New here.

[Danni54]

Hi all. I am new to this site. I had a right upper Lobectomy last September for Adenocarcinoma but have had pain ever since and also a cough which crackles, creaks and whistles and then I'm very sick with fluid. Does anybody else have this or have any other problems after Lobectomy? I have also just been told that my Thyroid is in a bad way so am now on Thyroxine. I just want to feel better and would appreciate suggestions re the coughing. Last scan was 4 months ago and showed areas of inflammation.

[Jmc8]

Hi Danni

Welcome ! Yes I know what you mean about crackles, wheezing & whistles post surgery. I still had some fluid on my lung & eventually after couple of years I was told I had bronchoectasis (enlarged airways making you more susceptible to infection) which I believe is a result of the surgery. After a bad bout of pneumonia i was put on various strong antibiotics but then had a maintenance dose for 18 months (3 tablets s week) - this has helped so much. If the crackling & wheezing comes back then will need to go back on it. It’s worth asking your GP or surgeon if you can be referred to respiratory consultant as it sounds like you might still have some fluid/infection there.

Good luck & hope you feel better soon

Jo

[Danni54 in reply to Jmc8]

Hi Jo. Thank you so much for replying so quickly. I have never heard of that but I am going to have to phone the Dr. tomorrow because I can't remember when I last had a full night's sleep and the coughing is exhausting. It's been a year now since the Lobectomy and scans have shown inflammation but no explanation and I thought by now that I would feel so much better. I had pneumonia last year which is when they told me about the tumour although, as I said in my profile, they had seen it on Xray 2 and a half year's previously but forgot to tell me!

I am trying very hard not to get depressed but I do sometimes and have to confess to having a little niggle at the back of my mind that the cancer is back. I am usually a fighter and very stubborn but this coughing and the thyroid problems are exhausting! What a moan! This is not helped by our beautiful Golden Retriever dying 3 months ago and he was my darling and my best friend and only 9 and a half so I am feeling battered! What a wimp! There are people who are so much worse than me including 3 of my dearest friend's.

Sorry. I didn't mean to moan on. I hope you are still cough free and I really hope that they have managed to halt your cancer. Again, thank you so much and I will speak to the Dr. tomorrow. I so appreciate your suggestion.

All the very best and a big hug,

Danni

[Elt79]

Hi I am sorry you’re still feeling poorly. I never experienced a cough but did suffer neuropathic pain which has never totally resolved. Has you consultant discussed the possibility that this may be the cause of your pain? It may be worth asking him or your specialist nurse. I have been able to manage this with the pain management specialist team for 11 years and able to cope. I really hope they can sort this for you soon and that you feel better soon x

[Danni54 in reply to Elt79]

Hi. Thank you also for replying so quickly. The coughing and sickness is exhausting and the pain is where the drain was but I have started to get bad shoulder blade pain again which I had before the Lobectomy. I have been told that the drain pain is nerve damage which I understand because getting the drain out was agony though only for a few seconds! Did you find that? I have nerve damage and adhesions from a hysterectomy which was done over 3 years....sorry! 1 op. a year because of Endometriosis when I was 28 - 31. The drain pain is sharper and goes from my breast bone to the exit under my armpit so right under my breast. I try to keep going and love gardening but the more I do the worse the pain is so do I just work through that and hope that I will get some strength back? I also paint and the same applies. There are multiple thing's wrong and I now have Osteoarthritis, a large hernia, reflux and an underactive thyroid. Isn't life fun! It's a good job that most of us can laugh about our problems though I am finding that difficult today!

The Dr. put me on opioid painkillers year's ago so I am, of course, completely addicted and my body has got used to them so they don't work as well as they did and I still get breakthrough pain! I will ask to see a specialist again although our Trust is extremely short staffed partly because they have a bad reputation! Sorry again! Having been left walking about for 2 and a half year's with a tumour on my lung and no treatment which previously showed up on an Xray I think I'm entitled to be a bit angry especially when the hospital made a lot of basic mistakes! I see from various post's that this has happened to a lot of people.

Off the soapbox! It's just that I don't want anybody else going through what I have and am going through but I suppose that is an impossible dream. I was never given a Cancer Team despite the Adenocarcinoma but have spoken to the wonderful people at Maggie's and Macmillan Nurses but only occasionally.

Thank you again for your advice. Please take care .

Wishing you all the best.

Danni x

[Elt79 in reply to Danni54]

Bless you a lot to cope with! I can’t take opioids tried loads and make me violently sick. Gabapentin and Duloxetine help my nerve pain and I get steroid injections twice a year. I too love gardening and manage fairly well with my meds. Best of luck xx

[Danni54 in reply to Elt79]

Strange how we all react differently to medication's. I can't take Gabapentin or Pregablin or any of that type of pill and don't get me started on Oxycodone which the Hospital staff gave me after the Lobectomy. It reacted very badly with my other medication but the Nurses didn't believe me when I told them that I was having an allergic reaction although my husband kept telling them and begged them for help! 5 hours later the night shift Pharmacist came on and gave me Vallium and 10 minutes later my body had calmed down!

Thank goodness for our gardens! I went out today and managed to cut back some plants and do some deadheading but then it started to rain and eventually I had to give up. Do you grow roses? They have been spectacular despite blackspot. They have to be scented though! Too many weeds though, Ground Elder being the worst. There is a woodland across from our house where there are loads of nettles which spread into our garden and I know they are good for butterflies and bees but their roots are incredible and I really don't want them in the garden. Saying that, my garden is country cottage so loads of flower's for insects.

The morphine has made me very chatty!! I do apologise! Take care please and I hope you manage to enjoy your garden.

Have you passed the 5 year scan or are you still having treatment apart from painkillers? Sleep well and I wish you all the best. You have all been very kind putting up with my chuntering! Thank you.

Danni x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Danni54

Welcome to the forum where you will find support and encouragement. Sorry you have been feeling quite unwell with your cough symptoms which can be quite exhausting and interrupt your sleep. Also sorry that you lost your dog , which would be been quite a grief for you.

Hope you managed to see the Doctor today to have your symptoms assessed. There may be a number of things they can prescribe to aid this e.g. inhalers, steroids or if need be antibiotics. Please do not put up with symptoms thinking this must be it, symptoms do change and most can be managed well.

It is understandable that you feel angry about what has happened to you , it is good to release and share it.

Hope you will feel better soon to enjoy your garden.

If you wish to discuss anything you can call us on our Freephone nurse led helpline number on 0800 358 7200

All the very best

The Roy Castle Support Team

[Danni54]

Thank you also for your kind word's, support and advice. As you will probably see from my previous post I have had a dreadful and frightening night and I am so sore and exhausted but our Surgery is on holiday which I am shocked about! Of course they need to have holidays but....!

I am going to try and have a bit of sleep as I haven't had much and the only thing that calms down the coughing is Oramorph so I am also tired from that! I am usually a mentally strong person and a fighter but this is wearing me down. When I was first told that I probably had cancer I didn't tell anybody until it was confirmed....my poor husband was not happy about that but I didn't want him to worry more than he needed to!

Thank you again. You have no idea how much it means to me to have this support and advice. Take care.

Best wishes and a big hug.

Danni x