On 26 March 2019, Lynne celebrated her 21st “lung-aversary ”. 21 years ago, Lynne’s right lung was surgically removed because of a large carcinoid tumour growing at the top of the right bronchus. It was so big there was only a paper-thin gap left for the air to enter the lung.
At first we thought I had asthma, as I had a heavy wheeze and a cough. I also developed a form of hives that occurred when my sweat made my skin temperature colder than my body temperature.
When I started to cough up blood, I had chest X-rays and a CT scan which showed up the tumour in my right lung. I was 32 years old and terrified.
My partner at the time was working in Canada so I faced the whole ordeal more or less on my own. I was pretty frightened but I’m also a very matter of fact type of person, so I took a lot of it in my stride too. My family and friends were also very supportive.
An endoscopy was performed to take a biopsy and then a full pneumonectomy to remove the tumour. I recovered from surgery at my Mum and Dad’s home. My partner came home from Canada 3 months after my surgery and I returned to part time work about the same time.
After the surgery, I always had problems at work because once my lung was removed I became very susceptible to colds and flu. I also developed depression. I took a lot of time off work and was often told “you don’t look sick”. I also couldn’t work full time due to fatigue issues. Over time all of these things developed into a vicious circle of getting more ill and taking more time off. These pressures also affected my relationship with my partner and it ended about 5 years after my surgery. Being chronically ill makes it very difficult to start new personal relationships. I have had two since then but the last one ended with the death of my husband in 2016 (we married in 2013) and I just don’t have the energy to get involved with anyone new.
I believe there needs to be more community awareness that not all people with lung disease were smokers. I never smoked a cigarette in my life. I got cancer. The two things don’t necessarily go hand in hand.
I retired from the Public Service in 2009 because I couldn’t cope with how I was being treated and I was exhausted. I was never able to work again due to my fatigue issues and in 2010 I was granted the Disability Support Pension. I keep myself busy but fatigue, depression and breathlessness still cause me problems. I now have a cleaner who comes once a week and a gardener/handyman who comes fortnightly to help me around the house.
I still feel like I can do anything until I try and then I find I can’t. I’m very independent and needing help for simple things has been hard to admit to. I find it very hard to ask for help.
I can’t say it’s been easy to adjust to living with one lung. But I am forever amazed by my left lung’s ability to take up the slack for its missing partner. I still have 97% oxygen in my blood. That’s better than some people with two lungs. I can still do a lot of things I love but in small amounts, with rests in between. There are a lot of things I miss, like work, going to the gym, and hiking. But I’m still here. I don’t know how long for but then, who does?
What’s important is to try to make the best of every moment in life. I fail at this frighteningly often. But I keep trying. I don’t give up.
Last year I attended a pulmonary rehabilitation class for eight weeks to get me fit for a trip to the Himalayan foothills in India. I thoroughly recommend the program for anyone with a lung condition. I found the education classes to be very interesting and lots of fun. I believe it should be compulsory follow up for anyone who has a diagnosis of lung disease because you learn so much at those sessions and can share experiences with other people with lung diseases.
In 2009 more cancer was discovered in my left lung and in 2017 it was discovered the carcinoids have started growing in my spine. I have a monthly injection to keep the cancer in check as further surgery is not an option. I take a fair amount of pain medication too. I was walking my dogs regularly until my cancer metastasised into my spine. Now walking can cause me a lot of pain and balance issues. I use a walking stick on bad days. My four cats and two dogs and my wonderful sisters help get me through hard days.
This is just life and the lot I have been given. I don’t think I am brave or that there is anything remarkable about me. I’m just a regular person doing the best I can. If I can do this so can you.
My tips for anyone recently diagnosed:
1.Lung cancer is not a certain death sentence. No one knows how long they will live, even perfectly healthy people die young or unexpectedly.
2. When you go to appointments make a written list of questions to ask your doctors and specialists and don’t leave the room until you have answers you understand. I write my list on my phone.
3. There are no stupid questions.
4. Get a pet from a rescue centre. They are wonderful support when you’re feeling lonely or sad and keep you busy and entertained.
5. Keep trying to do things you love and don’t beat yourself up too much when you no longer can. It’s OK to mourn for these losses.
6. Ask for help when you need it and make use of as many services as you can find. Your local council is a good place to start.
7. Even though it’s not a death sentence make sure you have a will, a power of attorney and an Advanced Care Directive in place, as sometimes circumstances can change very quickly. It’s much better to be prepared.
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