Bad News (Secondary Cancer)

[arthur123]

Following my last post when my blood results in February were still good, I unfortunately developed a chest infection with persistent cough that turned into Pneumonia. I was hospitalised at the beginning of April and they drained a litre of fluid from my lung and discovered a tumour on it. I then had a biopsy on the lump and a drain inserted and had another five litres of fluid drained. They then told me that I have Adenocarcinoma of the lungs as it has spread to the other lung and is stage 4. This has been a big shock as I have never smoked and had a clear chest X-ray last year, so it's frightening that this cancer can get this bad so quickly. I urge anyone who has ever smoked to get a chest X-ray done regularly. Anyway, I am starting chemo in a week's time but it is a terminal illness so I don't know what effect it will have on my CLL but I've been told that the lung cancer is the more serious of the two. I will keep you posted.

[Newdawn Administrator]

No words to express how sorry I am to hear this Arthur but your experience serves as a warning to us all to keep on top of X-Rays particularly if there's recurring chest problems.

I'm shocked too at how quickly this developed when you'd had previously promising results.

I wish you support and encouragement in your chemo treatment and sincerely hope that it will work out for you. It must be a dreadfully worrying time for you and your family and my thoughts are with them too.

With warmest best wishes Arthur, please do keep us posted, we will all be thinking of you.

Newdawn x

[sparkler]

What a massive shock for you Arthur and I can't imagine how you must be feeling. I don't know what to say either - all words seem inadequate.

I hope you feel you can lean on us here and find some support and comfort from us too.

I'll be thinking of you.

sparkler x

[jibs60]

Hello Arthur,

Really sorry to hear that you are having to deal with this when, frankly, CLL alone seems enough to handle for anyone.

In the course of my doctoral research into online health support and information exchange, I recently came across this site. donate.lungcanceralliance.org/

It now incorporates an online site set up by a woman called Karen Parles some years ago. Karen Parles was diagnosed with terminal lung cancer and given a prognosis of months to live (you can read her story here lungcanceralliance.org/get-.... Not willing to accept that, she set up a website bringign together resources from all over the world. Using information from that to inform her treatment decisions, she went on to live a further twelve years. It is a US based site, but seems really impressive in its range of resources and information.

Hope it helps in some small way if you haven't already found it by yourself...I think it is also testament for everyone here to the potential power of online collective knowledge and experience in informing our decisions about how to manage all aspects of disease and its impact on our lives...

Jules

[roan]

No words can express how sad I was to read your news, as if CLL itself is not hard enough to cope with. Wishing you and your family positive thoughts and prayers. Thinking of you

Ann XXXXX

[HAIRBEAR_UK Founder Admin]

Hi Arthur

Thank you for letting us know your news.. There are a couple of Lung cancer support groups within the on-line Macmillan community and website. the most active seems to be : community.macmillan.org.uk/... . It may be a place you can gain information, learn and share with others in the UK living with and fighting lung cancer. I know from experience how supportive and knowledgeable Macmillan are, they have a very useful helpline supported by professionals too.. 0808 808 00 00 website: macmillan.org.uk/Home.aspx

I know everyone here and in the Mac CLL group will be rooting for you. Wishing good vibes for next week, keep us posted if you can.

Nick

[pitbull]

Wow Arthur that is shocking news and such bad luck, I am an ex smoker and your plight serves as a warning to us. My thoughts are with you and your family during this difficult time.

Kirk

[Pozd]

Sorry to hear that will be thinking of you..my mum is going through the same she had half her lung taken away 2mths ago she starts her chemi this wednesday..i wish you all the best xx

[arthur123]

Thanks for all your good wishes. It is a difficult time for my wife and I as we have a teenage autistic son who we are trying to shield from this as long as possible as he gets very anxious. So we are trying to carry on as normal for as long as we can. I forgot to mention that during all the tests they discovered that I have high readings for prostate cancer but in view of the seriousness of the lung cancer they are not looking to investigate into it further. I have asked whether any of this is related to the CLL but have been told that all three cancers are unrelated and I must just be unlucky. They said there is no genetic link either but I must just be susceptible. It does cross my mind that someone up there has it in for me! However, I am remaining positive as getting depressed about it only makes things worse. I will take a look at all the websites you have mentioned which I'm sure will give me a better understanding of my situation. I will keep posting regular updates on here and let you know how I get on.

[anaturallearner]

My thoughts are with you at this time - dealing with the shock as well as the treatment must be hard.

People with CLL are susceptible to other cancers appearing, especially after treatment. Our immune system doesn't work as well as it should to wipe out any nasties. What I've read indicates we're most at risk from skin cancers. I guess the appearance of other cancers is down to the same kind of bad luck that gave us CLL in the first place.

It's okay to grieve - if you feel the need to vent any anger or have a good cry, don't hold back. I agree, I'd do anything to avoid depression (it's dogged my life enough!) but we're entitled to be emotional about tough stuff like this happening to us.

HUGS

Beverley

[Newdawn Administrator]

I absolutely agree with Beverley on this Arthur, if you ever want to vent or need support, please come on here. Having an adult autistic son myself who I have to keep my diagnosis from, I fully understand the serious added emotional pressure this puts on you.

As Nick says, there's good help and advice from Macmillan plus groups on there who can advise and support with this specific cancer. Doesn't matter where you get the support, just know people are happy to give it anytime.

Your news has touched us all and there's massive thoughts and best wishes willing you along. A colleagues husband was diagnosed with grade 4 lung cancer 6 years ago and despite a poor prognisis is still with us battling all the way. Try to keep as positive as you can and you're right Arthur, it's unfair beyond belief!

Hugs,

Newdawn x

[louise66]

HI Arthur,

So sorry to hear your news, what a difficult time you and your family must be going through. I wish you all the best for the treatment you will have.

Take care

Louise

[Barbarann]

Hi, Arthur,

I'm not the most eloquent writer, but want to express my support, and am thinking of you with your treatment, and of your wife and family.

Barbarann

[MsLockYourPosts Passed Volunteer]

Arthur - I'm just catching up with things after a period of computer issues. Like the others here, I am so sorry that this has hit you, but feel that you certainly have a positive attitude going into treatment and hope that you will, one day, be posting stories similar to the two here about people who beat the odds. Sending lots of positive thoughts to you and your family!

Pat

[arthur123]

Hi,

This is Arthur's wife, Susan. I'm sorry to report that he passed away on 26th July, I should have kept this thread updated but he was in and out of hospital and the end came quicker than expected. I have only just found his log-in details and thought I'd better let you all know. From when he was diagnosed with the lung cancer in April, it all became a nightmare for us. He had CLL for four years and we always thought that was his main battle and he had been doing so well with it. However, the chemo for the lung cancer didn't go very well and after the first one he was hospitalised for 6 days and nearly died. I didn't want him to have it again but the consultant said that the tumour would just keep growing if he didn't continue with it and that they would give him a lower dose, so he went ahead with the second cycle. Unfortunately, the same thing happened, just a total collapse of everything and this time he was in hospital for 17 days before his liver and kidneys failed. It has been a terrible time, I still can't believe he's gone, we were together for 24 years and every day is like a chore to get through but I must continue for our son. I would just like to thank you all for your kind messages and support you gave him.

[Newdawn Administrator]

Susan, I'm reading your very brave message through tears and feel devastated for you and your son and family who have lost someone so special.

We were privileged to have 'met' Arthur on here and hope that the support he received and gave helped him during his illness. To have contracted this secondary cancer was so brutal and unfair and I'm desperately sorry for your loss.

I too have an autistic son and know the added pressure that this brings. I hope that he can cope and understand at this time. It's an added pain that I can identify with.

Please feel free to come on here at any time if you feel we could help or support you. Alternatively please feel free to send me a private message if you ever need to talk.

With sincere condolences,

Newdawn x

[arthur123 in reply to Newdawn]

Thanks for your kind words, my son has been very strong and has coped with losing his father at the age of 18 very well considering. I have arranged some counselling for him which he is starting next week not only for bereavement but it will also help with his other issues arising from his autism so I hope it will all work out well for us.

[Newdawn Administrator]

I certainly hope so too Susan, it sounds like he's being very strong and I hope the counselling helps in lots of ways.

Sending you every good wish for the future, my thoughts are with you.

Newdawn x

[Hidden]

Dear Susan

Sometimes when news so sad reaches us, it feels like a physical pain. I wish that one could reach through the computer to offer a hug, or a hand to hold for just a while. I lost a dear friend in similar circumstances a while ago and his wife said that it brought a little comfort to know that so many people cared. I hope we help you a little too.

I am sure, many here will be thinking of you and wishing you the strength to carry on. Thank you for letting us know it must have been a hard thing for you to do. We are like a family here so if you need to share, as Newdawn said we will be here for you.

In sympathy

Bub

[sparkler]

Dear Susan

Thank you very much for letting us know this sad news about Arthur - it must have been so hard for you to write and I can't imagine what you are going through.

I do feel privileged to have known him and both pleased and humbled, that he felt able to share what was happening. I know that he touched many here and we will all be remembering him with genuine fondness.

My thoughts are with you and your son and I wish you well for the future.

We are here for you if you need us.

sparkler x

[HAIRBEAR_UK Founder Admin]

Dear Susan

Thank you for thinking of us at this difficult time for you. I am devastated to read your news. I wish you to know Arthur was instrumental in aiding us create and develop this resource for others and was one of the very first pioneers to write about his CLL story to help others. I am lost for words.

My sincere condolences and thoughts are with you and your son. .As others have already mentioned Please come on here at any time or use private messaging or the Association to talk anytime we will help if we can

Best wishes

Nick.

.

[pitbull]

Susan I was so saddened to read of your devastating news.

I hope you can take some comfort from the fact that Arthur had friends on here and we all must stick together during these difficult times. Like others have said, be strong for your son and if you ever feel the need for some comfort or just to have a rant then this is the place to do it.

Kirk

[PaulaS Volunteer]

Dear Susan,

I was so very, very sorry to hear this. I remember hearing about the lung cancer, and had wondered how Arthur was doing....

Grieving with you,

Paula

[AussieNeil Administrator]

Susan,

Thank you for your bravery in letting us know. Even when Arthur shared his bad news of his lung cancer diagnosis, he was thinking of others in suggesting how those at higher risk of lung cancer should take precautions. It must have been particularly devastating with Arthur never having smoked to be diagnosed at the late stage of such an aggressive cancer.

I too have an autistic child and know how hard it is for them to accept change, so I know the two of you will have been through even tougher times as your son struggles to cope with the anxiety resulting from the sudden loss of his father. I hope you have found a good counsellor that understands autism and that this will help both you and your son through your grief and beyond.

I'm sorry that we weren't able to be there for you and Arthur during those tough times; please don't hesitate to reach out and accept offers of help.

I've covered how to use the Private Messaging facility here:

healthunlocked.com/cllsuppo...

You could use it to start up a private message discussion with any or all of those that have offered to be there for you in these responses - and you can include me in that group.

Neil

[arthur123]

Thank you all for your comments, it's good to know that Arthur was well regarded by so many people. I will take a look at the private messaging suggested by Neil but please bear with me as I am still sorting out so many things that I don't have a lot of free time. People tell me to keep busy but I think sometimes that I'm too busy and don't have any time to grieve properly. I promise I will be back soon xx