Relatives and friends

Jenny101

Not handling it very well

My partner was diagnosed with rectal cancer nearly two months ago now. All the preliminary tests have been done - last was a PET scan last Wednesday - so we’re now just waiting for the call to see the consultant.
I’ve tried my very best to keep positive and cheerful in front of my partner but in private it’s a very different story. He’s dealing with this by not discussing it and doesn’t want me discussing it with him either, which I find very hard. He told me he doesn’t want me to go to the meeting with him, and I’ve had to practically beg him to let me come. Still not sure if he’s going to allow it. He said he’d rather go on his own so he can lie about it. It’s doing my head in the thought of him going alone and maybe deciding not to tell anyone.
The stress is really getting to me now and I feel like I’m on the verge of a total meltdown. I can’t talk to him about it because he was very clear with me in the beginning that he could handle it, but he couldn’t cope with anyone else not handling it.
I’ve no idea whether he’ll get the call for the appointment and just not tell me until it’s over. I know this is his decision to make and I’ve no right to insist on being involved, but not knowing is going to just destroy me.
I can’t eat, can’t sleep, and just trying to complete everyday tasks is getting harder and harder.
I don’t know if this is just me being selfish and weak, but I really don’t know which was to turn at the moment.
Has anyone else had experience similar to this? I feel such a failure.

Jenny :x:

eyeofthetiger

Hello @Jenny101 Sorry to hear you are having a tough time getting your partner to accept your support. When I was initially diagnosed I tried to push everyone away, mainly due to fear, shock, not wanting to be a burden and I was also worried about body image and whether my partner would accept that I had a colostomy. Thankfully, once I had processed the diagnosis, I accepted that I did need help and support and we are closer than ever before. Hang on in there lovely lady, give him a bit of space and hopefully he will be ready soon to open up. Maybe request to join the private relative section on this forum as I am sure others have been in similar situations and might be able to offer some advice. :x::x::x:

Mountainmaid

@Jenny101 I really feel for you. My husband was exactly the same. He didn’t want me to go to any of his appointments with him (although I did!!), once he was diagnosed, he didn’t want anyone else to know and even now, 8 months on, he still refuses to talk about anything to do with his cancer. It’s so difficult because I cope with things by talking. Eventually I had to have the conversation that if he wanted me to be strong for him and our daughters, i need to have an outlet for my feelings. I had to make sure I was completely calm and logical as he cannot cope with any emotional outbursts at all!!! He accepted this and we have told family and friends and I rely on friends to offload - bless them! Is there anyone you can talk to? Also, this forum is great as there are so many partners who know what you’re going through.
You’re not being selfish and weak. I really hope that your partner comes round to understanding things a little from your perspective. Once you have a plan in place, the fear is not quite as bad and it is easier to get on with life. I hope things get easier for you and remember, this is a great place to offload :x::x::x:

Jenny101
Quote from @Baxter2:
I’m sorry to read your post @Jenny101

This must be a very difficult challenge for you to say the least! I kind of know that if it were my husband who were in my shoes, he’d most probably be similar to your partner in that he wouldn’t be discussing it! I do think he’d be ok with me accompanying him to appointments but it would not be up for discussion at home. Maybe he just needs a bit of time to process this information himself? Having experienced the loss of his first wife many years ago will have undoubtedly affected him even today. It’s so very difficult for you but you’re doing your best and that’s all you can do and no more. Look after yourself. Perhaps if there’s a Maggies centre or similar near you it may be helpful for you?

Take care and lots of love and best wishes,

K💚💙💜💛❤️

@Baxter2 Thank you. Maybe you’re right and he does just need to get his head round it? I hope so. looked up the Maggies centres but unfortunately there isn’t one near me, but I will investigate to see if there is another similar.
Jenny :x:

Jenny101
Quote from @eyeofthetiger:
Hello @Jenny101 Sorry to hear you are having a tough time getting your partner to accept your support. When I was initially diagnosed I tried to push everyone away, mainly due to fear, shock, not wanting to be a burden and I was also worried about body image and whether my partner would accept that I had a colostomy. Thankfully, once I had processed the diagnosis, I accepted that I did need help and support and we are closer than ever before. Hang on in there lovely lady, give him a bit of space and hopefully he will be ready soon to open up. Maybe request to join the private relative section on this forum as I am sure others have been in similar situations and might be able to offer some advice.

Hi @eyeofthetiger. I’m so glad to hear this brought you and your partner closer together. I think Neil may be going through some of those feelings, as he told me already he was considering breaking up with me because of it (although we’ve lived together for eight years!). I know he’s worried about losing his hair. As for a colostomy, I don’t think it’s even entered his head that might be a possibility, and I’m sure he’ll be shocked to find out.
I will do my best to hang on in there but I fear it’s going to be a rough ride.

Jenny :x:

Jenny101
Quote from @Mountainmaid:
@Jenny101 I really feel for you. My husband was exactly the same. He didn’t want me to go to any of his appointments with him (although I did!!), once he was diagnosed, he didn’t want anyone else to know and even now, 8 months on, he still refuses to talk about anything to do with his cancer. It’s so difficult because I cope with things by talking. Eventually I had to have the conversation that if he wanted me to be strong for him and our daughters, i need to have an outlet for my feelings. I had to make sure I was completely calm and logical as he cannot cope with any emotional outbursts at all!!! He accepted this and we have told family and friends and I rely on friends to offload - bless them! Is there anyone you can talk to? Also, this forum is great as there are so many partners who know what you’re going through.
You’re not being selfish and weak. I really hope that your partner comes round to understanding things a little from your perspective. Once you have a plan in place, the fear is not quite as bad and it is easier to get on with life. I hope things get easier for you and remember, this is a great place to offload

@Mountainmaid
I was going to say it’s nice to know that someone understands, as our partners do seem incredibly alike in this respect, but I know only too well what it’s like not being able to voice your feelings so I know it must have been very hard for you too.
Regarding emotional outbursts, I am often guilty of this because I’ve bottled things up for so long they tend to burst out at the worst moments. I do have very good friends I can talk to, but the one person I really want to tell doesn’t want to listen.
Jenny :x:

Jenny101

An update to the consultant meeting, Neil told me last night “you’re going to hate me”. My heart sank because I thought he’d had the meeting yesterday and I just sat there in shock, so much so that he hugged me and told me not to worry, he hadn’t been cheating on me. Never even entered my head!

He then confessed that he’d had a phone call yesterday morning to say that the meeting was today, but he hadn’t told me because he wanted to go alone. He’d been planning to pretend to go to work as normal so I didn’t suspect! In the end he said he couldn’t lie to me but was hoping it was now too late for me to arrange a day off work! I of course told him it was not too late!

Still not sure whether he’ll allow me to go with him tomorrow as he really doesn’t want me to, but at least I now know where it is and what time, so I’ll go on my own if need be and hope to find him at the hospital and that he might have a change of heart and allow me to be with him.

I tried so hard last night to convince him that we’re in this together but he sees it as being to do only with him. I may just have to accept that he doesn’t want or need my help, and that I’ll have to take a step back and let him do this on his own.

It’s going to kill me!

Jenny :x:

Baxter2

oh @Jenny101, I can see you posted this in the wee small hours and presumably another disturbed night?

This is such a difficult one for you to cope with. I’m guessing you’re already thinking he’s only going to tell you what he wants to as well folllowing this appointment. There’s every chance of course that he won’t take absolutely everything in too. Is there someone else he would take along? You could possibly ask this question?

I wonder if he would feel more reassured reading some of the posts on here to let him know he’s not the only one? Having said that, he may not be over the moon about you posting about this issue. You can always request to join the relative to relative section too if you think it would be helpful?

Sending all my best wishes for today and I really hope he changes his mind.

Lots of love,

K💚💙💜💛❤️

Lizalou

Hi @Jenny101

Lots of sympathy from me too...the partner/carer definitely gets the worse deal!
(I was the patient, but before me, my father was diagnised with bowel cancer)

From a patient's point of view there is a sort of feeling of embarrassment, of not wanting to cause upset, of not wanting to make a big deal of things.

Also, my husband has had entirely different health issues recently and was happy to trust his GP. It was my greater health knowledge (women's magazines, tv health programmes, this forum) which eventually made me insist on going to appointments and asking questions. In the long run, he was very happy to let me do so but it was difficult at first for both of us.

So, I really hope you can get to the appointment together, the sit down over a coffee and gave a long talk. Best wishes to you both. :x::x:

KatieR

Hello @Jenny101 You are definitely in a difficult situation
But you are in a relationship with this man and you have a right to know what is going on
There are a couple of cliches that apply to your man ...In Denial and The Ostrich theory which both cover the attitude of If I dont talk about it then Its not happening.... ? ?
Im a great believer in writing things down / making lists
Instead of getting into a Row
Write him a letter Tell him how you feel ...
Not being allowed to know what is going on with the most important person in your life is not acceptable and rather upsetting
Point out how hurt he would be if you had a problem and kept it secret
Consider the people who love him and how hurt and upset they would be not to be told that their Dad was wanting to keep his diagnosis secret
Would He be upset if one of his girls was keeping her diagnosis a secret from Him. ?
Make sure he knows that Cancer Treatment is totally different than it was 18 years ago
Maybe.....Ask him to think how hurt he would have been if his first wife had cut him out of her diagnosis treatment and care
Could his present attitude be stemming from “ things “ that happened to her.... ? People talk about closure ...my Mum was scarred by memories of her mother screaming in pain during her final hours ...a situation that would not be allowed to happen nowadays
Everyone is different and they deal with things differently....but not allowing you to love and support him is very hard for you to cope with
Please keep lines of communication open With Him and Us
Cath...:x::x:

LynneW

Hi @Jenny101, it is a difficult time, especially when your partner doesn’t want to discuss anything! It appears there are many in the same position. I told my husband that I would be there with him and for him no matter what! This I have done for the last 8 years!

I can understand why your partner feels as he does, he probably has lots of unpleasant memories from his previous experience with cancer. You can assure him that times have changed since then. The treatment of Cancer has improved in almost all areas! I can compare the last 8 years, my husband was first diagnosed in 2010.

Sadly, I can also compare todays methods with the treatment of my mum in 1980’s and my dad in 1999. The changes are almost sci-fi, in their advances. My husband would not be here now if the methods and treatments had not happened. I think many are here because of the better discoveries and treatments!

Hopefully once your partner gets his head around things, his attitude will improve and he will allow you into his thoughts and allow you to be with him for his tests and results and treatment! He eventually may need you help to drive him to appointments, treatments and scans etc, so he will have to keep you informed and include you!

As someone else told you, there is a Relative to Relative private section. This is very important to us relatives. You can say/discuss anything with people who are in the same position and therefore understands all that you are going though!

I wish you and your partner all the best and hope things will settle down once you have some information! :x::x::x:

laylib

@Jenny101 ....I understand exactly how you feel as my husband was diagnosed with rectal cancer in February..our journey has been ongoing since mid November 17..he has finally seen the Consultant 2 weeks ago tomorrow,but I’m finding it hard to keep him positive..last night wasn’t a good night for him and seeing him in so much discomfort and not able to help him just sent me over the edge..both of us were in tears! He has always been quite a private person especially regarding his toilet habits but I think he has accepted that like you said we are in this together..hopefully your partner will come round & start to understand that you need to be involved with this journey for your own piece of mind...Kenny has his pre op assessment next Thursday & his operation is pencilled in for 15th May,luckily they said at MDM that radiotherapy//chemo wasn’t needed..when he has really bad days (toilet about 20 times!) he gets really down & emotional,which isn’t surprising...I’m glad I joined this forum as itt gives an insight of what to expect..I just wish I could encourage him to read some of the positive comments as well but no luck yet but I’ll keep trying! I hope all goes well at the meeeting :x:

Kathy L

@Jenny101. We seem to have the reverse problem it is me who doesn't want to go into the oncology appointments. Paul doesn't mind and leaves it to me.
The reason I don't go is because I know I will cry and blub! Although I know they are used to this happening I don't want to distract from the conversation. I feel that it might affect how the conversation goes. I feel I want to give Paul privacy to ask awkward questions and talk frankly without worrying about me.
I once sat in on an examination and felt that I was intruding and made an excuse to leave.
On the negative side, he often forgets to ask "my questions"
We discuss what is said after and I have no reason to believe he edits what is said. We have had a very close loving relationship for nearly 40 yrs sometimes nothing needs to be said......we just know.
I'm sure once your husband gets his own mind round it he'll be ready to include you. As for other people....took us quite a while before we shared our news and then only on a need to know basis. Took us a while for us to get used to it all without dealing with others.
Love and best wishes. Kathy :x:

Jenny101

@Baxter2 @Lizalou @KatieR @LynneW @laylib @Kathy L Thank you all so much for your kind and helpful comments.

The good news is that Neil decided in the end to let me go with him. Wasn’t sure until the last moment, and I was planning on going there anyway and hoping he’d let me in if I just turned up, but in the end we went together. So glad I went as I’d have hated to think of him dealing with it on his own with no one to talk to. There were a couple of things that I think came as quite a shock to him - knowing he would have a bag (illeostomy) and high risk of nerve damage - both of which he needed to talk about.

Also quite a shock was that, subject to one more test and a double check of the PET scan results, he may be having the operation within two weeks, which he’s not prepared for work wise (he’s a self employed builder). So a lot to get our heads around. There’s still the possibility that he may have to have radiotherapy before the operation. We’re waiting for the radiologist to report back on the lymph nodes, which were “suspicious” but not clearly cancer on the scan. They also found some “activity” in the stomach which could be an ulcer or could be cancer, although the doctor thought this was unlikely. To be 100% sure they want to carry out a gastroscopy prior to the operation just to rule this out. So another test which will be a week today.

I’m hoping and praying that both things will come back OK and he can go straight to the operation, but it’s going to be an anxious wait until they can be confirmed.

@laylib I wish your husband the best of luck for his operation. If all goes well Neil may be having his around the same time.

@Kathy L With regard to sitting in on the appointment, I took a notepad! I was too busy taking notes and trying to keep up with it all to start crying. Neil kept apologising to the doctor when I was asking to double check spelling of names and procedures. The doctor didn’t seem to mind - he asked me if I was a secretary!

You’ve all been so lovely with your comments on here, and as people have pointed out, I do feel better now that there is a plan (although tentative) in place. I know Neil is worried, but although he’s not one to sit and discuss things, I’ve learned that it’s best for me to say nothing and just listen when he decides to talk.

Much love,

Jenny :x::x::x:

Baxter2

Morning @Jenny101

I’m so glad that you went together in the end.....and I bet Neil is too! Sending loads of good wishes and everything tightly crossed for the next few weeks. 🤞🤞

K💚💙💜💛❤️

Jenny101

@ Baxter2 Thank you. I hate the waiting!

Jenny :x:

LynneW

Wishing you all the best for the next lot of procedures and treatments! @Jenny101. We have the first, post hospital admission scan on the 30th. At least we will only have to wait a day for the result this time! A favour, as we are hoping to go to Majorca on the 2nd May!
I am so happy to hear that you went with your husband after all! :x::x::x:

Gg k

Hi @Jenny101
I'm a bowel cancer survivor 3 years on.
I'm not sure this will be helpful but we are all different when it comes to dealing with bowel cancer.
You obviously care very much and being rejected when you want to support must be painful.
I was to some extent similar to your husband - I was and did deal with it. I did talk to my husband but not really to share my fears.
One thing that I didn't like was lots of positive and cheerful stuff especially when waiting for histology , CT and blood results. I wanted our normal life with normal talk. If anyone told me I was brave I got quite annoyed. Warrior / fighting talk / cancer journey made me want to stop talking. Sometimes a hug or holding hands is better than a thousand words
Only the person with cancer goes to bed at night with their thoughts.
Support is very important but only the type that the other wants.
I can see that you care very much and I'm glad you went to the hospital together.
Good luck and best wishes :x:

Bear G

Hi @Jenny101
Sorry for coming late to this discussion.
It sounds like it’s worth trying to have a good chat to see what you both need from each other as he goes through his surgery. It could be he’s trying to protect you (not telling you about the appointment etc) while you are clearly trying to offer him support.
His chemo unit may be able to arrange some counselling for you both if you think that’ll be helpful, it’s s lot to cope with for both of you.
The op being done soon is great news, that’s the start of proper treatment and the start of him getting on the front foot and tackling the cancer.
There is a private group on the forum for relatives to chat, some prefer to talk there than on the open forum, entirely your choice but wanted you to know that it’s there.
If you click on our highlighted names you’ll see our stories. I’m a stage 4 patient just approaching my fifth anniversary despite having a very active disease.
Big hugs
Bear
:x::x:

Jenny101
Quote from @Gg k:
Hi @Jenny101
I'm a bowel cancer survivor 3 years on.
I'm not sure this will be helpful but we are all different when it comes to dealing with bowel cancer.
You obviously care very much and being rejected when you want to support must be painful.
I was to some extent similar to your husband - I was and did deal with it. I did talk to my husband but not really to share my fears.
One thing that I didn't like was lots of positive and cheerful stuff especially when waiting for histology , CT and blood results. I wanted our normal life with normal talk. If anyone told me I was brave I got quite annoyed. Warrior / fighting talk / cancer journey made me want to stop talking. Sometimes a hug or holding hands is better than a thousand words
Only the person with cancer goes to bed at night with their thoughts.
Support is very important but only the type that the other wants.
I can see that you care very much and I'm glad you went to the hospital together.
Good luck and best wishes

Hi Gg k,

Neil’s actually been a lot better talking to me since I went with him to the meeting post MDT and it looks like he’s going to let me come to the stoma nurse clinic with him tomorrow too, so things are feeling much better now that we’re doing these things together. He doesn’t say much about his fears but as you point out I’m sure he has them when he’s alone with his thoughts. I’m being careful to only discuss things when he feels like doing so, and I take your point about the “rallying cancer fight” type comments - something you don’t need to be reminded of! Trying to keep discussing the “normal” things and just getting on with the hospital appointments as they come up.

Best wishes to you too and thanks for your comment,

Jenny
:x:

Jenny101
Quote from @Bear G:
Hi @Jenny101
Sorry for coming late to this discussion.
It sounds like it’s worth trying to have a good chat to see what you both need from each other as he goes through his surgery. It could be he’s trying to protect you (not telling you about the appointment etc) while you are clearly trying to offer him support.
His chemo unit may be able to arrange some counselling for you both if you think that’ll be helpful, it’s s lot to cope with for both of you.
The op being done soon is great news, that’s the start of proper treatment and the start of him getting on the front foot and tackling the cancer.
There is a private group on the forum for relatives to chat, some prefer to talk there than on the open forum, entirely your choice but wanted you to know that it’s there.
If you click on our highlighted names you’ll see our stories. I’m a stage 4 patient just approaching my fifth anniversary despite having a very active disease.
Big hugs
Bear

Hi Bear,

Hopefully we’ve hit a happy medium on the talking about it thing now - I only discuss it with him when he decides he wants to and it seems to be working quite well. Things are feeling a bit more positive now that his op is imminent (a week today) and we’ll deal with any post operative chemo if and when it comes up. At the moment he’s only been told that it may be needed, so I’m trying to take one step and a time and not think too far ahead.

Neil isn’t on the forum as he’s not one to go online to discuss things, but if he ever does decide to do so I will certainly use the relative to relative section for anything that needs to remain private!

Your story is very uplifting - may your anniversary’s keep rolling on! My dad is a 17 year bladder cancer survivor so I know these things very often do have a positive long term outcome.

Hugs back,

Jenny
:x: