Cancer Research UK main site

Mum has cancer of the oesophagus

susiebird
Offline

Hi everyone, I'm a newbie here.

About 5 weeks ago my mum found a lump in her neck, just below her right ear. She did the brave thing and went straight to the doctor about it. He told her it didn't seem to be anything to worry about, but asked her to come back 3 weeks later to monitor it. When she went back, he was satisfied that the lump hadn't changed but said protocol dictated he send her for a biopsy/scan. Well, on thursday 2nd Aug she saw a consultant who also thought it was nothing to worry about, but then the bombshell. The biopsy showed abnormal cells. 2 days later she was in hospital for an MRI. Then last friday she went in for a general anaesthetic so they could take further biopsies from her gullet and tonsils. Whilst at the day surgery, the doctors told her they had decided to remove both her tonsils and the lump. After several worrying hours of waiting, my brother rang to inform me that after all they'd said, they ended up just doing the biopsies as originally planned. Nobody has told us why. She was kept in until today as she has been on warfarin for a heart condition and they wanted to keep any eye out for any excessive bleeding. She was sent home today and just told to keep her fluids up, again with no further details. However, the discharge papers tell us she has squamous cell carcinoma and a metastasised tumour. She is terrified as we all are. She has a further CT scan arranged for Tues then a consultation with the surgeons on thursday. I can't believe they have kept her in the dark and not told her what they are dealing with.

I have tried not to look into oesophageal cancer too deeply because I'm scared enough already but have read that secondary tumours are rarely curable. I know there are a lot of supportive people out there, and I really need that right now. What makes it harder is that my parents and brother live approx 30 miles away so it's not like I can just pop in every day after work to be there with them. I'm trying to stay positive in front of mum but at home I just crumple. I keep saying we need to stay strong and support each other and wait to know what we're dealing with but it's so hard.

  • Offline in reply to davek

    Well, it's been a chaotic 3 months since my last post.  Dad was admitted to the psychiatric unit on 7th May and remains there today.  He is finding it almost impossible to consider a return to 'normal' life.  I've been living with my mum since May 1st, and have become her carer.  She started palliative chemo about 6 weeks ago and unfortunately had a bad reaction to the drugs this time.  She spent 3 weeks in hospital with chronic diarrhoea before they got things under control.  It has been agreed between mum and her medical team to discontinue her treatment as it didn't bring any quality of life. 

    So now it's just a matter of nature taking it's course.  Mum can barely eat or drink anything these days. Our biggest concern apart from her declining health is the fact that dad may well still be in the unit when mums time to leave us comes around.  I have no idea how he'll cope if that happens.

    And in the meantime I'm in the process of divorcing my husband (amicably thankfully) and can't see a day when I can move out of this house and start a new life with my new partner.  All I can see at the moment is a future as a carer, first for my mum then for my dad. 

  • Offline in reply to susiebird

    Hi

    Have just caught up with your thread and  wish I could give you a hug.  I have slightly different circumstances (terminally ill husband at home with myMum currently in 24hr care home mainly due to mental illness preventing her from looking after herself).  I am sure life for you is a constant struggle as to where your resources  to cope come from and trying to have time for  yourself in a new relationship (wish you happiness for the future) too.  You are showing what a wonderfully caring daughter you are and have put your own life on hold to look after your Mum as she takes her cancer journey.  Hope you have support with your Mum's palliative care team (my hubby's 'gang' have been worth their weight in gold though as yet not required too often and he is still managing check ups at the hospital).  Sadly from your Dad's point of view his mental illness (depression) is sometimes more difficult to understand/treat.  My Mum has been bi polar for nearly 60yrs though diagnosis took a long time and she had her fair share of hospital stays (some for her own safety and ours). I do hope that the unit where your Dad is being looked after can help him through this spell of illness (I used to feel a terrible guilt that I could not do more for my Mum but by talking with her doctors came to realise nothing I said/did could/would change her thoughts until she came out of the 'mental blur').  No one can really say how your Dad will cope in the future but he is being cared for which gives you valuable time to be with and help your Mum and I have no doubt that when his mind clears he will be sad and angry that he could not be there for you all (my Mum's way of dealing with my  husband's situation is just to repeatedly tell me it should be her) though I expect that's hard to comprehend just now.

    Take care of yourself and please post when you need to - I find just writing things down can clear the head - and hope  you get the support  you need during this most difficult of times.  Jules54

  • Offline in reply to susiebird

    Hello Susie,

    Sorry to hear about what you and your family are still having to go through.  Lost my Dad to Oesophageal Cancer a little over 2 years ago now.  All I can suggest to you just now is to concentrate the energy you have (and I imagine you are mentally and physically exhausted just now) on your Mum and let the Mental Health Professsionals take care of your Dad - if he is not able to be home before your Mums passing, then this is something that can be dealt with later, it is not something that any of the three of you have much control over at the moment.  I did not have to deal with anything like what you are having to go through at the time when Dad became more ill, but I found that concentrating on my Dad and taking things day by day and not thinking further ahead, well its how I coped (easier said than done I know).  I have been involved in caring for my Grandfather, then my Dad and now my Grandmother - not on my own, my Mother has looked after both her parents at home during their dementia, and Dad had his wife (my stepmother) - its been one illness after another over the course of the last 8 of so years now - (we had no problems before this, I now feel so lucky to have had 30 odd years of 'freedom' before all these things happened) - I have to work, but just about all of my free time is taken up with letting my Mum get a break and helping to look after my Granny - its very tiring, mentally and physically.  (I have just quit my job at an office in fact, as I realise that my best way to help and not be quite so tired all the time is to find something part time or with shift work so I have more free days).  I'm not saying I have any idea of what you are going through, but just wanted to say that for the future, its really important that you do not give up your own life for your parents - (Its a wee bit different for your Mum I know) - in the longer term you need to be good to yourself too as although you will always be there for your family, you also have a right to be happy and have a certain amount of freedom for yourself.  I dont know how you will find this, but I have learned in my 30's (am nearly 39 now), that its really really important to find some kind of balance with this.  Thinking of you at this terrible time, please let us know how you are getting on, Kathryn x

  • Offline in reply to katielouie
    Well, 6 months after her terminal diagnosis mum is still with us. She has lost a lot of weight and cannot walk very far now as she is a lot weaker but she is still in good spirits and trying to enjoy life. Unfortunately dad is still in the psychiatric unit, refusing to deal with things. We're celebrating Xmas with mum this Friday as she feels she won't make it to the actual day. It's going to be a very emotional day. I'm just so thankful to have the tremendous support of my wonderful partner, he gives me such strength.
  • Offline in reply to susiebird

    Good to read your update (my hubby also battling on) and wanted to wish you a lovely early Christmas with your Mum/family - making good memories is emotional but then so is the journey itself.  Sad that your Dad's mental condition remains unstable but he is being looked after and very importantly not a danger to himself during his troubled time.My hubby is being monitored for the depression side of his illness and is on low dosage anti depressents currently but unlike your Mum he cannot bring himself to enjoy the current quality of life he has (this causes me and the family anguish even though we also know he would rather not be like it - its like a dark cloud that will not shift).  Thankfully we have good continuing support from GP, Consultant Palliative Care Team/Community Nurses as and when necessary so have much to be thankful for.

    Take care and  sending hugs  Jules

  • Offline in reply to susiebird

    Hello again Susie,

    Very glad that your Mum is doing well (in the circumstances) and is in good spirits.  Great too that you have a supportive partner - it can make all the difference to how well you feel you are coping.  I think its a great idea to have Christmas early - I hope too that your Mum is able to make it to the real one but at the end of the day Christmas is just a special day with nice food and a pressie or two for family to enjoy, so why wait?  I hope you all have a lovely day.  Sorry to hear that your Dad is still unwell - but at least he has other people looking after him just now so you can enjoy precious time with your Mum.  Kathryn x 

  • Offline in reply to susiebird

    Hi Susie,

     

    Thanks for the update - Christmas is always a bit of a struggle. I hope your Mum gets to have two this year and your Dad gets better soon :-)

    Everyone was convinced 2013 was going to be my last, which made for a rather strained atmosphere - I'm hesitant to make any plans for this one just in case I jinx things!

     

    Thinking of you all

    Dave

    x

  • Offline in reply to georgep

    It's been too long since my last post.  Mum was given a terminal prognosis on 1st May. They only expected her to survive a matter of months.Sadly mum lost her fight with cancer on 10th April 2015. She passed away peacefully at home surrounded by myself, my partner, my brother and her dog. She went into hospital 3 weeks earlier with severe respiratory difficulties and was diagnosed with blood clots in her lungs and a chest infection. She chose to return home and they gave her a matter of days but being the strong woman she was, she kept fighting. 

    Unfortunately my dad couldn't be there at her time of passing as he was in care himself. He's since been diagnosed with vascular dementia and has been in care ever since. 

    It's been a really rough couple of years and we're fast approaching the first anniversary of her death. I intend to spend the day remembering the good times as much as possible although the bad times do have a way of creeping in too. 

    We've yet to scatter her ashes as we wanted to get dad some stability first but I'm thinking we might do it on what would've been her 75th birthday on the 26th of this month. 

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.