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.
Hi Kezzaroo, so sorry to see the reason you have joined this forum of wonderful people. I have no answers why it took so long to diagnose Mum. Your mum is lucky to have you as a loving daughter. I can understand your anger, confusion and feelings of helplessness. Have you seen/ spoken to the McMillan nurses as yet? I hope you are looking after yourself too, that also is very important or you will be running on empty. Best wishes Kathy x
Hi Kathy, thanks for your kind words of support. Macmillan due any day thank God. I am not angry to be honest more frustrated and naturally filled with overwhelming sadness, I actually feel like I am grieving already!
Sometimes just lost for words, I came upon this site a couple of days ago and have read most of the blogs from those going through the same issues, what strikes me most is the empathy and sympathy shown to each other on this site, it's simply wonderful.
I am at a loss at the moment as to whether or not I should go off work now to care for mum full time, as not given a clear indication as yet as to ' how long' I have with her left. I understand the docs cannot give an exact timing but something would be better than ' no more than a year'. Considering the diagnosis , maybe the consultant can give a better indication on the 19th jan when we return for biopsy results.
Kerrie
Hello Kezaroo = I felt really sad for you and Mum. This does happen and due to insidious nature of he problem which can hide and mascarade. Lets hope they can treat it and hold it back. Poor Mum, she must be devastated and thank goodness she has you. Its hard on the family, in my expereince, and I found that work were helpful and supportative going to work gave me a boost that I needed.
Oh bright eyes thank you so much for the support, it unfortunately is not treatable, too advanced, so I am receiving palliative care with Mum. I have decided I will not return to work as I just cannot leave her she's so weak. She barely eats, although sleeping has improved now she is on MST.
Hey Rat, thanks for the reply and support, I am trying to look after all involved right now, sometimes it's hard being everyone's rock!.....her brother is coming today so hopefully a little boost chatting about the old days, she loves that. She is 82 by the way a very intelligent lady, just seems a bit disinterested in things at the moment. Thanks again, Kerrie
Your kindly posted on my thread and I felt I would like to offer some support on yours too. It is very sad that you and the family are having to watch your poor Mum deal with this disease but she will be pleased to have you around her. I learnt the hard way that we 'carers' cannot do it all (slept less and less as our three year journey drew to a close) and we all need some support to cope with the situation. Please remember to eat and take care of yourself (your Mum will tell you the same I am sure). Hope the nurses can give you good support - our local community nurses were amazing and they can answer a lot of your fears/questions so if you need to write down how you feel and what you need to know. Caring did not come particularly easy to me but we managed 'at home' as he wanted and I shall be forever grateful for the support I received both from the NHS team involved in his palliative care and the buddies I found on this virtual site. Take care Jules
Hi Jules, thank you for your kind words of support, I really appreciate it, had a tough couple of days recently and found personal time hard to find. Thinking of you too brave lady x
Hi everyone, mums pain worse today all meds increased by the locum GP, I am so scared, she slept well this afternoon and is more responsive this evening, just taking it day by day. I am dreading Monday for the hospital visit and results of biopsy, God help us x
We hate going to the hospital also - its like going to the head mistresses office as a child!! Still good luck for Monday - lets hope it goes smoothly and without having to wait ages. My heart goes out to you all at this time as it is full of uncertainty and pain..you must tell them to address that pain when you go on monday. We quietly offer support to you all at this time
