Hi Karen

Lordy I'm  glad you are on here!! I  feel like we have a bit in common here!

I have to find way to tell my work colleagues and I cant bear the idea of sympathy or blame.  A lot of people I know are health freaks and think they will live forever and I feel like I've let the side down - how daft is that????????? :confused:

No kids so that is one nightmare I dont have to face.

Pre op information session on Tuesday to tell me and my partner what to expect post surgery. Think all kinds of *** will kick in  then.

Thinking of you and so glad to have you to "talk " to

I will let you know  what Tuesday brings

Hugs

Mushti - my cat's name!

Susan

xxxxxxx

Awesome name for a cat!

Oh bless, I did think the same while I was replying, some of the things you said resonated with me.

I'm feeling your pain, (I have my mum head on)....... the people you work with may or may not have an oppinion about your news, but plenty of people who have never smoked get lung cancer, and healthy ones die after running, who's to judge?

The important one's in this scenario is us, it's happening to us and our sanity needs to be preserved so we have to try not to dwel on it, tell your boss and see what happens.

Me personally, I chose to smoke, I chose to ignore the warnings, and stupidly thought "it will never happen to me" so I am trying to suck it up and own it. I don't want sympathy, just a little bit of kindness to ease me along the unknown road ahead, and if people are indiffernt so be it. 

I would really like to know how you get on with your pre op meeting, as your further along than me, and I will let you know what my cruel hand of fate has given me.

Thinking of you and thank you for being there to talk to.

More hugs xx

Hi Karen

I just wanted to send a message of solidarity and hope to you as you wait for the results of your PET scan, your lung capacity test, and then your meeting on the 15th - and as you process what's happened and think about how to tell friends and children.  It's tough, very tough.  And I think the time you're going through now is probably the worst - it's the waiting and the uncertainty.  

I was diagnosed with lung cancer (7 cm tumour in the top right lobe) in February last year. I found that it can feel as if you're on a roller-coaster as you go through PET scans, CT scans, a bronchoscopy (that was terrible, I will never accept to have another one! and the results were inconcusive anyway, so they scheduled a CT guided lung biopsy which was fine.) I was under the care of the team at Worthing hospital and they were amazing.  I was referred for surgery to Guy's hospital in London, had the pre-assessment meeting in mid-April and had the surgery just over a week later. I am so so lucky that the surgery was successful, they removed the top right lobe, and all the mediastinal lobes on the same side (down the middle of your chest, next to your trachea) as a precaution and two of the nodes were found to have "micro-involvement" according to my surgeon but the cancer hadn't spread anywhere else.  In June and July I had three rounds of adjuvant chemo, and then in November I was given the all-clear.  

Like you I felt extremely calm.  I felt I had no control over what was happening, but I could control how I behaved and reacted. I honestly thought I would only live 2-4 months so I told everyone about my diagnosis as soon as I found out, and put my affairs in order, and that somehow made me feel a lot better about everything.  I also felt (and feel) guilty about smoking for most of my life, but the irony is that I had given up over four years previously!  Telling my husband was very hard, and telling my children was heart-breaking, my three big sons, and one of them sobbing.... like you I felt so guilty. 

I send you every good wish for the next few weeks as you go through the process of the diagnosis, the staging, your options. And I wish you much strength.  You will meet some wonderful people, and I've found that no matter how bad things are, you will _always_ hear stories that are worse than yours, which can be very humbling.  Please keep in touch and let us know what happens. 

Pamela x

Hi Mushti

I wanted to send you best wishes for your pre-op meeting on Tuesday, and for your surgery on the 24th - that's my birthday, so I will think of you specially!  I must tell you that my lobectomy surgery was a whole lot easier than I imagined, the state of the skill and expertise of our surgeons these days is amazing.  Don't get me wrong, it's not a total walk in the park, but it's certainly OK and do-able.  They will give you good pain relilef afterwards, including a little pump which you administer yourself when you need it.  And they get you up and out of bed asap, you will probably have a drain or even two, and a little cart which you have to take everywhere with you hooked up to all the tubes and things.  I met some wonderful women in my ward, all having similar surgery and it was a very positive experience, so I hope this encourages you.  That lovely feeling when you wake up and you know the cancer is _gone_!  

I managed the notification process by telling everyone very soon after I found out tht I had lung cancer.  I told family and close friends in person. And then I told others (all over the world) on Facebook.  The response was absolutely fantastic, so I could recommend this.  We need to take some of the stigma out of lung cancer - it can happen to anyone, and one out of six have never smoked, apparently.  I hope your work mates are as lovely about this as you deserve. 

Sending you every good wish, and I hope you'll let us know on this amazing chat list how you get on. I'm waiting for my 12 month follow-up CT scan and feeling a bit nervous - it feels as if the feeling of holding your breath never quite goes away!  Knowing others who are on the same journey is very comforting!

Pamela x

Hi Pamela

Thank you so much for your kind words and support, your absolutely right, the waiting and uncertainty is hard enough but telling family is the toughest part, the closer it gets the more stressed I'm becoming, doesn't matter how many times I tell myself not to, needless to say this weekend has been quite up and down. 

You have been through such an ordeal and to share that is commendable, it offers a cushion of hope that our surgery and aftercare will be as positive. I am so lucky this was discovered, following a couple of lung infections, a CT scan found a nodule, I had a bronchoscpy but my Dr thought it was TB, and wasn't overly concerned, but a routine scan following pneumonia showed the nodule had grown, a biopsy (holy hell I was terrified) confirmed it was cancer, so thats where I'm at now. just waiting for Tuesday to roll around. 

I think my biggest fear is being told I have cancer somewhere else and this is secondery, or being told my lung capacity isn't up to the operation. In an effort to improve the lungs I've recently taken up golf again after 20 year break, love it, plenty of fresh air. 

It is remarkable your cancer was found and all cleared in 10 months, I'm so delighted for you, and to stay within the forum to support and comfort others is such a magnificent thing to do, I for one am extremely touched by your thoughtfullness. 

I honestly still don't believe it, this state of limbo is the oddest place to be, not knowing what to do or make plans, but I probably will hit earth with a bang once I know whats, what! I'm quite isolated having moved to the highlands 5 years ago so not really surounded by my family or friends, it's easy to hibernate away and pretend it isn't happening, but I will be with them in just over a week and things will be a whole lot harder to deal with.

I'm also worried about what my husband will think if I am given more horrid news, I secretly want to go to the meeting alone to spare my shame if it is worse news, probably not a great idea as I never remeber what I'm told, but I know he would never agree to that.

Thank you again Pamela for your caring, I will let you know how it all goes.

Karen x

Dear Karen and Pamela

Firstly Meli, thanks so much for such a great, warm and reassuring post to both of us. So kind of you to take the time.

Had my presurgery education session today - 2 hours with the  Lung Cancer nurse with a lot to take in about the exercises to be done pre  and post op. , pain relief , nutrition etc

I was the only one there on my own as my partner had to house sit as we are gettting double glazing for the first time - I know, not great timing! :|

It's really hit home now. This is real and going to happen but I kept thinking of what you said, Pamela. It is do able and the techniques avaialble to us are astounding.

Work have told me I can decide how and when I tell people so that's good. Tempted to wait until I have left but that seems a bit melodramatic I think.....

Anyway. Thanks for listening. Would be good to hear from you

Love

Susan xxx

Morning Ladies

I have the best news, Pet scan showed small spread to lymph nodes within the lung, which will all be removed during surgery, and no other locations in my body. I'm so relieved, the wait for that appointment was torture, They did say there was a small area at the top of the right lung that was new but I had a slight infection when I the test was done, so they have put it down to that.

I'm so impressed with your thorough pre surgey session Susan, I asked my nurse if I would have anything like that, but dosen't look like it. I have to travel down to Glasgow for my op (3.5 hour drive) so the chance of meeting my surgeon before hand is highly unlikely. Not quite sure how I feel about that?

I will get a date for this in the next 2 weeks, so really looking forward to going home and spending a quality week with my two beautiful children, before I have the next part to deal with. 

I wish you all the best for your surgery Susan, I will certainly be thinking of you on the 24th and mentally sending positive vibes for your recovery.

I'll wish you a happy birthday for the 24th Pamela, I hope you have a fantastic day.

Hugs to you both

Karen

Hi Karen

That's smashing news and I am so pleased for you. Things just start to seem more manageable dont they when you have a better idea of what you are dealing with. Im sure we all have a tendency to assume the worst but then we can have a pleasant surprise! :)

I must admit I feel lucky to live in Leeds and so close to such a brilliant Cancer Centre. But I hope you will thoroughly enjoy the peace and beauty of your location and make the most of all the ways that nature, your home and the love of your family will cuddle you - body and soul.

If I dont post again before 24th, thanks  so much for your company and good wishes and hope you have a lovely birthday, Pamela and many happy rerurns to us all !
 

xxxxxxxxxxxxxxxx

Hi there

Hope you are OK

Had my surgery as planned last Thursday ( Happy Birthday Meli) and came home on Tuesday. Breathless and weak but much better than I thought

The nodule was cancerous so I am very glad I didn't wait and  went for the surgery. As you said, its not a walk in the park but it is doable and the care is amazing.

Whats the news with you Karen? How are you getting on?

All the best

Mushti / Susan

x