Hello to everyone: I just wanted to say... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Hello to everyone

Jenco profile image
16 Replies

I just wanted to say hello. I'm newly diagnosed with lung cancer and on the same roller coaster journey that most people seem to travel. Some days I feel very positive and am coping well and other days it seems as though my world has fallen apart. I started with a bout of pneumonia at the beginning of July, confirmed with an xray. Despite three lots of antibiotics I still felt lousy, then followed a second xray that showed the pneumonia had gone but there was a shadow on my other lung. That's the time when your heart falls in your boots. CT scans, Pet scan, lung function tests and biopsies have followed - the last being a rigid bronchoscopy and mediastinoscopy earlier this week. I'm glad I wasn't awake for those. I am booked for a sleeve lobectomy on my right lung on 21st October providing the results from this weeks biopsies are ok. I know I'm in good hands, the medical team are excellent and kind and compassionate. It helps. I have a super GP and very supportive family and friends. I know I am lucky but sometimes it doesn't feel it. I am a non smoker and have a smoker's cancer!! Where did that come from? It's nice to share this with other people in the same boat.

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Jenco profile image
Jenco
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16 Replies

Hi Jenco, welcome to the site even though we all wish we didn't have to really be a part of it. You will probably have a tough road ahead but with good diet and regular exercise when possible you can help yourself along the way. I'm not familiar with a sleeveless lobectomy so I'm unsure of your recovery period. You should be feeling positive as surgery is usually associated with a good outcome. Please don't say you have a smokers cancer, not everyone that smoked gets lung cancer and not everyone that has lung cancer has smoked. You will find that this awful disease affects quite a lot of non smokers, especially females. Keep us informed how your treatment proceeds.

Good Luck

Rab

Jenco profile image
Jenco in reply to

Thanks Rabbie. I know it's going to be tough though I don't know how tough.. As far as I understand a sleeve lobectomy involves resectioning part of the bronchus that the cancer has invaded as well as removing the top part of my right lung and there is an added complication that there is a major vein involved. Hey ho!!

My comment about a smoker's cancer is because it is a squamous cancer normally associated with smoking! It seems odd that's all but my dad died from lung cancer at 43 so there may be a link there. I'm 67 so I've done quite well but I would like a bit longer.

Jules-55 profile image
Jules-55

Hi jenco im fairly new to this forum im 53 and had a lobectomy 13 weeks ago, im still recovering from the surgery, youre so right about it being a huge rollercoaster both emotionaly and physicaly, i find being able to talk to others helps so much, feel free to ask any questions as we all know you will have many going through your mind. Good luck with everything x

chatt profile image
chatt in reply toJules-55

Hi jules, just picked up your post regarding your surgery 13 weeks ago, just wanted to ask....how are you? I had 2/3 of my right lung and 3 ribs removed 2 weeks ago, my emotions are all over the place, waiting on histology which doesn't help, I'm walking as much as I can but only manage 10 mins before losing my breath, am I expecting too much too soon?

Jules-55 profile image
Jules-55 in reply tochatt

Hello, you have gone through some major surgery and you may well be expecting to much too soon ! Although everyone is different in their recovery time, i myself was stil only just pottering about the house at 4 weeks ! excercise is very important and to keep moving but i found if i pushed myself too much i would suffer for it and wouldnt be able to do much for several days afterwards ! Did you have open surgery or keyhole ?

chatt profile image
chatt in reply toJules-55

Thank you for your reply, it was open surgery, afraid I'm not a very good patient! I'm grateful for being able to have the op though and know I need to tolerate the pain for a while, need to find something to keep me occupied while I'm sitting, used to being on the go!! Have you had any further treatments?

Jules-55 profile image
Jules-55 in reply tochatt

I completley understand how youre feeling, its very frustrating when we cant do the things we normaly do, but you have to be kind to yourself on this huge rollercoaster and listen to your body !

I stil have bad days and its been 16 weeks post surgery, some days its hard to get motivated but dont feel guilty if you just want do nothing, we all have days like that ! May i ask how old you are ?

chatt profile image
chatt in reply toJules-55

Hubby wanted to take me out this morning but I declined, felt shattered today, don't know whether its the right decision or if I should push the boundaries! Hubby was diagnosed in march with sclc, its a tough time at mo, I'm 61 and feel 91 at mo.

Jules-55 profile image
Jules-55 in reply tochatt

Oh how awful for you both, you realy must rest when you need to its just as important as the excercise ! when wil you have your lab results ?

chatt profile image
chatt in reply toJules-55

Should get the call next week, surgeon was positive with the procedure, think I've overdone it today, struggling with the pain! Thank you for your replies.

Jules-55 profile image
Jules-55 in reply tochatt

It seems like forever waiting for results, realy hope the best for you. My tumour (adenocarcinoma) was thankfully contained and i didnt need to have any after treatment, hope you have been given very strong pain relief from your doctor ? Its vital for your recovery, please feel free to ask any questions and chat whenever you feel the need and let us know how you get on next week. Take care x

chatt profile image
chatt in reply toJules-55

Thank you, taking codeine, paracetamol and ibuprofen!, surgeon said chemo on standby, had so many tests prior the op so praying it was contained even though it had attached to the ribs. Will keep you posted. X

Jenco profile image
Jenco

Thanks Jules-55 - I dare not ask any questions yet until I know the op is definitely going ahead. I find this waiting for results quite difficult. I just keep my fingers crossed. I hope you find some people to talk to to help you through - I see my GP and go to the local hospice weekly and that helps keeps me a bit anchored in this very stormy sea. Thinking of you.

Jules-55 profile image
Jules-55 in reply toJenco

Yes waiting for appointments and results seems to take forever, please let us know how you get on and keep talking to others as much as you can. Good luck x

jillygirl profile image
jillygirl

Hi Jenco, jules and Rabbie have already said everything. I had the whole of my right lung removed 2 years ago. initially it was a shock , but once you accept what you have and how the surgeon is going to remove the cancer , you will be fine. Just stay positive and like Rabbie says exercise is a big factor. Good luck and keep us all posted. :)

LorraineD profile image
LorraineDPartnerRoy Castle

Jenco

Thanks for posting, sorry you find yourself in this situation but hopefully this forum will be a good source of support. We are here for the highs and the lows and will listen and nod, or tell you what you are going through is normal as well as difficult.

Looking at things positively, it sounds like your treatment team have been on the case and are looking at the right treatment options for you. Make sure you have got someone to talk to; whether that is your nurse, a friend or one of our experienced forum members. This is a rocky boat ride, but you have other people taking an oar with you.

If you need any written information do let us know. We have an information pack: Lung Cancer Answering your Questions and a booklet on surgery if this would be useful to you,

best wishes

Lorraine

on behalf of the Information & Support team

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