Trying to stay positive : It's been... - Lung Cancer Support

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Trying to stay positive

VerdeAzul profile image
17 Replies

It's been 8 days since my lobectomy. Spent 5 of those in the hospital and am now home. Pain has changed over the past couple of days, with what feels more like nerve pain and numbness under my right breast.

I also have a large water blister from the dressing tape. All I want to do is sleep. And when I do get up to walk around I get lightheaded pretty quickly.

The operation went from VATS to full thoracotomy due to some anatomy issues, so I have a large incision as well as the two spots where the tubes were.

I think at this point I need a little encouragement... please tell me I'll feel better soon.

Thank you everyone!

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VerdeAzul
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17 Replies
rdflynnjr profile image
rdflynnjr

Well, I can only say that I wish you the very best. And I'm sure everyone else here does also. I had a LLL VATS lobectomy over two years ago. It was close to a year afterword before I felt I'd returned to something close to normal. It is my understanding that your recovery will be a bit more difficult with the full thoracotomy. There's nothing easy with lung cancer.

Just keep sharing your experience. That's what we do here.

Rick

VerdeAzul profile image
VerdeAzul in reply to rdflynnjr

Thank you, Rick. This forum has been a real help.

JanetteR57 profile image
JanetteR57

First off, well done on your surgery - not many patients are eligible for one reason or another. I had full thoracotomy in Dec 2010 diagnosed Jan 2011 so had the large incision and the two smaller ones where the drain tubes were. I can assure you it will get better and you will feel better as you start to recover. Breathlessness will improve so long as you keep active - try and move around a little each day. I was told my recovery was really up to me - if I recovered my former activity (swimming) and walked in the meantime, the remaining lung part would strengthen and develop in time like a balloon (where you keep blowing it up and it enlarges but with a thinner surface) so that motivated me. I found sleeping propped up with pillows the most comfortable way of resting. you will want to sleep - your body has had general anaesthetic and major trauma in the form of surgery both internally and externally and this takes time to recover. I was back at work 3 months later and resumed my swimming 3 months after surgery although the consultant said I could have done that sooner. It depends on how fit and active you were before the surgery but try not to give up and sit around all day even if that's easier - the lung needs redeveloping to regain its capacity and function. There is a useful book on Roy Castle lung cancer foundation website under the heading of 'information' 'treatments' 'surgery' 'my lung surgery' that outlines likely milestones. good luck with your recovery. thinking of you.

VerdeAzul profile image
VerdeAzul in reply to JanetteR57

Thank you, JanetteR57. It seems as if most everyone else has been able to have the VATS procedure, so I was very disappointed when I woke up and the doctor said he had to do the incision.

I will look up the book on the Roy Castle site.

I am trying to move, but you're right, it's tempting to just sit around.

Again, thank you so much.

I had vats surgery, but I have lost both upper lobes to LC. The left was taken 6 years ago, the right was 15 months ago.

You will heal, you will feel better, it takes time. Walk around as much as tolerated as often as tolerated, rest when you need to rest.

VerdeAzul profile image
VerdeAzul in reply to Feelingblessed2013

Thank you, KatherineK. Walking a little more every day!

JeanE41 profile image
JeanE41

Recovery from lung surgery is slow and gradual. It took me a full year to get back to "normal". Your body has been through major trauma and needs lots of time to recover. When I first saw my oncologist after the lobectomy he asked me if I felt like I was run over by a truck. I responded that there were at least two trucks and each ran over me at least twice. The pain/numbness you feel under your breast is from all those cut nerves and can take a long time to go away. I still have some numbness after four years. Some people have found gabapentin helpful to relieve it.

I also found that I became lightheaded after being up for a while. I think this is your body's way of dealing with less oxygen getting to your body. I found getting up frequently for short periods of time helpful at first and increasing the time I was active as my body allowed. All this takes time, but you will get there with persistence. Listen to your body. As you feel better, you will want to be more active.

If you feel something is not right, don't hesitate to contact your doctor's office for advice. They know best what is normal and what requires checking out.

I hope your recovery goes smoothly. Be kind to yourself.

Jean

VerdeAzul profile image
VerdeAzul in reply to JeanE41

Thank you, JeanE41. It's so reassuring to know most of what I'm going through is common. The light headedness can be frustrating... in the middle of doing something as simple as pouring a glass of water, and then having to go sit down. I hadn't really thought of less oxygen getting to my body pretty obvious once you think about it.

Little by little.

judg69 profile image
judg69

You WILL feel better. I also had open thoracic surgery. But you absolutely MUST get up and about and walk. Get up s I o w l y as getting up too fast will cause lightheadedness and dizziness. Walk at a pace you can maintain for a bit and do your pursed lips breathing as you walk. Keep us posted as you get stronger and feel better, Best Wishes, judg69

VerdeAzul profile image
VerdeAzul in reply to judg69

Thank you judg69. That seems to be the consensus: get up about and walk!

JanetteR57 profile image
JanetteR57

Last year was the first time in the UK that VATs overtook open thoracotomy in the UK and VATs patients have to consent to conversion surgery if the surgeon needs to changeover due to difficulties getting at the tumour. As others have suggested you may need to do pursed lips breathing but do keep at it. I'm forever grateful at the advice of my surgeon that my recovery was really 'up to me - the more active I became, the sooner I would recover'. Within a couple of years of surgery, lung function tests (due to increased swimming beyond anything I'd ever done prior to surgery) showed my lung function had improved beyond my previous and for other people my age. I found a book called 'anti-cancer - a new way of life' very inspiring in learning about what might help in terms of lifestyle change and understanding the condition. good luck.

VerdeAzul profile image
VerdeAzul in reply to JanetteR57

Thank you, JannetteR57, very encouraging. Yes, I remember you recommending the Anti-Cancer book. I started reading it before my surgery, need to get back to it.

Denzie profile image
DenzieModeratorVolunteer

You’ve had some excellent advise so far! Do remember that losing a part of a lung is a major trauma to the body and it can take a few weeks to shake off the effects of that anesthesia.

The advice you got about walking was excellent. Did they give you an incentive spirometer? I don’t know if they do after surgery like that or not. I know they do with most other surgeries so if they gave you one do continue to use it.

They recommend a 6 week recovery period and the consensus seems to be that you’ll need all 6 weeks.

My VATS was for a different issue but I experienced some nerve damage and a broken rib like others mentioned. If you develop a feeling like a vise grip around your ribs or it it feels like you’re wearing a bra 5 sizes to small do inform your doctor. Gabapentin helped me but they started me off on way to strong a dosage. My dr gave me 300mg 3x day I found that 100mg 2x day was enough. Ask your dr to start you off at the lower dose and work up if you need. 7.5 years out I still experience some discomfort. Don’t adjust the dosage without dr supervision.

Please keep us informed on how you’re doing! Best hopes for a speedy recovery.

VerdeAzul profile image
VerdeAzul in reply to Denzie

Thank you, Denzie. Yes! The advice from everyone that has gone before me has been helpful and encouraging. Biggest thing is to force myself to move more... it really is so easy to just want to sit. But I do know that moving is what will help me most.

They did give me a spirometer, as well as a blowing device called VibraPEP. I should do 10 rounds of each at least once an hour.

I am on the Gabapentin too, 200 mg 3 times a day. I have my first post op appointment next week and we'll probably revisit all the meds. A physician friend of ours suggested that I ask about an anti-inflammatory.

Again, thank you so much for sharing your experience... it is so helpful!

One day I'll be where you are and can hopefully encourage others too.

Denzie profile image
DenzieModeratorVolunteer in reply to VerdeAzul

Your experience so far makes you an expert on what’s happened to you. You’re far ahead of the newly diagnosed and have a wealth of experience to offer so far.

I had a PEP, too! I used to call it my ocarina.

JRuth1945 profile image
JRuth1945

You have my empathy. I'm sure you do hurt..a lot. Most likely your pain is due to nerve pain. It takes a while for that to go away. The incision pain is very different pain

Your rib pain is another factor you are dealing with.

Pray for patience. You have undergone a lot. Your body takes time to adjust and to heal. Your body is telling that to you. Sleeping alot: between your surgery and your medication it is no wonder. You may not be drinking enough or eating enough so it doesn't surprise me that you are lightheaded. You did not indicate your age so that could be thrown into the pot.

It all takes time. On your post op visit to your Dr...tell him all that is going on.

Oh yeah : and stay on this site. This is the best place for talking about all issues.

Get well soon.

judg69 profile image
judg69

Hi VerdeAzul, I had the same full thoracic lobectomy with the scar across the back. I also had a very painful skin reaction on the back where they had too aggressively taped the drainage tube. You will have aches and pains, your ribs will be sore, and at times you may get a sharp pain(s) well away from the incision and surgery area ( this is called referral or transfer pain). But , Yes, You Will Get Better!! Keep moving and keep moving/walking a bit more each couple of days. Have your Dr. prescribe a fluted breathing exerciser. This helped me tremendously. I used the Aerobika device , and used it very often, while watching tv, on my iPad , or just passively reflecting on life. You Will Get Better!! Please keep me posted! All Best Wishes, judg69

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