Thread #6, living with incurable cancer, taking ALL the drugs, and remembering our fallen comrades

[SewingBees]

New thread!

Are you okay @EachandEveryone

Yes thanks they’ve put a dressing on it they’d never seen a pump like the one I have. They said I’m better off in London for my care. I don’t need telling twice😀 I just wish my family would understand that I can’t just drop everything and move home. They don’t even like me much!

Awe.. that’s sad to hear. Have the family always been like that with you?

Yes! Because I moved away got a career never had kids etc not that they would say that.

That’s your choice. Having kids isn’t the be all and end all of life. A career is important. I used to be a teacher. I quit when I got diagnosed with primary Breast cancer. I never returned and got far too many low paying jobs. I wish I’d persevered. My pension world be 4 times what it is now!

Hey how is everyone ? Im currently speaking to my health insurance people and seeing about ill health retirement, I decided to increase my critical illness cover about a year before my diagnosis and I really forgot about it to be honest, however it’s going to pay my salary until I retire if they agree to my retiring on ill health. There is no way I can do my job anymore. I’m sad about it but nothing to be done, I could do clinics forever but it’s not what I love so I need to have a really good think about it. Basically if I retire from the nhs now my critical illness cover will still cover my salary every month until reach retirement age at 68 which is 34 years away. I’m just not sure !

Have a good think @sellotapechicken
You are only 34? Can you do a different job? Particularly as you are having this curative surgery? Look at all your options I would.

I am 34. I am going to have to think about whether I want to do clinics forever which I know I could make a big difference to patient experience and explain things in more detail if all im doing is clinics and not rushing to get through clinic so I can see patient x in the oncology assessment unit who needs an urgent op for a bowel obstruction and patient y on ward z who needs to have a bigger op for palliative care or patient A who has woken up from the anaesthetic but we couldn’t proceed with the surgery because the cancer was far too advanced to continue so we just closed back up and now they’re waiting for me to come and have a chat about the outcome with the family and patient. I know if I don’t have the above to deal with then I’d have time to explain in detail what the plan is to my clinic patients but I am so used to the really intense pressure of the normal day in the nhs I think it will really take a while to change my outlook on things. There really is nothing like doing my job as a surgeon but equally I’m not sure I can’t work for the next 30+ years !

@sellotapechicken Can I advise that you don't rush into ill health retirement, especially as you have surgery coming up. Your access to critical illness cover sounds brilliant, but does it preclude you from ever working again? If you end up living for ages you might go mad without something to keep you active/give you purpose.

I looked into ill health retirement after my Stage 4 diagnosis, when I didn't know whether the drugs would stop tumour growth (currently they are). That was 18 months ago. If I had taken ill health retirement (though actually in hindsight I didn't meet my pension companies' criteria) I would be going spare (and broke) by now.

I'm also going to leave my daughter in a better financial position when I die if I stay in my job, even if my health deteriorates and I can't work, because my death in service benefit is substantial. And I won't have been drawing down my pensions through ill health. Death in service does depend a bit on your employer's attitude - mine keeps people with terminal illness 'on the books' so they get death in service when they die.

There are a lot of variables to consider, and how you feel now is not necessarily how you will feel a few months from now.

@sellotapechicken I agree with @SewingBees in there are a few variables, given your young age. It would be imperative that you make the right decision ( imo ). Once you’ve had surgery, you are cured, yes? Doesn’t that mean you can then get back to surgical work ( once recovered) or is that too much of a simplistic view to take? What I mean is, you have the opportunity of having this life changing, curative surgery, thus giving you a second chance. Fuck me, but we know leiomysarcoma is a beast. I would lose an arm to be rid of it!

Mate, you know your industry better than us, make it work for you 😊

On a side note, is it worth buying the Curaleaf pastilles? I’m tempted!!

I’m 58. so took the retire and return option and I hope to go one day. I took the money because I’m single and there was no point in wasting it. It’s only £1300 a month but with my pip it’s not too bad. Unfortunately I can’t claim any other benefits and I am breaking into the lump sum monthly. I need to over haul my finances. Work have said my job is still there and after three years nearly I’m very lucky. I guess they will always need nurses 😀

how is everyone ? I feel like I’m losing my actual mind. DH has had some symptoms for a few months and it’s looking like he might have cancer too. Incredible. It’s so overwhelming, I love him so much and we can’t tell anyone because he doesn’t want to tell his parents until we know exactly what cancer and what stage. Fuck me this is horrific

Oh crikey @sellotapechicken what kind of symptoms?? Has he had CT/biopsy/MRI?

He has had weight loss, no appetite, fatigue, widespread random hives, headache, vomiting, night sweats and an enlarged lymph node in armpit and neck. It’s looking like lymphoma but just waiting on biopsy results now. It’s just so unbelievably shite. Why us?

Okay, sit tight. They are scary symptoms, but not necessarily for cancer. What’s the next step? Biopsy results?

Thinking of you both x

Yeah biopsy results are next week. He’s being so brave about it, I know that I also have cancer but when it’s not you who is the patient oh my god it feels out of all control

Oh god @sellotapechicken , that's a horrific thought.

Well, dd's all moved in yesterday. We ended up with maccies for tea instead of something nice & a cocktail. I keep randomly leaking tears, it's so weird. I spoke to her as I was heading to bed last night & she was decorating her room/sorting her stuff to where she wants it. Not sure if she's met her flatmates yet, she was going out but couldn't be bothered in the rain 🤷‍♀️. She's off to buy another pair of pj's & more hangers today, and properly explore Wembley.

She needs to go to ikea it’s ten minutes away.

I have everything crossed for you husband @sellotapechicken

@sellotapechicken so sorry to hear about your husband, I hope the waiting time passes quickly x

I remember dropping DD down at uni two years ago @lucysmam I cried like a baby all the way home! Then I went into her bare room and cried again! It took me a week before I could go back in and strip the bed! 🙈 Tomorrow we do it again for final year. I will no doubt cry again! What is she studying?

@sellotapechicken a huge handhold for you and your husband 💕x

@EachandEveryone I'm staying over in 3 weeks so Ikea is on the cards then - she needs a clothes airer if nothing else.

@Enigma54 I cried and stripped the bed this morning 🙈. She's studying law - induction day tomorrow.

I thought she was doing music management 😀

Ooh, no, law was what she applied for starting this year. Her plan was a gap year & reapply for music management or similar...then she decided to stick with law & go this year. Sorry, that's me not being very clear!

She can do music law after which I think would be interesting.

Yes, I think it would too. Suppose we'll see.

She's been all over exploring today, has just spent £30 in primark on hangers, a cup and pj's & is hunting for a takeaway 🙈. Nowt like having grown up money 🤣