The News That Changed Our World

JeanJean Posts: 5
Just over 4 weeks ago my mum, who I’m not ashamed to say is my best friend & my own rock throughout my life, was diagnosed with cancer. Over these weeks we have discovered she has overian cancer which has spread and without treatment her time with us is limited to estimated 12 months, so when offered an operation to remove as much as possible, including spleen, gallbladder, parts of her bowel, which is estimated to extend her life for another 5 years, my brave 76 year old mum accepted & we are awaiting a operation date. We have been warned how tough recovery will be, the operation will be 10 hours long, she will be fitted with a stoma bag, after 12 days allowed to come home & I will take on the role of a full time carer. Chemo will begin while still recovering from the operation.

Life has been a rollercoaster these past few weeks, I’m keeping strong for both parents on the exterior but at times I’m crumbling inside. Caring for both & taking on the family farm business. I talk with family & friends & I try hard to keep a sense of normality within the home but it would be a lie if I say I’m not terrified. 

I would love love to talk with other carers in a similar position to myself, to share experiences, to help me discover strength when I’m feeling weak. 

I believe the best best way to deal with what life has thrown our way is to take things one day at a time. Any thoughts, advise etc will be gratefully received. Thank you for reading my post. 

Comments

  • Welcome to the forum, @Jean. Your mum sounds like a very brave and strong woman - sending you and your family lots of love. I hope our members can give you some much-needed emotional and practical support during this time from their own experience.

    What I can offer as someone who hasn't been through this is a link to someone we've followed for a while on the LBW Twitter account, who was a carer for her mum who had cancer and wrote a really sensitive and insightful blog about it.  Hopefully there might be some helpful/comforting words in there for you from somebody who was in a similar situation.

    This post might be a good place to start: http://cancercarerchats.blogspot.com/2018/06/what-is-carer.html
    And this post is about when her mum went in for surgery: http://cancercarerchats.blogspot.com/2017/09/chemotherapy-week-11-surgery.html

    Take care, 
    Emily

  • JeanJean Posts: 5
    Thank you for your kind & helpful response @emilyrose .. I will take a look x
  • SunshinedaffSunshinedaff Posts: 860 ✭✭✭✭✭
    Hi @Jean, just wanted to say how my heart goes out to you and your family receiving this devastating news.  Although I don't have experience of being a full-time carer for my family who were given terminal diagnosis', I cared for them when we were together. I do understand what it's like to have life change in a heartbeat from their diagnosis and from my own diagnosis. You are wise to take one day at a time, there are so many thoughts, feelings, information swirling around, you may feel like you don't know what to do first. It's overwhelming. You will need support too as you support your mum and dad, I know you have family and friends, but check out MacMillan Nurses, sometimes having someone who isn't so close to you that you can pour out feelings to helps. And here of course. Sending you love x
  • JeanJean Posts: 5
    Hi @Sunshinedaff

    Thank you for your kind supportive message. Sounds as though you too have been thrown some challenges by life.. I hope you too have had / are having plenty of support yourself. 

    I have been through so many emotions since we received the news, the panic, the tears, the anger and the fears. Family have visited, then left.. never quite staying long enough but I guess they all have their own lives to live. My cousin hugged me goodbye & whispered in my ear to look after my mum, then said something that made me instantly angry inside, she said I will miss her. I’m sorry but is this really appropriate  to say when we just received the news and trying to keep positive? That comment was beat when a family friend said she wants to be there when mum passes! I was so hurt by those words and I could no longer hold back the tears, I immediately left. 

    Another thing I’ve found challenging is people complaining that I’m not keeping them updated. I myself am run off my feet, making sure mum is comfortable, medications on time, appointments attended, meals cooked for both parents, keeping the house in order, paying bills, learning the farm business, keeping family and close friends updated etc etc but there will always be someone who feels you’re doing something wrong, someone who’s not spoken to mum for years will complain that I didn’t let them know. It’s certainly been an eye opening experience. 

    There is quite a family history of cancer, both my mum & dad have lost siblings over the years from varying cancers, I myself lost my sister when I was 10 & she was 16 years old from lung cancer, so this is not new to our family. Loosing my sister left me quite psychologically scarred, it was a long 2 years that she was unwell then living with my parents bereavement years after. The experience left me with a fear of loosing my parents, I would find myself listening at their bedroom doors at night to make sure I could still hear them breathing! So I guess I am now facing my biggest fear. Something we all have to face sooner or later. Knowing this makes it no less painful. 

    My partner lives in italy, quite an unconventional relationship, seemed a great idea at the time but now when I need the support it seems not one of my best ideas but he gets here when he can, infact will arrive this week for 6 days then returns to work before coming back for another 6 days a week later. Thankfully he does not work from mid December until end of July so he will be with me for that time. He makes me somehow stronger than when I’m alone.

    My mum is a fighter, strong and independent woman for 76, her fear shows in her eyes which breaks my heart & what’s more difficult is her pain is presently ok, it’s as though nothing is wrong, yet we know what’s happening beneath the surface & she will have to walk into this huge operation & give all she has to face the recovery & chemo soon after, all with the uncertainties of what will happen next. Life has no certainties, and as we have both said, best thing to do is to take a day at a time. I’ve seeked support from a local charity / holistic support facility which I think will be beneficial to our whole family:

     http://www.starthrowers.org.uk/

    I think this this forum will be of great value too. Thank you again for your kind words and offers of support, please feel free to come & chat anytime. 

    Sending love & light xx


  • hessomhessom Posts: 113 Community Admin
    edited November 2018
    Hi @Jean I'm really sorry to hear that you and your family are going through such a difficult time, and it sounds like those around you maybe just don't know how to (re)act?

    When my grandfather went through cancer, a lot of my family didn't know how to react. My fathers side of the family is very conservative and weren't very forthcoming. It took a lot for them to chip in and help, but the impact on my grandfathers health was noticeable once they did (and my father found it much easier too!).

    One of the things that we know helps is being able to call on friends and family to help in difficult times or when we're stressed. We often find that people don't know how to offer help in an easy way, and instead tend to offer help in a generic way, even though they really do want to help! We recently talked about a similar situation and how offering specific help (like offering to cook dinner, picking up the kids from school or running an errand) is more likely to be accepted, Maybe in your situation it might help to have a list of things that your friends and family can help with, so the next time they offer help you can jump on it?

    It's great that your partner will be with you soon, and from December for a good stretch of time and I'm sure he'll be able to help too!

    It's interesting to read you describe your mother as strong, because that's the impression I get of you :)

    This community is definitely a place where we want our members to share and talk about both the hard parts and the lovely parts of being there for the ones we love and hopefully the amazing folk here can help make things just a little bit easier. I wish your mother all the best on her journey and would like to say thank you for joining the Community and welcome!
  •  I’ve seeked support from a local charity / holistic support facility which I think will be beneficial to our whole family:
    Hi @Jean, just wanted to say thanks for making us aware of this lovely charity - I've followed them on our twitter so we can keep up to date with what they're doing and support where we can 💖 Hope today is a peaceful one for you and family x
  • SunshinedaffSunshinedaff Posts: 860 ✭✭✭✭✭
    Hi @Jean
    I am so glad your partner is returning soon, I am sure you will find strength together in the coming days. I am so sorry that some people have been so insensitive towards you and your mum. It is appalling how people engage their mouths before brains sometimes. I hope that you will know the friends and family that you can keep close to you who will be a support to you all. If they offer food or housework or shopping, take it, it will help ease the burden. To be honest I had to make hard decision about who to be around. Because of my family history and close friends who had died, I knew that some people would have me six foot under before giving me a chance! This is because their experience of cancer had always been bad. For a long time there were only a handful of people who knew about me. Both you and your mum seem very strong and positive, that's brilliant. I know the dr's have given a diagnosis and prognosis, but it isn't set in stone. Dr's get surprised all the time when someone beats the odds. I read this morning on the live better with cancer fb page of a lovely lady who was given a terminal prognosis, years later still here! What also surprised me she said she was 80, I couldn't believe it, doesn't look over 60! Be encouraged today, in the midst of the pouring rain (where I am), the sun is coming through, the colours are awesome, and the sun surprisingly warm. Thinking of you, xx
  • JeanJean Posts: 5
    Thank you @Sunshinedaff for such a beautiful & inspiring message. Both yourself & @hessom have really helped lift me & remind me that I am perhaps stronger than I had imagined. Perhaps it’s the survival & nurturing instinct within us all. 

    Im sorry to only just get back to you, time has become more valuable and rare than I could have ever imagined. I find myself constantly researching, taking mum to appointments, making sure she is comfortable, keeping everyone updated etc .. hardly a moment to breathe. Thankfully my partner has arrived which is such a help. 

    We have been given a date for the operation, either the 19th or 20th. We will see consultant on 14th for any last questions. The news has brought us firmly back into reality, mum is rather tearful, my dad who is a typical old skool Norfolk farmer has thrown himself into his work. My dad and I have always had somewhat of a challenging relationship, today I found myself in an argument with him regarding his lack of cleanliness when he returns into the house from the farm. After chemo I understand immunity will be low so I just want my dad to use this time leading up to the op etc to perhaps adapt a more clean lifestyle. It’s a bit of an old dog, new tricks situation though. Mum was upset by an argument but I explained we are all human and there will be days that even with are full intentions of surrounding her with positivity and happiness, we too will fall and arguments will be a way to vent fear, anger, frustration & worry. I hope she understands as the last thing I would ever want is to cause her more upset. 

    I can not thank those on this community enough for time given to reply.. I may not be able to respond as quick as hoped but all of your words have helped build me into someone who will find the strength to face all that lies ahead. 

    The sun is shining today, the autumnal colors in the sunshine are breathtaking.  Today we are together, and this is all we need to focus on in this moment.

    love & light to you all xxx
  • hessomhessom Posts: 113 Community Admin
    edited November 2018
    Jean said:
    Thank you @Sunshinedaff for such a beautiful & inspiring message. Both yourself & @hessom have really helped lift me & remind me that I am perhaps stronger than I had imagined. Perhaps it’s the survival & nurturing instinct within us all. 

    Im sorry to only just get back to you, time has become more valuable and rare than I could have ever imagined. I find myself constantly researching, taking mum to appointments, making sure she is comfortable, keeping everyone updated etc .. hardly a moment to breathe. Thankfully my partner has arrived which is such a help. 

    We have been given a date for the operation, either the 19th or 20th. We will see consultant on 14th for any last questions. The news has brought us firmly back into reality, mum is rather tearful, my dad who is a typical old skool Norfolk farmer has thrown himself into his work. My dad and I have always had somewhat of a challenging relationship, today I found myself in an argument with him regarding his lack of cleanliness when he returns into the house from the farm. After chemo I understand immunity will be low so I just want my dad to use this time leading up to the op etc to perhaps adapt a more clean lifestyle. It’s a bit of an old dog, new tricks situation though. Mum was upset by an argument but I explained we are all human and there will be days that even with are full intentions of surrounding her with positivity and happiness, we too will fall and arguments will be a way to vent fear, anger, frustration & worry. I hope she understands as the last thing I would ever want is to cause her more upset. 

    I can not thank those on this community enough for time given to reply.. I may not be able to respond as quick as hoped but all of your words have helped build me into someone who will find the strength to face all that lies ahead. 

    The sun is shining today, the autumnal colors in the sunshine are breathtaking.  Today we are together, and this is all we need to focus on in this moment.

    love & light to you all xxx

    The Community is here to provide support in exactly these moments @Jean and there is no need to feel rushed to reply.

    I can imagine this being a difficult conversation with your father, but I'm sure he means well. It is always hard to change old habits!

    How are you and your loved ones feeling about the operation being soon?

    And indeed, Autumn is my favourite time of year! Happy to hear that you and your family enjoyed the weekend :)
  • SunshinedaffSunshinedaff Posts: 860 ✭✭✭✭✭
    Jean said:
    Thank you @Sunshinedaff for such a beautiful & inspiring message. Both yourself & @hessom have really helped lift me & remind me that I am perhaps stronger than I had imagined. Perhaps it’s the survival & nurturing instinct within us all. 

    Im sorry to only just get back to you, time has become more valuable and rare than I could have ever imagined. I find myself constantly researching, taking mum to appointments, making sure she is comfortable, keeping everyone updated etc .. hardly a moment to breathe. Thankfully my partner has arrived which is such a help. 

    We have been given a date for the operation, either the 19th or 20th. We will see consultant on 14th for any last questions. The news has brought us firmly back into reality, mum is rather tearful, my dad who is a typical old skool Norfolk farmer has thrown himself into his work. My dad and I have always had somewhat of a challenging relationship, today I found myself in an argument with him regarding his lack of cleanliness when he returns into the house from the farm. After chemo I understand immunity will be low so I just want my dad to use this time leading up to the op etc to perhaps adapt a more clean lifestyle. It’s a bit of an old dog, new tricks situation though. Mum was upset by an argument but I explained we are all human and there will be days that even with are full intentions of surrounding her with positivity and happiness, we too will fall and arguments will be a way to vent fear, anger, frustration & worry. I hope she understands as the last thing I would ever want is to cause her more upset. 

    I can not thank those on this community enough for time given to reply.. I may not be able to respond as quick as hoped but all of your words have helped build me into someone who will find the strength to face all that lies ahead. 

    The sun is shining today, the autumnal colors in the sunshine are breathtaking.  Today we are together, and this is all we need to focus on in this moment.

    love & light to you all xxx
    Good morning @Jean, I will be thinking of you all today as you see your mum's consultant in preparation for next week. Please do not aplogise for not replying sooner. There is absolutely no obligation to reply at all! No sorry's required! This is a place where you can find support, friendship, whenever you want and are able. It is not unusual for mum to be tearful, I understand it is like living within a whirlwind, everything just seems to move so quickly, processing it all, having the time to reflect on it all is almost impossible. It may feel like you are just 'living it' and not processing anything. 
    Your dad will be in shock as you all are. These are very early days and there is so much to comprehend and take in. 
    I am sure he will be listening to you even if it doesn't seem like it, and he like you will want to do all he can to help your mum. A clean environment is important when living with a compromised immunity, and your mum's immune system may be used to living with 'farm germs', for want of a better phrase. It will be very important to ensure contact with others who are carrying cold or flu germs are kept away. We always talk about 'family germs', if my children had a cold I wouldn't get it, but if I came into contact with 'outside germs' that was different. When I used to work in school, each September those of us who worked with the Reception children would get every cold going, they brought in new germs. I don't have any scientific theories or basis on which to put this, I just know it happens.
    Try not to worry about the occasional argument, you are all under immense pressure, your world has shifted, it will be wobbly for a while.

    Friday morning was stunning wasn't it. I was on the school run, and it was just awesome, I said I just want to pull over and stop and watch the colours unfold. Magnificent! Today brings another beautiful morning, I was up very early today, not unusual, but I was able to sit and watch one of the brightest stars move round as dawn approached. It was still very dark and we have a wood at the back of our garden, but through the branches this star shone so brightly. I was mesmerised just watching. 

    I hope today is a peaceful day for you and you get all the clarification you need today regarding the op. 

    xx
  • cosiecosie Posts: 27 ✭✭
    Hello @Jean I hope that your mum's consultant appointment went ok today?
  • SunshinedaffSunshinedaff Posts: 860 ✭✭✭✭✭
    Hi @Jean
    Thinking and praying for you and your mum as you prepare for her operation this week. May you all have peace in your hearts knowing she will be in good hands with the dr's and nursing staff. Love to you xx
  • SunshinedaffSunshinedaff Posts: 860 ✭✭✭✭✭
    Hi @Jean 

    You and your mum have been on my mind for a while. Hope that everything is going ok, especially if the operation went ahead. I hope your mum is recovering well from that. No need to reply, just wanted to let you know I was thinking of you. Lou x
  • JeanJean Posts: 5
    Dear @Sunshinedaff @cosie and all 

    I can but only apologize for not keeping you updated after I brought you into my life story! It’s been a time like no other with the greatest of highs & the most terrifying lows.

    Mum had her operation on the 20th, turns out the cancer had spread dramatically and amongst the number of tumors there was one very large one covering the whole of the lining of her bowels. The surgeon was incredible, operating over 10 hours, he removed a number of areas within her but thankfully none of the bowel so a stoma was not needed. 

    The following day I visited and mum was sitting in a chair next to the bed! Yes there were pipes coming from what seemed almost everywhere but she looked amazing. Surgeon confirmed the surgery went to plan, there was less than a 1cm area left of cancer cells on her small bowels which couldn’t be removed, chemo would be started soon to target this. 

    Within 2 days mum was walking around the ward, the surgeon/consultant Mr Burbos was incredible, visited twice a day and would support her walking, a beautiful gentle man. Things started so well. 

    Then some problems began, I visited daily, one day I noticed her forearm was like a balloon, one of her cannulas had leaked into the flesh, no one had noticed! Next, while a nurse changed her nightdress they unknowingly pulled out her epidural, this happened about 5pm, that evening mum called me in utmost distress and pain, the nurses had only just noticed what had happened, it was 10:30pm .. no painkillers had been administered since 5, and Morphine that was still in stystem had worn off. It took another 2 half hours for an anesthesiologist to come and administer the medication as no one on ward was trained and the anesthesiologists were in surgery. How she survived we will never know because the stories shared to me by patients on the ward were horrific how she suffered. 

    It wasn’t long after that I discovered a familiar smell in mums urine when I supported her to the loo, I instantly knew it was a UTI & passed this onto the nurses who insisted they would test. I was also regularly making them aware she had stopped eating and drinking, that she was constantly feeling sick or bringing up thick saliva bubbles even at smells of food, they explained they were short staffed and were unable to keep monitoring which patients were eating & drinking exactly. I explained I knew something was wrong, the weight was dropping off. It wasn’t until I visited one day and she said she was cold and her temp was burning that they finally listened and all ran around like headless chickens to help. Mum was moved to a private room, given a scan which revealed blood clot on the lung (pulmonary embolism) She was also placed on the sepsis protocol treatment and she had an infection in the blood and a UTI showing E. coli .. 

    I’m happy to say that after all the above, mum returned home on the 3rd. The scar has healed incredibly, we have district nurses daily to give required doses of blood thinners which will go on for next 6 months, although very thin, appetite is improving & I am constantly searching for foods etc to help build her and the immunity.

    We saw consultant yesterday who confirmed it was stage 3 c ovarian cancer, we will see him again in 6 months. For now we are awaiting the date of the start of chemo. This is of course a time that fills us with worries of what to expect. If anyone can advise items to purchase before hand to help make the journey as less traumatic as possible, ways to help nausea, diet advise, dealing with possible hair loss etc we would be very grateful. 

    Sadly my partner found all this too difficult and broke off our relationship. Dealing with heartbreak at this already challenging time has forced me to find an inner strength I didn’t know existed, although I do confess to falling in a heap at times and crying out what feels like every last tear. But life goes on and forwards we must walk.

    I would like to thank you once again for your kindness & concerns.

    Love & light to you all xxxx






  • RobertARobertA Posts: 709 ✭✭✭✭
    edited December 2018
    Dear @jean 

    I can't believe just how much you and your Mum have had to endure and I hope and believe it will prove to have been worth it in the end. 

    How sad to hear that your partner found it all too difficult. We  men unfortunately, seem to find facing up to and coping with health issues so much more challenging than women do. 

    I wonder if you have checked out the Macmillan nurses as suggested by. @Sunshinedaff. I have found their support and care to be invaluable during my own journey, 
    Rob X 
  • SunshinedaffSunshinedaff Posts: 860 ✭✭✭✭✭
    Hi @Jean 

    Firstly I want to say how sorry I am to hear how traumatic events have been for you, to hear your relationship has ended on top of everything else is so very sad. Please do not apologise for not being here, it really is not necessary.
    Your mum and you dealing with it all have been through so much, it does sound like a wonder that mum pulled through and is now at home. Hopefully she will pick up even more knowing she is in her home, having to stay in hospital is never nice, even if it is a 'good' experience which hers wasn't by the sound of it.


    I was talking with someone yesterday about recipes during chemo. @TickOffBreastCancer posted a link for a lovely soup recipe, and the Royal Marsden Cancer Cookbook has some good recipes in it.
    As regards to hair loss, the chemo team will be able to say when approx. this will happen. I think the time depends on which drugs are used. If mum thinks she wants a wig the hospital should have someone who can advise on that too. I used scarves and hats myself. A lot of people say that when hair begins to fall out, quite often it is better to have it removed and done with. I found it very painful, and was glad to get it shaved off to be honest.

    Hopefully you will hear soon when they expect to start the treatment. They may decide your mum will need a picc line inserted, if her veins don't look as if they will cope with the chemo drugs. The hospital chemo nurses should give you a detailed explanation of what they are going to use and the regime your mum will be on. 


    If you need to chat, or anything just say. I will be thinking of you, sending you a big hug. 

    Lou x


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