Hello My Friends
As some of you may know, I am working on a new feature for the Make Some Noise for Lung Cancer pages. I am calling it (for now, unless anyone has a better name?) “Survivor’s Corner; A Place for Hope”.
My goal is to profile LC survivors and their journey with this disease in order to give a more accurate portrayal of the disease. I also want to be able to encourage newly diagnosed patients and show them that there ARE survivors and that this disease can be battled.
The attached questionnaire is my rough draft of the “interview” process. I need and welcome any and ALL suggestions for additional questions, etc.
I am hoping to have an abundance of participants and will include them on the Facebook page as well as here on the main MSN4LC web site.
If you would like to be included, please answer the questions and include any and all other information you would like to share. Include a photo of yourself as well if you wish and email all of it to me at;
Thank you in advance for your help, input, suggestions and above all else, for being my friends!
With love and hugs
Here are the questions so far…
SURVIVORS CORNER; A PLACE FOR HOPE
When and how was your LC first diagnosed?
What treatments did you (are you still) have/having?
What side effects did you experience?
Are you still experiencing any side effects? If so, can you share those with us?
How did you combat those effects?
What would you MOST like to share with people about your experience with LC?
What advice would you give to newly diagnosed LC patients?
What advice would you give to doctors/PA’s/nurses who work with and treat LC patients?
What advice would you share with caregivers/family/friends about how to interact or communicate with someone with LC?
We all know about the stigma of this disease.. What would you do, if you had unlimited resources, etc to remove this stigma and make LC a more “acceptable” cancer?
Is there anything else you would like to share about your LC journey?Thank you so much for taking part in this program! I am indebted to you for all of your help and support of this new feature. And, if you know a survivor who'd like to participate, share this page with them!
Here is the first contribution to this new page! Thank you so much Patty!
I was diagnosed with lc on May 20, 2008. ( The day before my youngest son's 12th birthday ). I was having lower back pain and went to a facility were the removed fluid around my disk in Feb. 2008. The day after my procedure I developed pain in my left lung that went around to my chest. I went to the hospital on three different occasion. I was finally told that I had pneumonia and that they saw something in my left lung when they had done a chest x-ray. I was recommend to see a pulmonologist who then recommended that I go for a CT scan. My pulmonologist assured me that what they saw on my Ct scan was an infection left over from my pneumonia. Lung cancer didn't look like what they had seen in my CT scan. He recommended that I take a stronger antibiotic and see him in another few weeks for a follow up. I did that and was still not feeling better. When I went back for my follow up he had given me some more options. 1. continue to take more antibiotics. 2. go for a test called bronchoscopy to see what kind of infection I had so then it could be treated properly with the right antibiotics.. My family and I decided the bronchoscopy which is a test were they insert a scope into my mouth which leads to the lung. From there they would collect fluid to be tested. After having this test done, they still didn't find anything because where my "infection" was they were unable to reach it with the scope.This is were things got a little blurry for me. I know that I had this test done twice but not sure why. Finally I was sent for a biopsy. I was told by my pulmonologist that I had lung cancer and needed to see a surgeon. My husband, mom and I were shocked!! The doctor all this time was so sure that I just had some kind of infection that I had gotten when I was in the hospital getting the fluid removed from my disc way back in Feb.
I saw a surgeon were he performed a test called mediastinoscopy
which is a procedure in which a lighted instrument (mediastinoscope) is inserted through the neck to examine the structures in the top of the chest cavity, and a sample of tissue is taken. It is also used to assist in the staging of lung cancer. This is were I found out that I had stage lllB lung cancer and that I was unable to have surgery to remove the cancer.
Soon I had a team of doctor's to help me fight my lung cancer. This team was made up of three doctors. 1. oncologist 2. Radiation Oncologist 3. My lung cnacer surgeon.( who by the way smoked. Never could figure out how he could smoke after knowing and seeing the horrible stuff that goes along with lc) Treatments were Chemotherapy and radiation.
1.Chemotherapy consist of carboplatin and taxol once a week for 7 weeks.
2. Radiation 5 days a week for 7 weeks.
Side effects from chemo: loss of appetite, metallic taste in the mouth or changes in taste, some hair loss, very tired and nausea. For the most part these were all very mild symptoms for me.
Side effects from radiation:
Very sore throat. Burning throat. Very hard to swallow food or liquids.
I was given medication for my nausea and a liquid medication to numb my throat when I needed to eat. I also took folic acid and pain medication. I was put on ambien to help me sleep and Zoloft for anxiety.
After my 7 weeks I received a pet scan that revealed I had only a slight change of improvement. I had an appointment with my oncologist to talk about my next steps for a plan. He asked me if I wanted to discuss the statistic for my lung cancer. I told him no and wanted to discuss my future and the next plans on how to fight my lc. He kept telling me on how sorry he was. He blurted out that I was going to die in 5 years and had no hope for the future. He told me that eventual any chemo that I would receive would eventually stop working on my cancer. I sat there in shock along with my husband and mom. All I could think about was my two boys growing up with out me. I ended up getting a second opinion. This oncologist told me that I had many options and that he was not God and couldn't tell me or anybody when they would die. He was not surprised that the chemo I was getting didn't improve my lc because the kind of lc I had wouldn't of responded to the chemo. His suggestion was that I go on the following chemo every three weeks for 6 weeks:
I did and with each ct scan my lc was getting smaller and smaller. I did get very sick and ended up in the hospital to receive my three chemo's. It ended up that after 5 treatments of cisplatin I had to stop. We continued with avastin and altima for 3 years every three weeks. Finally in Nov. of 2010 we stopped my chemo's because my lc was gone! As of today Aug. 6th 2011 my lc is still gone!! I go to my oncologist every three months along with a pet scan.
My side effects when I was on cisplatin were: dizziness, light headed, tunnel vision, shakes, nausea and very tired.
Avastin and altima were: tired, flu like symptoms, some nausea and neuropathy.
I fought lung cancer for three years and couldn't of done it without the love and support from my husband, Mom, my two son's, my three step children and the rest of my family. They all took very good care of me, took me to endless Dr. appointment's, sat with me during hour and hours of chemo treatments, helped me with the housework so I could rest, cooked dinners, washed clothes, held my head over the toilet while I was getting sick etc.... and they NEVER ever complained. I also made some very good friends through online support groups and at Dr. appointment's who also have been supportive, understanding and helpful. I had so many people praying for me that I didn't even know. I have been so inspired with some of the people that I have met. They gave me so much hope and hope that I did the same for them. There also came a lot of pain from the friends who had past away. Then there were people who have been people who have been touch with someone who had lung cancer.
These people will do anything to get the word out about lc. These people are so amazing, caring and thoughtful. They are our hero's!
The advice I would give to newly patients would be:
1. Make sure you trust and feel comfortable with your Dr.
2. Get a second, third etc. opinion.
3. Ignore the statistics.
4. You can fight lung cancer and everyone is different.
5. Listen to what your body is telling you. For example: if your tired rest..
6.Find help online like support groups. This is easier than going out to a support group especially if your not feeling well.
7. Let your family and friends help you.
8. Have a positive attitude.
9.Have your tissue tested for what kind of mutation you have.
If you are a family member with someone who has lc please don't stop talking to them. Call them to check in at least once a week. Write a letter, email, send a card etc. Don't ask what you can do, just offer to do something. Help out the other family members who are taking care of the lc person.
In September of 2006 I was doing volunteer work at a local prison and went in for a chest x-ray since I test positive to the TB skin test. Two weeks later, the night I was being elected Area Chair for that non-profit group, I received the call from my doctor. The call came at the most inopportune time, in the middle of the vote electing me Area Chair. I knew though if I didn’t answer the call I would miss the opportunity to get the test results that would allow me the ability to do service work at the prison. I was told the x-ray showed a suspicious shadow on my left lung. I thanked my doctor for the information, but shared with him that I was in the middle of an important business meeting and I would have to call him back in the morning for more information. I know he was a little taken back by my lack of concern. I was concerned, but even back then knew I would be in charge and I would not let the fear of cancer control my life. Last September I finished a four year term as Area Chair and was very grateful to be able to perform my duties for the full term while fighting cancer.
Over the next year or so my doctors requested a number of scans and they took the wait and see approach. In hindsight I should have been a lot more aggressive in requesting testing to determine if the shadow was cancer. When the shadow on my left lung looked as though it had increased in size, my doctors requested a PET scan. The results of the PET scan showed the spot on my left lung was warm, but there was a hot spot on my right lung. It was decided I should have a bronchoscope to biopsy the spot which looked like lymph node involvement. This procedure failed to get the desired results. The needle missed the lymph node and although the fluid surrounding the lymph node did test negative for cancer we still didn’t have any firm answers. Again it was wait and see, a few months later I was given a PET scan and the area was still hot. I was contacted by my pulmonary specialist and told about another procedure that could be performed by a specialist in Santa Clara. It was also a broncoscope procedure, but instead of going through my nose they went through my mouth, into the lung and down to the lymph node for a sample of the tissue.
This was an inpatient surgery so my friend Tim took the day off from work so he could drive me to Santa Clara. It was two hundred miles round trip that day. I didn’t want to put anyone out, but the doctors refused to do the procedure without a driver being present in the waiting room. I am very grateful I had Tim with me for support on the long ride home, because I would sure need it. They were wheeling me into the operating room and Tim handed me a manila folder that had over fifty notes from members of our hiking group wishing me the best. I am guessing they were on the trail when it was being signed and that was all they had to write on. There was also a pair of surgical gloves attached with some writing; I can only guess what that said. Tim and I were laughing so hard the nurse must have thought we were crazy. The surgery lasted a couple of hours and I was told in the recovery room they had found a tumor blocking 90% of my bronchial tube and it was probably cancer. It was a hard pill to swallow, but I think deep down I knew it was going to be cancer. I have tried to keep a positive attitude ever since the cancer diagnosis two years ago. I don’t remember ever feeling defeated. It was more of a feeling of wanting to fight the cancer with every bit of energy I could muster. In 1998 I reversed a diagnosis of Dilated Cardiomyopathy with diet, exercise and supplements. I felt if I could beat that, I could beat cancer, or at least give it a good run for its money. In 1998 I was told I would need a new heart within 24 months if my condition worsened. My ejection fraction had dropped to 22, with 65 being normal. I was told if it dropped to 20 that I would be on the heart transplant list.
I know I went through the end of life fears at that time, so it wasn’t as hard this time around. One thing I did was put my affairs in order; this gave me some real peace of mind. I went down and paid for my cremation, got my will in order, collected all my important documents and made notes to my children with directions about all my accounts and what I wanted done with some sentimental items, like my mountain bike. In some ways life all of a sudden became much easier. My affairs were in order and I could focus my attention on living and beating cancer. I remember giving away some of my stuff, which I do not recommend. I gave my friend Steve my night light for my mountain bike because while I was doing chemotherapy I felt that I would never be strong enough to ride at night the following summer. Well I have lived much longer than expected and had to humble myself and ask Steve for my light back. Steve said he was never so happy to return something in his life. Now Tim on the other hand would not give back my water ski and vest, he said, "Tough, I gave it to him, so it is now his". Although I am sure he will let me use it when he takes me skiing in his boat this summer.
Life has become much simpler since cancer, I no longer worry about having enough money for retirement. I am more interested in where we are hiking, camping or riding each weekend. I met with my Radiologist and Oncologist within the week after being diagnosed. They were amazed that I had completed a 21 mile hike to the top of Mt. Tam and back just the week before they found the tumor. I had no side effects other that being a bit short of breath, but I hike with people half my age and at 58 being out of breath after 21 miles could be considered normal. They told me probably the only reason my lung didn’t collapse was due to all my hiking and mountain bike riding. The lungs have no pain sensors, so it is important to get regular chest x-rays if you are at risk for lung cancer so it can be caught in its earlier stages. I was diagnosed on 6/23/2009 and had my first radiation treatment on 7/23/2009. Their main concern was the tumor blocking my bronchial tube and the threat of the lung collapsing if the tumor shut off the airway. I was scheduled for 15 treatments. I was also scheduled for a needle biopsy on my left lung to see if that was also cancer, if the cancer had spread to both lungs that would rule out surgery. I was very fortunate that my friend Dawn from my bicycle spin class at 24 Hour Fitness was a scan technician and assisted on the CT guided needle biopsy. She was a great comfort during the procedure and she held my hand while they guided the needle through my back and towards the lung. The procedure had to be done three times to get the correct position. I think the only reason I didn’t cry out in pain is because I would have been embarrassed with my friend Dawn assisting.
I have tried to keep a sense of humor through the past two years of radiation, chemotherapy and a multitude of tests and scans. I asked the nurse while he was hooking up my IV for the needle biopsy if that was for the morphine, he laughed and said you won’t be getting any morphine, they want you alert. I was alert and felt everything including when he nicked the bone with the needle and I just about jumped off the table. The doctor commented after the procedure he had never poked someone three times without collapsing a lung. I took it again as a tribute to the shape I was in when I was diagnosed. I had hiked with our hiking group EAST/NORTH BAY Adventures and Explorers every weekend for the past year and we would average 15 mile hikes most weekends. The needle biopsy came back positive for non-small cell lung caner (NSCLC). Because it was in both lungs it was classified as Stage 4 and this ruled out surgery of any type. I was then scheduled for six rounds of IV Chemotherapy of Taxol and Carboplatin. I have been very fortunate to be surrounded by an unbelievable support group these past two years. My friend John, who is also in my spin class was diagnosed with Stage 3 non-small cell lung cancer in 2006 and had been in treatment for over a year when I was diagnosed. John had gone through or was going through everything I would be. John told me about a new drug he was receiving with his treatment in addition to Carboplatin and Taxol. It was a new drug by Genentech called Avastin. I became my own advocate and pushed to have it added to my mix.
On 9/1/2009 I started my first cycle of IV chemotherapy, Avastin, Carboplatin and Taxol. I think it is important to feel confident in the treatment you are receiving and that you are getting the best possible treatment. I was very excited about my mix and it showed in my attitude, I went in feeling I could beat this beast. I had heard about people losing their appetite during chemotherapy due to the Carboplatin being in the mix. Carolyn, Our bookkeeper at Scott Technology Group had told me about a procedure that her chiropractor in Windsor was doing to cleanse the organs and blood. It was a warm foot bath called an Ion Cleanse. I would have one done before each treatment and I never lost my appetite during the entire process. I was nervous about going in for my first treatment not knowing what to expect, but I found out that Oncology nurses are some of the most dedicated people I have ever met. The team at Kaiser Santa Rosa is very warm and professional. I finished my last treatment in May of 2010, but still go by the Infusion center whenever I am in the hospital just to say "hi" to everyone. They have a hard job and do it well. I feel it is important to let them see the positive results of their work. I always share my latest adventure with all the nurses.
My first six treatments of chemotherapy were every 21 days and it would take about five hours to administer. I would go in around 10: 00 AM on Tuesday and would finish around 3:30 PM. My employer Scott Technology Group was great. I am their Business Development Manager and most of my work is done on the computer. They furnished me a wireless card and allowed me to work from the infusion center so I didn’t miss any work. The nurses at Kaiser were also the best, they knew I was going to be working during treatment and always had a chair in a quiet area reserved for me. Chemotherapy was no cake walk. I was probably in the best shape of my life when I was diagnosed and the chemotherapy still wore me out. The treatment itself was fine; I was given steroids to help my body accept the chemotherapy drugs. I felt so pumped up that when I finished the drip I was calling around looking for friends to mountain bike with me, but within 72 hours it was a different story. I will try to describe the feeling. I would have my infusion on Tuesday and would feel great up until Thursday evening. Thursday evening I would start to feel achy and head to bed. On Friday morning I would wake up and it felt like someone had beaten me with a baseball bat while I was sleeping. I remember my friend Peter had a camping and hiking trip planned at his property in Fort Bragg. I had my infusion on Tuesday and had an eight mile hike scheduled that following Friday, which was my dark day, the day you feel the worst. I finished the eight mile hike, but almost had to be carried the last mile. After that I learned to take it easy on my dark day.
I finished my last chemotherapy treatment on New Year’s Eve of 2009. I was looking forward to some time off from chemotherapy although I was going to start oral chemotherapy, a new pill called Tarceva. I was scheduled for a CT scan on 1/15/2010 to check and see if there was any progression of the tumors in my lungs. Well when I met with my Oncologist the following week he asked if I wanted the good news or bad news first. Of course I wanted the good news. Good news, the tumors in my lungs were still stable, bad news the CT scan was showing two nodules on my liver. Well so much for a break from IV Chemotherapy. I remember feeling really down at that point, but was resolved to fight this beast. On 1/29/2010 I started my first round of Genzar. Two weeks of infusions, then one week off. I would be scheduled to receive six cycles of this treatment. I remember it was hard keeping a positive attitude thinking the cancer had spread. I have a lot of great friends and family and they were very instrumental in keeping me positive.
I continued to hike and ride all through my treatments and I feel this was important to keeping my spirit up. I was not allowing the cancer to change my life style. My friends Tim and Steve and my girlfriend Shelly and I would ride with other members of our biking group after work in the local mountains. We would have a picnic table at the top and we would stop for a quick break before heading to the lake. It was a running joke to give anyone that finished after me a hard time. It was always, "wow, Don has stage 4 lung cancer and you can’t even beat him up the trail". I feel joking around about my cancer allowed others to feel safe discussing my situation. I have found over the past two years that cancer is a subject some people just are not comfortable talking about. Half way through my treatment of Genzar I was given another CT scan. My friend Tim accompanied me to the appointment with my oncologist. Tim and I both remember my oncologist’s body language that day. We were both in the room waiting for my doctor. When he came in the room he grabbed the CT scan report and started reading with his head down. We remember him shaking his head and we thought here comes the bad news. Instead he looked up and said my liver scan was clean. I remember thinking, "Thank You God". I had a renewed energy to fight. I think Tim and I left the office that day and went for a bike ride.
Even though my liver was clean my doctor had me finish the last three cycles of Genzar. My treatment was completed the end of May 2010 and I was able to start rebuilding my strength. I was pretty weak after almost a year of radiation and chemotherapy, but was excited about the break from IV Chemotherapy. We would spin two nights a week, ride two nights a week in Annadel State park and hike or ride on the weekends. In the beginning I would need to stop five or six times for breaks on our two hour ride. As I got stronger I was able to take less and less breaks until I was able to ride the entire loop without a break. June 23, 2011 has been two years since I was diagnosed with lung cancer and I am still stable. I go in again at the end of the month for my eight week CT scan. I always get a bit nervous before my scan because I know everything can change with a blink of the eye. I have been using the time since I finished IV chemotherapy to build back my strength so I am ready if I have to start IV chemotherapy again.
On August 7, 2010 I was organizing a hike for our hiking group EAST/NORTH Adventures and Explorers and met a wonderful lady, Shelly Hooper. I had not been in a relationship in the last two years and had figured after being diagnosed with cancer that no one would want to take on that type of heart ache dating someone that was terminally ill, but Shelly was different. We hit it off immediately and we both had a passion for the outdoors. I explained to Shelly when we started dating that with Stage 4 Lung Cancer I couldn’t promise her anything long term, but I could guarantee her some fun and exciting adventures while I was still healthy. Shelly is a very special person and was fine with the situation. I have spent the last eleven months holding up my side of the agreement. We have spent numerous weekends hiking and biking Lake Tahoe. One of Shelly’s first rides was the Flume Trail in Lake Tahoe, an awesome experience. We spent last Thanksgiving tent camping in the snow and hiking the trails in Yosemite in the snow. We took a week off between Christmas and New Years last year and went to Bend Oregon hiking and snowshoeing. We went snowshoeing into an almost frozen waterfall outside of Bend. We also spent a night snowshoeing O’Dell Lake in blizzard like conditions. In May of this year Tim, Steve, Shelly and I and a few others from our group went to Moab, Utah to mountain bike ride and hike. I had been there in 2006 and never thought in my wildest dreams I would be able to return and ride after chemotherapy and a diagnosis of Stage 4 Lung Cancer. But I did and we had a blast.
As I am writing this I am planning a trip over the fourth of July to my friend Tim’s property in Laytonville. He has 500 acres of land and that is our get-a-way if we have no other plans on the weekend. We will be taking a day and riding Paradise Royal Mountain Bike Trail on the Lost Coast. I have been blessed with great friends and family and feel that has allowed me to keep a positive attitude through this cancer journey. I always set short term goals to give me something to look forward to. Riding in Moab last May was one, my son Mike and Stephanie’s wedding this September will be another one. I told Mike 18 months ago when he set the date he was setting the bar pretty high since I was already stage 4, but it looks like I will be in the wedding. I've already paid for the Tuxedo. My daughter Christa Gail and her husband Tyler had their second child on July 15th and my second grandchild. I have a granddaughter Ella who is five years old and now she will have a younger sister. Seeing my children and grandchildren is incentive enough for me to live strong. My good friend and spiritual advisor Gerry Baptist passed away a few years ago from cancer would always tell me, "Don, this thing we call life has no rewind button, so go out and live every moment to the fullest". I received a scan on 8-24-2011 and was still stable. Be well……… and stay strong. Don
It was 12/10/1998 yes that's more than 13 yrs ago. I developed pneumonia. The usual course of anti biotics and away it went. I was a caregiver for my mother who was in the final stages of dementia. My mothers sister was also in the final stages of ovarian cancer. My best friend was dying from colon cancer. They all would die before the Fourth of July 1999. My wife had to have an emergency hysterectomy in August . During this time I had developed 5 different instances of pneumonia in that same period. My wife before she went in for her surgery said I should go and get something for my latest pneumonia before she went into he hospital because with three children at home someone had to be able to take care of them. So being the dutiful husband I went to see my physicians assistant who was my primary care. He sent me for more X-rays and once again you have pneumonia. Again?! This time there is a spot that concerns us. Come in and have a broncoscopy tomorrow. Ok. My wife's surgery was also that day. She was in one hospital and I in the other. She did well. I told her I was still being tested and I felt fine. Of course I lied. Felt scared, nervous and alone. I had the broncoscopy and the pulmonologust who did it was as warm as an ice cube. He did the test and ran out of the room before I could ask anything. He came back for his glasses. I grabbed his arm and asked him if I should be worried. Yes , call me Friday. It was Tuesday. He was an ass. Friday called him and he said you have a tumor come in Monday And we'll discuss it. My wife who couldn't drive because of her surgery and I was wreck. So had my father in law drive us and we all went in to the little exam room. I had a tape recorder with me that I told him I had and he said he wouldn't speak until I turned it off. Remember I said , ASS, I mean it. I turned it off and all he said was " You have Lung Cancer, any questions?". Questions???? No, I honestly couldn't think of one. I was 39 with 3 children 9, 14, 16 and a wife. I'm self employed in a physical job ( landscaping). 10 employees. I pay my own health insurance. In other words, I felt I was screwed! It took them 2 months to get all the testing done. Oh and the HMO who was my provider laid off my PA! He cost them to much money by ordering to many tests. Haha. If he hadn't I would not be here today. Ok moving on, I started chemo 5 rounds, 39 rounds of radiation to my right lung. The tumor was at the main bronchi and the two lower bronchi. The cancer was Non Small Cell Lung cancer with squamous cell. Almost 100% caused by Smoking. I was staged 2A then. Surgery was done in April of 2000. They removed the two lower lobes of my right lung and the lymph nodes in the center of my chest. When they tested the nodes they were positive for cancer. Just like that stage 3A. Never would have done the surgery if they knew that before. After that no further treatments, none, nada , nothing. Through all of this I had to work and make a living and pay my health insurance.
Ok so off I go into the survivor sunset looking like I had this so under control. Well way back then in the ice age of lung cancer treatment there came a new test called a PET. A what ? You heard it right, a PET. This new test is supposed to tell the docs where the cancer is before its even cancer! Wow! Sign me up. Oh it's so new you have to wait another 6 months. I should have known when my oncologist recommended it but my primary care says not so fast. I think there's to many false positives. Maybe John you want to wait. No I'm out from my surgery about 9 months and I want to know the future. I mean what cancer survivor doesn't want to know.
My story started in 1981. April 1st and in the morning too. We just laugh about that now. My mum took me to our doctor because she ‘didn’t like the look of me’. Turns out she was very right to do this. I was 17 and had been an athlete at school but had started to lose weight and just become lethargic. How my mum spotted this and didn’t assume it was just 'being a teenager' I will never know... Anyway the doctor took one look at me and told me to go IMMEDIATELY to the hospital to see the specialist who just happened to be running his clinic that day..... I don’t like to say it was a stroke of luck but it really was. This was the guy who, 8 days later, was removing a big tumour and the top lobe of my left lung. Nice and quick and no time for me to think. Turns out later that my parents had been given horrid news. The surgeon was to open me up and look. If it was inoperable I had around 10 weeks to live. That cant have been nice at all. 3 days after my operation they turned up to the hospital to find an empty bed. Well, there was motorbike racing on the TV so I’d persuaded the nurses to stick me in a chair in the TV room along with my drip and 2 drains. Completely forgot my visitors but they found me J .. In the October of the previous year I had bought my first motorbike and I was loving it. A little 100cc bike but it was new, paid for and mine. Turns out this bike and it’s replacement became an integral part of my treatment as my incentive to get over each course of Chemotherapy. The doctors and nurses tried to talk me out of it though. Who can blame them really ?
So I got sorted and left hospital with one lung, a rather cool scar on my back and a future that was going to be shaped by some incredible experiences. I use the word ‘incredible’ in its precise meaning. Some of the stuff I got through I cannot believe looking back.
Right then. Next it was my journey through cancer treatment. I was lucky enough to be sent to The Christie Hospital in Manchester. At the time it was a huge centre for cancer research and my reason for being accepted was that my cancer was a bit strange and took a while to properly diagnose. The Christie hospital was a place I would get to know very well in the next 4 years. That was how long I took to be cured.. I rarely went completely to plan with any treatments and the toll on my family and friends must have been awful. I was constantly in and out of hospital during this time and barely had time to look around or think about anything.
Its at this point in writing that I have to refer to the notes I have from Christies. When I say ‘notes’ I actually have hospital notes copied to take me through my treatment chronologically. Reading them has opened my eyes to a lot of things. There are things I had forgotten, there are things I remember, there are some surprises ( both pleasant and unpleasant ) and most importantly it’s a medical diary that I didn’t have the means to record at the time. For some people it might be strange that I have spent a good amount of money getting these notes. Its taken me nearly 30 years since my all-clear to even get them. I’m still amazed at the emotions I felt reading through them. I mean really strong feelings of sadness in places and also even sadder for my family. They went through hell and I hadn’t realised much of it until I read these notes.
Here goes with a diary of my time at Christies. Could take some time. The A4 notes I got from them is over an inch thick and is nowhere near all the records they have. I just asked for notes that would act as a diary of events. Lets see what I can remember and maybe save the huge amount on notes for later. If I start using them I’ll never get this ‘short’ story finished. You’ll have to wait for my book J
OK . The three and a half years of constant treatment were a bit of a blur.. We started with the lung removal. After that I obviously had a few weeks to recuperate. We then got to Christies ( The Christie Hospital and Holt Radium Institute, Manchester ). I had an appointment and was told the starting point for treatment was a full diagnosis of what exactly my cancer was. In the meantime, as a seventeen year old, they needed to preserve my ability to have kids. Most chemotherapy at that time would severely ruin my sperm count and it might be permanent. This meant a few visits to St Marys Hospital ( just up the road from Christies ) where I did what I needed to do. I’m sure you don’t need a description or diagram. To this day I have potential kids frozen in liquid nitrogen in Manchester. That’s probably enough details about that.
Diagnosis of my cancer came through in May after my few weeks of recuperation. I was awkward, difficult, challenging but eventually Hodgkins Disease was confirmed. There were lots of other little things attached to it but that will do as a dignosis. The other stuff had lots of latin names that just add to the confusion..The treatment began.
The first course of chemotherapy was the only one planned. This was to be followed by radiation to my chest and then clear they hoped. Nice and straight forward…. But it wasn’t …
During the next 3 and a half years I had 5 full courses of Chemotherapy each lasting from a few weeks to a few months. I found most of these , when administered, bought on an instant depression. I became annoyed at everything , including myself. The good thing was that I taught myself to go to sleep when I felt nauseous. I can still do this today which has helped me through many hangovers. Another charming side effect was hair loss. I lost my hair twice but , as a bloke, I just ignored it most of the time. Being a motorcyclist I just noticed my crash helmet didn’t fit as well though. A genuinely lovely thing was when it grew back . The downy fluffy hair was lovely and led to a few people stroking me like a cat. There weren’t many good things going on so the occasional head-grope was most welcome.
Due to various treatments lowering my body’s resistance there were a few additional stays in hospital because of dehydration and blood poisoning. With all the checks and treatments my family really didn’t need any more trouble from me. They got it anyway. I think my longest hospital stay was due to blood poisoning. This included ALL treatments including operations. Amazing how the cure came closest to killing me.
After a lump came up in the right side of my neck in 1982 I had an operation that removed it along with the main front neck muscle and some lymph nodes from the front right of my neck. It was confirmed as Hodgkin’s Disease ( again ) and just added to the amount and type of treatment I had . To this day it leaves my neck very weak and means shirt collars don’t fit well.
Radiation treatment. Well. This was boring and the after effects creep up on you. I had 16 days of 2.5 mins in my first course. These were centre chest and carried out Monday to Friday. During the week I was an inpatient at the hospital. The ward had a nice day room with a snooker table and was comfy enough but very dull for an 18 year old. There were very few home entertainment options available in the early 80s.
The second course of radiation I had was 15 days . Once again Monday to Friday but these were targeted as high as my cheeks covering both sides of my neck. During both courses I did feel quite sick a lot of the time and it took a few months to die away. In the meantime the nodes in my neck had become a bit ‘cooked’ which added to the scar tissue causing a stiffness that remains. The early course irradiated my thyroid and over the next years it gradually gave up. I now take thyroxin daily. Another bad effect was my teeth. The higher course of radiation had been up to my cheeks and I was told that this would weaken my tooth enamel. Despite best efforts my teeth ( 30 years on ) are a bit of a battlefield. A battle I will lose eventually and have to have false ones. The flesh in my mouth is still very sensitive and anything more than mild spice has me in a lot of pain.
In a nutshell that’s the treatment. Not much if you write it quickly. BUT!!! People reading this should be aware that this isn’t how things are today. This is my treatment that was 1981 to 1984.
Operations are probably the same. Modern technology will mean less very invasive surgery but a lung being removed still removes a lung. Simple.
Drugs are now better. More refined and there are many new ones being used. This has both helped with the effectiveness of the drugs and reduced the dreadful side effects. The Christie Hospital where I was a patient was more of a laboratory than a hospital in the 1980s. I was there because I was an interesting/challenging/awkward case. I remain awkward to this day .
Radiation therapy is a lot more directed and precise these days. The collateral damage to healthy tissue is greatly reduced. It’s the thing that has given me the most problems in later life.
Mental health and happiness were a problem when I was having treatment and for years after . My stays in hospital were very tedious. These are the days before Video recorders , DVDs , video games and the internet. Imagine that J
Support groups were sparse and simply getting a group advertised was a major thing. Once again , no internet. The main help I got was just chatting to other patients on the wards or the exceptional staff at Christies. When I say exceptional I really mean it. The best nurses I have ever seen who nursed people both mentally and physically because the mind is as important as the body when battling cancer.
These days there are many groups to help and the proliferation online is wonderful to see. People need a place to go. People need to feel that they are talking to people who REALLY understand and people who can EMPATHISE .I cannot stress how good it feels to be truly understood. With all the good will in the world you cannot fully explain how you feel to friends and family . Similarly the friends and family go through a trauma that is at least as bad as the patient experiences. This trauma is different and they need support too. It wasn’t until I read my hospital notes through that I realised just what my family did for me. For my parents the hours and hours of driving simply to visit me after a day at work. During these days the stress of me being ill would have been a constant worry. There were the many days off work they had to take for my appointments as an outpatient too. I really don’t know how they did it. I am in awe of them. They are super-human in my eyes.
What else to write ?. So many things I can expand on. So many things I could add.. My insistence on riding my motorbike when I was well enough. The way I changed completely in the time I had treatment. Some of it’s a bit of a blur. Other stuff is clear in my mind. Some of it , despite everything , was fun. This could mean I have to write a book because the brief nature of this story is frustrating me. So much more detail and thinking for me to do. Then I can maybe exorcise a few of the negative feelings I get. Better still is that I can maybe help people by letting them know that over 3 decades ago CANCER PATIENTS SURVIVED !
I too am a lc survivor . Itwill be 5 yrs in march.
I initially went to emergency room due to sharp stabbing pain in my lung . I thought it was pneumonia
because my lungs were very congested but was told the xray looked ok and they sent me home .
A few hours later that day they called back and asked me to come in for cat scan . That scan showed the cancer.
I was told that I was lucky and caught it early . The tumors “hide” or are just too small to see .
I'm not sure , but if lung cancer is the #1 cancer, then why not do cat scans automatically?
It's scary enough never mind if you don't feel secure with your treatments. I only had radiation after
surgery ,but mishap in surgery made me paranoid about radiation and it was awful. I didn't complete
my treatments because I felt like my body could not take anymore.
From what I researched I come to the same conclusion; listen to your body .Ask questions and keep
asking until you feel comfortable with your treatments and doctors are human and can be wrong . We
are all so unique that you can't compare patients and this disease. Cancer has a mind of its own and is
very unpredictable. We have to outsmart it by giving our bodies what it needs ; exercise, clean water,
healthy foods, sunshine, and try to keep stress to a minimum. Prayers help also. It's a tough battle, it's
war . Not everyone makes it .
Maybe someday there will be no more cancer and no more war.
Hi there . LC survivor here from the UK . Treatment for LC continuosly April 1981 to August 1984. Side effects are many and varied after Chemotherrapy, Radiotherapy and operations. I'm not a person to hold back on what I tell people but much of the treatment I had will not now be used or will be greatly refined. My story is thatt there is a long future after treatment but its not all good news. Some of my side effects are quite severe at times. I'm just not sure that me writing my story truthfully would be of help despite me being 28 years clear of LC. Much love to you all xx
I want to get some points across for LUNG CANCER AWARENESS. Now although this relates to my diagnosis I saw so many people posting things on blogs that said their Doctors told them they had nothing to worry about I feel a need to influence. After you read my story please remember to ask your Doctor to go the extra mile if you are at risk or just want to know. First let me say I have two parents that both died of Lung Cancer. My father died first and he was a non-smoker, and my mother 5 years later and she was a 55-60 year smoker. I have smoked and quit many times throughout my lifetime but I was not a heavy smoker and haven’t in years. In July 2006 I went to the Doctor because my Primary Physician thought I might have a hernia but wasn’t sure so she ordered a CT of my abdomen. I had the CT done and went back to see my Doctor and she said I did not have a hernia but that I needed to see a Thoracic Doctor because the CT picked up some spots in both my lungs. That night I went home and looked up Thoracic, what did I know I was an electrician! I went to see this Thoracic Doctor and he had ordered a new CT and examined it and told me that I had nothing to worry about because Lung Cancer never started in both lungs simultaneously. I was very relieved. He did however say that just to be safe every three months I had to have a CT of my lungs until he told me different. Through the next 4 years I had CT’s every 3 months and my lungs had more “nodules” as they called them and a significant amount of something they specify as Ground Glass Opacities. Still I was assured that it wasn’t cancer or something would have grown by now. The original nodules had no significant change. Then in January 2011 I had one last 3 month CT and before my Doctor saw the results he said let’s switch to every six months and I said if that’s the right thing to do then that was fine. Now keep in mind I had 3 different Doctors during this period and they were all concurring with each other. I was Active Duty Military and then the last Doctor was at the Veterans Hospital. All wonderful and highly qualified in their professions. I got home and was happy I would be having less CT’s until the next morning. I received a call to come see my Pulmonologist right away. I was told one of the original “nodules” was now a great big tumor. So in a nut shell for almost 5 years it sat dormant then since my last CT 3months prior it grew wild. I was told without a doubt it was cancer and needed to see a Thoracic Surgeon now. I did and a biopsy was done and it was indeed an adenocarcinoma. I was scheduled for an upper left lobectomy the next week. When I went into surgery my Doctor had done some great math on his white board in his office about my survival rate. He said this is stage 1A and after I remove this I feel certain you will go home cancer free. I felt positive, upbeat and happy because I had a great surgeon and a great prognosis. The surgery ended up taking a lot longer than expected because of some scaring that made the lung harder to remove. However I left the hospital a week later with a positive prognosis and a lot of pain, those rib-splitters are no joke. I was home a week when my Surgeons Nurse called me and asked me if I could come see him today. I was very friendly with her and asked her what was up and she was very tight lipped and just said come on in the Doctor wants to talk to you. I made it in record time and my Surgeon sat me down and said Mary I’m sorry and I just burst into tears because I knew I was in for a fight. My lung pathology had come back with two separate types of lung cancer and all the removed lymph nodes were also positive. Not at all what was expected because nothing was PET positive, EVER! I was sent for a lung biopsy right away on the “nodules” in my right lung lobes. They all biopsied positive. Then they realized I had a nodule in my adrenal gland and by the time I got to the Oncologist to start Chemo I was stage 4. I had chemo every week for 5 months and had absolutely no change. I am feeling rather well today as I have for some time because I am not having Chemo or Radiation at the moment. I can’t explain why but I have so many days that I would just love not to have to get out of bed because I’m
tired, nauseous, or in pain, but I have many good days where I feel like there is nothing wrong with me, then I look at the stairs and remember I can’t walk up 4 without stopping! I am blessed because I have a 15 year old that makes me want to live more than any other thing in the world. I have the world’s greatest best friend who is there for me at the drop of a dime and two loving sisters that stay on top of taking care of me. I have other family and friends that help and keep me upbeat and remind me why I want to fight every day. The real reason I wanted to write this is that I have read a few things on line, mostly at the beginning of my diagnosis and they trouble me deeply. That is probably why as I was finally finishing my Bachelor’s degree last year I wrote an argumentative essay on Cancer funding and the lack of equality in it, my Professor thought it was so good she asked me if she could use it as an example for others. I was proud to share it because it also got the word out. The reason I placed quotations around nodules in this paper is because far too many people are being lead to believe that nodules in the lungs are nothing to worry about. I am sure that may be true in some cases but don’t take that as an all-inclusive answer from your Doctor. If it’s there and it is capable of being guided needle biopsied ask for it. It is a conscious sedation procedure that although not fun is not any worse than a root canal. The risks are low compared to the benefits of early detection. Lung Cancer is such a MAJOR killer because it is so often diagnosed to late because there are few symptoms. Of course every day I see new procedures coming out for earlier detection but I know this is readily available now for those of you that may be wondering and from what I have read there are tons of people with these lung nodules. I have been told I could live 6 months or twenty years depending on if my other nodules start to grow but I am opting for twenty plus. I have a lot of traveling left to do and a lot of Grandchildren to see born. Health and Happiness to all.
Mary Margaret Thomas, Hampton Virginia
I was dx in Sept 2010. I didn't really have any symptoms except I just didn't feel right and when I would stand up, I'd get really dizzy. After being treated for 4 months for an inner ear problem and nothing was changing, I went to another doctor. She told me altho she didn't know what the problem was, it had nothing to do with my ear so she sent me to a heart specialist. He came in, talked a while and set me up for a stress test and about three other tests and left the room. In a few minutes he came back in and asked are you really a truck driver?? lol I told him I was and he said ohhhhhh, well lets change this because it is very well possible you could have a blood clot in your lung so lets go to the hospital for an xray. Went to the hospital and within an hour knew what the problem was. He said well, the good news is you don't have a blood clot BUT you have lung cancer. Needless to say it that blew me away! Sent me to a pulmonary doctor that did a biopsy and told me it was so new they could 'fix' it easily. Well, a couple weeks later I am told I have stage IIIb and treatments are my only choice, surgery isn't a possibility because of location. I told him nooooo, you can't tell me that because I can not tell my family that.( I have to admit that the pain and treatments and everything else wasn't as bad as seeing the pain in the eyes of family. I can handle what is happening to me, but it is hard knowing I'm causing them so much hurt in wanting to 'fix' it knowing they can't. ) So on I go for six weeks of radiation and chemo and at the end we decided to try for surgery. The surgeon came in and said he could possibly do the surgery but he couldn't say for sure until he got in. I told him nope, that's not an option, if you try, you have to get it. The morning of the surgery he came in and told me again, I'm going to try and get it. Again I told him no trying, you have to do this and I asked if he believed in God and he told me God would be there with us both so I knew he had some help! It was Dec 2010 I had the surgery. Removed upper lobe of right lung, part of bronichial tube and a bunch of lymph nodes. Went in last week for a ct scan and onocologist said things are looking good. You will notice I don't use medical terms, names of meds and such because of the simple fact they scare me. I told the doctors from the beginning, the less I know, the better off I shall be. I asked if they would only answer questions as I asked and not tell me what could or in their opinion what would happen. I have to say, I have some great doctors, very caring and they've put up with me for a couple years so yeap, they are special! hahaa For now, I'm doing ok, life isn't the same as before but I guess it never will be. Breathing is harder than it once was BUT I can live with that because I'm still breathing. I can't do some of the things I use to be but hey, I'll take that as well because it's so much I can do. I hope and pray one day there will be a cure for not only lung cancer but all cancers because it really puts a bump in the road for us to try and get over it. All in all, I'm a lucky one. I'm surviving and with the help of the good Lord and my doctors, I shall continue. Have a good day everybody and stay positive! My doctors tell me all the time they have to change their 'mood' when they come in for a visit with me because they forget when they walk in I'm going to be smiling and happy. I tell them you have to be happy otherwise it will consume you and take over.