[suegParticipant]

hi all. I am new to this forum having just found it…….Sorry this will be a long post….!

my 78 year old mum, usually a charming, sociable and friendly lady, was diagnosed with MM in September. She lost a lot of weight from about May- July and blood tests indicated myeloma which was confirmed by a bone marrow biopsy. Initially she was very brave as I know she was in pain, additionally she was diagnosed as having osteoporosis.

She started on an apparently very low dose of CTD therapy, only taking the steroid and chemo tablets once a week, and taking thalidomide at night. Although she said she felt a bit wobbly after the first session we were still enjoying lunches out together as late as the end of November

I suppsoe it was about mid second session, around mid December that the personality change became apparent. My elderly dad has Parkinson’s and claimed that mum was “bullying” him! She had also become weaker and fell out of bed just before Christmas, which ended in her being admitted to hospital on Christmas Day and diagnosed with a perforated bowel (which they said was caused by the steroid) and a lung infection. She was in hospital for nearly 4 weeks and has been realeased home for end of life care with a live in carer (we are so grateful to McMillan and Marie Curie nurses for organising )

i am not 100% sure what her consultant has said to her whilst she has been in hospital (an appointment is being booked) but she isn’t keen to continue with any treatment. She hasn’t taken any steriods for a month now but , if anything, her personality has changed for the worse. She is demanding, moans at my dad continuously and has had her (grown up) grandchildren in tears. Occasionally my old mum reappears for an hour or so but generally she has changed so much.

is this personality change common with this type of treatment? I wondered if anyone else on the forum has experienced anything like it? I fully appreciate that chronic pain can do awful things (I myself sadly suffer from chronic pain so am completely sympathetic) and I wonder if there is anything we can do to help her – although she does not claim to be in any real pain.

the care arranged is through “fast track” so we know Mum is not expected to live for many weeks but I would like them to be enjoyable for her, maybe take her to the sea for an ice cream (we live near the sea) or out for a nice meal like we used to 😔

thank you for reading this

 

 

[mrsbParticipant]

Hi sueg, it was if I had written this post ! My 79 year old mum was diagnosed in sept and had 4 x day carers coming in to provide end of life care as she had 12 weeks max. As chemo didn’t work. She detierated quickly and my children and I took her to the seaside in a wheelchair and then started chemo injections ( why ? we couldn’t work out when so preparing to say goodbye) and now she has been getting stronger and stronger on cycle 5 with no hospice support except for lovely pressure mattress and bed to ease her pain. She came to us for Christmas Day and is talking about getting back to gardening, keep fit and shopping with me. She has had a few blood transfusions and on morphine twice daily but seemed to be getting better. This weekend she has slept, gone off her food and in a lot of pain on and off. Her temp has been low and her vision effected. Her speech slurred and Parkinson’s worst. We have a week off treatment with assessment on Thursday. It is such a rollercoaster. She is angry with dad and very forgetful. Now I have flu and I’m their main carer it’s heartbreaking to see your mum going through this.

The best advice I had was to have no regrets so go to the beach, do anything you need to. Keep strong.

Sara

 

[suegParticipant]

Hi Sara. Yes this all sound very similar. Mum and dad live in a village which is 25 minutes from the nearest town, hence the live in carer (as you say, it’s the “end of life care” for 12 weeks but they say they will review if she lives longer) dad is being assessed for his care needs too as mum used to be his carer. How life has changed in the last year

mum has told the consultant she won’t have any more treatment so we will see what happens. I feel so sad that she is so “out of sorts” , she was so loving and kind. Hopefully this is just a stage and my real mum will return!

i know how you feel, I have mobility issues myself, have type 1 diabetes and whilst I have a brother, he lives 200 miles away, so I have been dealing with it all….which has made me poorly! I realised the other day I was doing 4 generations of my family’s laundry as dad was staying with us and my grandson stays at weekends when my daughter works nights. Life is certainly a challenge. I have been off work for the last couple of weeks sorting everything, I feel guilty admitting that I am looking forward to work tomorrow, just to escape everything  for a few hours

hope you feel better soon and your mum improves

 

sue x

[finnParticipant]

Hi Sue

Sounds like your mum’s chemo CTD was causing too many side effects for her to consider taking any more drugs. However, there are many other treatments with less side effects. I hated the C part (cyclophosphamide) of CTD, it was awful. Then I was on lenalidomide and steroids and now on lenalidomide only, and it was so much easier with minimal side effects! Maybe the consultant, nurses, and other patients, could convince your mum that there are more suitable chemo treatments for your mum to try? Best

[Author]

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