Going crackers!

[Enigma53]

As the title says.
Diagnosed with a second recurrence of a nasty leiomysarcoma cancer in November 24. On chemo to try and shrink; it’s not working. Endless scans, appointments, bloods and side effects from chemo and cancer. My life isn’t my own any longer. I’m chained to the bloody hospital. I can’t work. My SSP expires in a couple of months. Christ I’ve had enough. I’m tired and worn down. It’s aggressive as fuck and just won’t shrink down. My hair is gone, my mouth is sore and I’m becoming really bad tempered and envious of any seemingly healthy human being.

How does one even get out of bed each day with this?

So sorry for all you are going through, I know how much of an exhausting rollercoaster it is. There’s nothing I can say that will help in any way, but sending you a virtual hug

Thankyou @SoSadForPoorDH it is truly exhausting, you are right.

Must be awful hoping your treatment starts taking effect very soon xxx

@finespineline Thankyou
It’s truly awful.
No one wants to be forced to contemplate their death, no one.
It’s not on peoples radar, is it?
Normal healthy people, going about their daily business. It’s an utter utter pile of shit ☹️

And I’m bloody sick of reading “ most lumps, bumps, aches and pains, are NOT cancerous. Well mine IS and it’s rare to the point, treatment options are limited. Bloody bloody unfair ☹️

It does sound like a right pile of shit OP. I'm so sorry you're dealing with this.

It is spectacularly shit and very, very unfair. I'm really sorry it's happening to you. If your reason for getting out of bed was just to smash something in fury that would be justifiable. Life is fucking cruel sometimes.

I am so sorry OP, you are dealing with so much ❤️‍🩹

Thanks for allowing me to rant.
Maybe the next treatment will blast it, maybe. I hope so. I feel powerless and at the mercy of the medics, who are trying to deal with a rare cancer which has few treatment options. When I receive my next set of scan results, I will ask to be referred for a second opinion. I need to feel proactive and gain some tiny bit of control in this mess.

Hi Enigma

My heart went out to you as I read your post. I am also Stage 4 (NSC lung) - incurable - currently held at bay with Osimertinib; but I know this won't work forever (average is two years and I'm one year in already.) . I am 68, DH 85 with memory issues. We live miles from the nearest Oncology centre. The endless round of scans, blood tests, scrutiny, discussions, fear, are exhausting and the dread of them dogs my daily life, even the 'good' days.

Plus I never, ever, feel 'well'. Always nauseous, always have a headache. I've lost 2 stone and have no appetite. I've forgotten what 'feeling well' feels like, but I have to pretend I'm fine, for the sake of my DDs, one of whom has just had a baby and needs me desperately. I can't believe I seemed fit and normal just one year ago.

I'm just trying to say, I know how shit it is. I totally get it. I even resent poor old DH who complains about very minor things, occasional knee pain, and the like - I think 'well at least you got to 85 ffs.'!

But then as you mention SSP you must be even younger. Life has been very, very unfair to you. I'm so sorry. It's truly 'fucking shit', as per a PP.

Much love and hope your team come up with something to give you a chance.

@ApplesinmyPocket hello and I’m so very sorry you are in a similar situation; it is truly shit!!

The whole “ having to be strong”
resonates and I feel I’m crumbling with all the constant appointments, scans and as you say, the fear and the conversations remain brutal.

My kids are young adults, they need me. It’s so so unfair, but no amount of kicking and screaming is going to change things. I’m off sick from work, colleagues have long stopped contacting me ( I bet they are so glad isn’t them!!) I am bitter and feel angry. 4 cycles of fucking chemo which has taken my hair, destroyed my mouth and not to touched the sides of the cancer. WTAF??

I wish you well ,hugs and strength xxx

Thanks, Enigma. It's truly, truly shit. Of course your young adults need you, and that's the worst thing about this whole fuck-up, that we know people need us and will miss us desperately and there's not a thing about it we can do.

My vulnerable daughter has just had a baby (first grandchild) and I don't even want to think about how she'll manage without me, it's like staring into a black void of despair. In fact I don't think I actually do believe it. La-la-la and all that.

Warm best wishes and hopes for you to have some better days and get stronger again.

@ApplesinmyPocket It’s terrible I know. I am really feeling the reality of it all, hit me hard and as you say, there’s nothing we can do.

Every day is a mammoth task to get through. I so so hope and wish you get lots of time with your little grandchild and daughter; keep going as much as you can.

Thinking of you
🌼xxxx

Your kindness in that post made me cry a bit, @Enigma53 You get it, I get it. I wish neither of us had to. I mean a few days off would be nice, wouldn't it. Ha.

Well, I have a tiring and stressful oncology trip of horror first thing tomorrow - but then, three days of helping with baby. That'll get me through, I hope.

And I wish with my whole heart that you you will get a better day tomorrow, and some hope of a kinder future. xx (I know,not mumsnetty. But pah to that.)

@ApplesinmyPocket I hope today’s oncology horror, wasn’t too awful? I’ve been thinking of you.

Mine is next Tuesday ( assuming they haven’t found anything life threatening on last weeks CT scan!)

Enjoy lots of baby time ❤️

In the words of Churchill, “ If you’re going through hell, keep going”

xx

Hi @Enigma53 we have chatted before. I was diagnosed with metastatic leiomyosarcoma in September, 2023. I’m sorry to hear you’re going through a hard time. I’ve thought about you a lot xx

@Berlinlover Thankyou. How are you doing? X

I’m doing ok thanks @Enigma53 I’m in remission at the moment. I had a CT scan last Wednesday and will get the results in a few weeks. My biggest issue is tiredness, it’s relentless. What type of chemo are you on?

I’m glad you are in remission; that’s something I can only dream of I think.

I had 4 cycles of doxorubicin. It didn’t do a thing, nothing. I had a scan on 29th May. Results on Tuesday, which will be rubbish, given the pain I’ve been having. Ive had enough, really and truly. X

I’m sorry you’re in so much pain. I had six rounds of Doxorubicin last year a few months after my hysterectomy. I found the mouth ulcers very difficult to deal with, the pain was so intense.

Yes doxorubicin is tough. You did well to survive that. I’m guessing you are clear of leiomysarcoma right now? X

Yes @Enigma53 my scans have been clear so far but the oncologist has told me the cancer is very likely to return so it’s a constant worry.

@Berlinlover I really hope it stays away forever! X

Thank you @Enigma53 xx

Thank you so much, Enigma; I've been thinking of you too - every day, actually, as a fellow unlucky person going through this shit.. It's wretched that you feel so ill. I wish so much you could have some better days.

My oncology was a bit of a non-event this time, had a junior registrar (very nice) so I knew from the moment she walked in she wouldn't be handing out bad news, they send in the Big Guy for that) and bloods were ok (she said) so nothing much happened... except I've been booked in for a thorax scan, with contrast, for four weeks' time. I don't dread the scan any more (had so many, as have we all in this Hellfire Club) but I spend the next four weeks post-scan in terror. All the while pretending to everyone it's all fine, I'm fine. 6 months since my last scan, and I KNOW this drug is only a temporary check on my cancer and I know (god so many clichés we are forced into on this path) and I'm 'living on borrowed time' - and I feel so crap all the time with headaches and fighting not to be sick after tiny amounts of food, I can't believe something hasn't changed for the worse.

The baby, thank god, is the only light in my life at this time, and even that's terrible in a way as I hold him and love him desperately and know he won't remember me.

I so wish you could get a result on Tuesday that is at least somewhat hopeful, or reassuring, or.. just something to give you a little bit of hope. I'll be thinking of you. Oh god, surely they could at least get on top of your pain!!! it's not much to fucking ask is it??

love, Apples x