Living with blood cancer whilst LGBTQ+

Living with and after blood cancer
1

Hello folks, thought I’d start a thread for those of us that identify as LGBTQ+ who might like to share experiences of living with blood cancer.

It dawned on me that since my diagnosis with Polycythaemia vera (PV) last year and finding this amazing forum, I hadn’t noticed any other LGBTQ+ people commenting on here. Checking the forum, I note there are only about 8 comments mentioning LGBTQ+ themes!

Perhaps our lack of representation is because it’s just not been relevant to discussions, or maybe due to discomfort at outing ourselves and risking identity attacks on this public forum. I’ve personally never witnessed any homophobic or transphobic posts around the forum, and its moderation seems sturdy, hence why I’m sticking my neck out a little to see if anyone else LGBTQ+ is here. If you are, hey there, how are you?

Wouldn’t it be preferable if we could use terms like qu**r and genderqu*er here like in real life? As with people of colour, those who identify as LGBTQ+ are reclaiming terms that used to be thrown at us offensively, but the forum website automatically censors words listed somewhere as slurs. I think gay, lesbian, trans, and non-binary pass the auto-censor, let’s see!

Anyway, please feel free to share your experiences. Personally speaking, I’m pretty sure I was doomed to poor care from my first haematologist when I introduced my husband to him in the video call where I was being diagnosed, and the doctor then carelessly rushed through this life-changing news and prescribed me daily chemotherapy with terrifying potential side effects before never speaking to me again. No warnings about how the chemotherapy might pose potentially carcinogenic risks to sexual partners, despite mine sitting right there :thinking:

Can’t help but feel that the doctor’s personal issues around my sexuality affected how thorough his care was. Thankfully, after further unforced errors on his part, I asked my family doctor to refer me to a different haematologist, and I now have a lovely, holistic, and hella gay blood cancer specialist who slowed my treatment down to check other stuff first, like insomnia. Only a few months later, I’m now the closest I’ll get to being on “active monitoring” with a chronic blood cancer like Polycythaemia vera (PV), which to me is a massive success.

Looking forward to hearing from other LGBTQ+ folks experiencing blood cancer within healthcare systems that are run largely by straight and cisgender people :rainbow_flag::drop_of_blood::transgender_flag:

13 Likes
2

Hi @Duncan thanks for having the courage to start this thread and I am really glad you felt able to on our supportive forum.

6 Likes
3

Hi @Duncan.
I think it’s really great that you have started this thread. We often talk about the unrepresented groups and reasons they may find it difficult to be part of forums or to talk about a diagnosis.
I’m sorry you had such a bad experience with your initial doctor but really glad you took this further and now feel happy with your care.
I hope your post encourages others to be part of the forum. Thank you for sharing your experiences and encouraging others :blush:

7 Likes
8

Hi @Duncan

Thank you for starting this thread and I share Erica and Nichola75’s thoughts in that I’m so glad you felt able to do so on this forum. It is a safe space for everyone affected by blood cancer.

I’m also sorry that you had a difficult experience when you were first diagnosed, but equally glad you are happy with your care now. We know how important it is to feel you can share your feelings, experiences and feel totally comfortable asking questions. I believe you may have seen these personal stories on our website already, but I’m sharing them again here in case helpful for anyone else new to the forum or to this thread:

Stewart shares his experience: Seeking support as a queer person with blood cancer | Blood Cancer UK

Scott shares: What I’ve learnt as a gay man with blood cancer | Blood Cancer UK

In terms of language - thanks for highlighting that you haven’t been able to use those words on the forum. We agree that they aren’t offensive words in themselves and it’s important that they are being reclaimed by the LGBTQ+ community. We’re looking into this so you should be able to use them on the forum going forward.

Thanks again for being part of our Online Community and for reaching out to support others.

6 Likes
9

Hi, @Duncan! I would echo everyone else who has said how great it is that you have felt safe enough (for want of a better word) to be able to talk about this here. I’m also so sorry that you had such terrible treatment from your first haematologist. Just as well that you were strong enough to shed him from your life and find your current one, who is clearly not only a much better doctor, but also a much nicer human being!

It’s interesting that you found so few comments on the forum mentioning LGBTQ+ themes when you looked. Eight really is very few when you consider the extent of the forum, and I’m guessing that at least some of them were from you! It’s also interesting that the forum software automatically censors certain LGBTQ+ words that are listed elsewhere as slurs. From one perspective you can understand why, but in a world in which people are increasingly reclaiming terms that used to be used offensively against them, surely the time has come to move on from that, despite what I’m sure were originally good intentions.

I hope other LGBTQ+ people here will feel confident enough or comfortable enough to talk about this. Given the generally accepted percentage of people who are not straight, there must be lots of people on the forum who identify as other than straight and who would have an interesting contribution to make to this thread. It’s shocking that someone’s sexuality should affect the healthcare that they receive because of the way that their doctors view them, but - as you have shown - it happens, and it’s healthy (pun only partially intended!) that discussion of this sort of thing should be out in the open.

6 Likes
10

Oh my, I go away from reliable phone signal for a couple of days and return to so many responses! Kind of feel pleasantly unsurprised and am glad to have shared, thank you. Now where are my fellow queer and genderqueer blood cancer survivors?!

Thank you dear @Erica and @Nichola75, I certainly didn’t feel courageous starting the thread but I’ll take that compliment :hugs: It did seem odd that there’s so many members of the forum and yet barely any mention of LGBTQ+ folks. Hopefully this’ll open up the forum a little to the 10 % or so of us who aren’t straight and cisgender, like @JanetF so thoughtfully acknowledges. We’re everywhere so let’s take up our space—while we know there’ll likely be all sorts of outdated nonsense spouted anyway. Thank you too @Ali_BloodCancerUK for looking into adding those terms to the forum, I feel seen by you and so glad that we’ll have more language available now.

To be honest, I feel kind of anonymous on here and so the potential for old-fashioned attacks would just make it easier to know who to avoid/report. Our sexualities and gender identities are natural extensions of ourselves, after all, and not something we choose. I’m sure no straight person thinks they chose to be that way. Those who attack others for random quirks of nature just show off their biases and blind spots, I’d say.

Perhaps those who aren’t queer or genderqueer and/or those who seem angered by our existence might like to leave this thread alone for folks who want to talk freely about our actual lived experiences? If we make you so angry, take it elsewhere as clearly this thread is not for you. If, however, you’d like to enter into civil discourse because you don’t get it or want to respectfully ask an actual queer/genderqueer person stuff then I’m sure there’s space for that.

Real life can already be a drain from all the micro- and passive-aggressive discrimination and outright bigotry. Added to surviving blood cancer, it can feel a bit much when even the quality of our healthcare is conditional on how open-minded our doctors are.

It was my lovely family doctor that originally referred me to my rubbish first haematologist who then encouraged me to change after I mentioned his blasé treatment. Another of my family doctor’s patients with blood cancer was also seeing my first haematologist and had to change… due to his homophobia. So I wasn’t alone in receiving inadequate care. I’m very aware of the privilege I had in having the option to change, and that there was even another haematologist to be referred to, and wish everyone had these choices.

So I feel protected by my family doctor (another person with minority identities, for what it’s worth) and now I’m safely under the care of my queer haematologist. Thankfully haven’t noticed any other discrimination from the various phlebotomists and other specialists I’ve met, and actually I’ve been getting to know one nurse during my treatments whose child is gay and she asks my advice! Very sweet :smiling_face_with_three_hearts:

If only everyone here had doctors who heard their needs and helped to bring them to fruition, it makes so much difference. Not having to hide parts of ourselves nor code-switching to make straight people feel comfortable means we can keep more energy for living with these dratted blood cancers!

Anyway, I’ve gone on again. Thanks for reading, hopefully this’ll open up over time and others will find it a safe space. I’m looking forward to hearing more from others receiving blood cancer treatment whilst LGBTQ+ :wave:t3:

3 Likes
11

I appreciate you starting this thread. It’s important to have a space for diverse voices and experiences, especially when dealing with something as challenging as blood cancer. Your story about finding a supportive specialist is inspiring

4 Likes
12

Thanks @Abaziz0786, nice to hear from you again. I’m glad to have been inspiring! It’s definitely a challenge to juggle so much and I feel very fortunate to have support from my doctors, loved ones, and here on this amazing forum.

May I ask how you’re getting on with your own blood cancer challenges? I hope you and your wife are doing well.

3 Likes
13

Hello @clickinhistory, nice to see you post again. I hope you’re doing better than you have been recently.

Your username says you’ve “left the building”?! I hope it doesn’t mean you commented and then left the forum altogether as it’s hard to have dialogue when only one person is present. I saw another comment of yours on an older thread which seems to be responding to what I wrote above, but correct me if I’m wrong.

I’m pretty tired so forgive me if I’ve read your comments differently to how you intended them. I’m unsure how your comment about (white?) straight British men being discriminated against relates to me reaching out to other LGBTQ+ folks here. I’ll come back to respond when I’ve got some spare energy.

1 Like
14

Thanks for starting the thread @Duncan and so sorry to see you had a difficult time to begin with. I’m very fortunate in that to date I’ve never felt any discrimination in relation to my sexuality (from a healthcare POV, that is) and long may that continue.

In fact, the only time I can think it was even a factor was pre-diagnosis when a locum GP was trying to get to the bottom of my symptoms and suggested an HIV test when he realised my sexuality. Poor fella said it in such a way that I think he feared I’d be offended he’d suggested it! I already knew my status, but as I said to him at the time, “test me for everything, I just know there’s something going on somewhere”! Little did I know where those blood tests were going to lead.

4 Likes
15

Hey there @CosmicHobo, glad you found this! I’ve seen some of your posts elsewhere around the forum so it’s nice to share comments here.

I’m so glad you haven’t experienced discrimination in healthcare, it’s good to know that your care has come first. Have to say, that’s usually been the case for me too, or my sexuality didn’t come up in relation to whatever care I’ve received. I know what you mean about being coyly asked by doctors about STI testing status :joy:

My current doctor is kind of the opposite and very pro-sexual health transparency with my various test results all accessible online, and I’m of the age where I’m being sent colon cancer tests every birthday, so there’s no avoiding it all now! Long gone are the days when LGBTQ+ folks only had back street health clinics at a specific time once per week to get handwritten test results because—perish the thought—we couldn’t be open with our GPs about practicing safe sex and so on!

Kind of ironic to me that now we’re all finally allowed to donate blood, but I still can’t due to the chemo in mine!

4 Likes
16

Sharing this due to uncanny relevance:

2 Likes