Husband needs help

Hi PaperCrane 

Firstly welcome to the forum .

You are both having a tough time but thankfully we have a community of people who have gone through this and still around to reassure others . I will tag in Kareno62 . She will give you both some useful information.

It must be hard for you to hear him speak like that but something I am sure he will work through with the right support around him . Macmillan offers six free counselling sessions through Bupa for people with cancer . Might be worth seeing if it’s available through our helpline . 0808 808 0000. 

Even when bowel cancer has actually spread it is a bit more fortunate than some other primaries as it still has lots of treatment options . My own mum is 14 1/2 years with spreads to lungs and liver and still here .

So you can give him some assurance that it is a tough bump on the road to hit but we are here to help him over it and back on with his life .

Take care ,

Court 

I'm so sorry you are both going through this. The wait is horrible. When I got diagnosed I was whisked off to make my will  and had talk to family about my wishes.

I had my op and was fortunate no further treatment. What helped me was reading other people's stories and having two friends who went through the same. 

Everyone is different and the NHS will wrap you on cotton woll until they make him better. 

In the meantime,  his mind will be working overtime. My family just listened and tried to keep me busy. When you have a definate plan it will get easier x 

Hi PaperCrane and a warm welcome from me too. Yes it’s a shock however bowel cancer is notoriously slow growing but very treatable. The scans will check to see if there is any spread to other organs or lymph nodes then the MDT (multi-disciplinary team) that consists of specialists in all the fields involved will meet and decide on a treatment plan for him. 

Everything you’ve said so far is completely standard treatment for bowel cancer. They may recommend chemo before surgery but we’ll cross the bridge if and when we get to it. Once the tumour has been removed with a clear surrounding area then the path lab will test it to see if any of the lymph nodes removed show cancerous cells - if so then there may be follow up chemo. 

For now just take things 1 step at a time and wait for the MDT results. We are all at different stages of treatment and recovery on here and happy to help and support you both through this. If you click on my name then you can see my treatment to date and please ask anything you like and we’ll try and help. I’ve attached a link to a booklet that I was given at my first meeting which is really good and also a link to a page about lymph nodes

https://bowelcancerorguk.s3.amazonaws.com/Publications/YourPathway_BowelCancerUK.pdf

https://www.macmillan.org.uk/cancer-information-and-support/bowel-cancer/bowel-cancer-and-the-lymphatic-system

If you give the support desk a ring then they’ll be able to advise you on rights at work (for both of you) The next 12 months will be tough but break it into stages and we’ll support you both through this. I was diagnosed in 2016 at stage 3 and I’m still ‘no evidence of disease’ as are the 2 ladies that I became friends with who were going through the same.

Stay away from google as it can be scary and out of date - ask anything you like on here - there is nothing too daft or embarrassing

Take care

Karen x

Hi Papercrane

yes after having endescopies and colonoscopy followed by scan and to be told you are stage 3 with a growth the size of a tennis ball ( and I never had bleeding) by the surgeon from the multi discipline your mind blanks out and you fear the worst. 
Cutting  a long story short I was initially advised I was stage 3 and while it was originally envisaged I would get 3 months chemo followed by an operation the oncologist subsequently advised the operation would go ahead as in 3 months it might be too late to operate. That was a bit disconcerting as I was advised the growth was in my bowel but was either resting on or in my liver and gall bladder and I might have to have the liver partially removed along with part of the bowel and of course potential gall bladder and nodes. Along with the potential for a  ( temporary) stoma bag. 

I had the operation at the end of May 2023 when the brilliant surgeon took away 2/3 of my bowel and nodes but apart from taking a sliver of the liver ( note the budding poet) for testing to confirm the growth had not spread into the liver and didn’t need a stoma bag. 
Just finished the subsequent 8 sessions of chemo tablets which effectively meant two weeks on and one week off ( when you had blood tests and discussion with the oncologist specialist nurse to check your levels and side effects and to confirm you were ok to get next lot. 
Let’s be honest chemo affects everybody differently but I found the side effects ( variously brain fog, lethargy - dropping off to sleep for short periods if I sat on a comfortable seat/sofa-, changes in skin tenderness or numbness in the finger points, balance problems - not major -, changes in bowel movement - you gotta go more often and quicker but no accidents, and finally pains in your discoloured feet where at various times it felt like someone was pushing pins/nails up in to your heels and rear soles. Of course the chemo destroys your immune system so that you have to watch you keep away from colds and flus etc. Managed to fit in a Covid supplemental and Shingles ( yes I’m an OAP but still trying to work without any success during the chemo sessions). Mind you I now find it easier to walk like a ballet dancer - on your toes- but that’s what’s still lingering about along with numbness in the digits and a bit of brain fog that seems to be diminishing. 
Will stop now but feel free to hit on my nom de plume (Bowel67) -67% of bowel now missing- if you want to see some of my other posts detailing my journey so far. 
I understand that it will 6-8 weeks for my body and immune system to recover after which I will have scan and bloods to see if the chemo has got rid of the microscopic cancer cells. 
I did not Google but stuck to my specialist nurses and the NHS web stuff. Learned from the start that you have to trust your experts in the MDT team and while it isn’t always the easiest thing stay positive and look for the day when your treatment is successful. 
When and where you need support or have doubts ask for it and ask the awkward questions as occasionally hubby’s thoughts may be elsewhere. 
Good news was that after the op I was told I was revised to Stage2. I also got a two pack to replace my one pack belly with the “war wound” from just below ribs to below the belly button. Hopefully the inflated chemo belly ( rounded stomach ) will disappear in time. My chemo was by pills at home and inevitably the chemo level accumulates with each session hence side effects noticeable from just after session 2 but of course everybody is different. Should have dissipated in two months 
Hope this Helps 

Take care x 

Thank you all. He now wants to tell his mother tonight. Does anyone have any advise on how to tell close family members? 

Hello PaperCrane,

Different people - different reactions. I told those close to me only what I knew to date, not what may or may not happen as no-one knew that. Before diagnosis I always thought that cancer meant the end of the road. I now know that it is completely untrue. Many people are scared of using the word "cancer" and they try to dodge it. Speak plainly and make it clear that life will continue as normal whilst the first stage of the treatment path approaches. That path can take different routes but the destination is the same, i.e. the restoration of health. Ask others not to start digging online - that will achieve nothing at all. Trust the experts as they have seen it all before. Look at these pages and always ask questions here because you will get first-hand, truthful answers. Most of us have been where you and your husband are at the moment. Strangely, those close to me seemed to suffer more than I did; I just did as I was told (out of character!!) and it worked.

Dulac

Hi Dulac and PaperCrane,

In much the same way as Dulac I only ever told close relatives what I knew for certain the position was at that particular time i.e.

all the exploratories - anything I could recall as being relevant as to purpose and then results of the endescopies and colonoscopies and scans and blood tests. 

the results - once I was told I had the Big C i told anybody that asked what the likely synopsis was and the immediate treatment that was going to happen. Always spoke clearly that I had cancer but I trusted the professionals given I was stage 3 (later said to be stage 2 after op). Before op and after consultation with the surgeon imparted likely removals but again trusted the surgeon and his plain speaking

post op - again just advised my immediate knowledge as to what was taken out and presented a positive outlook to most people or said things were ok when I felt stressful. Didn't impart post op chemo treatment until I knew exactly what the score and treatment was going to be

As Dulac says told everybody not to Google things but if they felt the need to look at the Macmillan forums where you could find similar experiences and outcomes that others had gone through in the past or the NHS website where a layperson could get some clue as to specific questions or doubts. 

My mother had cancer in her 70's but got 5 years extra and I could recall her operation and 5 years later her hospice treatments following radiotherapy for cancer in the bones - sadly ending in her death after a good number of weeks. My initial reactions when advised that I had cancer were that it was going to be a repeat experience but I have gradually realised that things have improved since the turn of the millenium and trusting the professionals and asking about any questions or doubts is much better than worrying about what might not happen. 

200% with Dulac on this

Hi Paper Crane, welcome and I’m so very sorry you and your husband are facing this. I am in my very early 40s and had a similar diagnosis (well actually mine has spread) in November. What everyone says is correct, try to only google Macmillan or Bowel cancer UK or NHS and do not look at anything old. The Macmillan main number are so incredibly kind and helpful on finances, on counselling and just for a chat. Reach out and call them. Ask anything here. It is really a lot but you will see great kindness on here and at treatment. Once you are on the road of treatment I’ve found that easier than the waiting etc. If it helps I try to just do as the medical staff tell me and I try to write questions down in advance as you can blank in appointments. In terms of telling family it’s incredibly hard. I actually asked my consultant for advice, they said to bring my mum to an appointment and I appreciate that might not be possible but it really helped her- and they explain everything well. If it isn’t possible I find telling people what is happening when, and telling them I’m in good hands and reaching out for support helps them to know I am getting help. 

I really will be thinking of you. Take care of yourself too- and there really is so much they can do  xx