My twin sister diagnosed with ALL

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Hello i am new to the forum. 

My identical twin sister aged 51 was diagnosed with ALL in April. She is a patient at Kings College Hospital . From the onset i have always said i would offer stem cell donorship if it was required. Well they are aiming for her to have a  BMT in Sept and i have been approached by her BMT Coordinator Nurse Specialist. I have my first lot of blood sampling scheduled next week to see if i will be a match  although i understand it will take approx up to six weeks  for the results. If i am then it will be given an appointment to attend the  donorship clinic for medical assessments etc etc to determine if i am suitable or not ; prior to having the stem cell extraction procedure thereafter. 

I am hoping that i will be a suitable donor i really do.....if i can provide the gift of life to my twin and give her every potential of success for a positive outcome, i really am praying hard. 

When she was diagnosed it appeared so sudden thus subsequently it  was a rollercoaster of emotions for her and us as a family. It was very hard as there appeared to be a reliance from the family for reassurance from me (I have a nursing background). I felt the pressure was on for me to stay strong for them when in fact i was eating away inside. Being a twin, it felt like  half of me had been taken away. 

My sister has her up days and down days but i have to take comfort because  she is determined to beat this. When she has her good days, she appears so positive in her own individual way. 

I do feel sad though because she was a person that had never been in hospital as a patient and rarely saw the GP....then there was that life changing moment when she was diagnosed. My twin sister that was never ill gets ALL. It has been  incredibly hard to process it all. I try to rationalise it all but there are times when I just have to cry....its the IF'S , BUT's and What IFs? 

It has also been hard because we live a long distance from each other and along with all that has been going on with Covid, i can't simply just drive up to see her. If she is in hospital it is restrictive access for visitors (rightly so) and if she is at home, she isn't having any visitors.

Today when i received the pack and information from the hospital re: Donorship, for me,  it became even more of a reality that she has ALL. Part of me felt  a sense of self satisfaction that i could potentially be part of her treatment plan albeit through my stem cells (If i can) but the other part of me feels upset.  Its like a mixture of emotions. The latter has been compounded with the fact that my partner when i told him appeared totally disinterested, lacked empathy or even any level of compassion for that matter. I am very angry with him that he appears totally disengaged. It has been my best friend that has been my rock supporting  me emotionally but i do feel let down my my very own partner that has provided no emotional support whatsoever. 

When I am at home, i weep silently and discreetly when i am feeling low even though i should feel comfortable seeking some element of solace and comfort from my partner. But there is no point when he appears unfazed. 

I will also be going through a journey for the donorship and this cancer journey with my sister and although i am extremely disappointed with my partner at least i have my best friend.

Sorry i felt i had to offload but thankyou for anyone that takes the time to read this.   

     

  • Hi

    Welcome to the ALL forum although of course sorry that your twin sister's diagnosis has brought you here. It is always a shock when a cancer diagnosis is given to someone you know and it must be so much more difficult as it is your twin sister. Hopefully you will come back as a positive match to be her donor but even if you don't they will already be searching the global register for a match elsewhere as well.

    Covid as you have said has made visiting much harder but I am sure your sister is appreciating your support even if it is from a distance. As you know with your nursing background cancer is indiscriminate and when I was diagnosed with ALL in 2012 I was told there are no reasons why someone's cells mutate.. its just what has happened. The good news is that Leukaemia is treatable and whilst the treatment for a stem cell transplant is tough, you can lead a relatively normal life afterwards. 

    Perhaps your partner feels that by not appearing worried and putting on a brave face that will support you. Have you tried talking to him about your worries and concerns?

    You can have a look at my profile by clicking HERE which shows you the journey I went through with ALL from diagnosis to stem cell transplant to recovery.

    I would also join the Stem cell transplants forum by clicking HERE where you will find lots of people going through a similar journey to your twin. Just click the link and then press the black + New button on the right hand side of the page.

    If you have any questions feel free to ask.

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Dear Paul,

    Thankyou for your reply and comments.

    I'm sorry that you had ALL too but it is very positive to read of your recovery. It brings an element of hope and optimisim. 

    I know when my sister was originally diagnosed she went through many turbulent  emotions. She still gets her down days but on a positive she has alot of good days too. Of course she has alot of support network at the hospital which I'm sure has helped her immensely. I cant thank her medical and nursing team enough.

    I have spoken a couple of times with her BMT Nurse Specialist who is lovely whilst   maintaining alot of positivity. 

    Her husband has been amazing. He is so devoted and provides her with so much support .I couldn't ask for a better brother - in - law.

    However I do find it a struggle with my own partner when he appears so desensitized or complacent with what's going on and how I am feeling. I guess we are polar opposites in terms of our psychological  traits ..Maybe because I have counselled patients,  I have a deeper level of emotional thinking than him thus I cannot understand why he doesn't display the emotional support that I would naturally do myself. 

    Like i said my best friend has been incredibly supportive. She has a great level of  understanding because she is a nurse but equally her  father is in hospital with lymphoma. Therefore we are going through the cancer journey together. She supports me and vice versa. We can cry, laugh and rant together on our good days and bad days so she definitely has maintained my sanity. 

    I have joined the stem cell group so thankyou for providing me with the link. 

    Also again, thankyou for your reply. It was much appreciated. 

    'Doris' 

    I

  • Hi Doris

    Glad I could bring some hope to your day.

    If you have any questions or just want to have a chat feel free to post or message me.

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.