My mum has just been diagnosed with primary gallbladder and secondary liver cancer. She has been poorly on and off for the last year, fainting, sickly, fuzzy head, some memory loss, stomach pain. Initially diagnosed with helicopacter pylori in March 2014, treated with antibiotics and seemed ok. Then continued with the above mentioned symptoms throughout the year, eventually after numerous blood tests, 4 chest X-rays and an endoscopy after a visit to A and E, she was diagnosed with a hiatus hernia. She had lost weight when we attended for the follow up and had what she thought was constant stomach pain. She had been off her food for fear of aggravating the her is. When she told the consultant he immediately felt her abdomen he requested an urgent ct scan for 12/12/14. She was then given her results!! After being told all year nothing detected and given the all twice by A and E for anything sinister I was shocked but expected bad news due to her demeanour.
Biopsy taken this week on 05/01/15 and results due 19/01/2015, which tbh I do not want to take her for! Her GP has told me its is aggressive and advanced, how does this happen after all the blood tests showing nothing. She has gone from 9st7lb to 7st12lb in 3months, is now living with me as I cannot bare to leave her in her flat. I am giving her meds as instructed, just got nurses in and Macmillan are due. They keep advising it is palliative care based on the noted received yet the information given at the hospital was limited. Am not happy at all that nothing showed ip sooner, I am struggling as I really do not want my children to see Nana die, they are adults mind, 22and 24, but I remember my Dad and it was awful to see the deterioration. I do not know how long? But I pray to my God it's not too long as muther bear is amazing and does not deserve to suffer . She knows what is going is fully lucid at the moment, yet is hoping to be better for the summer, awwww I am heartbroken and feel I am grieving before she's even gone. My perfect mum, my friend, my one true love,my advisor, my teacher, my everything, my world and universe how will I cope with this silent disgusting disease.
Not easy days for you, your Mum and the family. It is emotionally hard and draining to watch loved ones declining and I found it very frustrating that there is little that can be done personally to change things. We were very lucky to have good district nurses/palliative care team and though at the beginning of hubby's three year journey with cancer I was offered six months unpaid sabbatical from work if required I only ever used a few holiday days. Hubby's decline was slow and then deterioration rapid between Christmas/New Year. Of course personal circumstances are different for everyone and I hope that even if you have to return to work your Mum will help give you peace of mind by allowing you to arrange carers to call. My hubby only went out for medical appointments in the last month of his life (still drove himself!) but once he was housebound social services fitted a keysafe outside so that carers/callers could let themselves in if I was out (still worked/shopped until four days prior to his passing). It worked well for us and only people who knew the code could access it.
You mention the pain eating is causing your Mum and hubby was virtually pain free but still found it hard to eat (14stone became under 9!) and was mostly on liquid shakes and mashed bananas but did keep on drinking and even had breakfast on his last morning with us (sadly he never enjoyed food much once her had chemo as it really affected his tastebuds).
Will keep you all in my thoughts and am here to listen when you need/can manage to offload. Do take care of yourself as best you can given the circumstances - its all too easy to forget yourself at such times.Sending virtual hugs.Jules xx
Hey Jules, thanks for reply. mums meds increased again yesterday due to pain. Had a meeting at work and have filed a claim for group income protection , if successful. Should receive 60% of my income, this will not cover my living costs but is a start. With mums diagnosis being terminal from the start and no treatment available I wanted to be there for her day and night if required. This time is precious and I will never get it back. My GP has refused to sign me fit for work, I have been given an antidepressant to help me cope as I have very bad anxiety attacks. The doc said I would regret returning to work in the future and this may have repercussions for my mental state in years to come . I had a lovely day with her yesterday once we got the pain under control, GP said not to worry about getting her to eat as it just feeds the cancer. So no more try this try that just going to let her potter and pick. I see her skin starting to break down now too. It's all very sad. Big hug Jules have a peaceful weekend xxxxxx Kerrie xxxxx
So, from the timing of your post you are grabbing sleep as and when you can, or just coping on disturbed nights - definitely know about those. Just great that you have supportive GP and hope your income protection claim is successful. As your Mum is terminally ill does she receive any 'social services' help or payments through the DWP? It may be worth making enquiries for as you are looking after her she could claim attendance allowance or maybe you could apply for carers allowance - worth looking into certainly. Depends on your income as to what level you can get (my husband was on full benefit anyway due to the nature of the cancer he had being asbestos linked so though lucky is not a word you would want to choose, we did not have the added concerns that you are trying to deal with).
Its lovely that you can spend this precious time with your Mum and good that she is having her pain controlled now - it makes a huge difference to how she will be able to cope day to day. Hubby turned to 'mashed' and liquid food(and finally just drinking - chemo had destroyed his taste buds and he really did not enjoy eating but bless him did try for me) for quite some time prior to his passing and its so sad seeing your loved ones not being able to enjoy things as they used to. Always remember you are doing your best and you do need to eat properly yourself to maintain your own health and stamina (bet she tells you that too) . I actually found it very difficult having to eat normally in front of my husband (the guilt was rediculous but I could not help how I felt) and used to get meal tiomes over with as soon as I could. Its nearly three months since he passed away and I am just getting back to eating healthily (have cholesterol problems and had been controlling it through diet and now due to have repeat blood test to check level and dreading it!!!). Comfort food not always a good thing eh!!
Not sure if there is anything the nurses can do re your Mum's skin but we were give a 'heavy duty' moisteriser to use twice a day (via prescription) for use on the body and could have had massages at local hospice day care but did not like the idea so we managed it at home.
Hope you have a peaceful day with Mum and sending virtual hugs. Jules xxx
Hello Jules, Kathy and my other forum friends.......it is with a very heavy heart I have to say my beautiful brave Mum....mutha bear....gained her golden wings on the 15th and went to heaven to join my big strong Irish Dad.....May God rest their souls, reunited once again. She was comatosed for 5days and every so often a big tear would drop from one eye, she simply did not want to leave us all. Arranged the funeral today for the 24th and looking forward to having her at mine next week, one last snuggle. Thank you is not a big enough word to say to you all for looking after me since my first post. You have been truly wonderful. Take care my friends, love Kerrie xxxxxxxxxx you are all in my prayers xxxxxxxx
My thoughts are with you at this saddest of times for you and your family. Your heart may seem heavy just now but it has been, and will remain, full of love and wonderful memories in the days/months/years ahead. You gave your Mum such precious company in her final weeks.
I will be away for a short break with my son/other half/dog when your Mum's funeral takes place so will send peaceful thoughts now and comforting virtual hugs.
I am still finding the forum a comfortable place to be and like you am so thankful to all those who support us.
Thanks Jules.......I was totally traumatised the last 12days, I moved in to hers and my brother flew in from Spain and stayed also. All the family were popping in and supportIng us. I will take strength from you brave lady as I too continue my journey without my best friend. Enjoy the tIme with your family, love always Kerrie xxxxx
Hi Kerrie, Oh my darling I am so sorry to see your news. You did all you could and should have no regrets. Your mum was so fortunate to have such a loving and caring daughter. As you say she and Dad are reunited again. What joy they have. They will be looking down on you and will always be with you. Will be thinking of you on the 24th and sending you big hugs honey. People tell you time heals but translation means we cope with the hurt differently as we learnt to cope. We have to get comfort from the thought our loved ones are no longer suffering and are in a better place. Love Kathy xx
Can only describe my feelings at the time as being on autopilot and though expected felt a little numb. Good and bad days still but you learnt a lot from your 'best friend' and Mum which in time will help you move forward. Kathy is very wise in her words and your Mum lives on within you always and in time those memories will be your companion. Take care forum buddy and allow yourself some tlc.Jules x
