How To Cope

[nantilly]

Hi I am new to this site and trying to find my way round! I have had major lung surgery (cancer) radiotherapy (also cancer) and suffer with COPD. Am suffering dreadfully with my breathing at the moment and would really appreciate advice from others. Thank you

[2greys]

Just a thought, there is a side effect from Radiotherapy, a radiation induced inflammation (the medical term is Radiation Pneumonitis) this can be treated with corticosteroids. You will have to see a doctor to get them prescribed, usually your Oncologist will do this. This also why you should have had follow up CT scans and consultations.

Have you managed to speak to the Oncology Clinic yet? If not and live in the UK, then contact Macmillan Cancer Support who should be able to give you further advice you can ring them for free on 0808 808 00 00 7 days a week, 8am-8pm

macmillan.org.uk/

[nantilly in reply to 2greys]

Thank you for replying. It means a lot. Tomorrow I shall contact one of the nurses from the hospital where they operated. Problem is, everyone seems to have moved on and I'm not sure who is now supposedly looking at my case. Oncology clinic? Not aware I have one!

[Bkin in reply to nantilly]

You can certainly contact the hospital, oncology, cancer care unit or your GP but I would certainly chat with the oncologist and perhaps hospital respiratory team. Check in with the BLF helpline as well for additional support and advice.

If you don't currently have one enquire about a nebulizer for home use.

If you have a pulse oxymeter keep records of readings maybe 3 times daily.

Amazon have these if you don't already have one.

Hope you will soon be breathing easier.

[nantilly in reply to Bkin]

I do have an oximeter! Frightens the living daylights out of me sometimes! Drops down into low 60's so I take oxygen on board to get it back up again. I've been told not to use too much oxygen as that isn't going to help, even though that is what I feel I need, it's not. All a bit confusing sometimes.

[Bkin in reply to nantilly]

You will need to go along with what your medical team is advising you, cancer care, respiratory etc, discuss any issues with them including you 02 levels dropping.

Wishing you a good recovery and stabilising levels/

[Thepainterswife in reply to nantilly]

Hi nantilly , sorry to hear you're having such a rough time. I'm a carer for my husband who has emphysema so can't advise on oncology etc . What I do know is that if your oxygen levels are so low you definitely need supplementary oxygen at those times ! As the respiratory nurse told us when oxygen levels are too low other organs, the heart, liver etc are affected . My husband is oxygen sensitive i.e. If he takes in too much oxygen his co2 levels rise too much , he feels poorly and has once been admitted to hospital in a very , very bad way due to this but he is still told to use oxygen - it is a delicate balancing act . I sympathise with your confusion , I think we all suffer from it at times . My husband was diagnosed 16 years ago and we are still finding different ways of dealing with it . Good luck , stay positive and you'll get there 😊

[Patk1 in reply to nantilly]

Hiya and welcome.this is a lovely supportive group.

Personally,id keep a daily record of how u feel,02 level,and pulse.its not for me to advice,but i would use 02 when u need it - again,record 02 levels and how u feel before and after using 02.u then have a gd record to share with yr consultant.when u ring,give ths info and u tell them what YOU need from them xx

[Oshgosh]

Welcome to the forum.

You’re having a really rough time at the moment

Perhaps you could speak to your GPH he ma have some suggestions.

.perhaps try ringing some of the numbers from your hospital correspondence

Hopefully some one will point you in te right direction.

You need to take life slowly,planwhat you want to do and take your time. If it doesn’t get done today,you can do it tomorrow.

Ab e all,be very kind to yourself. You deserve it !

[Izb1]

Hi nantilly and welcome to the site, sorry i cant advise on your condition but am sure a few will that have been through this. Do hope you can get some help with your breathing x

[katieoxo60]

Welcome to the site nantilly, nice to meet you. AS you are a cancer patient your multidisciplinary medical team ought to be able to advice on breathing issues. It can take some time to recover from cancer ops so do give yourself time to recover the breathing maybe some breathing rehab might help. Take care one day at a time is the best motto.

[1pappy]

Hi Nantilly sorry I'm new as well, I'm awaiting further testing wish i could help

[Roessner541]

They thought I had cancer and removed part of my lung turned out I didn’t have cancer but now have problems breathing. I know if I were able to exercise more my lungs would get stronger so try to if you can. I joined a program online called Lyft it is about $71.00 a year and has low impact exercises. I do have a nebulizer but rarely have to use it. I developed panic attacks for about two years and had to go multiple times to hospital because I thought I was going to die literally. Those have subsided and I don’t have to take the medicine any more. I just try to get better. I pray a lot and ask for strength. Some days I feel better then other days. You just keep trying.

[nantilly]

Thank you for your advice. It definitely helps