Living with a Diagnosis: I'm new to... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Living with a Diagnosis

DudleyBoy profile image
11 Replies

I'm new to this and was trying to respond to a post by...

Jaynelovestotravel

...but everytime I tried I found I was restricted!! I don't know how to resolve this so let's hope this works.

I've had a number of complex respiratory problems for many years and it is perhaps fortunate that I routinely attended the respiratory clinic at my local hospital in Norwich every 3-4 months.

For most of 2020 the radiograpy unit attached to the clinic was closed due to Covid-19. In May 2021, however, I had an x-ray prior to seeeing the consultant who showed me the radiograph and a new mass in my upper right lobe. He referred me for a CT scan which more or less confirmed his suspicions. A PET scan followed before an endobronchial ultrasound [EBUS] biopsy. Within a few days the multi-disciplinary team [MDT] met, confirmed the diagnosis and referred me to oncology. I was very unwell at the time, not so much due to cancer but because of the various respiratory conditions which conspired to make breathing difficult, increasingly challenging mobility, and severe weight loss leading to cachexia [muscle and tissue wastage]. The oncologist, for whom I now have the greatest respect, was concerned that I may not be well enough to cope with treatment and comprehensively went through the various options. She was reluctant to offer a prognosis but after being pressed suggested, at worst, I may have 4-6 months. If I went ahead with chemo she said she would prescribe only one chemical agent, rather than the usual two. As seems to be the norm, the decision was mine and I decided to proceed. I had several cycles of carboplatin at three-week intervals beginning in June, ending in November. Side effects were minimal, from what I can gather, and mainly fatigue and nausea with frequent vomiting. I had problems maintaining correct blood levels and needed several transfusions. I've had a poor appetite for a while and maintaining weight at 55kgs was a challenge. The worst part was that I lost my taste for tea and wine. A disaster for me as I usually enjoy umpteen cups of tea each day, although I saved a good deal on wine. Fortuitously, that only lasted about a month.

Slowly, slowly, I started to feel a little better.

At the end of treatment a CT scan showed the carcinoma had reduced from 61 to 58mm which was clearly a step in the right direction. At this point my onolcogist offered me an extension of about twelve months.

In December I commenced three weeks' [with weekends off!] radiotherapy with which, because of my engineering and technical background, I was fascinated. No side effects other than increased fatigue and a sun-burned chest. I must play the now framiliar waiting game with a CT scan scheduled for 11th March after which, following the radiologist's report the MDT will meet before I see my oncologist at the end of March when we will review progress and consider the next steps.

I'm 78 years young and have had a fantastic life. I encountered several hurdles along the way but benefited from them all and learned the art of humility. By the time I was 40 I had done more than most in a lifetime. I met and married three beautiful women [there were more but I couldn't marry them all!] and have nine wonderful children who have given me 17 terrific grandchildren. I have absolutely no regets and if my days are numbered, I'm fine with that. Very sadly, my first wife died of an aneurism, my second of lung cancer and my third, present, wife is in residential care with Alzheimer's. In their own way, each of them taught me how important life really is. I'm totally relaxed and positive about what lies ahead and eagerly look forward to what each day has to throw at me. When I put my head on the pillow each night and thank my maker for the day just past, I like to feel I've achieved something, however little, and I sleep very well.

Remembering that no one can take away our memories, it's important to be thankful for what we had, and have, and continue to be positive. I avoid Dr Google like the plague and rely instead on Macmillan, Roy Castle, HU, Big C, and the good old NHS. I know I'm fortunate in that my local hospital is up there among the best and has one of the most advanced cancer units in the country. I have nothing but praise for the entire medical team who have looked after me so well with courteous efficiency.

God bless you all.

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DudleyBoy profile image
DudleyBoy
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11 Replies
RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Hi DudleyBoy

Sorry to hear you have lung cancer and you have certainly have had a journey. But what a wonderful, encouraging and inspiring post, thank you for sharing. I am sure this will help some members on the forum.

I think there could be an issue with health unlocked at present for some members, I shall pass this onto admin for them to review.

Hope your next scan has some good news for you and take good care of yourself.

If you would like to discuss anything you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Dear DudleyBoy

You are very welcome to the forum and I meant to add in the links to our information booklets, they range from diagnosis, the different treatments to living with lung cancer: roycastle.org/help-and-supp...

We offer online support groups through zoom and if you are interested in registering for these you can do so through this link: roycastle.org/help-and-supp...

Hope you continue to be well and enjoy your life.

Kind regards

The Roy Castle Support Team

Ellejayb profile image
Ellejayb

What a wonderful uplifting post. Your selflessness and gratitude shine through. I wish you well and continued results with your treatment.

DudleyBoy profile image
DudleyBoy in reply toEllejayb

Thank you kindly, Ellejayb.

I omitted to say that despite being constantly exhausted I keep very busy mostly with voluntary work for the local NHS and my parish church. I like it that way and it keeps the grey matter alert.

JanetteR57 profile image
JanetteR57 in reply toDudleyBoy

I was drawn to your post - your spirit shines through - are you from Dudley? I'm in Tipton! Sounds as if you're responding to the treatment which is positive but your approach and attitude are no doubt at the heart of it.... I appreciate how poorly you must have been - as I've often been worse with respiratory infections (since my diagnosis in Jan 2011) that have had me and medics concerned. Having loved and lost relatives, your grounding and appreciation for what you've had spills over into helping others - long may it continue - fingers and toes crossed for good results at your next follow up.

DudleyBoy profile image
DudleyBoy in reply toJanetteR57

Thank you, Janet.

Dudley was my favourite pet; a brown and white English Springer! I was born in a suburb of Manhester and farmed for many years in Cornwall before moving to Sussex, finally settling in Norfolk 30 years ago. My children are all over the country although my wife is in care in Norwich and I have two daughters locally who provide great support, aided and abetted by two wonderful grandchildren. That said, since my diagnosis and the initial prognosis, all my children have stepped up and been tremendous.

My respiratory consultant had been baffled by some of my unexplained symptoms for years and in a strange kind of way, the cancer diagnosis answered a lot of questions.

I'll post an update at the end of next month.

Meanwhile, stay safe, everyone, and most importantly, be kind to yourself.

DudleyBoy profile image
DudleyBoy in reply toDudleyBoy

By way of an update...

Earlier this week my oncologist has interpreted the scan of 11th March as follows:

Compared to previous scan of 5th November 2021 and following a course of radiotherapy in December/January the tumour has shrunk slightly.

All other clinical observations significant but unchanged.

As the benefit of radiation can take 2-6 months, further scan proposed in 3 months.

Monitor meanwhile.

So, encouraging news and I think I can spread my wings a bit for the next three months!

Stay safe, everyone.

Ellejayb profile image
Ellejayb in reply toJanetteR57

I too was drawn to Dudley’s post. Please keep shining your light Dudley.

AliR1 profile image
AliR1

Wishing you all the very best , you sound a wonderful human being x

DudleyBoy profile image
DudleyBoy in reply toAliR1

I try, AliR1, and will continue to do all I can...for myself and others.

X

HollyT7 profile image
HollyT7

i just want such a hug from you right now. The latter part of your message hit home so much for me. I just feel so sad

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