How I got here: Last year I had a... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
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How I got here

Glitterpink_18
Glitterpink_18

Last year I had a pretty horrific midriff hernia repair and reconstruction from which it took months to recover. I had a ct scan done at that time and a couple of small nodules were found on my right lung. No one seemed concerned and I was told I would have a followup scan this summer. In the meantime, my 73 year old sister was diagnosed with non-small cell adenocarcinoma of her right lung and a gtound-glass type of cancer in the left lung. I took her to as many of her appts as I could. She had an upper right lobectomy followed by radiation on her left lung. She has continued to smoke and will have a followup scan in Oct. Then our youngest brother's live in girlfriend was diagnosed with small cell lung cancer which is terminal. She is undergoing palliative treatment and joined a case study. In the midst of all this family trauma, I was sent a reminder to have the followupscan from last year. I really thought nothing of it. But two days later I started getting voicemails to call the hospital lung specialists. Even the surgeon who had done my hernia repair called me while he was on vacation. Then I knew it was bad. He said there was a new spot and he ordered a PET scan. When I went to see the pulmonologist two spots appeared active, one on the lung, one at the furthest end of the colon--the cecum. I was scheduled for a colonoscopy right away but it was incomplete due to my redundant colon, it was too long and loopy for the scope to reach the end. I woke up and cried. Then I saw the thoracic surgeon who recommended a robotic assisted upper right lobectomy. But she also wanted me to have another colonoscopy to make sure everything was ok on that end. I had also had a barium enema that showed no growths or lesions but the thoracic surgeon didn't trust that. So I delayed my scheduled lobectomy because I wanted to be sure my colon was ok. To my relief, I didn't have a single polyp. I had the upper lobectomy on July 13 (Friday!) and all went well. I was the only child out of 8 who never smoked, so my lungs were in great shape for the surgery. My lymph nodes are clear and I'm Stage 1. Since I've been home I find myself very depressed and cry a lot which doesn't help with my reduced breathing capacity. Then I started coughing a loud, heaving kind of cough that seems to come more from the hernia repair spot which hurts so much when I cough. I am starting to fear that the cough will be around a long time. So discouraging. I started wearing the binder I wore after my hernia repair because I'm afraid the surgery will need to be redone. And my breathing terrifies me. I have trouble sleeping at night. I keep praying that as time goes by, things will improve. I try to show a brave face to my family, since they're all going through so much. My drs have been great at giving me medications but they don't seem to be helping. Has anyone had any of the same experiences? Will I really be able to breathe and live a normal life again? I'm 63 and retired early 4 years ago to enjoy my my sweet little cottage in my hometown. Life was wonderful before this nightmare started. My great-nephew is getting married out of town at the end of August and I hope I feel up to attending. Thank you for your thoughts.

2 Replies
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RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Glitterpink_18

Welcome to the forum and so sorry to hear of your own health and families, all at the one time.

It is encouraging that it is grade 1, nothing in your colon and no spread in your lymph nodes. However, the whole journey must have been quite a shock and everything moving fast, it is normal to have a delayed emotional reaction, especially after you have supported your Sister and your Brothers girlfriend being so ill. You must be emotionally exhausted.

Lung cancer, unfortunately does not distinguish between smokers or non smokers, and it is good that yours was found very early.

Your cough is not expected to last a long time after your lung surgery, however the pressure that will put on your hernia repair site, do go to your GP or specialist to have this reassessed.

I have placed a link here from our website on lung surgery and the recovery period, which can take up to 12 weeks to achieve your full fitness level. Breathlessness is part of the recovery and if you are anxious or feeling down, this can affect your breathing.

roycastle.org/system/file_u...

The Roy Castle website has lots of useful information on living with lung cancer and support you can obtain: roycastle.org

There are support groups for those with lung cancer and their friends/relatives, you can find one in your local area from this link:

roycastle.org/how-we-help/s...

Perhaps speak to your GP on how you are feeling, and that you feel your medication is not helpling.

Things will get better and will pass. You may find a counsellor will help you get through this difficult time for you; as you know being strong for everyone else can impact on your own emotional health and wellbeing. But you are just as important and need to find the right support for you.

I have placed some helpline numbers below where you can find support:

Roy Castle Nurse Helpline - 0800 358 7200 roycastle.org

Cancer Research UK - 0808 800 4040 cancerresearchuk.org

Macmillan support - 0808 808 0000 macmillan.org.uk

Maggies Centres - 0300 123 1801 maggiescentres.org

Anxiety UK - 08444 775 774 anxietyuk.org.uk

Be enouraged, you can and will have a normal life and start looking forward to the wedding, pamper yourself and buy something special.

If you wish to discuss anything please call us on our free nurse led helpline number

0800 358 7200

All the very best

The Roy Castle Support Team

Hello Glitterpink,

So sorry to read of your experience of lung cancer. It is natural after all that you have been through to be 'down' and cry - this can be the shock of having lung cancer, especially being unaware that anyone can develop it but also having other family members who have the same condition. Coupled with your hernia experience, this will have caused considerable anxiety - being pushed from one department/consultant/oligist to another can be very stressful so the tears may also be relief at a) not having polyps or growths in the colon, b) having caught the lung cancer at an early stage and c) anger or any other emotion at the whole situation. The coughing may be relieved by sleeping propped up with pillows/almost sitting up and it will stop eventually. As you say, crying or anything that increases breathlessness (laughing has the same effect) can be difficult but if you need to release the emotions, that's important too. There are helplines you can call and your hospital may have specialist lung cancer nurses able to offer you the space to talk/listen. Alternatively there are support groups but I guess at the moment, you have little breath to leave the house so less likely to be an option.

I found reading books helpful - even if concentration at the time was fitful- so read 'anti cancer - a new way of life' byDr Servan Schreiber and 'Cancer is a word not a sentence' by Dr Rob Buckman and found them particularly comforting. Each of us is different and responds differently to things but distracting yourself whether with company, films/tv/music, escaping into a book, nice meal and getting your focus away from the cancer may all help. good luck and hope your recovery picks up soon, all the signs are there for a good recovery. best wishes

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