Advanced bowel cancer.

Dear Michelli

I am so sorry to hear of your situation. I was only two years older when I was diagnosed but I was very lucky in that it had not spread (something that gives me a great sense of guilt when I read about others that have not been so fortunate). I didn't have FOLFIRI but just had 5-FU for stage 2 rectal cancer. The only bit of advice that I could give would be for your husband to remain as active as possible as this, for me at least, seemed to combat most of the effects of the chemo. Also, having plenty of ketchup on food masks the unpleasant taste that some chemo can give you. I wish I could be of more help but sincerely hope that your husband manages to avoid the side effects - he is young so this will help him.

Best wishes

EdP

Hi Michelli,

I've been on this forum for years now and never post but felt compelled to reply to you because your post struck such a chord with me...

My husband is T4,N2,M1 and has been since June 2008!!!  I won't fib and tell you that its been an easy 8 years because it hasn't but he's still very much here, working full time and living live to the full.  He was just 58 at diagnosis and is now 66.  He's been through numerous surgeries over the years, undergone chemotherapy, suffered with all sorts of complications but his absolute positivity at all times has kept him going - sometimes I've found that harder to deal with than the cancer!

Chemotherapy wasn't nice but it was manageable.  We had the great luxury of undergoing private treatment as we have health care insurance through work.  My husband used to spend half a day in hospital receiving treatment through a line in his chest and then came home with a pump on that gave him more treatment for 48 hours.  We then used to have a district nurse come to the house every week to flush his line out to prevent infection.  He worked pretty much full time (he's office based) throughout his six months chemo other than the times he had to be at the hospital or at home because a nurse was visiting.  Make sure you always tell the consultant and nurses of any side effects as on the whole these can be dealt with - don't suffer with sickness, etc.

If I could give you any advice it would be to just deal with each day as it comes - try not to worry too much about the things you have no control over.  Our local drop-in Macmillan centre has been an absolute godsend for myself and our young daughter (she's only just 20 now and in the midst of a five year university course).  My husband has absolutely no interest in seeking any help, or knowing any more than the bare minimum about his condition and that works for him.  The Macmillan people are first class at helping you find the best ways to cope - they don't have any magic answers but somehow they are good at helping you find some peace to deal with your situation.

Good luck, I will be thinking about you both xx

Hi Suzy

Thank you so much for your response and gòod advice. Im so glad your husband is doing so well. We are taking things a day at a time. We have been in touch with MacMillans and Maggies and will use as much help and support as we can. 

Thanks again

Michelle

Hi Michelle, I don't want to be flip, this is not the space but, snap.  my husband of one year, almost, 49, diagnosed eleven weeks ago.  Multiple metasticies in his liver from bowel cancer.  Given a few short months without treatment and no indication of how long with it.  He has just had the third cycle and we are hoping the scan in 16 days will show some change. 

 He will not discuss it, I however, can think of nothing else. The only advice I can give is go with the flow with him.  I tried to get my husband to open up more and what it boiled down to was....I can put it out of my head and be positive..I need you to too.  Everyone is different and I'm trying to accept that it's his way and I need to bend.   I want to feel angry, but he hadn't symptoms and it was picked up whilst having a ct scan following a persistent cough.  It was affecting our cycling!  Turns out his liver was so swollen it was restricting his breathing.  

You asked for advice and I don't feel I've given it but also strongly feel in this space there is little to be offered.  We are all in our own crises, we can share the experience, and this is a good space for that but emotionally sharing not advising seems, for me, to help.  talk where you can.

As far as the chemo goes, so far so good.   Sore mouth, very, on day five of each cycle, bicarb does wonders.  spots, nasty, all over torso, head, face, arms so we have a running routine of bathe, no soap, dry, soft no perfume towels, then cream three times a day.  I cut up a brushed cotton flannelette sheet and made multiple soft flannels, new one each time.  He swears by them as standard flannels scratched his skin.  We plan outings on good days and only stick to the plan of we can.  That way no disappointment.  We told everyone, for us it was easier.  Some people have stayed away, some have been diamonds.  We have a towel system for guests, family etc, if it's blue it's not for you....I dyed old towels blue, to help cut down on possible cross infection.  Silly I know but it makes me feel useful....something I'm struggling with personally.  Hope I've not repeated orcontradicted others, there seems to be no right or wrong....hugs if you want them, Alison 

Dear Ed

Thank you so much for replying and the advice. I am so glad that your cancer was caught earlier. I will def stock up on Tomato ketchup!

Thanks again

Michelle

Dear Littlewheel,

Don't know if you read my reply to Michelle but we're 8 years on now with my husband's condition (lung and liver metastases for us).  I totally get where you are - I've always wanted to talk about it, and know as much as possible, and my hubby has absolutely no interest in that at all!  Took me quite a long time to get my head around his attitude but we've made it work.  I have this forum that I watch all the time, plus I have my local drop-in Macmillan centre.  I've worked out which friends are willing to listen, and those that are scared about what to say so would rather pretend its not happening.  

This is a wonderful group for tips - I may not have posted over the years but I have definitely listened to advice!  Sometimes the emotional side of stuff is so very hard to cope with and the support here is invaluable.  We've managed to get our daughter through GCSE's and A'Levels throughout our journey - she sat one of her exams knowing at the exact time it was starting her dad was going through a PET scan at the Christie - and she came out with an A*!  

We've taken support wherever we've needed it - we've made sure employers have always known exactly what has been happening, we kept school completely in the loop and now our daughter's university are also in that loop - we've found being open has worked really well for us.  I'm definitely far more open than my husband though - I need to talk about it (it keeps me sane!), he doesn't particularly.  You hit the nail on the head - we're all living through our own crises, we have to do what works for us.

Good luck xx

Hi Ed

Thank you so much for your good advice and support. I am so glad your cancer has been caught sooner. Im still in shock as you can imagine but we are def taking it a day at a time and making use of support services. Going to stock up on tetchup! Loved the quote at the end of your message.

Michelle

Hi there. Thank you so much for replying. You were def not being flip. Its early days for both of us I suppose and it has turned our world upside down etc....I can think of so many cliches...the one I am focusing on is "keep it in the day" and just keep going. I am trying to stay positive. Husband knows it is palliative care he just doesnt want to know stage etc so I can accept that. I have made good use of Maggies Centre which is great. 

All the best and keep in touch.

Michelle x

Hi,

My mum was the same seven years ago and her positive spirit has seen her through many tough spots. She has had liver and lung mets and is living a full and enjoyable life. I learnt to manage my own anxiety to a degree but even all these years later I have to manage my attitude to scans. I found it helpful to mentally think that whilst she was in active treatment we would focus on living but if the doctors said there were no more successful treatment options we would consider that a turning point. 

I wish you all well.

Court

Hi.  I have been reading your posts recently.  My husband was diagnosed with advanced bowel cancer on May 16th this year.  He has T4 N2 M1.  We were told on Thursday that his liver in "non favourable" for an operation.  Yesterday he had his 4th session of chemo - Oxaliplatin (5FU) and Folfox. He has a pump attached for a further 46 hours each time -   chemo every fortnight.  

I am struggling with his positive attitude (although he doesn't know I am). He is determined to keep our life as normal as possible.  For about 5 days after each treatment he is very tired and can't/doesn't want to do anything.  I just wish I could do more to help him.  I don't know what the prognosis is (he doesn't want to ask as he is determined he is going to beat this).  I am in awe of his positivity, but I am scared of what the future holds.  

Reading the posts on here has given me a lot of comfort.

Thank you.