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.
Sorry for delay in responding but phone line causing problems again with access to the net. Fault reported and being looked into!
Bet your Mum just prefers the comfort of her own surroundings so try not to take it personally but can understand your concern as I used to worry about my Mum when she was living alone in her rented flat before she moved into care (she refused to return home after a fall just over two years ago now). Is it possible that she would agree to wearing a panic button (local social services can usually arrange this) so that if she feels not so good she can use this (they would in turn contact you as her next of kin if that was agreeable with her). It is not easy for you (b........... stressful) but they just see themselves in the equation and know what they want bless them. It will be good if your kids can pop in (strangely she may listen to them more than she does to you - definitely the case with my Mum!!).
Have spent today out browsing the shops with my daughter (her birthday yesterday) and treated her to lunch out (also meant son in law looked after the two boys and gave her the opportunity to shop for herself in peace!!). The eldest is on half term now so on Tuesday (my day off) we are taking them up to London to 'do the sights' and feed the ducks in St James' Park so could be going into work on Wednesday for a rest ha ha.
Look after yourself and though I know its no good telling you not to worry about Mum you are doing everything you can (or she will let you!). Hope you both have an easier week and that her GP can help with some of her health issues to make her more comfortable. Sending hugs.. Jules x
Had a very good (but tiring) day out. Did seem a little strange walking through the area I had known so well when I worked (bank still there!!)up town over 33yrs ago but love the sightseeing through kiddies eyes.
Hoping to get phone trouble sorted tomorrow as have engineer coming in (2nd time in a month!!). Had messages on the answerphone but could hardly hear them the line is so noisy and they say it is not an external fault so need access again.
How are you and your Mum doing? Keeping you in my thoughts too. Take care sending hugs Jules x
Hi jules, your best wishes are much appreciated as always, not been on for a while, mum had a fall on the 15th outside her local Sainsburys, no injuries, thank god, but she was very shaken up, some wonderful people picked her up and drove her home, settled her until I arrived. So she's not allowed out on her own now! This was one of my biggest fears. Since then it's mostly been bad days, liver pain and bowel issues. She remains positive throughout God love her. I go over every day, help with cleaning and housework and do her hair most days so she feels better. Her pain relief has been increased but oramorph reduced to stop her feeling spaced out. Nurse and Macmillan been today and finally got a double pressure mattress delivered so things are ok today. How are you honey? And your lovely family?........Kerrie xxxx
Just logged on this evening and am pleased to see your post and that the double pressure mattress has arrived to help your Mum be more comfortable. Such a shame she had the fall and it really does knock the stuffing out of someone (my Mum certainly had her fair share and this is how she eventually came to be in residential care (good news this week is that our local council have finally agreed to fund her now that her savings are so low (and are going to reimburse her too)). Good to hear that your Mum's support network are rallying to the cause and am sure they will call as often as needed and can keep checking on her pain levels/relief (certainly with my hubby it began with twice weekly and at the end it was four times daily which was a great support to me too - it actually allowed me to continue to go to work (I am only part time) which is what he wanted). Hubby did not like the oromorph much but had to admit it was best for his pain relief though it did not space him out - left him sleepy.
I am currently on annual leave as needed to take the holiday (I had saved just in case) or lose it by end of March. Am using it to get as much done as possible and have several appointments to keep and people to catch up with. Have begun a bit more in depth Spring Cleaning (well the weather is keeping me inside as much as I would prefer to be outside). Have begun buying plants (well bulbs/tubers) ready for planting next month and now have the added security of a new back garden wall (fencing was tied together with bits of string for years!!!). My kids are, I think, slowly making the adjustment to life without their Dad and know they can chat with me about him any time. My six year old grandson is also asking questions and seems satisfied with the conversations we have together so progress is being made. Its still early days but new routines are being built and good memories cannot be taken away.
Do continue to look after yourself as you are doing so much for your Mum (I know how easy it is to forget yourself as am playing catch up now). Sending peaceful thoughts and virtual hugs Jules x
Hi Jules, I am delighted to finally read your mum will be looked after and not have to use her own savings, must be such a relief for you both. I have been signed off work for another month to take care of mum, I go every day. Last night we went for a drive to Southport, had a coffee in the car and people watched. We enjoyed it, she had been in bed most of the day, just relaxing and enjoying some peace and quiet. I really do have the best mum you know! Sending you a BIG hug for all you do for me. I told my daughter all about you the other night when we were having a snuggle in bed, she was in tears, I said to her people on here drop me a message to ease my mind, they take time out of their days and suffering and it feels wonderful to have the support. Have a lovely peaceful weekend Jules, thing of you and yours xxxxx Kerrie xxxxx
Wow Kerrie you were an early bird this morning. Mind you I am still having 'short nights' and it seems my body has just got used to them. Never been one to do the eight hours bit but get annoyed when its still the very early hours and then its a struggle to drop back off.
Good to read that you are able to spend so much time helping your Mum and you will both be getting so much out of these times together. All Mum's are special (you included!). I visited Southport a few years ago for the day (we were staying with my son in law's Dad for an Easter break in Wigan) and like you I love people watching.
Your kind words made me teary but its good to know that the way everyone supports each other on this forum can help a bit during the difficult times. I have always felt I am just returning the favour so many helped me for so long and I am still drawing strength from having understanding folk out there. My daughter and son know I joined the site and am still part of its virtual community - strange really have never wanted to do the 'facebook' thing but they just take it for granted!! Sometimes its just more practical to talk to those with understanding but no emotional attachment to your 'real life'.
I am finding having a Spring Clean quite therapeutic but as I do not drive, the bits going to local charity shops have to fit in my trolley ha ha. Little and often seems to be the key (I have been an avid reader but hubby's tastes not mine so have load of science fiction novels to recycle!).Am aiming to take a trolley load a day and spread them between several nearby charities though its a temptation to 'stay and shop' which would not help the tidying process would it!!!?
Have a peaceful day. Am soon to take a walk - so far very bright and sunny here- local farmers'market opens at 10 and its about a half hour stroll away. Would really like to mow the lawn but still a bit too soggy so will have to curb my impatience for a bit longer. Look after yourself and thanks for chatting.Sending virtual hug.Jules x
Hey Jules, sorry it's been so long since my last visit here, things with mum have been mostly bad days recently, so I spend every day there. I am always present for DN visits and Susanne from Macmillan.
Each time mum eats she's in so much pain digesting it and passing it, meetings are always pain and bowel related she gets fed up talking about it. She is now under 7 stone in weight and a size 6 in clothing. My heart breaks just looking at her. Her meds have all been doubled in the last week, we had a couple of decent days during last week so got her out in the car for a drive and little retail therapy to an outlet village in Chester for a new dressing gown. We did however have a lovely Mother's Day together which was simply wonderful as I know it's my last and will treasure the memory for rest of my days. I made paella and
We picked up garlic bread and tapas from the local restaurant, lovely. Mum looked beautiful too in her new clothes.however I have just been informed by work my sick pay stops this week and I have to return to work next Sunday . Will have to try and get mum to accept a care package or change my hours at work if they will let me, I have a few meetings scheduled this week, it's so hard. Especially as mum having a very bad day today, the work place should really help more. Feeling quite low today honey. I have had a clear out already at mums, at her request, just clothes for now. Will keep you posted. I have read a few of your recent posts to the new people in here, your caring words of support and advice are second to none and am sure very much appreciated especially to stevie82 , poor lad . Keep doing what you are , I think this is your vocation in life, ....simp,y fabulous you are, take care love to you and your and a big hug. Kerrie xxx
Update, went up to see mum about 4pm and stayed until 8pm, she had a panic attack at the thoughts of the pain increasing yet again and me returning to work, God love her. Very shaky . I don't like seeing her that way. She had her shower and I did her hair for her, changed her bedding, popped a wash on, checked her meds etc and by the time I left she was feeling a little better. What a beast of an illness this is. I can't sleep and am so emotional , I am praying work will allow me more time with her. Going back at 9am as DN due to change dressing on a tiny bed sore she has, will ask them to speak to Susanne and get the MST increased again I think. Tried so hard to hide my emotion last night from my kids that I could barely speak my throat muscles and chest were hurting holding it back, had to have a silent cry in downstairs WC as my daughter falls apart if she sees me upset.
Mum says when I am with her she feels relaxed and knows I make everything ok for her, I never leave until the pain has eased. She said it's like when your little and hurt and you see your mums face and you know she will fix things and comfort you , she said each time she has passed out she's glad it's my face that is the first thing she sees, I genuinely don't know how I will live without her! She is my bestie. .......
