Sara

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Viewing 7 posts - 1 through 7 (of 7 total)
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  • #137411

    mrsb
    Participant

    Hi sue,

    may I ask why you have to go to India to get this ? My mum is starting this drug next week here.

    Thanks

    sara

    #137283

    mrsb
    Participant

    Hi this sounds so familiar yet different – my mum has myeloma and I am her carer (I’m 52- mum 79)but my dad is being so difficult and seems jealous when we are concentrating on her and gets so cross with her for being tired, slurring her speech etc and then has symptoms (genuine health issues but why make a fuss of them)to take attention of her I think it is his way of trying to cope and not show his true emotions. When mum was really poorly and diagnosed with less than 12 weeks he was devastated and as she is still fighting after 12 weeks it’s like he is in denial and given up being nice all the time as all will return to normal . I know he doesn’t mean it but he is hard work when we have enough to cope with day to day. Keep strong and don’t judge others on our own standards, rise above it, share your feelings ,don’t feel bad having negative views just because someone Ill and take care of yourself. Give him space and tell him how he makes you feel then follow up with nice gesture to show no hard feelings. You are obviously doing a wonderful job and need an outlet for these feelings which are normal xx

    #136894

    mrsb
    Participant

    Alexis I feel so badly for you. My mum is poorly with mm and since diagnosis and caring for her for last few months I don’t know what I would have done without my husband of 30 years who is 52 ! I can not imagine what this must have been like for you and you need to talk. I have seen some horrendous things with my mum and been close to the end a few times and if I hadn’t talked about it couldn’t be strong atm to get through. Please talk to someone don’t go it alone. My dad is in denial and my brother has withdrawn from the care – I break down on a weekly basis but you must share your feelings. Take care xx

    sara

    #136893

    mrsb
    Participant

    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

     

    #136306

    mrsb
    Participant

    Maureen, I am so so sorry to hear the sad news about your husband. I was following your story and felt your love and your pain. Thankyou for sharing your struggle as it does help others. My mum is on cycle 3 of velcade/ dex but yesterday her kidney function wasn’t good. It is such a rollercoaster and with Christmas looming I am so worried when things might go wrong again. We have had days where we thought it was over, my dad flipped with too many visitors etc so I know how you felt. The pressure on me caring for them and working at the same time and my brother not wanting to face it is so difficult and causing strain. I understand he doesn’t need to do mums intimate care but the appointments, cooking, sorting the hundreds of tablets is so difficult. ( dad not able to do things and mum was caring for him before this diagnosis in sept) just don’t want any regrets and turning twice weekly hospital visits into a chance to have a coffee and cake and a laugh when we can although inside it is hear wrenching. Mum wants to see my children get married ! I feel so sad every time she says this is why she needs to fight it as don’t think it’s going to happen. My son planning on next year and my daughter not engaged yet . my  thoughts are with you x

    #135917

    mrsb
    Participant

    Amazing day today! Walked few steps on own in order to visit my sons house and ate lunch – appetite back and very positive. Although very tired after effort, mum is showing such strength. She has chemo again Tuesday but may need transfusion if red blood cells don’t improve, was a different woman after last one. Dr tore up her dnr form on Friday due to such progress. Unbelievable how much of the early days of diagnosis and how poorly she has been are a blur for mum – probably just as well. Positivity is definitely the best medicine. Thankyou for giving us a different outlook. We are not going to have any regrets x

    #135812

    mrsb
    Participant

    Thankyou Rebecca, your positivity has already made me look at it all differently – I’ve been scared to enjoy the good days I think but going to embrace it today !

Viewing 7 posts - 1 through 7 (of 7 total)