I had my Oncology appointment yesterday. I had very mixed news. The treated tumour has shrunk a tiny bit more since the last scan, it is now down to 10 mm which of course I am very pleased about.
The "rub" is that normally I always try to get to appointments around half an hour early. This time I only made it with 3 mins to spare. I was extremely breathless after trying to rush from the bus, up the stairs and then half the length of the hospital. I do not recover my breath very quickly anymore and the consultant immediately picked up on it. Normally, by being early, I have had time to recover.
After an examination of my chest the conversation started with the good news first. He then told me that it was the Radiographer's report, he did not actually have access to the scan due to technical issues. He then told me that I had developed an issue on the other side of my lungs but could not say what it was, other than to say it could possibly be inflammation but not the cause. I have had a bit of a cough over the last 3 weeks producing clear, frothy mucous as well. Another CT Scan has been ordered along with a follow up appointment and also to have an X-Ray on the way out.
A referral back to the Respiratory Clinic, in the meantime, has also been made, concerning what he called the "extreme breathlessness" that I experience. Obviously in my own mind I have not really noticed the slow decline, having become accustomed to it and inadvertently hiding it, by always being that half hour early. This is all on top of more bad news that I had received the day before, on Thursday. Feeling somewhat deflated.
I have been aware that, with last year's spirometry result of a 28% FEV1, that the use of ambulatory o2 was perhaps closing in on me, but not just yet. I had set myself a goal to perhaps at least think about retirement once I had reached 70 years. That is now in doubt, all in all, I feel that my "house of cards" is about to collapse.
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I'm so sorry you didn't have better news. Obviously it's great about your tumour having shrunk. But I'm sorry to know you've got all these other issues to deal with. Usually you're the one with advice and support for people in such situations and I don't feel that I have anything adequate to offer. I will be thinking of you and hoping for the best possible outcome for you 🤞
Thanks HH. I feel a little lost at the moment, but no doubt will overcome it all, as I have in the past.
Strewth!! I’ve been trying to get you to retire and write that book for first time sailing holidays since you sold the business! You expect too much from yourself. For goodness sake do it now or I won’t get to read it before I’m gone. 😱
It 's not really that I expect too much of myself Don, it is just the way that I am wired, I do find it terribly frustrating to have these limitations hoisted onto me, the secret is trying to find a workaround. But yes you are right, there becomes a limit eventually to what you can do physically , it is just a case of accepting it mentally, that is the hard part.
I could understand that if you were someone with very few interests other than your work, but you are not. You have numerous interests and you write so well. Those articles covering your sailing holidays from your very first one to the latest we’re so interesting that put together are almost a book already written. The detail that you included in them made me wonder if I could manage one even at my age! Sorry if I’m banging on a bit 2greys i’ve never been good at minding my own business. 🙄
I’m sorry this has happened, but it is probably good that it was picked up, as hiding things is probably not the best thing, as I know only too well. I wish you all the best with any treatment. xx
I was not intentionally hiding it, but rather as a consequence of being prompt. A 6.5 mile journey across a city using public transport takes an indeterminate time, anything from 1 to 1.5 hours, impossible to to get it dead right. So I plan on it being 1.5 hours, which was infact 1 and 3/4 hours this week. I had not thought of the consequences of being early and relaxed until now.
Sorry you have had mixed reports 2gs, but come on now, wait for the next scans, one consultants words do not always show the full picture., I had a very mixed report yesterday, so I'll march with you. Onwards and upwards. Jane .
I know how you feel. I, too, am more breathless than usual and I do the same, mostly a good hour before my appointment. But I have found with my diagnosing, that they have been wrong and the FEV1 is sometimes due to one's condition on that day, which is not always every day. I almost had Radiation on a nodule that wasn't cancerous but they insisted it was! At the moment it's everything that is building up that will make you feel more devastated! I send you my care and love and will hope for the best possible outcome for you.😊❤
What a pain in the backside that is 2greys, sorry to hear that. I just hope this is a wobble and those cards will stay standing for a long time to come. Take care. Xxxx
Sorry to interrupt your Post Carole, I am having Big Problems with my Computer & now my Phone, This is the only way I can "Post" on HU. The reason I wanted to Post is the great Results I have had from taking Turmeric Capsules for the last 3 weeks, They seem to work for RA as my Knees are less painful & not having to put Ibuprofen Gel on them Constantly. They don't do anything for my Lungs, We can't have everything can we. But They are working for my RA, even my Finger Joints are less swelled. I shall now try to Sort out the Technical Probs I am Having . Much Love Carole & Pete. XXX
Sorry to but in Hacienda, I have been taking turmeric for a long time and think this is what kept my ra at bay, have you tried ginger along with this, as ginger keeps inflammation down x
Hi Irene, I wanted the one with Ginger, but they had sold out as it was BOG half price. So, I shall make sure I buy the one with Ginger & Black Pepper & what ever other ingredients that make us Perk up. I use ginger a lot in Cooking and Black Pepper (though not always). I have Tea & Ginger which is very Nice. I am Pleased so far with the Turmeric making my Inflamed Knees work Better. Much Love Hun. XXX
Thinking of you 2greys💕 Uncertainty and waiting for results is so stressful! Retirement isnt all bad.Believe me,after a while you wonder how you managed to find time to work! X
"House of Cards" I understand that. I'm looking at only being able to do two days a week. I was hoping to go back to five - at least for awhile. My friends are encouraging me to go back full time and reminding me of the things I will miss out on due to lack of money but my body says "No". However the closer I get to the decision, my mind is already thinking about the other goals I will do and how I will make do with less money.
I know you are the type who, regardless of what comes up, will be able to positively make the best of whatever you decide to do. I wish you every blessing and opportunity.
There is a limit as to how long you can hold back the tide with Emphysema,you to a certain extent 2 g's have managed to hold back the tide whilst also riding the tsunami of a cancer diagnosis,wait until you receive those test and investigations,hopefully it will indicate the standard wear and tear of this condition,perhaps a background resilient infection and nothing more and if you have now reached that stage where supplementary oxygen is required for ambulatory reasons accept it,continue with your active lifestyle accommodating it's need and i am sure with your active mind you will still find the quality in life that you desire.
Somebody once told us on this site that worrying was worthless and fed anxiety and that there was little we could change by doing so,i think dear sir you know who that person was. Crack on 2 g's and i am sure you will circumnavigate any obstacles thrown into your path with your normal resolve.
The only positive about the breathlessness is that he has seen you as you actually are. He will refer you on for the inevitable interminable tests and then more tests to exclude things.
It will be good if he can relieve your breathlessness a bit.
I thought I was doing quite well with my breathlessness,then I forgot to take the morphine in the morning,breathlessness returned in spades.
I feel for you about retirement. I had planned to work until I was 68.
My health was detioriating,but I managed to work round it.
Then I had an emergency admission (10 days) things went downhill from there.referral to a specialist unit.nebuliser.tablets plus plus.
So had to retire at 66.
Was difficult,but kept in touch with some Colleagues ,which helped.me adjust
My manager was good,.
You hav to see the positive that your tumour has shrunk
Take heart greys,your house of cards may collapse,but you will construct another one,
Sorry that you were disappointed with your latest news after review even though the tumour has shrunk and that you are facing more tests.
I am usually early for appointments too and so do not present with the severe breathlessness that is normal for me on mild activity thus giving a false impression. I don't think it is a bad thing that the consultant saw how breathless you were and that he has referred you back to the respiratory clinic.
As hard as it may be I think we have to be realistic about the situation we are in and as others have said I'm sure that you would be able to keep yourself occupied if you finally retire from work.
Sorry to hear about your latest setback 2greys. I think we become quite good at adapting to our situation but sometimes things catch up with us. This may not be as bad as you fear. You are such an inspiration to us, stay strong 💪
All the best to the most Copd educated person I know , how true it is that you don’t realise how it creeps up on you and how you do things like arriving 30 mins early for appointments to allow yourself to become what some people may call normal .
The more i analyse things I do the more I find I do like arriving early and oxygen is just another . Heads up and all the best
Hope the CT and X-ray is news that can be sorted out and that you start feeling much better soon. No good worrying or making decisions until you have all the facts to hand. Hoping the extreme breathlessness can be reduced somewhat now it’s ‘out there’ with treatment and care with help from the resp clinic. Fight the good fight as you always have🥊🥊Good luck 2Gs 🤞🤞
I'm very pleased to hear your tumour has shrunk a little 2greys, but wish it were ALL good. Sending gentle hugs and hope things improve. ❤️
Why is life always like what you're now experiencing? Such good news -- the tumor has shrunk; but then not so good news that may lead to retirement, which obviously you are not emotionally ready for just yet. Both my husband (PCa) & I (LCa) face similar journeys. Something may improve; some other thing will worsen or jump out of nowhere.
My very best wishes to you that your situation may not worsen to the point of retirement, just yet; if so, that you will continue your brave journey with the grace & forbearance you've shown all along.
I’m sorry to hear the news was mixed. There always seems to be a “but” as we age. You are also worried about someone else so it’s something else buzzing round in your head. If you need to retire, so be it, but from what you’ve said work is very important to you, so carry on as long as it gives you satisfaction.
I’ll probably get pelters for even suggesting this but.....if you don’t want oxygen, you can decline the offer. Your life, your body, your choice. Might not be sensible and it might shorten your life but hey, smoking isn’t sensible and shortens life but we did it anyway. Balances and trade-offs. You always give great advice. Mine to you is not to take any rash decisions, consider options and their consequences and come to the right decision for you. I’m sure you’ll do that anyway but I feel for you. Bad enough worrying about yourself but almost worse worrying about someone else.
I’m so pleased to hear that your tumour has shrunk, 2greys. That’s the big news. Now wait for results of coming tests and investigations, tedious as they might feel, to see the full picture, without worrying and meeting the results in advance....it won’t help you. I hope the outcome is something you can cope with. You’ll cope with retiring a few months early, you’ll cope with using O2 if it becomes necessary.
Hoping you’ve got another sailing holiday booked....we need to hear more of that...one of my favourite reads.
Stay strong for us all, our good friend and educator.
I am sorry this week has been difficult. Of course you're going to feel somewhat deflated. The news about "the issue in the other side of your lungs" is indeed a worry , but they have to further investigate before they know for sure. It may be lingering infection and therefore treatable.
As for retirement and going on O2, I truly understand your feelings. I was at about the same FEV 1 as you were when they put me on oxygen. I didn't like it but deep down I knew it was a necessity as my other organs were , no doubt suffering. And I still lived my life fairly normally. It is definitely NOT the end of the world , or you. I know you well enough to know you will not let this define you or destroy you , you will only let it strengthen you further. So, take heart. We are rooting for you.
Oh 2greys I am so sorry you had such a mixed appointment
Good news about the tumour of course and really it IS good that you are being referred back to respiratory clinic. I always think it's best to know what's what (I rather think that's you too with all the research you share with us all) and once you know you WILL deal with it. Because that's your nature.
Do let us know how you get on.
I know I don't post much, but care about all the 'regulars'
I feel your pain that your house of cards is about to collapse, for in some degrees I am in a similar position with my own health and lung issues. Like you I possibly try to hide most of my symptoms, and the prospect of oxygen fills me with dread. So I thought long and hard why..... well in my case its I suppose it confirms that I am really sicker than I would like to admit. Then I thought, hold on I am still here and if oxygen means I have a chance to still be here longer, its a bummer wobbling around with a cylinder, but I guess that's the remnants of the new reconstructed house from my collapsed house of cards then so be it. Its life jim... but not as we knew it.... so I guess I will embrace it and re focus. I wonder if you can do the same... Your posting did make me think. In the meantime, try not stress out on the what ifs.... Its every moment of the now that is important. Your contributions to this forum are huge and unique - so if retiring, means you have more time to stop and smell the roses even with a nasal do dah.... then do so... with gusto.
I'm sorry that you feel your house of cards is about to collapse this is so unlike you but understandable. The tumour news is good news and I do hope everything else can be sorted out. You are always such a positive light to us all maybe now is the time for us to be there for you . I've been retired now for 7 years and it's not so bad , more time to do the things you enjoy and very pleasurable not being in the rat race anymore . We are all behind you 2greys as you have always been for us . Positive thinking now my friend .
I don’t post often but I do read here everyday and the information and advise you give is second to none. I feel that it is the someone else you are worried about more than yourself.
Hopefully all the test come back good. Will be thinking of you.
It’s great news about the tumour and probably good that the doctor seen you breathless so they can treat it. I was like you about work and oxygen , I had a very active life before my lungs gave up.
It was hard to deal with and my consultant said that the hard part is getting your head around having to adjust how you do things.
I was put on oxygen and it really helped me keep doing some things I loved , although at a slower pace. It’s hard to adjust at the start and sometimes you forget and end up breathless, I do it all the time. But you are always so positive on here and your posts have helped a lot of us. I know you will get your head around it and try not to worry until you get the results back. I know it’s easier said than done but you are the very man to do it.
I wish you all the best and try and keep your chin up.
Wishing you the very best outcome 2greys when you get the results of new scan - I hope they did it that day so you don't have that long journey again too soon.
I've a friend on ambulatory O2 and she leads a very full life using her back pack leaving 2 arms free.
I'm wondering if it's time for planning a move nearer the ground for less strenuous trips up to your home, perhaps there are good reasons that that's not possible so I must mind my own business.
Very uplifting news about the tumour still shrinking but I'm so sorry about your new worries. All the very best to you. P x
Yes a mixed bag of news 2greys. Hold on to the positives and wait patiently for the other results. Retirement is not a bad thing and I’m sure with your active mind you will find plenty to do - maybe we’ll get to read your book on sailing.
Your house of cards may be wobbling at the mo but hasn’t fallen. Take care. Keep us posted. Rooting for you. Sending hugs. 🤗 Anita
Such mixed emotions you must have at the moment 2greys. Great news that the tumour has shrunk, as for the breathlessness being worse, could this be down to the fact that you have only just got over a bout of pneumonia and you had been rushing to get to the appointment, so didnt show your normal breathing pattern . I can understand your reasons to want to stay in work, I had been fighting health problems for a few years before retiring, the difference I wanted to retire and was ready. I do hope that the results of your scan show a postitive picture and you can make your decisions then. You have other problems going on at the moment and I hope they are not too serious. I have found that life has a habit of being famine or feast where we have good periods and then everything goes wrong all at the same time. I do wish you well and know you have the strength to deal with this. Irene x
Wishing you all the best 2greys. I have always marvelled how you can manage to lead such an active life. You will still but possibly with some adaptions so never give in. x
Oh my gosh- getting to the appointment way too early to try and recover from the what seems like the eternal gasping- I can truly relate I do the same thing. Thinking about it I actually do it just about everywhere. If I’m out shopping I know the nearest decent restroom where I can go lock myself in to try to stop the overly dramatic struggle for air. I have also had the cough from hell for 2&1/2 weeks and it isn’t as bad during the middle of the day as it is when I lay down. Then my poor husband laying beside me never complains about me keeping him awake but will then offer to take me to emergency and I say” what the —— for? So you can get some sleep? Since I know they can’t reverse the lung damage but they WILL without a doubt give me a deadly( for me) mix of strong antibiotics accompanied with steroids which will help the cough but burn a hole in my stomach which then requires another type of antibiotic.
It’s great your tumor has shrunk which would lead me to believe that if you continue doing whatever you’ve been doing it will continue to shrink🤞🏼. I know what working does for a man as well as what staying home due sickness or injury does to one. I hope for your sake as well as your partner you can carry on. Try to keep a happy face and carry on. I too hate those” mystery issues” that pop up in tests or xrays that cause us way too much stress thinking about “ what if it’s this or what if it’s that” but try not to stress out since you really can’t do anything but try your best to take care of yourself and maintain positive attitude. Will be thinking of you take care
I am so sorry to hear of the recent developments and hope and pray the new issues are not serious. I hope the new inflammation found is simply an infection that can be treated and not something more serious. How quickly are you going to be able to get the CT and follow up appointment to find out what the new issue is?
I don’t recall seeing your other bad news on Thursday or perhaps that was something you did not share but either way certainly understand why you are feeling deflated and hope some good news starts to come your way soon.
I did not share that other bad news, it concerns another, which undoubtably will soon get shared here, when they are ready. Only to say it is, I find personally, worse than than my own problems which I do accept.
My next Oncology appointment will be in 3 months time. The other appointments have yet to come through. If it is deemed that I require o2 then all well and good. The only issue that I have is how much would I be allowed, enough to still work and other activities?
As for what is going on in the other side of my lungs, I am prepared mentally for anything, having had exposure to various nasty substances during my working life, from Abestos to Naptha whilst working onboard tankers.
Your post could almost have been wrote by me. I also had an X Ray that showed a shadow on the Left Apex of my lung. I had a repeat X Ray that showed no change,
Referred to chest clinic and CT Scan ordered with contrast - No change. Was referred for a PET Scan with radio-active glucose contrast. The Radiographer rang me the morning after and told me the shadow had not grown on Left Lung but had spread to the Right Lung. I had to have another CT Scan in six weeks .
Chest specialist rang me and said the same as the Radiographer - but the second shadow could be inflammation due to asbestos and coal dust from years ago, plus I smoked until 25 years ago.
Now I have to have a CT Scan with no contrast in June - If no better Left side will be treated. - In short I am no wiser, I must add I had felt unwell for a year before this was discovered.
I am also 74 will all kinds of problems and this was in a way the last straw. But pain need Morphine for arm pain and more - That is a sign of a Pancoast Tumour but just guessing, my GP says it's from my cervical spine. - Not so sure.
You mentioned a strange cough - Well I had a cough very strange and coughed up white frothy mucus - later to be tinged with blood. I have COPD but this cough was different,
I always go to hospital at least 30 minutes early - Pushing like you will cause breathlessness - rather be bored on a chair.
Your 28% FEV1 is interesting as I have never been that low but the last time after a steady decline was 41% FEV1 - That was 2018.
I could not have a spirometry test in August 2019 as I have Wet macular degeneration which requires a monthly injection in my eye with Lucentis the nurse said was close £1000 a shot.
However Asthma/COPD sister told me any eye operation or injections and she could not do a spirometry test - so I don't have a clue what my FEV1 is now. I do know my SP02 drops to the low 80's at times,
I am not surprised you felt deflated - and you think your " is about to collapse." is about to collapse. I have been there and at times still am. I try to be positive and try and lead my life as I did, obviously I am retired and was forced to retire early from a job a loved - Plant growing but that was to demanding, as there is more to that than meets the eye. retirement was horrible - Now I tolerate it.
Sorry for the long post but reading your plight I felt I had to respond..
I wish you well and try and bee positive good news your tumour shrunk no matter the amount and hoping the other is as your specialist says it could be " inflammation "
Oh dear no wonder you are feeling a bit flat ,my motto in life is to take one day at a time >it’s all any of us can do . Bad news is only really bad if there is nothing to be done, sending you a huge HUG & my very best wishes .
Pleased to hear your tumour has shrunk but the other news is not so good
I am really sorry to hear that . it is a worry. Not knowing is always worse but your consultant is on to it. Try not to worry.
Youre the one who reassures other people
I have tried to do the same as yoù leaving a half hour extra to establish breathing before appointment and got caught out when i had to drive around looking for parking space for over 25 mins. I was going for ECG because of breathing , had to go straight in still completely breathless I dont know how much that affects the result?
Good news about tumour and mixed feelings about your general day to day conditions. As you are clearly a man who has probably experienced lots of times when its hard going you know that you must focus on the things that are positive until you know more . What I do know is that you should retire and try to enjoy life as much as you can, someone says that you want to write a book why not make that your focus instead of work. Wishing you well and more good news soon.
As a follow on and your house of cards. Would it be so difficult to retire
You do have lots of interests. I do not know how you manage it all with working full time. I did not want to retire it is really a blow. I was able to take voluntary redundancy 20 yrs ago when 4 posts had to be reduced when in the NHS four area laboratories joined together and rescheduled the work load between them. I loved my job and it was hard to leave. Could you do part time .?. If not there is a multitude of other interests to add to your existing interests especially if in a city. You must have a lot to share with other people? Do you know about the U3A?
I'm sorry your appointment did not go as well as was hoped. Glad for your good news that tumour has shrunk. Grateful for that, and praying that future tests will show only good results. J
Oh my, 2greys. I never knew the distance you had to walk to get in to the surgery. And up a flight of stairs as well? No lift? That's horrible. At least the tumour has decreased in size. Don't forget the breathing exercises.
I have been out of touch for a while with a chest infection. As Im feeling a lot better I am now taking time to catch up on the forum news and have just come across your post. When I read it my heart dropped and I realized what a huge part you play on this forum and how much you are appreciated. Others on here have extended their good wishes and I cannot add much more. However, although you will appreciate every one of those posts there will be times when alone that you will be turning negative thoughts around in your head. These are the dark times which we all experience from time to time. You have so often helped us at some time or another with your strong and accurate words of wisdom together with your excellent research, Because of this I would ask you to ask yourself....how would I answer others in a similar situation to the one I'm in now?
Your inner strength is what is needed now as you will know. Regard it as another hurdle that has to be overcome in life that has to be dealt with practically as well as emotionally.
You are such a valued member of this forum and I so look forward to reading your excellent and informative posts. However, while this cloud hangs over you, please, please carry on doing this as it is what you are so good at. It will also take your mind off uncomfortable thoughts. We will all be crossing our fingers for you that the next news you have will be much better. And as for retiring, believe me, with your expertise you will certainly find other absorbing ways to fill your time. And hopefully we can all reap the benefits. (Just teasing)
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