Bugger, DH has cancer

[FiveGoMadInDorset]

looks like DH has bowel cancer with secondaries in the liver, had a biopsy today surgeon told hime that diagnosis was a formality. DC's of 8 and 10, one with ASD, treatment plan being discussed next Thursday.

[Imissmy0ldusername]

Didn't want to read & run. I have a close family member who had the same. Do you have a support network who can help you with practical stuff? Another family member who didn't have many relatives close by spreadsheeted out a timetable of what she needed and when. So when anyone said "if there's anything I can do", she was able to give them a specific task. Please try to take care of yourself - it's hard work being the carer, especially when you have responsibilities of looking after DC as well.

Huge hugs to you

[AmeliaJack]

I can't even imagine.

[TeaBelle]

My best friend's husband has the same. His mum is a senior lawyer within the medical field and her medic friends advised him to ask for a referral to adenbrokes in Cambridge as they are particularly good with this type of cancer. His was stage 4 so very advanced when found but he is a year on from diagnosis and currently cancer free.

[FiveGoMadInDorset]

Thats good news teabelle, the liver cancer was only picked up after a routine MRI following a procedure to put stents in last February, nothing on any previous scans. He hasn't had any symptoms either so I am hoping that they may have caught it early enough, my sister has terminal cancer which is bowel cancer so its all a bit of a shock at the moment.

Not sure how or when to tell children

[resipsa]

Oh hell, that's a shock (understatement). How are you? My DH was diagnosed in 2014 when DD was only 3 so we didn't have the tell-or-not dilemma. You'll be all over the place for a while so go slow. Thinking of you.
PS DH still going strong and have since had another DC (sperm frozen pre-chemo).

[SilverBat]

You posted on my thread about DH.

Do you think you could keep DC from knowing until his treatment starts -and then maybe just keep it simple, and dont link it to what your sister has?

My DC are 19 and 21 and oldest had Aspergers, his reaction was 'it is what it is, and he can't change anything'. When he was younger with fewer coping mechanisms, I know for a fact there would have been repercussions at school. Obviously all ASD children are different though, only you as their parents can guess as to how they might react.

Thank goodness your DH had the unrelated MRI that found it, and like you say, with no symptoms hopefully early enough.

[ElizaDontlittle]

Within the hospital somewhere, there will be a Macmillan information point. They have excellent resources with how and when to tell children. Another resource will be the specialist nurse - they are hugely valuable sources of information and they will support you thru it. Warning shots are always useful - don't falsely reassure now to then have a 'big chat' but I'd probably wait til you know what the plan is to give much information, because uncertainty is hard enough for you and worse for DC, especially with ASD.
Use the words, scary as they are, "cancer" and "chemotherapy", not 'lump' and 'treatment'. Really tough for you and hope next Thursday comes quickly.

[PatSajack]

Eliza, can you explain more about "warning shots"? I'm not in OP's exact situation but I am also in a position of needing to break the news to my children about a beloved relative who is seriously ill, and I have no idea how.

OP, my heart goes out to you. Please take care of yourself as well as your family and accept all the help you are offered. I will keep your DH in my prayers.

[eyestightshut]

Sorry to hear this 5.
It must feel like Thursday is a long way away, but be assured that things will be moving as swiftly as they can. Sounds like your husband's case will be up for Multi-Disciplinary Team meeting on Thursday. This meeting is held by the cancer team and consists of
Histopathologists ( They examine the biopsy to determine the type of cancer that is present),
Radiology ( examine the CT/MRI scans to establish how far it has spread),
Surgeons ( who decide whether it can be treated surgically),
Oncologists ( who, depending onthe type of cancer will administer chemotherapy and or radiotherapy to try and shrink the tumour) ,
Clinical nurse specialists - They be his key worker; they will co-ordinate his care, provide support for you all and signpost to any services you may need, and generally are your first point of contact with any concerns
Dietitian For any nutritional support and advice
There may be other team members as well but these tend to be the main ones at the meeting.
So by Thursday they should have an initial plan of what his treatment will be, pending any additional investigations he may require.
Try to deal with this in bite size chunks, and although it's easier said than done, try not to overwhelm yourself with too much information at this stage. Stick to reputable sites for information, Macmillan have some useful info on breaking the news to children.
macmillan cancer research If you're lucky enough to be near one Maggie's do great work in supporting people affected by cancer and their loved ones.
As a previous poster stated, most Oncology centres will have a Macmillan Information and support centre where you can get lots of information about what is available to you locally.
Try and find out about a carers assessment for you - it will identify what support is available for you to help get you through this as well.
I hope it goes well next week - keep us posted as to how he gets on

[ElizaDontlittle]

Not just oncology units - most teaching hospital/DGHs have one somewhere too.

Warning shot - sorry, maybe that's a bit of jargon creeping in... rather than, the first time you talk about it, delivering loads of information at once, a kind if advance warning which might be days or even just minutes in advance depending on... your children/the news/ the amount of information. Eg. Aunty Mary is in hospital and we think she is quite poorly. Leading on to another chat about how not everyone who is poorly gets better. And that Aunty Mary has X and it's not going to get better. Age dependent clearly - but 'Dad's having a scan' leading straight into 'they've found a cancer' is less shocking when it's 'dad's having a scan because they are worried about the look of the inside of his tummy'. And then talking about 'they were worried about a cancer and they found one'. The first warns that there is more to come. Pm me if I'm not very clear, happy to try and explain better.

[FiveGoMadInDorset]

Oh gosh, thank you for all the information, he has struggled to talk about it but another sister and a friend came over so that broke the ice, he did mention about the specialist nurse who is available for me to talk to as well. I am going to let the children school know and then let them know when I have told the children, one of there classmates lost a father to cancer last year which was awful as well. Will definitely update and be back for advice.

Thank you

[eyestightshut]

Your DH should get an appointment to meet with the team pretty soon after Thursday's MDT. At that appointment they will be able to tell him an exact diagnosis and what the initial treatment plan is,and whether they need to do any additional tests to confirm treatment plan. The appointment is very much about what they need to tell your dh and you. So between now and the appointment, think about the things you want to know. Write them down and bring to the consult as it's difficult to remember what you need in the face of a barrage of info from his medical team. They may not have all the answers there and then but will be able to signpost to those who do. Other things to think about are whether there are any research trials he can enrol on;does he need optimising in advance of treatment(eg treating anaemia,, optimising any other medical conditions he has) .

[FiveGoMadInDorset]

Thank you again, how soon is pretty soon as I am working on Friday but can swap a day which I think will make me feel better just in case. Off to see brother and SIL, she has had breast cancer and her son was the same age as my two when she had it so going to ask how she told him as well.

[triplets]

Hi think we have crossed paths before? Very sorry to hear about your dh, it is a very worrying time for you all. My dh was diagnosed in 2008 with stage 4 bowel cancer which had already spread to his liver. He was told it wasn't curable but is currently in his 6th year of remission after taking part in a trial. I myself have just had a hysterectomy and been diagnosed with stage 1 ovarian cancer, chemo starts in 2 weeks. Stay positive, we were always honest with our three, they were 9 when he was diagnosed and coped very well. Thinking of you. xx

[eyestightshut]

How quickly he gets his appointment will depend on the centre he's being treated at and how they schedule their appointments ( so some centres will have an MDT coordinator who will see the results of a biopsy and CT and book into the next available slot which could be the day after MDT) If your husband has the name of his CNS (Clinical Nurse Specialist) then give her/him a ring and ask what their normal practice is. this gives some idea as to time frames So to put it into context - The day that you DH went to see the GP and was referred for his colonoscopy is Day one, so they have 14 days from that date to get it investigated and 62 from that date to start treatment.
One thing that is important for you and DH to do is to discuss what he wants you to know, and get this recorded in his medical records. It is probably hard for you to hear , but it is his decision what you know about what is going on , and health care professionals are bound by their code of conduct to respect his decision. If you think this is going to be a tricky area for you , it might be worth speaking with the CNS early on to see what they can do to help. ( And I know it's unmumsnetty but bugger it - have a big hug from me,. It's a shitty thing to be going through xx)

[PunkrockerGirl]

Lots of excellent advice here. Sending
My dh went through cancer treatment when the dc were small, it was horrible.
So another one here sending you a huge unmumsnetty hug x

[RaveclawZia13]

My partner was diagnosed with testicular cancer in July. He was given the diagnosis on the Friday and on the Wednesday he was in the oncology hospital undergoing the tests required for him to start the treatment on the Friday. I'm sorry about your news

[Bestthingever]

My heart goes out to you. Dh was diagnosed with bowel cancer three years ago (three years ago yesterday) and dm this year. Neither had secondaries but it was still an awful shock. Thinking of you and wishing you the best

[FiveGoMadInDorset]

Hi triplets, good news about your DH, did you ever get on yr holidays?

Thank you all once again, I have swapped my days just in case, it's only Thursday and Friday I work fixed days but the others are happy to swap with notice so it's a just in case scenario. I went to see SIL and DB last Friday who were great as they have been thought it with small children, my other sister was there (large family and a friend) and after we left they all got down to what they can help out with re children, school runs, B&B breakfast etc, so I am thankful we have back up

[ALemonyPea]

Goodness Five! What a shock for you all. Thinking of you and your family

[triplets]

Hi Five........no we never did, now I will have trouble getting travel insurance too! x

[FiveGoMadInDorset]

Just an update, we are meeting with the oncologist on Monday afternoon where hopefully we will get some more details, they are initially going to do 3 rounds of chemo and then another assessment so no surgery yet.

Thank you again for the information and support

[triplets]

Good luck for Monday, will be thinking of you. I have just had three hospital appointments this week at three different hospitals! Chemo starts on Tues. xx

[eyestightshut]

Glad to hear things are moving quickly x

[FiveGoMadInDorset]

Oh gosh Triplets, is that for you? Good luck