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My Life with My Cancer

flojoPitottia

I’m flojo Pitottia, I’m 52 and on the 9th April 2022 I was diagnosed with LgG Lambda Multiple Myeloma.

I began treatment on the 9th August 2022, 4 months of Thlamidomide, Dexamethasone, Velcade. Daratamamab, then on the 21st January 2023 I had a stem cell transplant, then from April to June 2023 I had 2 more months of consolidation chemotherapy, once that was done I was put on Revlimid 10mg.

July 19th 2023 I was admitted to Hospital with blood clots on both lungs and an infection, to which I nearly died. They gave me very strong antibiotics to which I reacted quite badly to one of them. I was covered from head to toe inside out with a nasty rash.

My Husband has been my only real support during all this. My 2 elder daughters have been on the end of the phone but too afraid to get close as they have young children and were worried they’d pass injections onto me.

I always make my husband know how much I appreciate him and love him, he always says he doesn’t do it for appreciation but as I tell him, if it wasn’t for him, I wouldn’t of got through it all.

Im petrified for the future, I’m in a good place at the moment on the maintenance phase.

i have a lot of stress with one of my kids who knowinging screwed up everything for my 3 younger children ( I can’t go into it)  I’ve been so fed up with her behaviour my husband and I came off All social media ( my nurse advised I do because of the stress she’s causing) and now I’m getting messages off friends telling me the daughter in question is posting she has a brain tumor diagnosed last week and on Saturday just gone apparently she had her first treatment then went for a bus ride……. The video she put up shows her on a bus heading to Ross where she met with her twin.

My husband and I confronted her boyfriend today to ask him about it, he looked totally lost when we asked had she had any treatment he told us no because she hadn’t seen a specialist yet, we told him my friends have seen her posting that she’d already started.

My 2 elder girls think she’s lieing and are really annoyed, I don’t know what to do, I don’t feel well, I have bone pain, headaches, server Fatigue, nausea etc and now a ton of stress.

  • Hello Flojo

    I'm sorry to hear about your diagnosis and all that you've been through over the past few years with your treatment. It sounds like it's been an incredibly difficult time for you and it's understandable that you're feeling physically drained.

    I'm glad to hear that your husband has been such a great support through all of this and that your elder daughters have done what they can to support you whilst keeping a safe distance. It's at times like this that having good support from family and friends can make such a big difference to how you cope with the demands that treatment can place on you. 

    It sounds from your post as if you have a supportive nurse involved in your care. Make sure that you tell your clinical team about your concerns for the future. I know that many of our members here will understand the fear that comes with living with cancer, especially during the phases of treatment when you're feeling well. Hopefully, the team will be able to offer you some reassurance and may be able to arrange for you to talk to a counselor or cancer psychologist to help you with your concerns. 

    With regard to all that you've mentioned about your other daughter, it sounds like it's a difficult situation. From what you've shared in your post there have been some problems in the relationship between her and the rest of the family and now there appear to be some discrepancies between what she is saying publicly about her health and what her partner has told you. Only you and your husband know what is best for you both regarding your relationship with your daughter. Sometimes the right decisions aren't always the easiest but try to remember that your health is important. 

    I do hope that as you move forward things improve for you. Keep in touch here if it helps to have somewhere to share how you're feeling, to chat with others or to ask questions. We're here to listen and will do what we can to help. 

    Sending you both my best wishes, 
    Jenn
    Cancer Chat moderator 

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