Hi,
I have a half-sister and we both inherited Multiple Endocrine Neoplasia Type 1 (MEN1). I have just had my gene test results and am waiting to have the preliminary tests. My sister had her results two years ago and was sadly diagnosed with cancer. Her tumours are slow growing, she is having treatment and is stable, which I am very pleased about.
Since we found out about the gene running in the family, and her diagnosis, our relationship has turned sour. I often wonder if she is lashing out from anger or resentment because of her cancer or if it's about the fact that I have been told I too have the gene and she is worried that all the attention she has had over the last two years may not be solely on her.
We live far apart and only communicate via Facebook or text. My sister and I are each other's only close blood relatives because we were adopted together by a single mother (whom I will call mum and family means adoptive family) who already had four grown up children. Mum always favoured me above my sister so her biological children favoured my sister above me, triggering a rivalry. My sister is very hard to get on with and is argumentative, but I feel we should be close. The fact that she is my only blood relative, as well as having the same gene, makes me feel like we should have each other's backs and support each other.
When she received the results of her gene test two years ago, things went bad. She did not tell me the results - I asked her one day if she had taken the test (as she did not tell me she was going to have it done). She had already had the test, received the results and scans, confirmed she had pancreatic tumours. I was a little upset that she had not told me she was even going to have the gene test, let alone got that far down the road she already found out about tumours but not overly bothered and was more concerned for her health.
When we found out about the MEN1 gene a couple of years before, my sister was already symptomatic so it was almost certain before she had the test that her result would be positive - however, we aren't doctors so we could not be sure until we had tests.
My sister was adamant I would not have the gene because she thought that the gene skips siblings in a ‘yes, no, yes, no’ order and if she had it, I wouldn’t. I explained that genes do not work this way but my sister was adamant she was right, as the pattern in our biological family did have a ‘yes, no’ pattern. However, this was just coincidence. She held on to this belief for years and not even scientific proof would persuade her otherwise.
I put off having the test for a long time because I was scared. When she found out about her pancreatic tumours, she only told me because I asked about progress – she never volunteered this information. She had a biopsy waited for the results.
When she received the results, she did not tell me. She announced it on Facebook. But we were not friends on Facebook because we had fallen out. My wife and my sister were still friends and this was how I found out. My sister had received the results that very day. I called her and after saying I was sorry to hear it, I said I was hurt she did not tell me herself.
She shouted down the phone, saying I should have called her for the results. I did not know on which date she would receive the results! Plus, she posted them as soon as she found out, so she would not have given me much opportunity to find out the results if I had known the date.
Surely, the person who receives the diagnosis should let their family know and not hold off telling them and wait for family members to contact them for the results. Not only this, isn’t it best to personally tell your family before putting it on places like Facebook?
She put the phone down and messaged me saying how dare I speak to her like that and next time she will never talk to me again.
Shortly after, I went to my GP to get the test myself. I messaged my sister to say I was having the test and she asked me why – I just said I needed to know. She again told me that I wouldn’t have it. I reiterated that genetics do not work this way – the chances are random. She then called me and shouted down the phone it was nonsense for me to have the test. I explained again it does not work like this. It was at this point she accused me of throwing the news of her gene in her face, as I had waited so long to have the test and could have used her results to help me get mine. I said this was not the case and I was just scared. My sister then said, once I got the news that I did not have it “you’re going to apologise to me”. I advised I would not.
Eventually, I was referred to the hospital for the test. We had another text argument where she was telling me how wrong I was about certain things, using "Ha" as if she was tripping me up. This seemed like point scoring.
The day I received the results, I called her. Her reaction was “oh”. Just “oh.” I didn't gloat about this proving her belief wrong but she seemed more disappointed in being wrong than about me having the same gene and potentially having to go through the same thing as her. She could not speak as she was in a shop so the call ended. We then started messaging each other.
She told me that I had to be prepared for gruelling, painful, agonising tests, operations all the time, lumps growing here, there and everywhere and I would also have toilet accidents.
Also, I am a youtuber and she asked me not to vlog or write a blog about the gene, tests, results, etc. I asked why as I won’t mention her. She just asked me again not to do it. I told her I would do what I want – many people vlog and blog about health issues as it helps them. She said fine but I had to be prepared for her comments on it. I assured her that I would not mention her and I did not need her permission to talk about it publicly. She said I knew nothing as I had not lived it. She asked me again not to vlog and if I did I would be on my own.
She ended the conversation and then blocked me on Messenger.
Soon, I heard from our mum that my sister had been in hospital but was now out. Once again, I had not found out from my sister. I was upset that she was again going through stuff and not telling me. I just texted her and asked how she was and she told me.
I found a support group for MEN1 sufferers and joined it and mentioned this to my sister.
She asked why I had joined so I said it was for support. I also told her that I had been offered counselling as I suffer from anxiety and stress and the news of the gene exacerbated it.
My sister asked why would I need counselling. I told her why but she replied that there was no point and I just had to get on with it.
Not a single word of support or reassurance but instead she was projecting her views on to me, telling what to do and how to cope. It was not her place to say I did not need counselling.
Then, I saw my sister hadd joined the support group, found my post and put an angry face reaction on it. She then messaged me and said what the people commenting had told me was what she had already told me - not the case.
I feel that my sister was trying to score points and tried to put herself in an elevated position of being 'wiser' and the 'mentor' but going about it in a horrible way. A couple of days later, the admins removed the angry face from the post. I also found out that my sister had been a member of that group for 18 months already – she questioned why I had joined it but was already a member herself.
A few years ago, I had a skin tag removed but didn’t tell her because it was nothing – just a skin tag. However, when I asked why she did not tell me about her cancer herself, she threw the skin tag matter at me. She held other of her cancer matters from me, such as that she found out about a secondary liver tumour. Not only has she been nasty, she has been hypocritical.
Both the family and now even our mum are supporting my sister – they keep telling me to try to get on with her and understand her. It’s so hard when she is saying these things to me and blocking me, withholding information from me and saying she posted it on Facebook because I had not called her for the results. For her to say she will disown me if I make a vlog, this hurt. But I won’t let her dictate how I cope with my medical journey and I will be making video diaries on my hospital visits, tests, results and treatments. Above all, doing this can raise awareness and increase charity donations. I may even do cancer support live streams.
I spoke to a friend recently who had cancer some years ago and, like my family, she told me I should just be more understanding.
Whilst I am talking about my sister here on this forum, I won’t be saying anything about her on my vlogs. I wouldn’t reveal anything about her anyway, even if she had not told me not to do it.
Please could someone tell me if they can relate to this? Am I being too harsh on my sister? Should I just walk on eggshells around her and let her be like this with me?
