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 Kerrie, one day at a time, one step at a time. Good mums meds are being looked after. Comfort and pain relief top priority. Will be thinking of you both in 24 hrs time. You have amazing strength Kerrie. Take care, love and hugs Kathy x
Hi Kathy and brighteyes, really do appreciate the support, Mums a tad wobbly today and her head not clear, suppose this is the side effects of the the meds. Bless her she try's so hard to be bright and cheerful. At least today she is pain free, thank God. my friend has very kindly offered to attend the hospital visit tomorrow, extra pair of hands and a shoulder for me. I am upset with local nurses as have not heard a thing from Macmillan and boy do I need them.
You are all such a welcoming friendly and supportive bunch on here.
Take care of yourselves, and a huge thank you for taking time from your day to support me, it means a lot.
Kerrie
Kerrie = we will be thinking about you all tomorrow when you go up there. Lets hope it all goes well and you both come away feeling you have been heard and helped. I know you get tired and sometimes things seem quite black - lets hope the hospital provide some relief from that = we will be praying for you and Mum xxx
Am thinking of you as you prepare to attend today's appointment with your Mum and pleased that you have someone else going along for support (extra pair of ears always helpful too). You are doing a wonderful job and I know how hard this is for you. If still no support from MacMillan contact your GP and ask for local community care support(District Nurses) to be involved/increased (we found in the earlier days that MacMilan were rather stretched!). Our local care team had a 24/7 manned help line and we had carers as often as felt necessary. Hope this helps. Big hugs Jules x
Hi Jules, thanks so much for taking time today to write to me, I hope today and the celebration of your darling husbands life went well, I am certain you have done him proud, you are an inspiration.
I went to hospital with my friend as mum was away with the fairies this morning, no memory of anything, so had doc out again. Hospital confirmed terminal cancer and palliative care only option, and they have again requested Macmillan support for me. Speak soon, take care, a hug and kiss from me to you special lady. Kerrie xx
Thank you for your supportive post of my thread where I have just left a joint thank you message.
Am sorry that you face a similar journey now with your Mum's terminal cancer but remember to look after yourself too. We cope better if a little rested even though I know how difficult it can be. Hope you get the extra support and do not be afraid to 'keep on asking' (should not be necessary I know). Here when you need to offload - this forum is my own inspiration. Keeping you in my thoughts and sending a big hug. Jules x
Hi Jules and all on here, had a tough week between side effects of meds and trying hard to remain strong etc. Macmillan been today a lovely girl . My predicament is this....my mum has always been fiercely independent since my dad passed away 17years ago. I enquired that when I need to return to work what outside support can I expect? They advised on carers , and a weekly visit to woodlands hospice for therapy, bingo etc. and whilst my mum realises I have to work, (I am sadly, divorced 16yrs, ) she does not really mix well, is very private and does not appreciate a regular schedule, so has refused, without actually saying it, any help. But thinks moving in to sheltered accommodation is the solution. It's not, I would like nothing more than for her to be back in her lovely flat all snug and fit as a fiddle, but this week, I have dealt with pain, weakness, confusion etc. I notice slight changes each day, her motor skills out of sync with her brain etc. she doesn't eat all day only dinner in the evening, and this is a very small portion of whatever I am cooking. I have a brother who is local, the rest are all over the place, Dorset, Holland and Argentina.....he is good for a visit and that is it. He does however offer to take mum for a drive, but she declines. She is not cantankerous but would rather I did it all.
How can I encourage her to accept some other help rather than allow her to live alone again as this really is not the answer? Any suggestions would be appreciated xxx thank you all in advance.....Kerrie xxxx
This is a very difficult phase for you all. Mum wants(even needs) her own space in which to deal with this rotten illness and in her own way is trying to protect her children by wanting to cope privately and alone. My hubby did this throughout the three years of diagnosis and the frustration I felt in not being able to 'help in my own way' was enormous. Its so, so hard watching loved ones struggling with day to day tasks whilst trying ourselves to keep some normality in our lives (this is absolutely a necessary part of the journey and we have to accept we cannot do it all nor is it expected by others). You are a wonderful supportive daughter but you must gently explain to your Mum that you fear for her safety when you return to work and need to have 'caring' in place for her to give you peace of mind. Perhaps the MacMillan nurse can sit with you. My hubby did everything he could to protect me (it was his biggest worry!) and your Mum's instincts will be the same. I really hope you can, between you, come to a compromise (this illness needs lots of them) to help you cope day to day. Hubby had limited care from community nurses and when it became necessary it was upped (last few days they were in four times daily) and I could not have managed without them.
Take care forum friend and off load any time (I have and still do). We all have needs. Big virtual hug.Jules x
Aww Jules thanks so much......mum has slept nearly the entire day today. Oops she just woke ... Back soon x. It is now 13.30 on Sunday......she has slept all day other than meds at 10.30am......is this the meds or the illness that does this? Or a combination of both?....was promised a call this morning at 10am from district nurses, needless to say no phone call, rediculous when you are feeling out of your depth. Kerrie xxxxx
