I’m really struggling with my lung mets at the moment, my breathing is terrible I have coughing bouts which are very scary as I can’t catch my breath, and when I get up or down even something like getting out of bed or off the sofa makes my breathlessness worse…and the stairs are like climbing Everest! I’ve had oxygen installed at home but wondered if anyone has any tips or advice to help control/improve my symptons. I’ve got an appointment with a Dr who specialises with breathlessness in a couple of weeks so I’m hoping our session will result in something positive but in the meantime if anyone can suggest anything it would be appreciated.
sorry I can’t give any advice - just bumping in the hope that someone else can
I am so sorry that you are suffering so much. I am sure that someone in the same position as you will be on here to help soon. In the meantime. Do you have medication and if so are you taking it correctly? Have you tried inhaling steam as that can help relax the airways. How about having a stair lift fitted. Have you had all the treatment available for the lung mets? Do you use the oxygen prior to getting off the chair or out of bed? You should do that to give yourself the best chance of being less breathless. Are you doing your breathing exercises?
None of this may help as you may be doing it already but then again…
Two weeks will seem a long time waiting for your appointment so in the meantime you could have a chat with one of the advisers on here, number above. Yes, I know that it won’t be easy talking or you will have a coughing fit but, once you get the first bit over you will be doing more listening than talking.
I do hope that this helps a little,
I don’t have lung mets but have a lung disorder that required oxygen for 6 months plus when first diagnosed 4-5 years ago, and can still get low on oxygen with exertion even now.
I remember vividly having a cold not long before diagnosis when the coughing was very frightening-obviously when you are coughing you are partly holding your breath and the oxygen level goes down so use it when you feel the cough coming on if possible and for a while afterwards.
Other things that always made me breathless were getting in and out of bed, bending, particularly re loading/unloading machines. Stairs are a bit more obvious. A mixture of using the oxygen before and after, and perhaps having a stool or chair so you don’t bend over so much might help.
The respiratory physios gave a group of us with the same problem a talk and said as a general rule we shouldn’t use 100% effort doing something or we would run out of reserve. Find out what makes you breathless and if possible stop before that point, rest and then do the next bit etc etc. I ended up saying I wanted more interesting pictures on the stairs! Could do 10 steps before very breathless, so stopped at 6-7, got my breath back and did the next 6-7, toook about 3 goes to get upstairs.
If you have been referred to a respiratory specialist, I wonder if they have a Specialist Nurse like our Breast Care Nurses? Your BCN might know, or the Consultant’s secretary might know, or maybe the hospital switchboard? If you can find out that there is a specialist nurse, try phoning them for advice about these symptoms while you are waiting. I found the Specialist Respiratory Nurse Practitioner a very helpful route for getting action sometimes.
If I think of anything else will come back to you.
Thanks for the tips ladies, Lavender I experience everything you have mentioned, the bending over, getting in and out of bed and the sofa. I’m taking an age to get up and down the stairs but this is the only way I can manage at the moment, I’ve had a extra hand rail fitted and have a seat now in my shower which makes things a lot easier. I’ve been tending to take the oxygen after I’ve exerted myself but will perhaps try having it before I do something. I’m trying to conserve my engergies but its so frustrating, I feel like I should be doing more but its just not physically possible, I’m only 36 and suddenly feel like I’ve aged over night.
Thanks again I don’t feel so alone now.
How areyou doing?
I looked out the little booklet that we were given on Energy Conservation, and see that that was given by the Occupational Therapy Department at The Royal Brompton Hospital where I am still an out patient for the lung problem. It reminds me that it was the occupational therapists who arranged the home oxygen, has it been the same for you?
If it is, maybe worth phoning them up and asking if they have any written info.
My booklet is sub titled Information on how to cope with shortness of breath in your day-to-day activities.
Any luck in finding a Specialist Respiratory Nurse for the consultant you have been referrred to?
I’ve had the same as you. Macmillan have a new booklet out with a relaxation cd in the back called ‘Managing Breathlessness’ It is free and to order it or speak to the Mac peeps you call 0808 808 00 00. Your Macmillan nurse can help organise loads of things for you like physio exercises, massage therapies etc. If you haven’t got one, you can get one by calling or asking GP to refer you or your oncology nurse can too. If you have get her to visit you asap for advice!!
My physio gave me loads of tips like -
Defo grab a few big mouthfuls of O2 BEFORE getting up / going to loo or doing anything. The idea is to fill up on oxygen first!
Also when walking do breathing in rhythm to your feet. So you breathe in as you put your foot forward then breathe out when you do the next step or when it is comfortable. This works brilliantly for going upstairs. You breathe in go up a step, breathe out bring up your second leg, etc.
Other things that help are ventolin puffer (from Gp) A Nebuliser in the morning and evening or whenever you are chesty. Oramorph for night time to stop coughing. Bit of codeine also stops coughing.
Hope you are more comfy soon. Take care and r-e-l-a-x honey.
Have found the website page for you to get the info booklets from macmillan - be.macmillan.org.uk/be/s-4-order-information.aspx
hope this helps.
Thanks Lionheart, I’ll get onto the booklet ASAP, got an app next week with breathing specialist too. Totally wiped out over the last couple of days, how do you cope with the frustration it’s driving me mental!