Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

Had a Lobectomy in September but am still exhausted.

Danni88
Posted by

Hi all. I'm new to this site and quite honestly thought I could get through lung cancer and having a Lobectomy without any support from any Groups but reading your posts have shown me I can't!  I have rung the MacMillan Nurses twice and they are wonderful. I had Pneumonia in June and ended up in hospital, can't remember much but I had a chest Xray where my Consultant saw a tumour which was only 2 cms big but had shown up on another Xray 2 years ago but Radiography hadn't told anybody! I have been ill for over 3 years and back and fore to Hospital because I felt something had changed but I was made to feel as though I was wasting their time. As it turns out....I wasn't! The Lobectomy was in September and the Surgeon took the top right lobe. They think they have got all of the cancer but I have to go for a C.T. Scan next week to check small nodules at the bottom of the left lung. The tumour was an Adenocarcinoma.

I feel as though I'm droning on here and you are all so brave so please feel free to tell me to get a grip! I was very calm when I was told and during and after the op but I now feel that I should be further along than I am. I'm still very tired and the site where the drain was is still quite painful at times which I gather is nerve damage. I had a really bad fall on the ice last week and am so lucky I didn't break anything...yay and landed full length on my back so hurt everything....my insides were not happy! I do still have a niggle about my left lung but I was wondering whether any of you who have gone through a Lobectomy and lung cancer have a shaky voice? It's driving me insane that I can't speak without shaking because my voice feels so weak. I also have a hernia and Reflux plus I had Endometriosis years ago and a hysterectomy. What a wreck! Please don't think I sit around moaning! I am very independent and hate asking for help but have had to lately. Grrr! 

You are all so brave and thank you for ploughing through this. I wish all of you nothing but the best. Take care all.

Love Danni

Danni 88
Humphreybrm
Posted by

Hi Danni, nothing wrong with being independent,  in fact it can be a bonus. We all know that you need to have a fighting spirit when going through cancer, no matter what type. I had 3 tumours removed from my right lung and part of the lung removed last June. I still have pain and take Oxycodon daily. After the op I ended up in hospital with pneumonia for 14 days and they would not let me home without home help which I said I did not need.  But I  had some wonderful nurses help for a month by which time I was able to look after myself with the help of a cleaner. She has now gone and I am back to being independent.  I am in awaiting scan mode with 4 weeks to go to see if the new lumps in the left lung have grown. Very twitchy but fingers and toes crossed.  Anyway, motto is be independent but not stubborn and accept the wonderful help that is available to help us  through these tough times. Best of luck.

Mick

Mick H
Danni88
Posted by

Hi Mick. Thank you so much for replying so quickly and for the words of encouragement especially with what you are going through. Pneumonia is horrible isn't it but then if I hadn't had it they wouldn't have found the tumour. I can't remember much of the hospital time when I had pneumonia and felt so ill when I came home that I didn't think I was going to make it but didn't know for sure about the tumour at that point even though it had shown up on an Xray I had 2 years ago this month.

When I had the Lobectomy they gave me Oxycodon but it didn't go well with my other medication and I had an allergic reaction. That was fun! I can believe that you are feeling twitchy about the scan. I had the top lobe on the right lung taken away so, with 3 tumours, is that what they did to you? I think the worst bit is when they yank the drain out! I kept hearing people screaming and yelping up and down the ward and soon found out why! I have been very stubborn and it hasn't helped me and as you said, be independent not stubborn. I have had help from some amazing people so I'm very lucky. I saw my Consultant last week and told him that I felt I should be further along than I am but he raised  his eyes to heaven and said that what I have been through is massive and to stop being so hard on myself! I never thought of it like that.

4 weeks seems a long time for you to wait to see whether the lumps in your left lung have grown. You have been through so much and I will be thinking of you so please let me know how you get on. My scan on the left lung is next Friday! I will keep my fingers and toes crossed for you also. Waiting for results is the worst isn't it? As you say, the Nurses are wonderful especially the MacMillan Nurses. Please look after yourself and I hope it will help you to know that there are people here who are rooting for you and good luck.

All the very best,

Danni

Danni 88
Humphreybrm
Posted by

Hi Danni, first of all beat of luckit for Friday, will have everything crissed and hope you do not have long to wait for the results.  The dreaded pneumonia hit me hard and so quick. After my op I had week with my brother and wife and then my son picked me up and took me home and stayed for 4 days before going home to Dublin. 3 days later, 5o clock in the morning like you I thought the end was near. I eventually phoned 111 and 30 minutes later an ambulance took me to A&E. Good service I have no idea what part of the lung they took away, will ask next visit, I think. I have not received a date for next scan, will chase this afternoon. Hope you do not get too exhausted,  I am having to sleep a couple of times during the day, just shattered. Could be old age

Best of luck. 

Mick

Mick H
Danni88
Posted by

Evening Mitch. I hope your day has not been too bad. Thank you for your good thoughts for Friday. I am nervous although I'm relieved it's not going to be a C.T.Guided Biopsy which I had before my last op and I did not like that at all! Mind you, that might come later as I have a very thorough and very kind Consultant...now. I hate the way some Consultant's treat us as though we are stupid and don't know when something is wrong. 3 year's ago I knew something had changed and I lost almost 3 stone, was nauseous all the time and still wasn't listened to. I am trying not to feel angry with Consultant's and Radiographer's because they ignored the tumour on the Xray for 2 years but it's difficult when I know that I've been wandering around with a lung cancer with no treatment and being put down by ' the expert's!

While I am so sorry that you are going through this, it actually does help to read that other's feel the same way. 3 tumours from 1 lung is worse than mine though as I had 1 and now the C.T. for the nodules on the left of  course. I have learned a lot about lung cancer because I want to know what I have to overcome! My sister had a tumour on the bile duct going into her Pancreas so had to have half of that removed with the tumour and bile ducts. She doesn't want to know anything about what is going on and refused Chemo which is her right and her way of coping. I have always thought that the more I know the more I can fight this!

There are such incredibly brave people on this site and I know some wonderful people where I live who are living with cancer. My head seems to be all over the place at the moment and yet I was so calm when they told me I had cancer and all the way through. I feel so stupid that 5 months after the op I still have to go and rest through the day! I have an amazing dog who needs to be walked and am so lucky that I have a few people who will take him out because they love him too! He also gets me doing shorter walks than I used to, poor boy.

Sending good thoughts your way and also to everybody who has cancer. We will be there for each other and how wonderful is that? Sleep well and Mitch, please let me know how you get on. I will be thinking of you....I agree about the old age bit, by the way! Thank you for your support. It really is much appreciated. Huge thanks to the Nurses and if anybody is feeling scared I would say to phone them because they really calmed me down and understand exactly how we feel.

Danni 88
Humphreybrm
Posted by

Hi Danni,  just to let you know I will be thinking about you tomorrow and hope all goes well. Let me know how you get on. At last I have a date for my scan, 5th March which is less than 4 weeks to go, but I had a call from the hospital to say that the oncologist cannot see me until the 4th April to give me the results.  Another 4 weks which I am not happy about. I would be iinterested if anyone else has had to wait that long to get thier resukts after being told the cancer could have spread to the other lung. 

Best of luck

Mick

Mick H
Danni88
Posted by

Hi Mick. Thank you for your good wishes. It really helps to know that people are rooting for you and I must admit I am nervous and I am trying to put it out of my head but it's lurking! 

I'm so lucky with my Consultant because he wants me to phone him as soon as I've had the scan and he will get in contact with Radiography to get the results. He is the only Consultant I've had in 3 years who really cares about his patients. I am horrified to hear how long you have to wait especially as you have already had one major operation. Did you get the pneumonia jag? I got the flu jag and was supposed to go and get the pneumonia one but keep forgetting. I know the N.H.S. is on it's knees but to make a cancer patient wait for 4 weeks for a scan and then another 4 for results is just torture!

Will let you know what happens. Please take care and be good to yourself.

All the best, 

Annie

Danni 88
Humphreybrm
Posted by

Hi Annie, How did it go yesterday. I wish my consultant was as keen as yours . As you say we know the NHS is under pressure and we need to be patient but sometimes it is difficult. I seem to be sleeping more than ever even though I have a pretty good night's sleep. I am thinking of having a chat with my GP to try and get some reassurance. Clutching at straws but feel as if I need try something.  I have had my brother down to stay for a couple of days which was enjoyable whilst I was awake. He has a Westie called Winston and he is lovely.  

Hope you are ok and let  me know how you fared yesterday. 

Mick.

Mick H
Danni88
Posted by

Hi Mick. Don't know why I was calling you Mitch....sorry about that! I didn't sleep on Thursday night although the C.T. doesn't bother me but the results do! I rang my Consultant's Secretary as soon as I got home to let them know I had had the Scan so hopefully he will phone me by Wednesday. He knows how scared we are while we are waiting for our results and is so kind and sympathetic and I am so lucky because the other Consultant's have been appalling which is why I have waited 3 years with no treatment because they didn't believe me when I told them I felt really ill! I have been feeling really down this weekend but am still trying to be positive about the scan!

I'm so pleased that you had your brother and his Westie with you. I love Westie's although we have a Retriever who is 9 and a big soft lump! He was so upset when we had to leave him with a friend when I had the Lobectomy and now he doesn't want to leave my side. Life changed so much for him as well as us when I had the pneumonia and was then diagnosed with cancer. It turns everybody's world upside down doesn't it? I wonder whether your tiredness is caused by an Underactive Thyroid because a few of us here were diagnosed with that when we were diagnosed with cancer. I thought that 6 months on from the Lobectomy that I would feel so much better but I still feel so tired and it's not a "normal" tired, I've been told that it's " cancer " tired and it's hard to explain. 

I am so sorry you have to wait so long. It's not right but hang in there and if you get fed up, just let me know and you can have a moan at me any time! Will let you know when I get the results. Please take care.

All the best,

Annie

Danni 88
Humphreybrm
Posted by

Hi Annie, pleased you got through Friday ok and fingers crossed that you do not have to wait long for the results. It is the waiting that nobody can get use to. I am sure our four legged friends know when we are going through bad times. On Friday as normal I was asleep on the sofa and when I woke up the Westie was hurled up next to me. Quite comforting.  I am hoping to have a chat with my GP this week about feeling continually tired and still in pain on the right side. As they adjusted my thyroid dose over 2 weeks ago and I have had  no improvement perhaps he can come up with something. I will also mention the 4 week wait for my next scan results,  he may suggest something. I have had good treatment from the hospital so far but in the back of your mind is the knowledge that they are special measures. No worries about calling me Mitch, I have been called worse. 

Look after yourself and hope to have some news from you soon.

Mick

Mick H
Danni88
Posted by

Hi Mick. Thank you for your thoughts. It really helps to be in contact with somebody who understands what you are feeling, thinking and going through. Have you thought about writing down what you want to ask the Dr. and how much do you  want to know? The tumour I had was an Adenocarcinoma and it was Stage I and in between the 3rd and 4th lung. Did you have Keyhole Surgery or the bigger op? The friend I looked after didn't want to know anything about her cancer and made me go to speak to Dr.s, Nurses and the Oncologist and when they insisted on speaking to her, which they had to, she would shut down and was in complete denial till the end. It's up to the individual how they cope isn't it? I go to the other extreme and want to know everything so that I know what I have to deal with plus it helps to know what other people are going through so that you know you are not the only one who gets exhausted or down or what the sharp jaggy pains are after the Lobectomy which are nerve damage I have been told!

I'm so pleased that the Westie is snuggling up to you! Dog's and cats are such a comfort and make you laugh but they also know when you are feeling rotten. I am so glad that you are going to speak to your Dr. Apparently the pains in the operation area can be there for a long time because of nerve damage and from when they took the drain out. That was more painful than anything...when they yanked out the drain. My Dr. ups the dose of Thyroxine because they haven't been able to balance my Thyroid level yet so I have to have blood tests every month and speaking to a friend who had Underactive Thyroid very badly she was exhausted all the time. It will be interesting to see what your Dr. says and I really hope they can help you. As for waiting a month for your results maybe you should tell the Dr. about my Consultant who pushes to get results because when you have cancer every day waiting is scary.

Sleep well. Please let me know how you get on. Have had a rotten weekend but I think part of that is worry! When I read some of the posts here I wonder why I'm moaning and as my Consultant said the other day, what people who have been through when they have had a Lobectomy is huge and we should give ourselves a break and it takes a long time to recover. I look at what I do now compared to what I did when I first got home from hospital and there is slow improvement but the tiredness is soooo annoying! Take care.

Best wishes,

Danni

Danni 88
Humphreybrm
Posted by

Hi Danni, as you say it is somehow comforting to chat to someone who is on this journey that no one wants to be on. I will take your advice on writing down my questions for the GP. The only thing I know about my cancer is that is primary cancer. I do not know if it is SCLC or NSCLC. Normally I do ask but for some reason I have just accepted what I have been told and tried to get on with it. I had the full op with drain which was in for 6 weeks. There was a small gap where the tube entered my back and this was giving a false reading on the X ray.  The surgeon  eventually realised what was happening and put more stitches in to make air tight using a strong wire which took some  cutting when it was time for the stitches to be removed.  All good fun. I will discuse my thyrold levels with my GP, it could be aggravating my problems. Sorry you had a rough weekend and hope you get some good news this week.

Fingers and toes crossed. 

Mick

Mick H
Danni88
Posted by

Hi Mick. How has your day been? When is your appointment with your Dr.? Has it been a good day or an exhausting one?! I did something so stupid last night and had a foggy brain so I took a morphine pill at bedtime, couldn't sleep and half an hour later I took another one and suddenly remembered that I had taken one earlier so I've been in bed for a couple of hours because I'm so shattered! A friend came up to walk my dog for me and brought a pill box so that I can put my pills for the day in it and that way I shouldn't do that again! Idiot! The joys of getting old and getting cancer!

It really helps to read the posts because I was getting worried when I was still having pain from the Lobectomy site but gather that that is normal and is probably due to nerve damage. My sister had an operation last year to remove a tumour from her bile duct and they also had to remove half her Pancreas so she has been having massage and Acupuncture for pain and is finding they help. I had Acupuncture years ago for pain in my stomach after 3 major ops on my tummy but didn't find it helped but I know other people who have had relief from pain. I think anything is worth a try because pain is so tiring.

Sleep well and I truly hope that you had a good (!) day! Thinking of you and wishing all on the forum a peaceful night.

All the best,

Danni

Danni 88
Humphreybrm
Posted by

Hi Annie, I am pleased someone has sorted a pill box out for you, can be very uncomfortable taking wrong doses but as you say we are getting to the dodgy age When my brother came to visit last week he forgot his tabletc all together.  After a couple of days he was not feeling good and had to go home taking the Westie with him. My day has been as usual, no energy and a fair amount of pain. I spoke to my oncologist secretary again and she confirmed that my appointment to hear the results of the scan cannot be changed. I am seeing my GP tomorrow morning so will discuss it with him, plus my continual lack of energy and pain.. Probably wasting my time but have to have a go. 

I am a bit of a cricket fan so I have been  watching the cricket from the West Indies. All those lucky people in shorts and T shirts lapping up the sun. If only.

I will let you know how I get on tomorrow. Any news from your consultant?

Mick

Mick H
Humphreybrm
Posted by

Hi Annie, How are you doing. Have not seen a postl from you for a few days and hoping you are ok. Have you had any results yet? I saw my GP this week and he agreed to write to my oncologist to see if my follow up appointment could be moved forward but I am not hopeful. The hospital is in special measures and does not hit any targets,  not even relating to cancer. He did prescribe some Oxycodon slow release tablets and they have made a bit of difference. I am taking less of the fluid which is a good thing. Still feeling tired and sleeping a lot. My GP says that is understandable so get use to it. Sun is shining again, that helps.

Hope to hear from you soon.

Mick

Mick H