Lucy, you poor, poor girl, how my heart aches for you.  I hope that now you have let it all out on here you feel a bit better, and I'm sure that there will be lots of people on here who will be able to advise you on how to cope, not least the nurses (their tel.no. is listed  at bottom of the page, please phone them!) You have been strong but it is very difficult, so please don't ever feel guilty or think you are being selfish. 

God bless,

Hazel xxx

Thank you Hazel, i do feel much better for putting  down and getting it out of my head! 

Xx

Remember, you are never alone, there is always someone on here to offer advice or just listen.  And please do contact the nurses or moderators on here, they have lots of very good leads that may help you.

Hazel xxx

I'm so sorry to read this and I hope that I can offer some comfort. After two years of not acknowledging that I had a problem, my GP eventually took a blood test. After that I was rushed to hospital as an emergency and was immediately diagnosed with stage four bowel cancer a week before my 34th birthday. That was in April 2010 - yes, I am still here almost six years later. They could only offer me palliative chemo but after a few months it had worked so well that they could operate on my liver - not locally as only one surgeon in the country would look at my case, but he got rid of it from my liver against all odds. Sadly the subsequent bowel op was less successful and I am now back in incurable land again. But I am not afraid - one thing I have learned is that if you can get your head round it and be as normal as possible then you can achieve a lot. I find the worst part is worrying about those close to me, who will have to cope with this once I am gone. So I do my best to be as normal as I can for as long as I can because I find that is the only way to live but if I let myself think about it then of course it is scary. I'm all too aware of how hard it must be for you, I have no idea how those closest to me manage to cope. They are much stronger than I am in that respect. I really hope that your husband's treatment helps. All I can say is they cannot give a young patient a prognosis because we are more likely to live for longer. If you can possibly find a way of integrating it into the rest of your life and still do as many normal things as possible then it may help. I am thinking of you both xxx

Hi Moom, 

I am so sorry you are in a similar situation to my husband :( but glad you have defied the odds which gives me a great deal of hope, thank you.

We are both trying very hard to carry on and Live like normal also and for the best part we do, but the moment he has a bad day or more bad news he doesnt have to say anything i see it in his face and it breaks my heart. I know that it makes it harder for him to see me upset and i try my best for him to not to show this in his presence for that very reason. But its just started to overflow, as i dont want to upset him with how i feel and i cant tell anyone else. He like you spends time worrying about me and his family. I want to be strong and positive for him.

I feel so angry that he has been so let down by the medical system in so many ways you couldnt make it up and to here your experience also amplifies this.

We were told that his cancer is rare, as it had spread initially straight from his bowel to lymph nodes, he too is on pallative treatment and despite us specifically asking not to be Given any prognosis detail a nurse in our consulation blurted it out - it was a massive shock despite this he has passed all expectations.

He responded well to first chemo but 6 months on is back on it as dr 's mistakenly thought a tumour on his stoma was over granulation which has now spread across his skin, i cant even imagine how distressing this is for him for reasons i am sure you understand we try not to talk about it too much as thinking/talking about it is very difficult.

May i ask what treatment you had? Xx

Hello, it sounds to me as though you're being amazing. Please don't be hard on yourself, I've no idea how the person closest to me copes at all. He refuses to believe it will get the better of me but so far he's been right.

I'm cross that they tried to give you a prognosis. My medical team said at the beginning that it's impossible to profile younger patients

I had irinotecan, oxaliplatin and fleuerocil together for six months in 2010

In 2011 I had a liver operation, radiotherapy and finally a bowel operation. The latter didn't get it all so now there's a nasty aggressive tumour in my pelvis and some minor ones elsewhere. What treatment have they offered your husband? You can always ask to be referred to a larger or more specialist hospital if you feel as though you're not being given the best treatment. I often find that surgeons will try really hard to justify not operating whilst my oncologist tries really hard to get them to! Having a good oncologist makes all the difference. Can they do anything about the spread across his skin? And is it anywhere else? Xxx

Thank you. I was so angry when the nurse blurted it out especially when we had specifically told them we didnt want to know. 

In June/july 2014 my husband bowel was attached to his bladder and perferated through. They had to operate immediately and removed the tumour and surrounding lymph nodes, he had a second op to remove bladder lining which they advised was clear. They found enlarged para aortic and clavicle lymph nodes all with cancer but no other spread. He had a long recovery and on Christmas eve we were told the cancer had spread to his pelvic region and spots were found in his liver. 

2015 he went on to pallative and had 6cycles of xelox, he responded really well the liver spots were no lingerie visibile on scan and oncologist were shocked the lymphs nodes started to shrink and whe was allowed a break. He started to have a few issues around his stoma which they mistakenly assumed was over granulation but we are now told it is another bowel tumour that has spread through his stoma and now across the skin on his stomach. He is back on the previous course of Xelox and they wont operate at this point. We just have to wait and see.

I have scoured the Internet constantly for options, i found curcumin so we buy large doses of this, i think this helped with the Liver spots. 

This is the 2nd  oncologist we have had the 1st was awful,  apparently a lot of the new drugs have been removed from the funding so swe cant have them.

How are you feeling in yourself? I try to make my husband laugh at least once a day this helps me x 

Our situations are so very similar. Mine too is in an awkward place in my pelvis (too close to my lady bits unfortunately). It also came back in my liver (in 2010 it was full of huge tumours, last year something small returned but chemo got rid of it). Through this forum I've signed up to a CRUK discussion in London about the Cancer Drugs Fund. From what I can tell, younger patients tend to live much longer so these drugs could make a difference to both of us. I feel okay most of the time, I manage to keep going and not think about it too much - to some extent positive thinking can help. Keep smiling when you can. X

Lucy, I am so pleased that you have found MooM to talk things through with.  That's the beauty of this forum, there is always somebody who can relate to what you're going through.  I hope discussing everything has helped both you and MooM, as it always has me.

Love to you both,

Hazel xxx