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spannerkate

Newbie - partner has stage 4 rectal cancer

Hi,
Just before Christmas my partner was diagnosed with rectal cancer which has spread to his liver. He's only 40 and is a pretty fit and healthy vegetarian so it was such a shock. I've been putting off joining the forum because I think I was in too much shock to face up to what is happening.
He's having 3 months of chemo and then they will assess what to do next. I'm just freaking out because there's no way of knowing whether the chemo is working. I wish there was something I could do to help him! Good thing is he is coping well with the chemo, only mild neuropathy for a couple of days after the oxaliplatin, no other side effects yet.
Anyway just wanted to introduce myself and say hi.
Hannah :x:

greyhound gal

Hello @spannerkate. What a shocking time for you and your partner. There are many on here who have lived through similar circumstances and you can always receive advice and support at any time on this forum.
Best wishes, Wendy :x::x:

MrsMoors

Huge hugs to you, avoid Google and statistics as they are always significantly out of date and health matters improves as quick as TECHNOLOGY! keep positive and talk to folk in here plenty stage 4 in here and doing well, my hubby is stage 3 with local spread and had an amazing result with chemo :x::x:

spannerkate

@MrsMoors that's so good to hear! We've just got to hope that the chemo will work for him too. Modern medicine is amazing isn't it!

MrsMoors

Most defo! It sounds like he is doing well with the treatment so far! Have a look at my profile to see our journey my hubby was diagnosed the day after his 41st birthday :( there so young for this! X I'm 32 :x::x:

Gypsy

hugs @spannerkate Hannah. I'm glad that your partner is coping well with the chemo. It is potent stuff and has worked fantastically well for very many so let's hope that he is one of them. Love Gypsyxx

spannerkate
Quote from @MrsMoors:
Most defo! It sounds like he is doing well with the treatment so far! Have a look at my profile to see our journey my hubby was diagnosed the day after his 41st birthday there so young for this! X I'm 32

You're right, it's far too young isn't it. I'm glad to hear his surgery went well. I hope his recovery is going well and fingers crossed the pathology results will be good :x::x:

mem

Another ‘Hi' and welcome from me too @spannerkate,
I'm sorry to read of your husbands recent diagnosis but I'm glad you have found this forum. I was also 40 when I was diagnosed at stage 4 and am now 45 (still class that as early 40's btw 😉)
Wishing hubby all the best with the chemo and here's hoping for some postive results!
Sending love to you both :x::x:

charleyb

Hello from me too, my hubby was diagnosed stage 4 July 2017 at 39 have a read of my profile for our journey. You have come to a lovely supportive forum so please ask away and rant if needed. Big hugs 🤗 and everything crossed for positive response to chemo :x::x:

spannerkate

Thanks everyone! This is such an amazing resource and it's so inspiring reading about everyone's stories.

I keep thinking about how it could have been spotted earlier. He had blood in his stool but our doctor where we used to live said it was just IBS. It's only because we moved house and got a new doctor that it got picked up. I'm sure this must happen to loads of people.

It's nice to feel I'm not alone anyway! :)

GD62

Hello @spannerkate so glad your partner is coping well and sorry it was such a shock especially being vegetarian and healthy living, and it just show this disease does not discriminate, and my explanation is that it's a common cancer now and needs a bigger presence on the health stage, and if it were breast cancer or cervical cancer it's all over the TV and papers. It needs that type of situation, if we were as far ahead as breast cancer, which is splitting hairs over microsecond early detection when we are talking about decades really. Good luck you'll do well on here lolx

bettebette

I agree that that bowel cancer doesn’t have the same profile as breast cancer (cervical cancer screening has only very, very recently begun to be promoted); unfortunately it seems that many people (me included) have not been taken seriously, or colorectal cancer has not been considered because of age or ‘healthy lifestyles’ (my GP said “you had no red flags” 😳) BCUK are trying to raise awareness but GPs seem very slow to take this on board. Perhaps we should all shout a bit louder @GD62
Sorry that you have had to join us @spannerkate I hope that the chemo continues to do a good job for your partner :x::x:

spannerkate

Thanks @GD62 and @bettebette :)
I think after the initial shock, the key is to remain positive and not think too much about what the future might hold. Although he felt bad during and after the infusion yesterday, I have to think that it's a sign the drugs are doing their job.

Hopefully we will eventually get to a stage where bowel cancer has as high a profile as breast cancer, it seems like BCUK is doing a really great job.

It's so inspiring reading everyone's stories on here, I'm so glad I've joined :)

EssexDan

Hi @spannerkate just wanted to say hi and thinking of you both.
I cant offer any guidance im afraid as am a newbie to all this still.
Love to you both.
Dan :x::x:

spannerkate

Thanks @EssexDan
It's nice just to feel like we're all in this together and offering each other support along the way.
I hope the chemo is going okay for you and you're not feeling too rough :x::x:

EssexDan

Had a few ups and downs but all reasonably managble thanks @spannerkate .
We are all here to help where we can. :x:

lofour

I hope you are feeling slightly better after reading all the helpful comments from others. I have been exactly at your place 1 year ago when my husband was diagnosed. His liver mets were so extensive that the dr refused to quote the number of liver mets and used the wording 'inoperable and incurable'. Now that your husband's treatment has started, so not long to wait for a follow up scan to see whether chemo is working. You can still google but use it wisely. I only use it to search specific information (e.g. how to deal with neuropathy post chemo) and have long given up reading statistics. Two sayings I heard in the past were particularly helpful to keep me stay sane. One saying is that statistics is the summary of the population, when it comes to individuals, it is always one way or another. So do not over interpret it. Second, with statistics, you know that there are people who are doing worse than the average and there are people who are doing better than the average. Try to do whatever you can do to help your husband to be the one with better outcome, things such as make sure he is eating well, make notes of any side effects, discuss his treatment plan with the healthcare team, ask relevant questions etc.

Needless to say, please use all the support that you have from friends, families, colleagues, specialist nurse, healthcare team and McMillan Helpline

Wish you all the best! I really hope that new survival statistics are being defined.

spannerkate

Thanks for your lovely message @lofour
Those sayings are really helpful. I've stopped worrying so much about the statistics recently. Anyway, we have no idea about his specific prognosis because he doesn't want to know. He'd rather just get on with the treatment, and I can understand that.

I've rung the Macmillan helpline a couple of times and it's been so great.
I haven't been directly in touch with any of the nurses or the healthcare team but maybe that would be another way I could support him, as he doesn't like to talk about it at all.
It's just a waiting game I guess! :x:

lofour

@spannerkate his specialist nurse has been very helpful. I can ask her any questions and talk about any concerns about his treatment. She also pointed us to the right direction for financial advice and psychological support. After knowing my husband does not talk much, she called once in a while to check whether he is ok. It is much easier that way as I cannot imagine he takes the initiative and calls her. His specialist nurse is exceptionally knowledgable. I would def recommend you to get in touch with your husband’s nurse if you have any questions.

Baxter2

Hi @spannerkate

Sorry I'm a little late but just wanted to add my welcome to you! I can see you've had loads of lovely replies already. Sending you both lots of love and best wishes

Karen💜💚❤️💙💛

spannerkate

Thanks @Baxter2 !
I'm so glad I've found this forum :)