Effects of cancer diagnosis and relationships

Hi Pinkbluepurple, sorry to hear how you are feeling and about your Dad but if it's any comfort I completely empathise with the feeling of no one around me really understanding (apart from my daughter). I too feel like family expect me to be back to how I was before cancer and I am so far from that both physically and more importantly mentally. I don't think unless you live with cancer that you'll ever really understand, that's why these forums are so important. I'm not surprised it's put a strain on your relationship with your partner, I've actually been glad (for once!) that I'm single so I can just spend what little energy I have on getting myself through it. I confess I see less of my family now so I don't feel the need to put on a front, which is exhausting. You filter down the ones who really care.

With regards to your Endo though that's shocking. Drink more water? How insulting. I would seek a referral to a different one. It's not easy but I've pushed and now see one who listens and has prescribed T3 (Liothyronine) aswell as the Thyroxine and I feel the "best" I've felt so far. By my best I mean I can now get through the work day and a dogwalk without that dragging fatigue feeling like you just want to shut down. (I used to run 10Ks so this is far removed from me before!) I think the added T3 has helped me mentally and with that I'm better equipped to deal with the above. I'm not saying it's the golden key but just that I feel better on it and have settled for that.

I think the key for me has been learning to accept those who havn't had cancer will not understand this and trying not to get sad or angry about that, overcoming guilt that I've become more insular from my family and anger/grief that I'm not who I was. 

Do you have a Maggie's centre near you? I found them really helpful. You can just walk in and talk to someone and unload to a person who's unconnected.

I wish you the best tackling this and even though I don't have answers, hope this has been a little help. It's not easy. X

Good morning 

I’m new to this forum , I just wanted say I get where your coming from . Unfortunately I to have meddularly cancer I’m 4 months post opp from second surgery this year . ATM I’m awake in pain . I’m fortune I now feel get support as under great team now but I’m beyond tired ! Weight gain and at times feel alone .

im learning to adapt and acceptance but it’s hard ! I’m lucky have support but I do feel alone with this , it’s like your navigating in the dark but at times we have the light  

How are you doing physically? Do you mind sharing where your at with the meddy world ?

it’s fairly rare , lot get your head round .

love to hear from you 

sending healing ️‍ 

Hi L orm,

welcome to the forum, sorry to hear you too have the rare Medullary variant too. It's good to connect with others with this it makes you feel less alone. I read your other post that you are suffering the strangling like me after your surgery!! Not found many others with it, It's absolutely awful. I don't think anyone but those few of us suffering this after effect can imagine what it's like to feel like you have someone's hands tight around your throat 24/7. 20 months on I do seem to have adapted to it somewhat, so thankfully it isn't constantly in my mind now but it has taken a long time. (Mine isn't lymphodaema).

I see you've had a second surgery, I'm sorry to hear that, was that for a reoccurrence? Was the strangling there from your first surgery?

I've written a kind of summary of what I've been through in my profile. Physically, I'm still battling chronic upper trapezius and shoulder pain for which I've tried literally every med/therapy/intervention you can think of.  I'm wearing a back brace now which supports the upper traps and gives a bit of relief and I'm chasing a lost orthopaedics referral!! But I'm beginning to realise this might just be permanent nerve damage.

Apart from that I'm generally okay and learning to accept my “new normal” as they call it. I don't like it, I used to be so fit and active but I'm just forcing myself to take life a lot slower now and trying to just find joy in small things like nature which I've always loved. My world has shrunk but I'm still here for my daughter and my calcitonin is low, so that's all good.

How about you? X

Thank you for your lovely reply ♥️

sorry for the delay in responding! 
the first time I’d heard of Maggie’s was a few months ago through a friend I met at another charity support group. And I was diagnosed in 2022. I’m not too sure where the closest Maggie’s centre would be but I’ll have a look into this, thank you. 

I feel like it’s been hard for me to wrap my head around my experience when you have professionals speak to you in that way and invalidate your feelings. It’s made me just want to rush in and out of appts with her as fast as possible as I don’t feel like I’m listened to or taken seriously. I mentioned it to my nurse and she said she’ll pass on feedback so I guess that’s something? 

hope you’re been doing okay as can be ️