Sarneyuk

[Sarneyuk]

I was diagnosed with lung cancer and brain mets in 2014, l was told l would need palliative care. Needless to say, lm still here lol. I had a partial removal of my left lung and a tumour removed from my brain plus radiotherapy. This was followed by two lots of gamma knife surgeries which has since been updated to proton surgery. My current status is stable apart from regular chest infections and breathlessness. I'm hoping that by sharing in this group l can not only get helpful tips on how to improve breathing but also in some way help someone currently going through this type of condition.

[sassy59]

Hi Sarneyuk, l just want to welcome you to this warm, friendly forum and hope you get some replies soon. You’re doing remarkably well I must say and great to hear you’re stable.

Hoping you have a good medical team and support. Xxx

[Sarneyuk in reply to sassy59]

Thank you so much, so far so good as they say 🥰

[peege]

Pretty amazing Sarneyuk! I cant help wondering if you would benefit from prophylactic antibiotics. Many members take them some in winter only - perhaps the worst time for infections for some of up, for instance i take Azithromycin 250mgs on Monday Wednesday and Friday from November to April. This regime has reduced my infections enormously. Some members take them 365 days per year. Might be worth asking you gp about if you don't already take them.

[peege in reply to peege]

PS I often use Pursed Lip Breathing during exertion and Deep Diaphragm Breathing for diaphragms & lung exercise/raising oxygen levels/ lowering pulse/relaxing/calming anxiety - demonstrations on you tube and I think somewhere on AsthmalungUK website along with exersise for lung patients like us, the exercise video is brilliant with 3 levels the first being from chair.

[Alberta56]

Welcome to the forum. If you need any advice, we're here, and reciprocal advice always welcome, especially from someone who can show prognoses aren't always right.

[Annscottie]

10 years later and here you are! Amazing!

Do your medical team have suggestions for improving breathing? For me it's exercise - just the basics I learnt in Pulmonary Rehabilitation but I haven't been through what you have.

Maybe someone else can suggest appropriate tips on improving your breathing.

Best Wishes.

[LissacFrance]

Sounds as though you`ve experienced the best of te NHS. Some very clever doctores involved with your care. Re breathing: my only suggestion is to exercise as much as you can and make your lungs work. Not always easyy as my wife knows only too well, but effective. Have a good day and look forward to reading you again in 10 years time. Chris.

[Izb1]

Hi Sarneyuk and welcome to the site. I cant advise on your breathing problems as it could be related to medication. But stay well hydrated and try to do breathing exercises, walk as much as you can. You could always give the helpline a call 0300 222 5800 they may be able to advise x

[Biker88]

In 2017 my consultant referred me to a hospice for palliative care, so fearing the worse I went for an appointment with the hospice consultant. I was very happy to hear the consultant tell me don’t confuse palliative care with end of life care as they are not the same. If you have a progressive disease with no known cure you are palliative, which basically means your doctors can’t cure you but they will treat you to enable the best life possible for you. Unfortunately a lot of people including medics automatically associate palliative with end of life.

[watergazer]

Hi and welcome Sarneyuk. You seem to have done well so far. Someone should be able to help. Xx

[PaperQueen]

My word, what a lot you've been through and survived! I have no relevant experience, but welcome to the group, I hope someone here can help you. Meanwhile, good wishes xx

[Nicholatracy]

welcome….so glad you’re doing well. Stay strong 🐞

[Mavary]

wel done. It’s always good to hear good news. I hope it continues for you.

[judg69]

Welcome Sarneyuk! As noted above, do practice pursed lips breathing. Also strongly recommend you get a‘flute like’ breathing device and diligently use it. I used and use Aerobika and it has been most useful . I use it while watching tv or reading. Diagnosed in 2012 with III A/B lung cancer and a grim prognosis. Top right lobe lobectomy, maximum radiation and 2 and 1/4 years chemo. Beat all odds and still here 12 years later. Oh, intermediate advanced prostate cancer in 2018 with max radiation and ADT therapy. Still here.

You’re doing great. Enjoy life. judg69

[Patk1]

Welcome to the forum. U could ask to be referred initially for chest xray+ ct scan, to see if it gives a reason for yr probs.Aluk website has lots of useful info. My goto is " controlled breathing - pursed lips". It really helps to focus on it whn struggling,breathless,walking etc. It pays to practise whn sat relaxing,so u slip into it whn needed.do treat ea infection asap x

[Nula2]

Hi, Can't add any more advice to what's already been given but just wanted to say welcome to this friendly and supportive site😊xxx

[katieoxo60]

Thank you for sharing your journey, which has been a good one it seems. Welcome to the forum and hope you have a long journey with us. I,ve recently had Sabr radiotheraphy which has not been successful but am trying some pills calledBHI mucus relief till I get the more conventional ones from the hospital next week. The Homeopathic ones seem to work and give some breathing,cough and mucus relief. In this process I have noticed some foods make the breathing worse so find lighter meals betterand less stodge like potatoes and bread. I have been informed of cancer in both lungs and doubtful lesion in the kidney. Biopsy confirms lung cancer primary. I actually lost a stone in weight from the radiotheraphy which helps some too. Nice to meet you and hope to speak to you again soon. Are you looking forward to Christmas ?