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?

@Berlinlover I'm so glad you're currently in remission and I hope it lasts and lasts - but I know that in no way takes away the worry and the stress and the CHANGES it's brought to your life. You've really been through it. I hope your scan result takes away at least some of the immediate torture..

And yes, it's just exhausting. All of it.

Thank you for your kind words @ApplesinmyPocket xx

Hi @Enigma53 how are you feeling now?

@Berlinlover hey, I’m hanging on in there. Start my new chemo on Wednesday. Please let it work
How are you?
@ApplesinmyPockethow are you doing?

Hi @Enigma53 and @Berlinlover and anyone affected by the issues we're going through..

I have my Curaleaf Zoom appointment on the 17th...this is proving hard to explain to my family, who take a keen (MUCH TOO KEEN) interest in my medical issues (mostly, genuinely very helpfully!) and I know they aren't going to be keen on the 'cannabis' word, even medical cannabis. So for now I'm not coming quite clean on it.

Otherwise, still struggling on with nausea, lack of appetite, 'feeling unwell' and so on, and almost (I say 'almost') looking forward to my CT scan with contrast this coming Friday...I mean, if it's good news about 'progression' then I know I'm ''just' suffering with anxiety and general cancer debilitation and I just have to suck it up, and if it's BAD news, I can stop pretending to be OK and fine and able to do the things everyone expects me to do and just give way to the march of events.

Not a great choice is it!

I can't tell you how much comfort it gives me to find you people also struggling with the same sort of stuff.... as one feels so alone at times... and yet I wish you all didn't have to, and hope you are doing as OK as possible.

PS this horrible oppressive heat doesn't help.

and I am hoping SO hard your new chemo has some positive results, @Enigma53 It does happen, so why not to you. Giving you the gentlest of hugs xx

@ApplesinmyPocket thanks for the positive thoughts, they mean ALOT right now, believe you me! Something HAS to work, surely??

The cannabis talk is a tricky one. Lots of associations around it I suppose and different peoples interpretations. You can all but give it a go, nothing to lose
( other than money!) Plenty do use it for different reasons, so it’s not something totally off the radar!

Our choices are never great, but somehow we have to keep plodding on. The scan letters keep arriving in the post, the blood tests, the appointments, the consultant appointments… bloody hell, what a life!

I hope Fridays scan goes well @ApplesinmyPocket keep us posted 🤞

Hi @Enigma53 and @ApplesinmyPocket I got the results of my latest scan a few days ago and thankfully the results are clear. I’m hoping to go back to work part time next month and I’m very anxious about it. I work in a large supermarket and therefore deal with the public. I have been out of work two years this month and have changed so much as a person. I look terrible with short hair but inside I’ve changed too. My next scan is the end of August/early September.

@Enigma53 I hope the new chemo works well and that you’re doing ok.

@ApplesinmyPocket Good luck with your scan on Friday.

@Berlinlover I totally understand what you mean about being a changed person. I too have changed hugely in only 4 months. One failed chemo, being in pain, the fear of the unknown, not sleeping well.. yeah I’m in no way the on the same page as my colleagues.

@Berlinlover I wish you all the best with returning to work, it’s a huge step. Keep in touch and excellent scan news. Long may it last.

@ApplesinmyPocket and @Berlinlover how are you doing?

Ive just had my first cycle of gemcitabine and docetaxol. God I hope it works. My MH has been crap since I found out an online friend is on symptom manage only ( all treatments failed) 😞 It’s very scary.

Hi @Enigma53 I’m doing well thanks. I’m on holiday at the moment. I try to go away as much as I can because I never know when the cancer may return and I’d be unable to go anywhere.

I hope the new treatment isn’t making you very sick, I found the nausea very tough in the beginning until I found an anti nausea pill that actually worked. I know what you mean about this cancer being so scary, even though I’m in remission I’m fully expecting it to return so it has completely changed my outlook on life.

Enjoy your holiday @Berlinlover hope Its somewhere nice and relaxing.

I sincerely hope you remain cancer free, the thought of going through it again, must be frightening.

In taking ondansetron for sickness. It causes constipation though! Great eh?

Thank you @Enigma53 I’m in Madeira, it’s beautiful here.

I take ondansetron daily as one of my tablets makes me nauseous so I find it helps. I had a stoma reversal last October and I’ve had bowel issues ever since. I find magnesium and lactulose very helpful for constipation.

Hello @Enigma53 and @Berlinlover

Berlinlover, totally agree about getting away on holiday as often as you can. My cousin was diagnosed with BC in her 30s (when she had two pre-teen girls) and has travelled several times a year ever since, making hay and all that. Her cancer has never reoccurred and she's 60s now like me, but she says she's never been free of The Fear and I know she's haunted by every little twinge, every passing thought, every day. Sigh

"Our choices are never great, but somehow we have to keep plodding on. The scan letters keep arriving in the post, the blood tests, the appointments, the consultant appointments…"

That's exactly it, Enigma. It never stops. Just never. My phone rang twice this morning and I was so sure it was the hospital ringing with bad news about my scan, my heart was pounding so hard (bloody spam). And I dread the post coming every day! (Scan was ok. They're always very nice there. But it's the waiting afterwards, isn't it.)

I wish I prayed (I have no belief, often wish I had) but I'm sending all my love and good wishes and hopes for your gemcitabine and docetaxol giving you some better times. Poor Enigma, in the midst of all you're going through, you've still been so kind to me. ❤

Oh, I had my Curaleaf appointment this morning! It went fine. They want me to email my oncologists to inform them I'm considering it and ask if they have any comments. I'm not going to rush to do that. It sounds crazy (well I'm not quite sane any more I'm sure) but I DON'T want any contact with the oncs before my scheduled call on July 29th, in case they say 'oh by the way, your scan...' But hopefully can get that sorted in a couple of weeks. Although it's obviously going to cost a fortune. But who cares, right?

Berlinlover, I was prescribed Ondansetron but I didn't find it helped much with my nausea. I'm glad it helps with yours.

Love to all of us on this horrible journey. Hope Madeira is lovely, BL!

Hi again @ApplesinmyPocket and @Berlinlover

I have never been to Madeira, but myself and partner were only saying this am, the furthest we’ve been, since this whole saga re ignited in December 2024, is Pizza Express! How sad is that. We can’t plan anything.

Definitely take as many holidays as you can. Are you off all treatment now? I will get the movicol out tonight I suppose.
When do you return to work?

@ApplesinmyPocket I was going to ask you about your Curaleaf appt. I think you are wise to hold off any conversations, until you’ve had your scan results. As you say, the scan is the easy bit, it’s what comes next that’s hard! I don’t have a belief or faith, but I REALLY hope it’s good news on the 29th 🤞🤞🤞🤞🤞🤞 How’s the little baby coping in the heat @ApplesinmyPocket?

As for me, it’s one day at a time. I’ve been off work since end of February. No idea what the future lies to be honest
( well do any of us??) Let’s hope chemo 2, does something!!

Love to all ❤️

Hi everyone.

im sorry you are all going through a difficult time too. I have recently been diagnosed with a soft tissue sarcoma and have begun radiation treatment. I’ll have surgery to come and possible chemo afterwards. It’s a mine field navigating all the appointments and information, trying not to Google and living in fear while normal life goes on around me.

not sure why I posted I guess I’m just saying “me too” 😔

sending everyone strength and love x

@brbg2g welcome to our little group. I’m sorry you find yourself here. Where is your sarcoma ( if you don’t mind me asking?) Mine is in the left pelvis. The damm thing won’t shrink.

Good luck with your treatment and surgery xxxx

Hi @Enigma53no I don’t mind.
it’s in my right calf, the thing is absolutely huge.
its a Myxoid liposarcoma which apparently tend to respond quite well to radiotherapy and chemo so here’s hoping.
im worried about mobility and recovery after. I’m young, only 33 and have 3 young children.

sorry you have this awful thing too. Did they find it in your pelvis in a scan or is that where it started? I’ve been told I may have recurrence in the same place or it could spread to lungs. There’s some lung nodules they are keeping an eye on at the moment but they don’t meet the margins for worrying at the moment. So that’s another worry but I’ll be having regular scans and hopefully anything is picked up quickly. how has your experience of treatment been so far? Do you have support? X

Hello, @brbg2g I'm so sorry you're going through this. I hope the treatment sorts you out. It's really, really unfair you have it so young, just so unfair. But there's hope. As I said above, my cousin had cancer in her 30s, gruelling treatment but not recurred in 30 years, so I've got everything crossed they can do the same for you.

@Enigma53 , aww the baby.... is what gives me a reason to grimly keep going, but also a cause of despair... i'm buying things for him up to the age of 3, knowing I most likely won't be here to give them to him, and he'll never remember me. But actually looking after him in the moment is wonderful and I mostly forget feeling ill and I'm so grateful to everyone who's kept me alive for this extra time, despite the dire prognosis at the outset. We are keeping him cool, yes... I had a huge paddling pool (bargain Argos pirate ship thing) delivered here today, which we can try him in at the weekend, though he can't sit up yet so we'll need to be in there with him!

I feel bad sometimes, always moaning, when you and brbg2g are both so much younger, and with dependent young adults/small children. But I KNOW my daughter, who is adult but fragile and needs a lot of support, needs me around to help with this baby for as long as possible.

Whatever age you are when this horrible thing strikes, you resent the next generation up who escaped and are living on into their 80s/90s... Esther Rantzen has the same cancer as I do, and I'm thinking, 'yeah but at least you got to 84...' !

@Enigma53 Yes, I’m off all treatment now. I finished chemo in June, 2024. I had a stoma reversal last October and ended up back in hospital in November, December and January with bowel infections. I get a CT scan every three months. I’ll be getting scan results next Thursday and if those results are clear I hope to return to work next month.

@ApplesinmyPocket Yes, Madeira is lovely thanks. The weather never gets too hot here which suits me fine. It’s lovely that you have your grandson to keep you distracted during all this.

Hi @brbg2g sorry to hear about your diagnosis. I was diagnosed with metastatic leiomyosarcoma in September, 2023. It started in a fibroid in my womb and spread to my peritoneum. I had six rounds of doxorubicin chemo and am currently in remission.

Hi @Enigma53 I’ve thought about you a lot over the past few months. As I predicted after being in remission for 18 months the leiomyosarcoma has returned. I was told on 18 December that there are nodules in both my lungs and peritoneum. At the moment they are smaller than 1cm. My team want to wait until my next scan in early March to see if they grow. It’s all so disappointing but not surprising. I returned to work in August and work four hours a day.

Hi @Berlinlover
this post popped back up for me because I’d posted on it last summer. Just saw your update so I just wanted to say I’m so sorry to hear that. It is really disheartening especially with a watch and wait approach, it will feel like it’s hanging over you.

I realise I never updated again after my last post pre surgery but thankfully the surgery went well in September and I am back to almost normal mobility wise. I have 3 monthly scans at the moment and next is end of this month which I am dreading too. You just never know. Sarcoma is a bastard. I know it’s going to reappear and it’s just a case of when.

sending love to you as you process your news. X

@BerlinloverI am so sorry to
read your update. Sadly, like you I am not surprised either. Mine was in my uterus and after removal in November 2023, it was back by August 2024. I have been on chemo for most of 2024 and probably this year too. It’s an unbelievably horrid cancer and I’m so so sad it’s me ( and you) that it’s decided to attack. I’m on pain killers now as it’s squashing most of my adjacent organs. I’m petrified! Scan results next week( which I know will be bad).

I really hope that the nodules don’t grow @Berlinlover you must be feeling very anxious right now.

All best wishes.

Thank you @brbg2g I’m glad to hear your surgery went well. Wishing you all the best with your scan, as you say this is a horrible cancer.