Partner just diagnosed

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Hi all

New to this group, just been reading some of your posts and comments and sorry to all going through this or supporting someone going through it.

My partner of 17 years was diagnosed with a malignant tumour in distal oesophagus at 40cm extending  to GOJ.."scope was able to pass through without resistance" 

"Stomach normal"

"Duodenum normal"

Since then (endoscopy done 5th November) as well as the biopsies taken on the day, he's had blood tests and a CT scan.

We're going tomorrow (Friday 17th) for an appointment with the specialist following the MDT to find out stage/type/treatment options etc.

This has floored us to be honest. Like everyone I suppose you never think it will happen to you/your family(or you hope it won't).

My partner is 50 years old, fit, he doesn't smoke, he rarely drinks alcohol, he isn't overweight and he doesn't suffer chronic acid reflux.  

The nurse said the tumour is only on one side - I also don't know what it means that the scope was able to pass through without resistance - is that good?

I guess I've joined this group for support and somewhere to talk, ask questions, get support and hopefully give others support in return. My partner has a different way of dealing with things than I have, he's imagining the worse so anything less than that is good news 

I can't let my mind go to worse case scenarios and want to be as positive and optimistic as possible.

I want to be able to support him and our just turned 16 year old son (I also have 2 older children whom my partner has been a stepfather to who are also upset but don't live at home anymore and work/have independent lives) - my partner supported me through around 10 years of ill physical health that affected my mental health as well - he was my rock - I've been much better for 4 years now and I'm working again but still get exhausted easily but know I need to step up now and be a rock for him as he was for me.

But I've no idea what to expect. I know everyone's different and that we'll find out more tomorrow, but Macmillan nurses have mentioned the likelihood of 3 months chemo (going once per fortnight) then operating then 3 months more chemo.

So a few questions:

1. How long does a chemo session last?

2. I know people tolerate it differently but could he be very ill for the whole 2 weeks in-between each treatment?  Is he likely to be off work. We're both similar in the respect of wanting to work to keep busy and distracted - if he's too ill, I just hate the thought of leaving him at home whilst I'm in work.

My employers are being very supportive in terms of being ok about me having time off to go with my partner to key appointments but I'm quite new so won't be able to take time off after his chemo appointments (only started on 4th September - ironically the job I had before was 98% work from home and whilst supposedly full-time, often only had enough work for around 13 hours per week despite often asking if there was anything else I could do - I left due to the isolation of working from home and due to not being busy enough - but now it would have been in some ways, the ideal job in terms of being here - not so much in terms of having too much time to worry etc).

3. If you've had the op and your diagnosis was similar to my partner's (albeit I know we don't know stage and grading etc yet) could you give me some idea of how long post-op he might be poorly? - I want to plan, practically and mentally, for managing to keep everything going and ensuring he can see I'm prepared to do all that's necessary in terms of looking after him, doing all what he usually does in terms of driving our son to and from various activities, sort any shopping, cooking etc out and working so he doesn't have to worry about finances.

4. If you're the person who actually has this diagnosis (or similar) rather than a family member, what do you want from your partner (or close family) in terms of support?

Upon leaving the hospital after the endoscopy with the diagnosis on a print out, it was 2 days later my partner told me he hadn't known what malignant meant after getting the diagnosis until realising from the things I had been saying over the past 2 days.  I felt awful, as though I rather than the endoscopy medical staff, who had given him the diagnosis. This has left me not knowing how informative I should be versus how quiet I should be (I'm more inquisitive than he is, research things thoroughly and ask a lot of questions - but the questions I'd naturally ask, might not be questions he wants to hear the answers to).

Basically any advice anyone can give would be appreciated - apologies for the long introductory post!

  • Hi RedAnrea, 

    A sad welcome to the forum.

    I have lower oc at the junction with my stomach. My staging was T3N1M0.

    After reading your post and numerous questions I have a couple of suggestions.

    1. Print your post out and take it with you to your meeting.

    2. Lean on your cancer nurses and those on here for best advice. Keep away from Google!

    3. Click on my profile icon at the top of this reply and read my journal. It may help you but we are all different and my journey is unlikely to be exactly the same.

    There is a lot of fatigue and tiredness associated with the chemo which will affect your ability to work.

    My operation took 9 hours. I was in hospital for nine days and took about 6 weeks post op to recover. By then you will be approaching your last cycles of chemo so back to fatigue and tiredness. The whole journey for me will be around 11 months beginning to end.

    I'm on FLOT chemo and it takes about six hours in hospital to deliver these intravenously through a permanently fitted picc line which you have inserted a couple of days before first treatment.

    I hope this helps you to some degree. Stay positive and take each challenge as it comes, don't try and deal with the whole thing at once.

    Best regards

    Geo.

  • Hi Andrea , yes it is very upsetting when you get the diagnosis.

    I have a tumour that is close to oesophagal junction that started at 5cm. I have had 4 rounds of chemo and have a scan on Monday that will see how effective those 4 rounds of chemo have  been.

    I am also a non smoker don't drink much and a very keen cyclist so reasonably fit. Cancer can hit anyone , children included I guess it's pure bad luck.

    For me the 4 rounds were quite tough with bad headache, pins and needles and bad taste in mouth. First 2 rounds were the worst, spending a lot of time in bed and not eating much hence 2 stone weight loss.

    My wife has been amazing and for us we want to know everything however good/ bad it is. It is scary and worrying at times but if you talk to each other and the fantastic nurses and doctors you will find this horrible journey a bit easier. Everyone is different of course but for me staying positive is the key to getting through it.

    I won't know what is next till after scan but it's probably an op then more chemo.

    Hope that helps and wish you all the best. Keep posting on here as I find it really helps

    Best wishes

    Dean

  • HI my partner 47, has been through it I work full time and have done all the ay through.  My work were and still are helpful letting me out for appointments or go home to check he is ok at lunch time etc or if needed to leave early but not all the time.  The 1st few chemo's  wasn't too bad I think the 3rd he got worse he had lost a lot of weight and cudnt work, hes still not back to work and will be 2 years in Dec from diagnosis.  I think the chemo after surgery was his worst he cudnt go to the toilet etc but your partner could be the complete opposite.

    He was in hospital a few hours for chemo then came home with a bottle on and the nurses came the following day and took it off, Im not sure if this is the same for everyone though.

    Try concentrate on each day as it comes.

    As for information, me fella didnt want to know anything but everyday I was on researching and asking questions I wanted to know as much as possible and then when he did eventually ask things I was able to answer most times.  This worked for us.

    When we go to appointments he always says don't you be saying this and that lol, but i ask what i want as sometimes we need answers and he has no memory at all so if I don't ask we never know.

    I wish you all the best always ask the questions you will need to for your own sanity and to help him Slight smile

  • Hi Dean,

    My partner has been diagnosed with the same as you and he will be starting his chemo on 11th December. I was just wondering if you have had your scan now? And what the next steps are for you? Hoping it was good news for you. 

    thanks

    Danielle

  • Hi, My husband has oesophageal cancer at the junction. He bottles things up and hears the worst when the consultants give him info , not helped by phone consultancies. The anxiety takes over and he sits all day and dwells on worst-case scenarios except when I drag him out for long walks and sitting on the allotment.  He can be distracted with emails from friends and books from Amazon: everyone's different but finding something that engages him might work. I also cope by doing extensive research and preparing questions that I politely insist on asking in consults: go for it, I'd say - if you don't ask, you'll go away and worry. Encourage your partner to prepare questions for phone consults in particular. The one question I find they won't answer is the ;How long have I got?' as they won't commit until it's really end-stage. Hope this helps. We're all in this together.

  • Hi wesurvived

    Yes it is very distressing to get the diagnosis. I was diagnosed June last year with OC at the junction. I have had 4 rounds of FLOT chemo and an op Jan 5th which was very successful. Post op chemo starts March 7th.

    I know it's very hard to take in all the information especially with phone consultations.

    You have to trust them but please ask them about anything you are concerned about. I have had excellent care and support as I enter the next stage. It is a very long and very demanding journey for everyone.

    I find talking about it really helps but it's not for everyone. There are many lovely people on here that can help and of course the Macmillan experts so don't feel you are alone. We are all in this together

    I'm on here quite regularly so if you need to chat please do. Even if your husband doesn't we can all help you

    Best wishes

    Dean 

  • Hi Danielle

    Sorry it's been so long to reply. I had my 4 rounds of FLOT chemo and an op to remove stomach. All the cancer was removed and now awaiting post op chemo which starts March 7th so all going quite well.

    Hope your partner is doing ok let me know how things are going please

    Best wishes

    Dean

  • Hi Dean (Grandad 65) - sorry it's been a while since my initial post.

    Thank you - and everyone else - for responding.

    I had problems with my log-in & then life kind of took over so it took a while to come back on.

    Your experience sounds very similar to what my partner is going through.

    He's also having FLOT chemo (comes home with the last bottle attached for 24 hours with a district nurse removing ,it).

    He hasn't been too bad with the chemo so far (had his 3rd lot on Thursday) - he's felt a bit dizzy and a bit sick at times and been getting pins and needles, but he's up and about.

    He was ill after the first round of chemo and couldn't keep any food or drink down at all. Of course everyone initially thought it was due to the chemo. He was admitted into Christies but no better after strongest anti-sickness or fluids. A test revealed the tumour had grown bigger and barely no gap for food and drink to get past. He then had to wait over the weekend for a feeding tube to be fitted plus he then got a C-Diff infection so that was a tough 2 weeks. 

    Upon discharge he had so many boxes of feeds and equipment and meds we needed a wheelchair to get it all to the car! He was back in less than 2 weeks after when our dogs paw got caught in his feeding tube late on a Friday afternoon and pulled it 30 cms out needing a new one fitted on the Monday.

    Because of the C-Diff and getting used to the feeds, his chemo was postponed twice, but all back on track now.

    Good to hear your op went well and all cancer removed! Fingers crossed Fingers crossedfor you that the last rounds of chemo ensure it stays obliterated!  How long did you wait after your 4th initial chemo to being admitted for the op?

    My partners last chemo is 7th March, he has an appointment at the hospital where he's having surgery (Salford Royal in Salford, Manchester) with the anesthetist on 9th April - we're hoping he'll be admitted between 20th -30th April (our son's GCSE exams start on 10th May so ideally, we want the op over and done with by then so our son isn't worrying too much - whilst knowing the recovery will take some time).

    Good luck with starting chemo again.

  • My partner continued working up until quite recently so that he wasn't letting his mind run away with itself and worse case scenarios - so yes, the more distracted your husband can stay they better!

    My partner couldn't continue eating & drinking normally due to the tumour having grown too big, so now has a feeding tube and is attached to feeds for 15-20 hours per day - the equipment, the nature of his job and his own self consciousness regarding his appearance have meant he's now had to go off sick.

    But our son has his mock exams starting and then his GCSEs so helping him revise is keeping my partner busy.

    At no point have either of us asked how long has he got - I don't know enough about your husband's situation, but I think consultants would only answer that question if they were diagnosing terminal cancer.

    A lady who is a client of mine in my job has sadly been diagnosed with terminal liver cancer - she has opted not to ask how long she has as she doesn't want to know. But for anyone who has been given a terminal diagnosis I think they have the right to ask and know if they want to.

    But if a diagnosis isn't terminal, and treatment is possible (and with positive outcomes) then understandably, it won't be a question that can be answered. Maybe me and my partner are being naive, I mean we know there isn't a 100% success rate, but we're looking at it as he's got as long as I have got/anyone else has got, as he's going to fight and beat this & until we're told otherwise, we don't want to think in any other way.

    Sounds like you're being very supportive to your husband in helping him snap out of it when he's getting anxious etc. without doubt it's a worrying time, but staying positive is essential xx

  • Hi redandrea71

    My husband had his chemo at the Christie Hospital and his surgery at Salford Royal in Dec ‘22 ..Rest assured your partner is in excellent hands ..The care he’ll receive will be second to none .

    Eight weeks after the end of the first four FLOT chemo cycles my husband had his surgery ..He had two thirds of his oesophagus removed and a section of his stomach via two part minimally invasive surgery ..His surgeon was Mrs Farooq who is one of the country’s leading surgical specialists  in this field  My husband has always maintained the chemotherapy was harder for him than the surgery …Yes it’s a long recovery but everyone is different and some recover more quickly than others ..It’s certainly more of a marathon than a sprint .The first twelve months or so have been a bit of a rollercoaster but things do start to settle into a new normal eventually.

    Sending best wishes to you both and wishing   your partner a successful recovery 

    regards J