - lets face it they are government employees more interested in things that will elevate them on the career path.
It's a difficult decision to make stay here or return to UK, my friends there uk are all working and have their own lives and are dotted around the country, so no particular place is home. The hospice system attracts me, and being able to speak English but thats all.
Logistically it would be very difficult to move, I would have to find a place to stay for me and the cats - I dumped all my furniture and stuff when I moved here. I am not physically strong and am unsure if I could do it. Personally I no longer trust the medical system in the UK because of my misdiagnosis. I am isolated here yes but now I have found you all, feel less so. I cried so hard when you all replied to me I think the release of being able to express myself, boosted my energy so much. Thank you
Perhaps my pain is less severe than yours, as yet I don't need any heavy pain killers, I do take tramadol sometimes but really try not to so that I don't build up a tolerance to pain killers. The other medications I take are what would be termed alternative in UK or USA.
The drug companies have not really penetrated deeply into the market here yet, so lot's of vitamins and minerals are used. Your hospice care sounds wonderful, it must help so much having people around
you who understand and can advise. Are they able to help your son deal with your illness? My Father had hospice care they were really compassionate to both my Mother and myself.
Thank you so much for your message, it's great when getting past that initial prognosis date isn't it. I do hope that your husband is doing ok.
Ellen I was just typing this out and your new message arrived tlepathy
God bless you all and once again thanks for your support your all
Cee, God love you, I don't know how you do it. People like you and Ellengrace remind me so much of my hubby Bud. You are warriors, fighters until the dust settles. I am glad you came here as there are more and more that are patients rather than caregivers. Pat from KY is a survivor and she has long been an inspiration for many of us. I too wonder sometimes what will happen to me when my time comes...who will take care of me. But I know God will take care of me and see me through to the end. Sometimes I wish this HB would let us communicate outside of the forum, but it won't. So, all we can do is be here for you, we are strong in numbers and hold eachother up.
Thank you for your kind words and for checking in here, it must be so difficult for you these days, I read about Bud riding horses in heaven, I am sure he is looking out for you. This is a special place, everyone is so kind - it's odd meeting such wonderful people in these circumstances, and I thank God for leading me to this forum, I think you are all angels.
I hope you are feeling well, making the most of each day but not over-tiring yourself. I have been quite sick/doped this week, so I'm sorry I haven't posted before now.
After reading the post in which you said you were living in Bulgaria, I started searching for info about cancer care and hospice home-care and found many references but little or no direction. Short of cold-calling named researchers at university teaching hospitals, or their chaplains, I wouldn't know where to begin. I also read about Bulgarian government restrictions on the prescribing of opiates....perhaps explaining why the pharmaceutical giants have yet to gain a foothold in the country.
You say you live in a small town...I wondered which is the nearest city?
I'm so glad to hear that you had someone to accompany you on your visit to the doctor, to help overcome the language-barrier. I was wondering if you had given any further thought to contacting the Red Cross in the hope it could help you to establish useful medical contacts?
I think you are right...you and I do find ourselves in a similar situation as far as prognosis is concerned. At the time of the initial diagnosis,in addition to the lung mass I was found to have a tumour on the adrenal gland to the kidney and further mets in the groin area. Other health issues were taken into account and chemo wasn't an option so, like you, its just palliative care....which means pain-relief and moral support from Hospice in the UK. It's different in the USA, as you'd know from the care your Father received....I had to look up ****pedia to realise just how much of a difference in the meaning of hospice care between the two countries.
There is support on offer for my son, but I'm not so sure he'll avail himself of that help. He's my main worry. There's so much he doesn't understand. And like you, I have some logistical problems (housing and home-contents after a fire) which I've talked about in other threads, problems which will face my son.
Why do your doctors think you have had problems for years, with regard to shortage of oxygen and the cancer? Anything to do with clubbing of fingers?
I understand your loss of faith in the UK doctors who misdiagnosed you....I just hope you are able to arrange home-care soon, to support the medical care you receive. From my own experience, you'll not know from one day to the next just what this disease may throw at you, and with such alarming speed. Please research pain meds....there's a lot of misconception about "building up tolerance" in terms of lessening effect or relief. If you want to know which drugs I'm offered, just ask.
The sense of isolation hasn't really anything to do with geography, does it? It's this disease. I too am so thankful for this forum and the people who offer their support and prayers.
Take care, and you are in my thoughts and my prayers,
Hi Cee and Ellengrace,
I have not been on the posting board for a week so trying to catch up, but wanted to let you know you are amazing! I am glad you have found each other thru the posting board. I know there are not many on the posting board with cancer themselves, but caregivers. I pray you two can have strength to get thru the tough times. Just wanted you to know I am thinking about you two.
Hugs from Irvine,