Just Diagnosed: Hi, I hope I've got the... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Just Diagnosed

ianrupert profile image
13 Replies

Hi, I hope I've got the correct area to post. I've just joined after being diagnosed with lung cancer. It has been found by accident through having a huge abscess (backside area), that I tried to treat myself, then seeing the doctor about it, who sent me for routine blood tests to see what the infection was. These tests showed I had an infection going around my body which must have been the abscess, but showed something could be wrong with my liver as it was showing markers for infection. I was throughly checked for the liver, without any problems, I was sent for another blood test, but this time for a chest x-ray as well. The day after I got the blood results showing my liver was now not showing anything un-towards except that the infection had significantly been reduced (with antibiotics) and the abscess has all but now gone. By last Friday 11th of July, I was given the diagnose of lung cancer by my doctor. I am booked in next week for a CT Scan and the day after with the consultant. It feels all very unreal as I have no symptoms what so ever. Yes I was a smoker for a long time until last friday and I've stopped. No withdrawal symptoms at all except if I smell tobacco smoke I physically want to vomit. Over the years I have cut down and down and down, but never been able to stop. I'm elated I've stopped, something in my head finally Clicked or the penny dropped when I was diagnosed. I also suffer from depression which was caused by bullying from work colleagues and I have not been able to work for a year in fear of my job, negativity at work and the bullying. I was due to start work again in September, but not now I've got this battle on my hands. Other types of cancer are in my family and my partner has just gone into remission from bowel cancer, a few horrid years have gone by, but I just needed to post this to say that I refuse to let cancer beat me, my mother needs me as I'm also her carer, my partner needs me so we can still drive each other crazy (in a very good way) and the cats need somewhere to still sleep...on me. My Name is Ian and I've just turned 53. Regards

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ianrupert
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hedgehoggy profile image
hedgehoggy

Hi Ian

Firstly well done for giving up the smokes. I had given up 4 years prior to being diagnosed with lung cancer. I am a 56 year old female and I was diagnosed in Feb 2012. I had coughing symptoms with blood on Christmas day at 4 a.m. but did not know what it was then. Anyway down the line I had an operation and had it removed and surrounding lymph glands. My cancer was on the heart side. It was followed with chemo with a long gap in between, more chemo and was clear on the last scan. I do have a nodule on my other lung that is of concern and have to have another scan soon. It is quite a shock when you first hear that you have cancer and even 2 years later I can still hardly believe it, although I have regular scans and appointments. Keep strong, you are not alone believe me. Find out what you can and ask loads of questions. Keep in touch. You do not say what area you are in but hopefully you have a good hospital in your area or can get to one.

Best wishes

Hoggy

ianrupert profile image
ianrupert in reply tohedgehoggy

Hi Hoggy, thank you for replying to my post. I can't believe how relatively easy it has been to stop smoking, for all those years I cut down. I suppose it was the shock on my brain. I'm finding your story very interesting because you are doing what I want to do, is to survive. Are you scans the CT type? My mom and partner are coming with me for the scan and consultant appointment next week, so I will have loads of support, both are very strong characters when they need to be and my mom will ask questions, she is like the Spanish Inquisition, but with a lovely tone of voice. It has been a shock, I've had a few tears, If I go to bits after seeing the consultant that waits to be seen. I'm going to keep strong, I have two main hospitals and one smaller one that have excellent facilities and they all belong to the same NHS Trust. I'll keep in touch as being able to post here and listen to others is a great inspiration.

Best Wishes to you

Ian :)

hedgehoggy profile image
hedgehoggy in reply toianrupert

Hi Ian

Yes I have regular chest X-Rays, CT scans and also Pet scans. Pet scans are more in depth and you should receive one of them at some stage. I have several appointments with my surgeon and oncologist on a regular basis. Unfortunately my cancer nurse specialist is non-existent but I have found out a great deal whilst doing my research. Ask for a print out when you are diagnosed of your details otherwise you will forget it. It is so difficult to remember when you are told things at the time. I have also kept a diary which is useful to look back at treatment and medication. It is always good to have dates at hand.

Hope this helps and good luck for next week.

Hoggy

ianrupert profile image
ianrupert in reply tohedgehoggy

Hi Hoggy, sorry for the late reply, my head is a bit messed up, but before carrying on I've got to work out the negative and change it into a positive, I've done it though with the help of music one of my hobbies and going around Poundland!!! You have given me two excellent pieces of advice, to keep a diary and get a print out of my diagnosis, thank you. I'd never hear of a Pet scan before, so that was another piece of info I did some research too. Please keep in touch and tell me how you are too. Ian

LorraineD profile image
LorraineDPartnerRoy Castle

Hello Ian

Your post is in the right place and I hope you get some useful support from the forum.

I would imagine this has been a strange week for you and there will be questions you need to think about.

Hopefully when you have your scan the consultant and/ or Lung Cancer Nurse specialist will be able to let you know what treatment might be best for you. You may find our Lung cancer: answering your questions pack of use. It is available on our website roycastle.org or call our free helpline on 0333 323 7200 option 2.

Well done on stopping smoking, that will stand you in good stead for any treatment. If you are looking for any support we have another forum on here, called Quit support that has lots of good hints and tips on it.

Hoggy

hope things go well with the scan and you know we are here if we can help,

best wishes

Lorraine

on behalf of the Information & Support team

ianrupert profile image
ianrupert in reply toLorraineD

Hi Lorraine,

Thanks for your post, very much appreciated. It has been a strange week, my head is still spinning, but I do have so much support at home and that includes my two cats!!! Although I've only been here for less than 24 hours I'm getting some great advice and help. Thanks for the links and phone number although I'm finding it very hard to read official information at the moment. I have read about the different types which does worry me, however at this moment the treatment doesn't. Keeping positive has always been a key ingredient in my life.

Regards Ian

veecatz profile image
veecatz

Hi There, it was good to see you telling us your story - I was in your shoes re the lung cancer 12 months ago. was told it was inoperable because it was wrapped round major blood vessels. I prepared everything ready to pass from this world. I arranged my funeral burned all my documents etc etc. Then the Oncologist said there was a possibility she could do something for me, then began my journey of chemo and radiotherapy and a 20% chance of it working. Mine was squamous cell and its important to know which type it is as there are different treatments for different types of lung cancer. Long story made short - I am still here and in REMISSION. I am due to get my 3 month check on 9th August. My treatment was very radical and it made me quite poorly, however, different people react differently. I would be thinking about getting a stand in to help look after your mum, tiredness was a major problem - but more than that it was exhaustion - not relieved by sleep. IT WAS WORTH IT!!! I have been tinkering in the garden and I am alive and appreciative of everything and everyone around me. If ever you need to talk some more, feel free, I will give you my email address and can give you any tips that helped me. You are right - it is attitude that will help you through 2% of us live for 5 years or more - I hope you are the other one!!!

ianrupert profile image
ianrupert in reply toveecatz

Hi veecatz, love the username. Sorry for the late reply, I've had a bit of a head spinning around. You've given me some good advice and found your experience of the illness very informative and helpful. What seems to have happened to me is that I've started to clear the junk out now, all the stuff I haven't used for ages or don't use. I've got rid of a lot of stuff, but it makes me feel better and is helping to sort out my mind too. I've had a hell of a year suffering from depression due to being bullied at work and have not been able to work. I was due to start work at the end of August, but I have decided not to go back which is the best decision I've made so far. All that stress and strain of the job has just flown out of my body. The depression and anxiety are still there, but very much at a lesser level, I've haven't received any real type of money for the last six months from my job, some help from the state, but it's been an excellent experience of cutting things out I don't need and living without stuff that I really don't need, that will help me for the future. Sorry I am rattling on and I'm good at that.

I think it is brilliant that you are now in remission, found this interesting about how your body felt, I'm a great believer about positive thinking and I really to think it makes a difference with so many things in life. A very nice thing to say to me that through 2% of us live for 5 years or more and you hope I'm the other one.

When you said you were poorly, how did you feel? If you don't mind, I would very much like to hear from you again and any help and advice you can help me with are so gong to be gratefully received.

Ian

veecatz profile image
veecatz in reply toianrupert

HI Ian - lovely to hear from you!! Like you I cleared out everything prepared my funeral etc (even decided on "Smoke gets In Your Eyes" as I went through the Crem curtains!!! Only people who are going through this can understand where you're coming from! I have a wicked sense of humour! However - it took some time to sink in and i had a bit of a brain storm when I realized the enormity of it all. I decided to approach anyone and everyone who could help, and MacMillan are brilliant. DLA should be applied for on your behalf by them - but ask its around £550 x 4weekly and non means tested.

As for how I felt on the chemo and radio - well I felt very very tired and I was very nauseous - the drugs they gave me didn't seem to work as well as they did with others. In the end I was given some anti sick tablets that apparently cost £100 for 3 tablets - Yo! as the advert says "Because I'm worth it"!!

I had 3 cycles of chemo then concurrent chemo and radiotherapy (20 doses of radio) The chemo drugs they used were Cisplatin and venorablene(or sommat like that!) I didnt plan anything for the time I was having treatment, some days I wasn't so bad - others I found it hard to even get out of my chair. I had to have various biopsies done and it took 3 attempts because the tumour (size of a tennis ball) was wrapped around my major blood vessels, so the biopsy was difficult. In the end a sample was obtained so they could start the correct drugs. My email address is veecatz@live.co.uk and my name is Vera Hemsley. I am more than happy to give you and your family support and tips about the process I went through. Take any help offered, and use the MacMillan people who you can contact on the national number(google it). They helped me with benefits etc. You seem to have a good attitude, and as for those at work - well bullies are cowards - which you certainly are not! I wonder how they would cope with what you are dealing with? When you get through to the other end of this - you will still be the same person, but stronger and bigger than many many others. Values and perspectives have changed for me . . . . and I can only speak of my experiences, but if I can help on your journey and you need a compatriate who has 'been there' then contact me. I can give you my telephone number on email, and would be happy to help you and your family if I can. I want to have a conversation with the other 1% in five years time!!!! :)

ianrupert profile image
ianrupert in reply toveecatz

Hi, Its Ian,

I will reply shortly in full, saw doctors (had scan yesterday) today, I have a cancer nurse now, the hospital seem to know what they are doing and although things aren't brilliant at the moment, I gave them something to think about with my positiveness.

Ian

veecatz profile image
veecatz in reply toianrupert

Hi Ian - glad you are keeping positive - I know you will be very busy with all the tests etc, but am thinking of you and will be with you all the way. My user name is due to the fact that like you I am very much a cat person, Poppy is the love of my life since I got her after treatment. She brings me 'breakfast' on a regular basis, but unfortunately for me she sucks the mice rather than harms them!!! subsequently I am getting pretty good at catching them and releasing them again. I much prefer wheatabix, and she usually joins in and licks the bowl out after!!! All the best to you and your family, and will keep everything crossed for you!!!

My husband was diagnosed with lung cancer in 2010 after a routine xray. It was an awful shock to us both at the time (he gave up smoking that day). Prior to full diagnosis he had a scan and biopsy.

He was referred to a wonderful surgeon who decided as he was quite fit the best chance of a complete cure was to remove his whole lung. The operation took place in November 2010 and he came home after just 4 days. Cancer cells were found in just 2 glands so he was referred for chemo which lasted from January to March 2011. It wasn't great but not as bad as it could have been.

Shortly after he had a setback as he had an internal bleed but once the surgeon had drained the fluid he soon recovered.

Its now almost 4 years since his diagnosis and he now sees the oncologist every 6 months and has a scan or an xray on each occasion. He has just had another all clear.

He is fit and well and able to do everything he could before the 'illness'. Thanks to the wonderful care he received we are enjoying retirement. There is life after a diagnosis of lung cancer.

Best wishes to you in your journey.

ianrupert profile image
ianrupert in reply to

Hi there.

Thank you so much for your post which I found interesting and informative. Mine was found by an x-ray that done as a blood test showed I had an infection someone in my body. I gave up smoking when I was told last week and I've had no withdrawal symptoms, pity that couldn't have happened when I tried to tried to give up smoking so many times before, but at least I've now done it. You've given me so much encouragement and I thank you for that.

Ian

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