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Relatives and friends

Nico1

Telling people

My husband was diagnosed about 2 weeks ago now, we are still in shock but being really positive about it, He has his scans on Monday and we have been told that his scans will be discussed at a meeting on the Friday and then a plan will be put in place, does this take a long time?
We haven't told anyone which is hard but my husband doesn't want people being "funny" with him or me, and I don't want anyone bringing him down, he is really positive just now and want him to stay that way. We are thinking it's best to wait until we know all the details.
Is this the best way to deal with it or should we be telling people now, he/we are hoping it is all over quickly and we won't need to tell anyone, are we being unrealistic?

Chris82

Hi @Nico1 and welcome to our forum, which I hope you find a helpful and supportive place.

It’s a really difficult time when someone has just been diagnosed, and there is no ‘correct’ way to deal with it. You and your husband can choose to share what you feel comfortable with.

Personally we were open and told everyone what was going on fairly soon. We actually told most people through an email and then shared it on Facebook a week or so later.

The middle ground is to think about a limited ‘circle’ of people you want to involve who might provide help and support. That really depends on the treatment plan when you have that information. The other thing to consider is it might start to feel like more effort and stress not to tell people.

Whatever you do, keep us posted and use this forum for support.

Chris

KatieR

Hello @Nico1 The first few weeks are just miserable
It’s such a shock finding out you have the dreaded C word It’s like being hit by a bus ...you have loads of tests that you don’t understand and then an endless wait for the results you really Do Not want to hear
We have all been where you are now and it’s a horrible place to be in But......it gets easier
Once the Specialists have got their heads together and made a plan for you then your life gets So much easier
It sounds crazy but I assure you
We have all posted panic stricken posts in the early days of our diagnosis
As for your family it is a very personal conversation
We introduced the subject exactly as we had experienced it ...
Dad has a sore bum they think it’s a haemorrhoid...
maybe it’s an abscess
Maybe not an abscess having more tests
They have done a biopsy .....let that sink in then ....say
They think it’s a tumour but they have a plan in place and are very confident that they can treat it and hopefully get rid of it
It is kinder that just hitting them with Your Dad has Cancer ....That’s what we thought anyway
You will know when the time is right but there’s no point in telling them till you have got most of the facts
I hope this helps you ..
Cath :x::x:

Catlover

Hi @Nico1 these are wise words from @Chris82 & @KatieR, you will find loads of good advice on here from people who have been through similar experiences. You have both started a difficult journey but it will get easier once you have a treatment plan in place, until then it can seem like an eternity. You stated that you haven’t told anyone “which is hard”, is it you that is finding this hard or both of you? Although it is your hubby that has to go through the treatment I think it is just as hard, in a different way, for the partner, and it can feel very lonely. Also, in my experience, women seem to naturally want to share more readily with their friends whereas men are much more insular. It may seem easier not to tell people at the moment but, as said by Chris, this could become harder as time goes on. Whatever and however you do this, you will find that your new friends on here will support you throughout; don’t feel that any question you may have is too small or insignificant to ask. Good luck with this and keep in touch. Caroline :x::x:

Clancy

Hi@Nico1, you will find the first few weeks very busy and you will be preoccupied with appointments and new terminology so your self preservation may kick in. Look after yourselves first, it is not selfish, you cannot be responsible for other people's reactions/thoughts/feelings/emotions, at this time.
I personally have told only the people that need to know, my choice. My reason? My husband passed away from a different form of cancer two years ago, and people especially neighbours were initially very shocked and rallied round for two weeks, I noticed that they backed off and treated me differently. I can understand this, they simply didn't know what to say or how to be. I didn't take it personally, people are 99% good, I learned from it. When I was diagnosed six weeks after losing my husband I told my children, my besties, my employers, 2 sisters and sister in law. People are none the wiser and it helps me to feel normal and more able to live my life to the fullest every day. I have had to think on my feet a couple of times, especially with the Panitumumab rash Iast winter, I just told my neighbours that I had a reaction to antibiotics for a bad chest or steroids for my chest.
I am a head in the sand type of woman anyway, and don't attach too much attention to cancer. I tend to work by the rule of tipping the positive balance of good health rather than my body being at dis-ease.
The main point is, your husband does not want to share the information, and this is what we have to honour. My husband was the same, and I don't know if it's because I come from a nursing background and confidentiality is drummed into us.

Take things in small steps, give yourselves time to "sleep on it" the decision will come to you. Take care and sending hugs, Ann-Marie.:x::x:

Polly68

Hi @Nico1 and a warm welcome to the forum. This is such a difficult time for you both and a difficult subject to discuss with others. I made the decision not to tell anyone until I knew what I'd got and what the plan was. I felt that when I told family I wanted to have all the facts, I could tell them everything in one go rather than in dribs and drabs , and I could also answer any questions they may have had. Telling my children and parents was the hardest part, my son was doing GCSEs and we were in the lead up to my dads 70th celebrations, so I waited until these had happened before I told them. I also decided to just tell my close family and friends, but made it clear I was happy for them to let other s know what was happening, I did this mainly because at that time I didn't want to keep going over things. I have always been very open about my situation and have not wanted to feel like my cancer is the elephant in the room- if you want to know just ask me attitude- and I've found that once people have asked me , realise I'm ok and still me, they just treat me as they normally would. Having said that, although I'm on my third round of treatment, I look well ( just like I always have!! ) and am still doing most of the things I always have done, which probably helps. Whatever you decide to do is right for you, it's personal. I have never shared anything on social media, but my friend used that platform to keep everyone up to date with her treatment and how she was getting on. Rightly or wrongly that was her way of dealing with things, but not mine. Good luck and remember do what's right for you, not everyone else!! :x::x::x::x::x:

Mrs2017

Hi, my husband is the same, said he does not want sympathy and people feeling sorry for him, all the way he has just tried to live his ‘normal’ life. We have no children together, I have two in their twenties, my daughter who, lives with us was told almost straight away, my mum was also told straight away just because we were due to take her on holiday just the week after his colonoscopy where they found the tumour and advise us not to go anywhere and so we had to cancel the holiday. With regards timings we were told each step should happened within two weeks. He told his mum a few days before he was going in for his op. Then told his brothers after he came out of hospital, everyone was asked not to tell anyone. So 8 months down the line, during treatment and chemo, no one outside immediate family know (my work know but they don’t know him Personally) apart from the one guy he employes. So that’s how he wants it and it’s been hard and we have had to lie to friends about things and make excuses for missing social occasions but this was his way of handling it and it seems to have worked so far. This is just our experience, not for everyone , and not what I would do if it was me , all the best to you and your husband. , Chris :x:

WendySue

Hello @Nico1 I found the question of what to tell people especially difficult. In retrospect I feel I was too quick to share and was not prepared for how other people’s fears around cancer and misconceptions might shape their responses. For example I did share with a neighbour that I had known and trusted for many years. I had taken confidentiality for granted only to find my news was being discussed with other neighbours. I have ended a couple of friendships as a consequence of how they responded to my diagnosis as well as strengthening relationships elsewhere. So my advice would be to take your time and as one friend said to me, you will feel your way through to what feels right.
Best wishes :x::x:

KatieR

Hello again @Nico1 Regarding telling people I don’t think I made it clear that when we told the grown up kids. And family we already knew that he had a bowel tumour and was about to have his Colostomy done We thought it was kinder to let them know bit by bit what was happening so it was not such a shock Our three children are all in their twenties and have lives of their own They all use Facebook a bit but do communicate on messenger so we made a private group message page and when we have news about JOHN I post an update for them all
We had to tell our Biker club mates because JOHN was in hospital when the AGM was on So we had a lot of noisy visitors ....when the bossy sister said JOHN was not allowed ten visitors at a time they went around the ward meeting the nurses and patients Most ordinary people have no idea how friendly Bikers really are
Anyway I’ve gone right away from the subject You do what is right for you Personally I think that Cancer is not a dirty word to be whispered in private The more people talk about it the more people will understand that it is a fact of life You can live very happily with a tumour in your bum and the treatments these days are perfectly doable ....It’s surprising how many people say ‘ I’ve had bowel cancer’ I’ve had a Colostomy for 20 yrs etc etc
There is no shame in having cancer or having a leaky bum Or having a hole in your tummy that farts very loudly at every opportunity
Take one day at a time
Eat Cake and drink gin / wine / etc
Love Cath :x::x:

Dragonfly17

Hi. I too only told a very small circle of close relatives, friends and people I worked with. My husband found this difficult as he's a very open person. We asked people not to tell anyone else but this put some of them in an awkward position at times which I regret. Inevitably the news leaked out to a few which led to me have cross-words with some I had trusted.
I initially told people by text, email, WhatsApp etc and followed up with phonecall if appropriate but this got me over the hurdle of having to say those initial words to them and I then found it a relief to have people to speak to.
I set up WhatsApp groups e.g. Family, Friends etc so I could update everyone with the same message and everyone in the group could see the replies which saved me having to repeat everything to everyone. This was extremely useful once I started treatment and didn't have the energy to reply individually.
As someone said elsewhere on this forum - it's hard enough getting your own head round it without having to comfort those you have just told. Others don't know what to say so either say nothing or come out with clichés which used to really annoy me.

Now my treatment is over I am still happy with the over-all decisions I made about who to tell although it did make life awkward at times. I was also very aware that although I did not want to tell many people, my husband needed to have people he could talk to so we included some of his friends on "the list" too.
People who found out after my treatment had finished have been great and fully understand why I chose not to tell many people. You don't know how you will react and cope until you are in that situation and you have to do what's right for you.
Best wishes. :x:

Elmac

Hi @Nico1 - I am in my 70's so no parents to tell and our two children are in their mid 40's with children of their own and I have a twin sister. Both my kids know when there is something wrong with me, so we told them straight away as I did with my sister. My husband obviously knew right from when they discovered a malignant tumour at the colonoscopy and has been so supportive, coming to all the meetings with me an asking questions I didn't even think about. With our children we left it up to them to tell their offspring the best way they felt they should but all the grandchildren (age 14, 11 and 7) know that GrannyMac had to have an operation to remove something nasty from her tummy. We also told almost straight away a few friends, as we regularly go out to dinner with them, and didn't want awkward questions being asked. But if anybody asks how I am, I tell them straight away. You will soon know who your real friends are, and I haven't lost any of my friends because they now all know that I have had colon cancer, and they have all been very supportive, especially with driving me around for 6 weeks.

I volunteer at a couple of places and had to tell the groups as it meant that I would be missing days etc. What amazed me was when I was asked what symptoms I had had, and I didn't have any, it was picked up by the "poo tests", two of one of the groups said that they didn't do them as they didn't want to know! Hopefully they will now do them. My oncologist said to pass on the word to make people aware that they should do this important screening test, as it might save their lives! He also mentioned that women are much better at doing the 'poo tests" than men!

One of the best pieces of advice I can give you is to record all your meetings and telephone calls with the Macmillan nurses, surgeon, oncologist etc. On my walk today (I had my surgery 7 weeks ago and started chemo last Thursday) I replayed both the consultation with the oncologist and the chemo nurse and there were things that I had forgotten about, or had gone right over and through my head!

I downloaded onto my iPhone and iPad for 99p an App called AudioMemos and it works well - certainly saves having to take lots of notes, and as I just did today, I can go back and hear exactly what was said.

Remember Cancer is just a word to describe a disease, just like MS, Dementia, Measles, Diabetes or any other disease and shouldn't be hidden - the statistics say that 40% of us will have some form of cancer before we die! I think because colon cancer is one of these 'hidden' diseases, the more we talk about it the better - so that others can get tested before it is too late and the cancer has spread to other organs. One thing that has come out of the histology on my tumour is that it might be hereditary so it is essential that our whole family knows so that they can get tested earlier!

I also set up a Family WhatsApp group, and a specific Cancer Friends group, for as @Dragonfly17 says, it it much easier to just send one message to all the members you have in the groups than have to keep typing new messages. I have also kept a dairy since this journey started in February and find it very useful to go back to check on various things, - like what I had eaten, how many times I went to the loo on a specific dy etc etc

Hope you find the above useful. Good luck for the future - you will find this forum very helpful and you should get your husband involved as a patient as well as you as a relative.

Elaine

Dragonfly17

@Elmac - I was amazed too by the amount of people who said they never return their screening kits. Their faces when I said I'd had no symptoms and was only picked up on routine screening! Just hope they now complete their tests. If we don't discuss it, how will others know the importance of screening but it's just not always easy to have those discussions during treatment.

Sasa

Hi @Nico1 ,

We told everyone straight away, but two family members in particular changed their behaviour and were quite annoying. My sister especially is all doom and gloom when she calls which we just don’t have time for. She is a Marie Curie nurse so perhaps it’s her ‘work style’ - not sure but whatever it is it’s really annoying!

Other than that everyone is very supportive and just carry on as usual which is just what we want and need.

As others have already said you need to be true to yourselves. Surround yourselves with positive people and you will pick up on all that positive energy which can only be a good thing....

Sarah :x:

Nico1
Quote from @Dragonfly17:
@Elmac - I was amazed too by the amount of people who said they never return their screening kits. Their faces when I said I'd had no symptoms and was only picked up on routine screening! Just hope they now complete their tests. If we don't discuss it, how will others know the importance of screening but it's just not always easy to have those discussions during treatment.

I have never completed a test but ordered one online and it came so I do it tomorrow,

Gg k

Hi @Nico1 .
I have grown up children and elderly parents none living close by.
Hours after diagnosis I was on the phone telling them all. I was determined to survive and be completely open about everything. I told friends in the next few days and work the next week.
Yes some changed in the way they behaved towards me and not in a good way but I figured at least I know who I could rely on.
Some friends have been shed along the way and my relationships with some family has changed. But at least the people left are real. My husband has always been there for me.
The downside of telling everyone is that sometimes people want to share their negative stories but the upside is the positive ones.
For me it's a small way of spreading a little awareness.
Good luck :x:

Nico1

Thanks everyone for letting me know how you all dealt with this part 💖

Everything is so hard to deal with just now like right now i am waiting while he's getting his scans they wouldnt let me go and I've been sitting for 2 hours so far and keep wanting to talk to someone as I am imagining all sorts of mad things just now - he won't come back/the tumour is huge etc etc all irrational but cant help it.