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Stage 4 bowel cancer

Elisa76

Holistic centres.. or just a friend?

Hi everyone,
I was talking to my husband today and for the first time I realised how broken he is inside.
Six weeks ago he was told that he has cancer and that it is incurable.
He is 37 years old.
So far he tried his best to stay positive but he doesn’t want to talk about it and I don’t think he is interested in documenting himself in anyway.
I mentioned to him my discovery of this forum but he is not interested.
I understand that what helps me doesn’t necessarly help him , for instance reading about survivor stories online and so on.
Having said so, I am thinking that perhaps talking to other people, maybe young patients -maybe young guys like him- could help him a bit?
Just to open up with somebody in his situation?
And I am just saying maybe.
So.. here the questions:
1- any holistic centre around the Bedfordshire-huntingdonshire -Cambrishire area? I saw the Maggie centres are good... any other similar place?
2- any other way in which he could talk to somebody in person or online?
Any suggestion in regard? Any other wife in the same situation than mine?
Clearly I don’t want to push him so please if you think that it is better if I let him doing what he wants then I would still appreciate your precious opinion.
Many thanks
Elisa

charleyb

Morning @Elisa76 we too are in Beds, my hubby was diagnosed stage 4 last year at 39yrs, have a read of my profile for our journey. My hubby shut down initially, but over the months and as he got into his treatment he opened up more. My husband is not a talker in terms of going over things, he didn`t want and need to know anything about his diagnosis, i do. So we kind of adopted our roles. I did all the research and chatting on here, but occasionally i`d glance over when he thought i was not looking and he had been on this forum, maybe suggest he take a look, but no need to actually post? My husband found it reassuring to use the search option, knowing he was not alone. Can you chat to his team, maybe suggest counselling or ask if there is a local group? Sending you the biggest hug this is all very hard in the early days :x::x::x:

Elisa76

Hi Charley,
Thank you for your message.
I did read your profile: were you private all the way through or did you switch from NHS to private at some point?
It really seems like your husband has been provided with excelent health care and he went through a lot in such a small amount of time.
Did you travel to London for the chemo?
We have young kids too, it is so hard.
The situation also started to have an impact on our kids lives as my husband has a very short temper at the moment (in particular with our boy that is only 5 and as naughty as boys can be at times).
I can see he needs peace and quite and being half term doesn’t help at all.
How is your husbamd with the kids?
x

Quote from @charleyb:
Morning @Elisa76 we too are in Beds, my hubby was diagnosed stage 4 last year at 39yrs, have a read of my profile for our journey. My hubby shut down initially, but over the months and as he got into his treatment he opened up more. My husband is not a talker in terms of going over things, he didn`t want and need to know anything about his diagnosis, i do. So we kind of adopted our roles. I did all the research and chatting on here, but occasionally i`d glance over when he thought i was not looking and he had been on this forum, maybe suggest he take a look, but no need to actually post? My husband found it reassuring to use the search option, knowing he was not alone. Can you chat to his team, maybe suggest counselling or ask if there is a local group? Sending you the biggest hug this is all very hard in the early days

Elisa76

Thanks.
x

Quote from @Bridget55:
Hi @Elisa76 have tagged @HH79 as she lives near Tring and may be able to sign post you to something also, thanks @Hans for your info and suggestions. Happy new year both

Clancy

Hi Elisa76, I am not in your situation so I cannot comprehend how you must be feeling. But I am a patient and I see your husband has started his chemo. I do find that I can be a bit short/aggressive when I have had the steroids, so I tend to like my alone days and never drive, then the steroid crash can make me irritable too. On those days I like peace and quiet. We are all different, it’s just a long shot really.
I found counselling really helped me, it really sorted me out, being able to talk to a complete stranger and not have to guard what I was saying, because I kind of protected my children, even though they are grown and flown.
My eldest son disclosed to me that he toohas had counselling privately, and he feels much better for it. I thought he would be the last person to access the service.
You are doing a grand job, look after yourself too, sending big hugs.:x::x:

Elisa76

Thank you Hans.
So happy your wife is in remission.
x

Quote from @Hans:
@Elisa76 good morning, your message really moved me. I guess he will quite a while to balance back = and you also. Its a huge shock for you both. I don't know any holistic centres nearby to you - but I am sure there are some. Some blokes find forums difficult but - you know - I would ask the cancer nurse if she knows a local group - she may know someone nearby. Feelings are facts really and they may take some time to work through. Its my wife with the cancer and sometimes I have to give her loads of space - she knows I am at work on mondays and tuesdays but in a way - its lonely for me.
Hans

charleyb
Quote from @Elisa76:
Hi Charley,
Thank you for your message.
I did read your profile: were you private all the way through or did you switch from NHS to private at some point?
It really seems like your husband has been provided with excelent health care and he went through a lot in such a small amount of time.
Did you travel to London for the chemo?
We have young kids too, it is so hard.
The situation also started to have an impact on our kids lives as my husband has a very short temper at the moment (in particular with our boy that is only 5 and as naughty as boys can be at times).
I can see he needs peace and quite and being half term doesn’t help at all.
How is your husbamd with the kids?
x

Hey @Elisa76
So initially we were NHS, but diagnosed privately. We were told the NHS did it better, but i beg to differ at our hospital! We went privately to an Onc locally and i disliked her negative, no fight attitude. It was that first appoint that i requested a second opinion, and i chose the marsden. She never sent that referral, but thats a diff story, so we booked it ourselves. The Onc we saw there was amazing, explained everything so well and said Charlie had a good chance. He did say tho that if we wanted chemo locally we would have to keep local Onc, this scared me, but he assured me he was in charge she merely distributed it all. He did offer his surgeons, which we jumped at. So all chemo, bloods and scans were local, surgery in London.
My kids are v young, only 1 and 3 when he was diagnosed so they have no understanding of it, so i can not help with that sorry. My kids think all daddies have scars and chemo, we obviously will explain later but they are far too little now. And i suppose if i am honest its easier to not explain it. I have two boys so i know what you mean about naughty!! lol.
In terms of anger, yes he went through all sorts of emotions, the extreme fatigue was hard as he is a very active person, and i think his anger was mostly at me. He then went through hurt, and sadness, and did a lot of why me. I would say he definitely is a different man now, less chilled, more go get it, and more i don`t care (not in a bad way) just more this is my life and i will go do what i want.
In the early days all you can do is be there, it is such a massive thing to digest, both of you need to be gentle with each other. Counselling would be a good option, so definitely speak to your team, or maybe go to your GP, i do not believe there is a maggies centre near by but i could be wrong. I do know others that have excellent hospices near by, with great services for you and the kids :x::x::x::x:

Elisa76

Hi there,
can I ask the name of the oncologist that you saw at the Royal Marsden please?
I didn’t get the second part: did you end up to have chemo locally meaning with a local oncologist?
I am really interested to know that as we live not far from Bedford and I would like to go for a second opinion at the Marsden but then obviously going to London every chemo wouldn’t be ideal for us.
Therefore I am wandering how you worked out practicality.
Many thanks and sorry to dig but I am still trying to figure out the basics.
:x:

charleyb

Sorry if it was confusing @Elisa76 . The marsden advised to keep our Bedford onc so she could distribute chemo, radio and scans here at home. We have all this in Milton Keynes at a private centre. We chose to use the marsden surgeons, therefore all decisions with his care goes thru their MDT. Our local onc basically does what they say. We only had surgery in London, and obviously follow up appoints.
The onc at the marsden we saw was Dr Chau and the surgeon for bowel is Mr Rasheed. :x::x:

Elisa76

Brilliant thank you.

quote]Quote from @charleyb:
Sorry if it was confusing @Elisa76 . The marsden advised to keep our Bedford onc so she could distribute chemo, radio and scans here at home. We have all this in Milton Keynes at a private centre. We chose to use the marsden surgeons, therefore all decisions with his care goes thru their MDT. Our local onc basically does what they say. We only had surgery in London, and obviously follow up appoints.
The onc at the marsden we saw was Dr Chau and the surgeon for bowel is Mr Rasheed.[/quote]

Elisa76

Thank you.

Quote from @Hans:
@Elisa76 good morning, your message really moved me. I guess he will quite a while to balance back = and you also. Its a huge shock for you both. I don't know any holistic centres nearby to you - but I am sure there are some. Some blokes find forums difficult but - you know - I would ask the cancer nurse if she knows a local group - she may know someone nearby. Feelings are facts really and they may take some time to work through. Its my wife with the cancer and sometimes I have to give her loads of space - she knows I am at work on mondays and tuesdays but in a way - its lonely for me.
Hans
Quote from @Hans:
@Elisa76 good morning, your message really moved me. I guess he will quite a while to balance back = and you also. Its a huge shock for you both. I don't know any holistic centres nearby to you - but I am sure there are some. Some blokes find forums difficult but - you know - I would ask the cancer nurse if she knows a local group - she may know someone nearby. Feelings are facts really and they may take some time to work through. Its my wife with the cancer and sometimes I have to give her loads of space - she knows I am at work on mondays and tuesdays but in a way - its lonely for me.
Hans
Quote from @Bridget55:
Hi @Elisa76 have tagged @HH79 as she lives near Tring and may be able to sign post you to something also, thanks @Hans for your info and suggestions. Happy new year both

HH79

Hi @Elisa76 how are you all doing?
Have you any joy? Sorry delay I’ve not been on forum...feel free to PM me any time...
So I went to couple hospice. One felt ‘death!!!!!!’ and never returned but the Hospice of St Francis Berkhamsted is amazing! So uplifting and we all get support and my children love going to events there. Look them up on Fb : Twitter - See what is local to you and have GP refer. Hopefully something local as I think Bedford quite a drive to it.
Lots love and strength to you all :x::x::x:

KatieR

Hello @Elisa76 This time last year we started our bowel cancer journey ....when the Specialist first uttered the C word
We felt physically shocked and just about everything he said after the C word shot straight over our heads like he was talking a foreign language...
It was like being hit by a bus ...All I could think of was pain misery and death I was going to lose my husband ...but our Specialist Colo-Rectal Nurse went through everything again and some of it sank in
2018 has been different We have learned a lot about Bowels Bowel cancer Colostomies Radiotherapy and Chemotherapy Operations etc etc
But we have also learned that cancer treatment IS doable and that Hospices are Not where people go to die but are jolly happy places where people learn to live with cancer and get lots of help advice and support
My husband has had Counselling Relaxation and Reflexology and he Loves it he comes home really refreshed and energised He loves his counsellor she has helped him cope with the anger misery and depression
This forum has carried us through some dark days and some sad days but we have learned that b/c is not an automatic death sentence And millions of people live happy fulfilling lives with b/c
Some Specialists are brilliant and some like to paint a very bleak picture and then proceed to ‘ cure’ you or at least get you to a point where the cancer is not getting any worse
Some use the phrase Terminal ....remember being alive and healthy still ends up Terminal eventually There are many better words for people who live happily alongside their cancer treatment
Counsellors and antidepressants are our best friends !
Keep in touch
Cath :x::x:

Elisa76

Cath,
Thank you for your amazing words.
Well.. so far we only heard the words
1-incurable,
2-months to live more than years ( the surgeon that couldln’t remove the mass from my husband colon)
3-BRAF mutated so aggressive.

What shall I say? I really hope that in one year time I will be able to look back and think: “ now we are in a better situation”.

I will have to look into hospices/ Maggies centres as I don’t think we have any close by so we ‘ll have to travel
A bit.
My husband is not really interested in all of this.
:(
Thank you for your message

KatieR

Your Husband is probably not interested because he might be terrified to hear bad news Once he gets used to his new adventure he will be fine
I am amazed by the way my John has coped with everything He was such a private person but he has sailed through his operations He bought hilarious underpants to make the girls laugh when he was having his Radiotherapy He has even stopped fainting whenever he has a blood test !
He has been for counselling CBT and reflexology at the hospice ....where before his cancer diagnosis he never spoke to strangers didn’t like new experiences etc etc
Men are peculiar creatures and sometimes need a push in the right direction or a kick up the ....well no perhaps not there 😀
Cath :x::x:

angepange

Hi @Elisa76 . I can’t imagine what you and your husband are going through. I think other relatives on this forum will be able to relate to the apparent shut down from your partner, and think , from what I’ve read here, it’s a normal reaction to a horrific situation. I’m hoping that some of the relatives here, who have been in similar positions will be able to give you advice. There are 3 issues aren’t there really, one, how to get your husband to open up, two how to get you help to cope, three, how you manage this dreadful situation together. I really feel for you both and I’m sending you lots of love. Please stay here, you will get the most invaluable support from others who have been in exact same situation and can advise well.:x::x::x:

Elisa76

@KatieR,
I can see that you are in a good spirit and I think that I will have to head to the gp and our nearest Maggie Centre too.
I am scared to take antidepressant but I don’t think I can cope on my own.
Thank you for your advice.
x

Quote from @KatieR:
Your Husband is probably not interested because he might be terrified to hear bad news Once he gets used to his new adventure he will be fine
I am amazed by the way my John has coped with everything He was such a private person but he has sailed through his operations He bought hilarious underpants to make the girls laugh when he was having his Radiotherapy He has even stopped fainting whenever he has a blood test !
He has been for counselling CBT and reflexology at the hospice ....where before his cancer diagnosis he never spoke to strangers didn’t like new experiences etc etc
Men are peculiar creatures and sometimes need a push in the right direction or a kick up the ....well no perhaps not there 😀
Cath

Elisa76

@angepange
I actually think that my husband has got a good attitude at the moment: he is out with his mates at the moment. He is still well and he is determined to live his life to the full.
Then there is me... constantly reading trials resukts and PubMed articles...cryin or being desperate.
I will finally follow the suggestions received here and head to the gp or to a Maggie Centre.
Thank yiu,
Elisa

Quote from @angepange:
Hi @Elisa76 . I can’t imagine what you and your husband are going through. I think other relatives on this forum will be able to relate to the apparent shut down from your partner, and think , from what I’ve read here, it’s a normal reaction to a horrific situation. I’m hoping that some of the relatives here, who have been in similar positions will be able to give you advice. There are 3 issues aren’t there really, one, how to get your husband to open up, two how to get you help to cope, three, how you manage this dreadful situation together. I really feel for you both and I’m sending you lots of love. Please stay here, you will get the most invaluable support from others who have been in exact same situation and can advise well.

KatieR

Hello @Elisa.......Months ago I asked John if he was worried about all the cancer diagnosis tests scans ops etc
He truly said “ No ....you do ALL the worrying for both of us “
After that I decided to stop worrying ...It does not help it doesn’t cure anything .....It just robs you of sleep
We christened them Worry Worms cos they crawl about in your brain and are very active at night
I did have a few worries but the family on here carried me through the confidence dips
John is a very healthy bloke the only thing that gets him down is being stuck inside ...he is outside right now pimping up his little Smart Car 🚙
The whole family is car mad except me who just sees cars as little tin boxes that get us from A to B
Please do not be concerned about taking antidepressants They are great they take the edge of the worry and help you sleep Excuse me if Ive said this before but ...If you are not depressed about having cancer then you must be very unusual I dont know if there has ever been a survey but I bet most folk on here have been helped with antidepressants....Its the same as taking Paracetamol for pain or insulin for diabetes Its not being weak or feeble its a jolly good idea !
Cath :x::x:

Hans

@Elisa76 @KatieR yes we have a 'worry tree' - we put all our worries into the tree and leave them there! It keeps our worries away. Just lovin the idea. Anti depression meds are no big deal - I had them for a while = but I only ever took a quarter of a tablet - not the whole tablet. That way I never got hooked and easy to get off again. They did help quite a bit.
Hans