Friends after diagnosis

Hi,

I’ve been recently diagnosed with Acute myeloid leukaemia (AML) after years of Chronic myelomonocytic leukaemia (CMML).

I start chemotherapy next week.

I’ve found that friends I thought were true friends, those who would be there no matter what have taken a huge step back. Has anyone else experienced this?

Fortunately I do have friends that are absolutely amazing. But it hurts that some have backed off with no communication.

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Hi Robyn

Welcome to a super supportive and safe space. I am sorry to learn of your Acute myeloid leukaemia (AML) diagnosis and send you lots of positive energy for your treatment.

Aren’t people ‘funny’? My daughter was diagnosed with Acute myeloid leukaemia (AML) last year at 20 years old. The same thing happened to her/us. To give another perspective I think some of her friends were frightened, didn’t know what to say and the longer they left it the harder it became to reach out.

That said, new and very special friends entered her/our life. Including some of the super community members from this forum. A positive thing to come out of all of it is that we found who her/our true friends are. As a result we are closer to a smaller group of ‘friends’ who hold a special place in our hearts.

So, stay strong and value those who are there for you. Do keep posting and let us know how you get on.

Sending positive energy your way

Sarah xx

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Hi Sarah,

It must be so hard for you, being a Mum you hurt double for your children. Your daughter is far too young and I will pray for her remission.

Thank you for your reply, I can understand how it can be hard for some friends, I’m just surprised by my closest friend, she has totally backed off after promising to be here for me. On the other hand I’m happily surprised by those who are here for me.

Is your daughter having chemotherapy?

I’ll let you know how the chemo goes.

Love and strength
Robyn x

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Hi there
Yes I have had this experience and that’s ok. Some people cannot cope with us being ill don’t know what to say and find it easier to avoid us.
Then some amazing people walk into our lives and make this new journey bearable

We cannot change people’s reactions we can only change our reactions to them

We all react in different ways and that’s ok.

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Hi @Robyn I reiterate @SarahMum and @2DB responses.
Yes, I have found the same and I think nobody has a manual of how to be or what to say.
Others appeared scared, and it felt to me as if I was contagious and that really hurt.
When I was diagnosed I suddenly went from being ‘Erica’ to being seen as ‘Erica, with Leukaemia’ and that took quite a while to wear off.
What really hurt me was my boss, I had worked for this department for 15 yrs and never had a day off sick. He wanted to see proof of all correspondence from the hospital if I had a blood test (first thing in the morning) or hospital appointment (which meant popping out from work).
Whereas my friend managed to take all her paid sickness leave every year with colds and was never questioned.
Yes, I have lost some friends over the years, but I have gained some brilliant friends and people I am honoured to think of as friends on our forum.
To be honest I have chosen not to stay friends with some people that were draining me or I just was not enjoying their company. Also I learnt to say ‘NO’ and gave up some commitments that I was not enjoying.
I am now friends with some people now who do not know that I have Chronic lymphocytic leukaemia (CLL).
My husband just has his head in the sand and has never mentioned it in 20 years which really hurts too.
Yes, I think my emotions were very near to the surface when I was first diagnosed, but it really hurt.
Thanks so much for raising this subject, I needed to get that off my chest!!!

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Hi,

Yes, I found that at first everyone was very supportive but nearly a year into diagnosis now and lots of people I thought were friends have stopped contact due to me not being able to come out as much. Sad but at least it weeds out the fake ones. I’m sorry you have experienced this though

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Hi Robyn
So sorry to hear your Chronic myelomonocytic leukaemia (CMML) has been diagnosed has Acute myeloid leukaemia (AML). I know that is a strong possibility. I really hope you respond well to treatment. It must have been devastating news. I myself had a worrying few days, GP and receptionist were excellent,sent me off for a emergency blood test
and luckily bloods still stable. Seems just a bug I picked up. Strangely I was reading my results and the word PROBABLY Chronic myelomonocytic leukaemia (CMML) keeps popping up. Sometimes I’m to scared to ask questions,
Anyway at least you know everyone on the forum is rooting for you. I’ve been told we are all unique and could respond very well to chemotherapy. So keep positive.
Very best wishes
Unclejack.

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We have certainly experienced this. With family and friends. Some we probably could have anticipated but some were a shock. We will never forget those people who have made effort for us and our children.

Part of me also wonders if sometimes people don’t really get it but aren’t being difficult or nasty… If you haven’t experienced cancer or similar life changing events perhaps you don’t fully comprehend what people such as those of us on this forum are going through.

Lots of hugs to you.

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Sh has had chemotherapy. Her chemo mix sounds a little like yours. She also had some horrible reactions to chemo. I look at it like recognising how strong your body is in reacting to the chemicals being put in. But, it is what is needed to support you in trying to get rid of the cancer. So, try to listen to your body. Rest and sleep when needed. Try to eat a little when you can. Keep fluid levels up and be kind to yourself :two_hearts:

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Nearly all my friends have vanished on me. When I put it out there publically which wasn’t until and of round one, I had lots of omg messages and no follow up on them.
My best friend barely messages me at all, in fact I do most of the initial contact. I have one friend I can rely on and I feel very alone now.
It’s so hard and I understand people don’t know what to say and really don’t have any understanding of what I’m going though, sometimes o want to scream and tell them but other times I reside to the fact that I’m very much on my own through this apart from my partner.

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And all of us. :blush:. The support and strength I have found in this forum is amazing :star_struck:

I stopped initiating contact with those who went ‘radio silent’ on me. It made me feel better about myself and stronger. But we all have to find our own way through this.

You look beautiful in your photo btw :blush:. Stay strong and be kind to yourself.

Keep us posted

Sarah

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Hi @Tara i feel for you, it is tough and really hurts.
You always have your forum, we really understand and having read this thread you will know you are not the only one.
The Blood Cancer UK support line is also there for you on 0808 2080 888, please do keep posting

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Hey there @Robyn, I’m so sorry to read of your recent re-diagnosis. I imagine the previous diagnosis was difficult enough, but for it to now be acute is harsh. I wonder, were you aware that the Chronic myelomonocytic leukaemia (CMML) might transform? I’m sorry you’re experiencing this. I’m keeping my fingers crossed that the chemotherapy will be as comfortable as possible for you and do its job.

While I have a different blood cancer, Polycythaemia vera (PV), I really empathise with the sense of space you’re experiencing between friends and yourself. I’ve lost touch with friends and even family due to their issues around my cancer. Like you, some of those losses were a real surprise. For me these losses can feel like bereavements as their disappearance has been so absolute, like they’re the ones who’ve died!

I just wanted to say to you and @Tara and others that I really feel for you and your losses. Perhaps, like I’ve been reassuring myself, these people may not be able to deal with their personal reactions to our illnesses and it was easier for them to just cut us off. Maybe they’ll come back to us. And maybe not. But try not to think of it as something we’ve done wrong—it is, after all, they who have vanished. I keep space for them should they be able to get beyond their issues around loss and cancer, but it gives me greater space to tend to my own needs. Looking after ourselves, our self-care, is essential. We’re the ones living and coping with these bloody cancers!

So I’d say having loved ones around who do care and look after us in their own ways is better than having flaky folks half-heartedly bothering, if at all. We’re all mortal beings and so there’s a lot to learn from folks like us who are learning to live in that weird liminal space that’s just that little bit more in tune with not being alive. If our loved ones can’t be there for us now then they may never be able to, which is their loss! Meanwhile we’ll keep on carrying on, right?!

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