A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Think I've been naive

Postby LindaH » Thu Apr 11, 2013 8:57 pm

I went to see my consultant today and I feel I've been a little too naive about my particular kind of cancer....Squamous Cell Carcinoma.

I'm going through Chemo at the minute and I thought Radio would follow, but my consultant doesn't think it will benefit me because the cancer has spread into the liver and whilst Radio would kill the Pancreatic cancer, it wouldn't kill the cancer in my liver.

I naively thought the Chemo would slow down the growth, possibly shrink the cancer then I could have Radio to kill it, maybe even an op to remove it and all would be well, but it's not like that at all. He said 'if' the Chemo works I would be what he called in remission and they would monitor me on a regular basis, but he couldn't tell me how long the remission would be, so basically I'm being kept alive until nothing else can be done for me.

He said that even if in remission the cancer could start again at anytime, so then it would be more Chemo....to be honest, I don't know if I could do it. He said an op just isn't possible, but I'm sure the diseased part of the liver could be cut away and the pancreas taken away, because I've read it can be done, but not many surgeons in the UK are willing to take it on.

I cannot tell you how much I want to live, I really do, but would it be like a death sentence just hanging over me? Could I live like that....

It's come as a shock to me, it's come as a shock to us as a family. I know I should treasure every living minute, but at the moment the future feels bleak.

My consultant has referred me to Christies and he is quite eager for me to get there asap, so I'm pinning my hopes on something new coming from them.

I'm really in the lap of the Gods at the minute and I've never prayed so hard in all my life. It's so unfair, it really is.

Sorry, just feeling a bit low, but I'll keep fighting, I'll keep strong.

Thanks
Linda x

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Think I've been naive

Postby J_T » Thu Apr 11, 2013 10:15 pm

Dear Linda this really is a horrible disease and I'm so very sorry you are having to deal with it and all the emotions that go with it.

My husband starts chemotherapy next week and we have been told that it won't cure his cancer it will just put it in remission but for now at least this seems like good news to us having originally been given a 2/3 month prognosis. Every day together and as a family is very precious as I'm sure it is to you.

For my part, I am not thinking any farther ahead than each day and this helps me through although I realise that its much, much harder for the person with the illness.

I hope you find the strength to keep on with your treatment with the support of your family and continue to enjoy good times together for a long time to come.

Very best wishes
JT (Julia) xxx

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Think I've been naive

Postby KATB » Fri Apr 12, 2013 9:14 am

Oh Linda, I didn't want to read and not post. I'm so sorry you are going through all of this, what an awful disease it is.

I wonder why the oncologist is referring you to Christie - did he say? Maybe they have other options for you?

I feel so inadequate in terms of giving advice and as a carer rather than a patient I can only echo what JT says above.

Just know that we are all here for you, to listen when you need someone to talk to.

Thinking of you, much love
Kate x

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Think I've been naive

Postby LindaH » Fri Apr 12, 2013 2:04 pm

Thank you kate and Julia for your lovely words.

Kate, I was the one who got in touch with Christies and thankfully my consultant is eager for me to go. It's not that I don't feel my consultant isn't doing the best for me, I know full well he is, but this is a rare cancer so everything is very much 'up in the air' as to what will happen with treatment, so my consultant and I are both eager to see if Christies will be able to shed anymore light on the cancer and who knows....a miracle treatment maybe waiting for me in the Christies top drawer....

Thanks again ladies, so much appreciated your good wishes.

Linda xx

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Think I've been naive

Postby KATB » Fri Apr 12, 2013 3:14 pm

Oh yes, I remember you saying you'd contacted Christies. I do hope they have something else to offer - you probably couldn't go anywhere better so here's hoping.

Do keep in touch and remember we are always here to listen - I'm always popping on to see who is posting.

Kate
x

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Think I've been naive

Postby Slewis7313 » Sat Apr 13, 2013 9:33 am

My dearest Linda, firstly apologies for not posting earlier but I have been travelling and needed to take some time to fully understand what you were saying. It must be really difficult to take one kick after another as you move forward with this awful thing. Christies does sound really Interesting and hopefully will look at treating the two areas independently.

Whilst not the same, I have a close relative who had colon cancer and went through surgery to remove part of the colon and was clear. They then discovered secondary cancer in both lungs, one of which has been cleared with surgery and the second due to be operated on shortly..... It looks as though she will beat it......... It can be done!

Good to hear that you are going to keep up the fight (i would not expect anything less as your comments about not giving into it certainly helped me earlier in the year). There surely just be something positive coming your way soon regarding this thing...... When do you expect to go to Christies?

You are very much on my thoughts and I hope Christies give you something tangible for you to grab hold of and focus your fight on. Please keep us all informed as we are willing you to find a breakthrough after an obviously difficult couple of months.


Take care of yourself


Steve

Catherine
Posts: 88
Joined: Sat Nov 24, 2012 11:31 pm

Re: Think I've been naive

Postby Catherine » Sun Apr 14, 2013 11:45 am

Linda bless you, you haven't been naive you've stayed very positive and I'm sure that's helped you. Don't give up hope wait and see what Christies say. Besides going into remission is positive for this horrid disease. Sending you a big hug and you're in my thoughts. Lots of love Catherine xx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Think I've been naive

Postby Slewis7313 » Sat Apr 20, 2013 6:51 am

How's the chemo going Linda?


Steve

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Think I've been naive

Postby LindaH » Sat Apr 20, 2013 2:30 pm

Slewis7313 wrote :
> How's the chemo going Linda?
>
>
> Steve


Hi Steve,

Well last week when I had chemo, I felt great, no problems on the day or the day after, but I had a session yesterday and today - Saturday 20th....yuck...gorgeous sunshine out there and I'm here feeling sick :| It can only get better...she said with her head yet again in the bucket...

Linda

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Think I've been naive

Postby Sueba » Sat Apr 20, 2013 5:11 pm

Linda
Hi my husband has had all his treatment at Christies,we weren't originally referred there but asked to be as we knew there were other kinds of chemo on offer that our local hospital didnt offer.
Make sure you have your bloods done there an hour before your oncologist appt,we didnt realise and sat there till our appt time then had to wait an hour for the blood test results!after that you usually get two appts,one for bloods an hour before which you may already have.
We can't fault the care there,the nurses and staff are fantastic!
Good luck
Sue
Xx