I've joined several boards on here: initially PMR because that's what was diagnosed first, then the Lung board because after I saw the rheumatologist in January this year for the first time he said he'd like to try me on methotrexate but wanted a clear chest x-ray first - and that's when the fun really started.
The x-ray revealed 2 growths: a 4cm growth in my right lung, and a slightly smaller on eon my right kidney. The kidney was soon discounted as benign and I was told that I'd just be kept an eye on (which reminds me, it's coming up to 6 months since the ultrasound).
The lung, however, was more problematic: I was put straight on the cancer pathway (despite not knowing whether or not it was malignant) and over the next 2 months and various CT/PET-CT/Bronchoscopy they still couldn't confirm so whilst a needle guided CT was recommended the waiting list for that was longer than an operation, so on day 72 at the beginning of April after the x-ray the top lobe of my right lung, together with a major artery, was removed. Normal time to be in hospital is 4-7 days. Due to the steroids it took me 10 days to get discharged. I'd had an air leak (for those of a certain age, I sounded like Orville the Duck for 4 days) and despite a drain there was still liquid sloshing around.
I'd also had to taper fast from 30mg to 10mg, although as I was called in early I'd only got to 12.5mg. 6 weeks after the op I had to increase the dosage back up to 15mg and now (4 months post-op) I'm about to go down to 9mg on Monday.
I'm not due to see the rheumatologist until late September, although they are available on the phone.
I went to the doctors with a couple of little niggles a couple of weeks ago, the one causing me the most concern was a droopy eyelid which I'd had since the operation on my lung. Just after the operation, it looked as though I'd had a stroke. The doctor quickly diagnosed it as Horner's Syndrome and wrote to the consultant and I was called in for an unexpected chest clinic appointment on Thursday.
As per usual, there were problems at that hospital. I really haven't been impressed so far - the operation was actually carried out at another hospital with a chest/thoracic specialty and the doctors come down to my local hospital once a week. After arriving slightly early for my appointment and waiting for 35 minutes, the registrar came out and said that I should have been sent for an x-ray so off I trotted and was back in the department in 20 minutes. Called straight in - I still have fluid in the apial space at the top of my lung but it's decreasing. He was going to discharge me - until I mentioned that I'd already got a November appointment and the doctor's letter re my eye. He examined it, and confirmed the diagnosis - a droopy eyelid, less reaction to light and a small pupil as well as painfully dry eye (and less sweating on that side of the face, although I haven't actually noticed that!)
The bad news: it's incurable. The doctor thought it might have been caused by the operation, the registrar thinks it's probably the epidural (they had to have a couple of goes at getting that in).
So another department joins the list: I'm being sent for another CT because it'll show the nerve damage, and also to opthamology. He thinks they'll probably try botox.
So from being a reasonably active 68 year old with few health problems (a bit of osteo arthritis and osteopaenia) I'm now under rheumatology, chest, opthamology, and urology.
I haven't worked since the start of April (no I haven't retired yet) and haven't shot a music gig (my main hobby and love) since last October because I can't lift a full frame camera. In fact, I've just sold all my camera gear and bought a much smaller camera that can still change lenses.
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ladygigger
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I am sorry, what a prolonged , painful and frightening ordeal. I hope that your health improves considerably and you are able to reclaim your beloved hobby in some form. You sound resourceful and brave. 🌹
I concur with SheffieldJane’s remarks: your resilience is remarkable! Keep it going along with your sense of humour. Yes, I remember Orville 🙂. The adjustments to your lifestyle have been necessary (“I wish I could fly, way up to the sky, but I can’t”) and acceptance doesn’t mean you can’t keep the hope alive. I wish you all the best with your health issues and especially in achieving your goal with the help of your more manageable camera. 📸
I am so sorry to read this. It is a shocking story but hopefully it will be all sorted and plain sailing now. I know that eye problems can often be sorted so I have my fingers crossed for you. You have been a very patient patient!
My husband had an upper lung lobe removed - he had quite a scar and the chest surgery specialist said they'd practically cut him in half! Think he was in the full 7 days - I traipsed through from Perthshire to Edinburgh for what felt like ages! It was done just before Christmas - but at the Easter we drove to the Dolomites for a delayed ski holiday and he actually had skis on his feet and slid down some blue runs!!! He was only in his early 40s but it was after 4 months of chemo and a month of radiotherapy too.
So I hope you recover as well as he did - I assume your lesion was benign?
Thank you all for your kind comments. I keep being told that I'm stoic, but I've always been of the 'what must be cured must be endured' school or alternatively looking on the bright side of life.
I did lose my rag somewhat when the growth was first found and my partner was the one to burst into tears and wail that I was going to die. He got a right verbal kicking: I needed support, not to have to support him and he could shape up or ship out.
I must admit that I did cry when it was confirmed that the growth was benign and no further treatment required. I'll just be glad when I can walk up a hill without getting so out of breath - the weight that I've put on due to steroids probably isn't helping!
4 months later still on the long slow road to recovering and looking forward to getting out with my camera again. I have continued to take photos since being diagnosed with PMR and being off work since April, initially with my phone camera then I borrowed a compact and now I've got a Micro Four Thirds camera (OM system - or Olympus, as it used to be known). Who knows whether it'll be able to cope with low light gigs? I'll find out eventually!
Attached is one of my favourites from last year - Billy Ocean performing at a festival in Solihull. I was so lucky last year and got to shoot some amazing bands.
"He got a right verbal kicking: I needed support, not to have to support him and he could shape up or ship out"
You sound just like me - and I laughed out loud at that! My mother and brother were like that when OH was so ill "we can't bear to see him so ill" and never offered any practical help at all. Not sure how they thought we all felt about it, and I had two not quite teenage girls and his mother to cope with as well. And then she decided he was going to die and she didn't want to outlive him, turned her nose to wall and popped her clogs 10 days later! He had the last laugh though - survived another 30 years.
I think it's from long practice: my mother, bless her, was an absolute hypochondriac which meant, unfortunately, that we stopped listening to the constant catalogue of assumed ailments. Eventually she died from a brain tumour but, being mum, not just any brain tumour: it had been there for over 20 years and had ossified (her skull had grown round it). As it was so rare, I gave permission for her medical records to be used as a teaching aid.
He gave a masterclass in performance. In fact, that weekend was pretty epic: Shalamar, Sister Sledge (one version of - there's two hanging around now, this one has Kathy in it); Dr and the Medics (Spirit in the Sky), Bad Manners and Kool and the Gang (who were also absolutely amazing).
I also got to shoot Jools Holland, Stevie Winwood (showing my age there) - as well as Geno Washington, who I first saw at the age of 15 when I sneaked into the local RAF club), Ronan Keating, James Blunt, the Waterboys (disappointingly boring), the Christians, del Amitri - all great bands from the 60's to 00s. We also covered a fantastic folk festival near Buckingham and supported young and up and coming bands at a couple of NWOCR (new wave of classic rock) festivals. Himself is having to keep our music web page going at the moment as I obviously have no current content.
PMR obviously had to take a back seat once the growths were discovered, but I'm back on it now, back to walking (up to 2 and a half miles but mostly about a mile) and can't wait to stop being autoimmune so I can mix more. Next taper is due on Monday, to 9mg - and I've already downloaded your very helpful dead slow taper fact sheet! Wish me luck..
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