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.
So sorry you are going through this rotten journey and hope by now district nurses have been in. We had direct number to call 8 am to 12 midnight if in need of help/advice, as part of hubby's palliative care regime. That being said if you are at all worried give 111 a call for advice.
As to the tiredness this was the major side effect of hubby's illness almost from the start and the meds also play a part. I know how frustrating this feels but I also know that I felt some relief when hubby slept as he was free from pain.
Am keeping you in my thoughts (internet is being a real ......... at present so sorry for slow response) and sending virtual hugs. Jules x
I second what Jules has said = we also hold you and mum dear in our hearts. Poor mum - no matter how she is - she is Mummy. Do feel confident of our thoughts and prayers at this time.
Do take care of your self Kerrie
you are not alone in this -- we are all there in our thoughts with you
Hi Steven and Jules my dear friends.....thank you for the support.......I woke mum at 2pm.....got her washed and blow dryed her hair etc, she looked like a new woman and felt like one too! Thank God. She felt well enough for a run out in the car so got my brother to take her while I had a little me time, we have just enjoyed Mr Selfridge together snuggled in my bed, although she doesn't remember watching the last two series she did enjoy it. I suppose each day brings something new with this illness and trying to take one day at a time. I cannot say in enough words how much comfort I get from you guys on here. You are all in my thoughts too.
Virtual hugs right back at you xxxxx night and God bless Kerrie xxxxx
Thats brill Kerrie = I bet Mum is basking in her new hair do and everything. Isn't it wonderful to have a mum = someone who knows you and loves you through and through right through all your life. Amazing! Always there! I am glad she was able to get out and enjoy her self.
And also you got some ME time = most important - I can't rate the importance of a little square of dark chocolate every day that I have = the World feels better as I munch it down - You deserve every little treat you have. Never watched Mr Selfridges = but do love the costumes etc. Do you know we live near where Jane Austen used to live = and on Jane Austen Days the paths are full of ladiesgaily walking about showing off their gorgeous costumes and their beau's in smart 18 century frock coats etc. Love it!!
Well, okay = here is a bigger hug XXXXXXXXXXXXXXXXXXXXXXX for you as I go off to work today!!
Hi Steven, have not had a chance to get on here in the last week.......so after occupational therapist came last Thursday it sent mum on a downward spiral, she did not want any disability aids in my home, she is not being awkward but it distresses her. Her mum was bed ridden for 40 years with MS and disability has always frightened her. Anyway last Saturday morning she had a total meltdown, she has now gone home to her flat as she simply could not bear loosing all her independence. I felt I had failed her, perhaps smothered her with care even. She's not doing too bad at home and I am 10 minutes away by car. My brother is closer, so we are all visiting each day along with her brother and sister. I am now back to not sleeping as I feel I am on red alert just anticipating a call to say she's unwell, it's awful. She was pale today and is sooo thin due to not having an appetite. Although she does drink the ensure drinks at least 2 per day. It's so sad, I feel like all we talk about now is how she feels and what she has eaten etc you know the usual conversations when someone is poorly, our normal conversation has diminished somewhat. She said today ' perhaps they have made a mistake' in the diagnosis, oh I only wish. Anyway thinking of all my friends on here right now, in my prayers always.
Kerrie xxx
You post broiught back so many memories for me (and the tears) but please, please do not blame yourself . You have done and are still doing what you felt necessary to give the love and support to your Mum. Its so very hard to 'give it all' and feel its not enough (my own frustration was enormous even though hubby was 'at home' he wanted and did shut me out on many occasions). In her own way your Mum needs to be in her own surroundings (and I have no doubt as a mother that she is also protecting her children because its what Mums do) and maintaining her independence it important to her. I also relate to everything revolving around the cancer/eating/drinking. Its because we care that we constantly feel we are 'pushing' in the sincere hope it will make the precious time longer. Your Mum is doing well to be managing the Ensure drinks (I really struggled to get hubby to take these in the latter stages of his journey) and hope your community carers are on hand as and when necessary.
As to the sleeping (and lack of), I am still struggling to 'go through the night' (sounds like I need to be 'baby trained' all over again). I am wondering if you could reach a compromise with Mum and perhaps have a sleepover at the weekend. We need some sleep to be abe to cope with what life throws at us but somehow we do manage.
Take all the support you can from friends and family and the professionals but ultimately your Mum knows how she wants this journey to be (it took me ages to realise hubby's thinking was different to mine!). Your forum buddies are here when you are able to chat but in the meantime sending big virtual hugs and keeping you in my thoughts. Jules xx
Dear Kerrie, as Jules has said you are doing all you possibly can don't beat yourself up honey. Mr C can take over our lives when caring for someone. Sometimes they strive for a bit of normality to be talking about anything else except their health. Good mum is taking the drinks. Hubby would love conversations about anything bar what he was going thru (except Aussie rules football and politics). Her hoping incorrect diagnosis is ok, quite normal, something we all hope for. Hubby as an ex nurse chose not to look at scan results after first one, didn't want to know whereas I looked at them so I could prepare myself, that I believe gave me the strength to cope, so when the specialists have us the news I already knew and was able to be supportive. A suggestion is talk to mum re the good memories of growing up etc, laugh, reminisce and tell her you appreciate all the good she has done (am sure you have done this already). Mum appears to want to be as independant as she can be as long as she can and this is important. Re your sleeping issues all I can do is sympathise, it's not easy. You are here with friends Kerrie to unload to, rant and rave but we, your virtual mates are here. Wish I could give you a real big hug, but have to make to make do with a virtual one. Take care precious angel. Thinking of you. Kathy xx
Hi Kathy and Jules......thanks for the replies and continuing support......i feel lost since she has gone, yet I also needed the respite too. I have been decorating the last couple of days as I am signed off work to take care of her and was bored without her. I have not invited her to mine this week as I fear she may get a shudder at thought of being here as last week she felt trapped, maybe next week eh?.....my brother is over from Argentina this weekend so she will have him staying, we have agreed if she takes bad again we will take turns staying with her. I am hoping she is well enough to visit the hairdressers tomorrow for a much needed trim, this will make her feel better, I have also bought her some clothes and a new coat to fit her tiny figure so the weight loss is not so obvious. Love you all dearly thanks for taking time from your day and trauma to help me, kerrie xxxxxxxx mmmmwwwaaahhhhhh xxxx it's a lovely sunny day here in Liverpool! Always makes you feel better when the sun shines xxxx
Hi Kerrie, great news brother is here , that plus hair do will give her a real pick me up, You are doing so well Kerrie, being so supportive., you are doing all you can, what more can anyone do.? Liverpool always reminds me of the "liver birds" a sitcom when I way younger an aon ago and living in the U K. Now I feel ancient. !!! Talking about sunshine don't look at Adelaide weather you will turn green at envy. Maybe not. Take care sweetheart . Kathy big hugs xx
Haha Kathy I loved the liver birds when I was young, our city has improved so much and Scousers have such kind hearts and spirit.......how are you at the moment Kathy? Xx
