Hello everyone. I have lived with bronchiectasis for the last 20 years, have been on oxygen for 10 years, and was doing quite well until 3 days ago when I was given the devastating news that I had a tumour measuring about 5cm in my right lung which has attached itself to my spine. I've been told I can't have chemo or surgery because of the bad state of my lungs anyway, the only possible treatment being radiotherapy (first appt. next week) which might reduce the tumour. My family are absolutely heartbroken as we only lost my husband 18 months ago and now this. I feel as if I'm in a black hole with no escape.
new member: Hello everyone. I have... - British Lung Foun...
British Lung Foundation
I am so sorry to hear your news - thinking of you and sending love x
Welcome to this friendly site. Theres always someone to talk to. I am sorry to hear of your predicament and i wish all the best for you. Take care.
Thanks for the welcome note and best wishes - it does help to know there is someone to talk to.
Hello Lmax .
*Hug* 💜How very dreadful for you. That must be so very shocking for you and your family. And very sorry to hear about the loss of your husband.
I am sure your family will give you the support you need at this difficult time. Please hang in there and know you can come here whenever you need to share.
Sending you love, light and warm wishes.
Cas xx 🌹
Hello Lmax and a very warm welcome to you.
What a shock for you and for your family. My heart goes out to you sweetheart.
Please know we are always here for you.
Dear Lmax, woke this morn to find an email from this site that said with my own experience with radio, perhaps I could offer something. I was diagnosed with lung cancer,rt lung and whilst 1 tumour was in a main bronchus, the other also extended into my distal trachea. Explains why it felt as if I had a lump of mucas I was trying constantly to clear with no success, with occasional tinges of blood which actually were most likely just a small tear from the efforts trying to clear. It was my significant shortness of breath, needing to stop twice in the 32 steps it took from sofa to the loo. My GP practice was just behind my house, (I have agoraphobia from a prior brain injury accident,among other mh issues) but his lunch/after hours he would pop in to check. We 1st thought pneumonia, no joy w/treatment, steroids and inhalers for my potential asthma, no joy. It was finally on a visit when he heard no sound at all that he ordered an emergency admit and scan after an xray showed naught. Blues and twos on oxygen after my 82 o2 reading. Critical care at TWPembury, and a scan then had a critical team down to assess and ride with me, again blues and twos to Guys in London. Critical care for two days before transfer to dorkus ward. A few days later given the diagnosis, released but put on a fast track treatment, everything went warp speed from there. Several rounds of chemo with the intent to get me well enough to handle radio,as I had lost slot of weight, very fragile and using o2 portable for every trip for chemo. After several weeks, my lung function tests showed I was fit for radio. I started it mid Jan, and just two weeks ago was my last session. For me the emotional trauma of all of the travelling, a couple blips, and the rush of it all was harder on me than any of the treatments. I surprisingly handled it all quite well. Most significantly though is that I can now be mobile without o2 for much longer and further ventures and I don't have any noticeable problems breathing. To be fair, the two tumours also were with two lymph nodes affected as well, and the courses they put me on were marked "curative" so my situation is different in that respect. I never had a cough, and whilst I had a short bout of what I thought was a mild bronchitis last Jan, that is what has us suspect pneumonia etc as no other features that I am aware of were apparent, hence delaying my diagnosis. Hind site, my fingernails were a clue, as was a constant itch spot on my back which I've heard a couple people also had. I have an appt with my ono next week and a scan in a couple months, as radio continues working some time before a scan can show what/how far it has reached. I had the option of treatment at Maidstone or guys, but chose guys for two reasons. One, I wanted to be able to be included in trials and other potential treatments. But more important, I wanted to be forced to face my agoraphobia and by travelling and being in unfamiliar crowded places, but with safety nets in place (my GP let me have a small script for diazapam) and also patient transport for radio was more personal. So for now, I am not sure how much we have hit this, but I will say it made a significant difference in my breathing and my day to day life, and even for that I am hugely grateful. Imo, I would take ANY and ALL options offered to you, as new treatments (and a new drug just approved as well) will be available for as long as you can keep your self "in the system". And don't be afraid to be proactive, it is your life! As an expat American brit with an background in medical, I can be pushing and more aggressive than most, but that doesn't mean my MH issues didn't affect me, and at times make me want to just give up. I even nearly did one day when an patient transport gal was so overbearing on an already bad day, that the next day I refused to go to a treatment. It took my husband hours on the phone with PT and Radio dept to get them to make sure that a repeat wouldn't happen as well as extra care points being added onto my files with both departments. Don't be afraid to question, don't be afraid to ask, if you don't ask, you won't get. I had to push for filgrastim during chemo when my counts were too low two weeks in a row, and if I had not pushed, who knows. Read, educate yourself, but stick with legitimate and recognised sources,BMJ, other medical journals, and avoid quackery forums and pages. Ask for a mentor nurse, she can and will guide you through every imaginable resource available from mcmillans to wig companies, complimentary therapies, if it is available, he will help you find and obtain it. With that, I am not sure how much we have affected my cancer, it was also inoperable but still labeled under their 'curative' goals on my plans. I've seen my bf die from an easily curable skin cancer, but also saw my 80 yr old grandmother have and beat four different cancers. One never knows, I think our emotional wellbeing is our most important tool. Use yours, keep it healthy with friends family and support. If music lifts you, have it on from morning to night. If nature and birds are special, get feeders out, focus on them for parts of your day. Take care of your mind and emotional self and it will give you the strength to work on your physical self. I am still fragile, and the loss of a cherished kitty last week hit hard, but I am still making plans, little steps at a time, to keep going forward no matter what. That said, I wish you the best and sending lots of positive energy thoughts with huge warm karma hugs XXXX robin
Thanks for telling your story. I am still waiting to find out if radiotherapy is an option for me, but I have been heartened to hear all the positive responses. I have been told in the past how "strong" I am in dealing with my breathing problems over the years and hopefully I will be as strong in fighting this new battle, albeit without my wonderful husband beside me. However my 2 sons, their wives and grandchildren and extended family are all doing "their bit" to support me.
Dear Lmax, I neglected to send condolences about your husband. I certainly understand it to a point, my adored hubby was diagnosed with renal cancer a few years ago. Whilst they removed one kidney, the two tumours in his chest were removed, came back, removed, came back again, and as a third surgery would require a massive chest open, and as the tumours returned rapidly but stopped growing at a short point, from then on it was scans every three months a couple years,then every four. As he had a reaction to barium his scans always were basic. Mid chemo sessions I was having, his latest scan threw a huge spanner into things as his only remaining kidney showed two new tumours. One operable, the other one not. So having the ame thoracic surgeon, my faith weakened a bit that they had not been aggressive enough imo on his chest tumours. So although all of mychemo/radio clinic staff and us dark humour joke about his cancer not getting enough attention as mine was, it decided to make itself known again. We even joked about guys having mixed wards just for us. And honestly, my dark hole is deeper than anyone knows as I keep it quiet. I promised myself to fight only if to be able to donate a kidney if/when he needs it. That said, personally I even hope that the powers that be would let me go first. As A) I could still donate kidneys, and B) I don't see myself lasting without him anyways. He has close family and such, but they are as well as my two adult Kids, closer than I am. They say scientifically broken hearts with spouses are recognised now, and I would be almost certain I would be another number in that stat. That said, I've had a happier life with him than I ever could have hoped or wished for, so I am not too bothered by the idea of going first. He might think it selfish if he knew my thoughts, but so be it, I would rather be selfish and see him go on with his loving family, than me alone by myself. And I can cherish and adore every moment with him now that I have settled that in my mind I am GLAD you have such an amazing family support and that alone could be your saving grace, so cherish them and smile each day at least once for them hugs n cheers hun, XXxx
I'm so sorry to read about you husband's health problems but please don't give up on yourself. You say he has close family but surely you are also part of that family, and your husband and they would be really hurt to know how you're feeling. Keep strong, both for yourself and your husband and as you say, cherish every day you can be together.
My case was 2 tumors in the right lung solve by removing 2 lobes. 1 year later a tumor appeared in the remaining lobe.
Like you the surgeon would not operate and chemotherapy was not an option.
So he said I should agree to have STEREO TACTIC RADIOTHERAPY which is HIGH DOSE.
I had 8 sessions as opposed to 30 normal chemo sessions I had previously.
All this happened 2010/11 and although I don't breathe so good I am grateful.
I could cry when I read your case and can only pray your doctors give you the best option available.
Dear Lmax I am so sorry to hear your bad news but so glad you've come to this site. You will get lots of support here and although thankfully you have a close and loving family you may be alone most of the time, having lost your dear husband. And there may be times when you can't keep up a cheerful face or don't want to worry your loved ones - just come on here and have a moan and a rant ! God bless, Sheila xx
Thanks for the reply - as you say there are times when I'm alone and everything just overwhelms me - and there have been a fair few of these over the last 18 months, and I dare say there are going to be lots more in the future, but I will take on board all the support offered both on this site and elsewhere for however long it takes.
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