Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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@mowly77 I'm so sorry to read your update. I'm stage 3c and incurable, realistically one scan away from being stage 4. I think you're being very sensitive to think of others but this thread is for everyone, you're not derailing. I'm very happy to come over to a new thread with you Xxx.

It’s not been a whole lot of fun, but it’s doable and not as bad as I feared. You asked about weight gain - I’ve lost a bit of weight overall, due mainly to heartburn (forgot to say about that, sorry! Although I don’t think it’s a very common side effect) which I get for a few days each cycle and makes me want to eat less.

@mowly77 please don't feel out of place - it's truly a shit hand we've all been dealt & you're not derailing anything imo.

Mowly You are of course most welcome here but if you would find it helpful to have a stage 4 thread or your own thread then please do that. I think there are others at stage 4 who at least check in.

You definitely need a chemo cat LucysMam though don't believe anything a child says they will do to care for it and assume you will do the lot and it's a bonus if they actually do anything. Mine was going to brush Floof everyday, she did that maybe once. But Floof was amazing for her and really helped her through her gcses in my chemo. And he is wonderful, permanently happy and gentle, I am glad he is gentle given his size. 😂

Scandi Sorry about your friends. That can be quite common where you get lots of interest at the start then people seem to bore of you still having cancer. What I did find was it was useful to buddy up with people doing chemo at the same time and keep in contact as those people really got it and it filled the gap.

@mowly77 I have primary peritoneal cancer which has vague symptoms and is very often diagnosed late - so I’m stage 4B. The cancer is treated like ovarian cancer because the cells are similar.
So all they can do is try and control it - more often than not it recurs, and can recur quickly.
Some people do get NED, and some do have cancer that relapses then responds to treatment and remits. But quite a few don’t seem to get that long -a couple of years.

Just now I’m still quite fit because the cancer is like grains of rice scattered everywhere in my abdomen, pleural lining and groin lymph node. It’s not a bulky disease and I must have a lot of healthy tissue. So I am trying to be positive. I appreciate maybe i don’t have a lot of symptoms compared to some people with Stage 4 cancer.

But I was a Dr, and I know darn well this isn’t curable (without a miracle), and I’m also frightened because I know it can spread anywhere in me.

I absolutely understand where you’re coming from. Cancer is a lonely place. I think do what you need to do to get the support you need.

Mowly, it’s lovely to hear from you.

On this thread you’re amongst friends. Please stay if it will help you. I’m quite sure you’re never far from our thoughts.

I was thinking nighties might be an idea - so thank you to whoever said that

@RedRosesPinkLilies I wore nighties. Long ones because of where I live though I was on a female only ward apart from visiting time. Then when I was moved to a private room I went into short nighties because it was easier when using the loo. I didn’t pee down the back if I couldn’t life the long ones up quick enough - I have a problem with urge incontinence and getting to the loo quickly was a bit of a problem. After a couple of near misses I went into Tena pants and one night I just thought to myself - I’m not rushing to the loo. The relief was immense and I then sorted myself out afterwards without trying to move faster than Usain Bolt. And I’m sorry if this sounds like too much information but it’s how it was. I also did the same recently when I had a knee replacement done and my catheter was out.

Snacks - I had a nice selection of snacks with me because I’m a bit of a comfort eater. They didn’t go to waste. 😊

You’re all so kind. And I’ve certainly found these threads supportive before. But I’m in a very dark, lonely place right now & I feel so alone, even compared to everyone on this thread, & you are all facing your own demons.

I had aggressive estrogen+ breast cancer back in 2011 at age 36. Right side mastectomy; 5 months of old fashioned poisonous FEC chemo. No spread to lymph nodes. Then I found out I was BRCA2+ , which was obvious really as my own mother died of breast cancer in 1985 age 35.

In March 2022 after months of faffing from my shitty local hospital trust I discovered it had come back in my lungs, pleura and sternum. My daughter was 3.5.

I’ve now blown through 2 lines of treatment in the 16 months since diagnosis. The current one - palbociclib & letrozole - I’m still on even though the tumours are growing again - because I’m waiting for results of the enzyme test needed before I start capecitabine; if I can even start it. I’m utterly gutted is an understatement. Psychologically, & physically I was just getting used to managing the side effects of palbociclib and letrozole which are pretty awful for me, but better the the devil you know. I still had good days. Now I have none. I’m on increasing doses of morphine for the pain but I’ve had to stop for the last 24 hours because I’m so constipated and my stomach aches are so bad I thought I was going to die there and then last night. I’m managing all these meds & decisions by myself as I’m currently in the US visiting my family. I emailed my oncologist 2 weeks ago when I got here, via his medical secretary, asking when test results will be back & when I can start Cape (if I can) so I can change my flight to get back earlier & sort it out. His medical secretary totally fucked that up, didn’t read the email properly, booked me in for a clinic on August 21 when I’m still in the US & cancelled my scheduled appointments in September. Now he’s on holiday, so I’ve had to email another PA with my questions. Oncologist is also going on holiday any day now because: August. & this is the Marsden, normally efficient, so I despair. I need some professional help and answers before I upend my whole trip.

My partner’s just arrived. The whole family is supposed to go to the beach in a few days. It’s my daughter’s 5th birthday in just over a week. & then I’m supposed to be getting married. For me, it’s an admin issue so I can make my will, & marriage will make all the death admin easier for my partner after I die. There’s no joy in any of these occasions, just the constant misery of being in pain & sick & my family either not understanding or me feeling guilty - so guilty - because of the hurt and grief I am causing them.

I know my cancer is aggressive & I honestly think I’ll be dead soon. If it wasn’t for my daughter I would have checked out already, as what’s to come isn’t pretty & I know it.

I’m terrified of starting Cape as everything I’ve heard from others on various forums just confirms what I’ve read - it’s a horrible drug.

I’ve joined Dignitas.

I had a friend who had stage 4 ovarian cancer at age 65. She lasted 4 years, and like me she was going from treatment to treatment, getting progressively more ill. Even though I had already had cancer, I didn’t really understand what she was going through. I do now.

If you’ve read all this, I’m amazed. Thank you. 🥇

There is a stage IV group on FB & I look sometimes but it’s very … FB. Too much crap false positivity.

Oh @mowly77 , am so sorry to read your update. You and I chatted a bit on previous threads. I have no words, I just wanted to say this must be so awful for you and these are the times we need the professionals to step up,not to make stupid admin mistakes which are making your life harder. I hope they can find something which can help your pain and sickness, without adding to it.
Thinking of you and helplessly sending as much love and light as you can bear. Xx

Thank you @Podgedodge I gladly accept your love & light, although I’ll just dim that light a tad as it’s 3am here & after being up and down to the goddamn toilet all night I’ve turned the light out, necked some sleeping pills and am existing in the gentle screen glare of MN.

it felt quite good to type all that darkness & fear out, really.

my mood is normally improved by microdosing, or even a little
bit more than microdosing, psilocybin (I’ve ditched sertraline as I plateaued wasn’t willing to take higher & higher doses of yet another drug) but since my brand of letrozole changed (nationwide shortage, it’s a real fucker) it makes me really nauseous. So: mood improved but body much more nauseous? Or suicidal thoughts but slightly less nausea? Love these dilemmas we have to manage on top of everything else.

I’ll have to work something out around the 🍄& the nausea because being on the verge of the Swiss solution isn’t ideal. I can’t even begin to imagine the admin involved. I’m too sick to even change my broadband contract, let alone arrange my own death.

@mowly77 , I’m so sorry to read all that and that you are still beset by so much admin crap, when dealing with such a shitty hand. Thinking of you and please do keep offloading here if it helps.

@mowly77 Thank you for sharing what you’re going through. Those of us who are at the beginning of our journeys can’t begins to imagine how you are suffering but I hope you can see this as a safe space where you can be yourself and not worry about sparing anyone’s feelings.

@mowly77 There are no words, and I am so very sorry.
It’s a reality check for us. Cancer does just take.
This might be the wrong thing to say - and that’s partly because I don’t know if the help would be available- would a palliative care Dr be available in London that might be able to advise on some of the symptoms you are having?

I am not talking hospice care.

But a Dr who specialises in balancing out these awful symptoms and aims to maintain quality of life? I really don’t know if that’s possible- but it’s worth finding out/getting your partner to find out.

It’s lovely to meet you @mowly77 and I was so saddened by your post. I was interested to read about your microdosing, before I was diagnosed I was taking a mushroom supplement but the bc consultant told me to come off as they gave the effect of producing oestrogen, presumably psilocybin’s don’t do the same? Sending you much love x

Morning everyone.

I didn't sleep well at all last night - got up starving at 2am & had a bowl of cereal, tossed and turned my way to 5:50am, then slept til 9:15 🙄 My sleep is awful lately. We're meant to be going to a local shopping outlet but the rain & lack of sleep make that very unappealing so may try again tomorrow. Only been trying to get there 3 weeks ish...what's another day?!

Not sure what's causing the lack of sleep but wondered if Nytol for a night or two might help?

I think a slow and crafty day is to be had unless the girls have an urge to do something else, which I doubt!

@PollyThePixie
Short nighties, big pants!!!
Thanks for the ideas/ advice for surgery everyone
I also have more questions to know to ask
xx

@mowly77 i am afraid I don’t have any advice for you but I really feel your pain and anguish and I am so sorry you’re going through such a lot. Cancer is just such a fucker it really is. Are you a beach person - will going to the beach help your mood a little? I love being by the sea, I was just thinking whether it might bring you a small comfort. Also sending love and light and some great sleeping pills if you can get them!

Yes I feel the same a bit, I am stage 4 although currently NED but for a while it was completely unresectable and I didn't feel like I could post on the group because no one wants to think about being stage 4. I am now Ned after a fairly miraculous response to immunotherapy, but if it hadn't worked I was working with the local hospice re symptom management.

@mowly77 I totally get where you are coming from. Also stage 4 here. Last year I had a very treatable breast cancer and at the time it was scary, but now I'm facing this very rare and aggressive cancer with no hope of a cure, everything feels very different.

Everyone on this board is so lovely and supportive but realistically it's isolating to know that you literally have no hope. Happy to join you on another thread.

@mowly77 sorry to hear things are looking and feeling so bleak.

Do you have a local hospice that can help with symptom management? When my husband was stage 4 and really struggling with symptoms and side effects of treatment they helped greatly improve his quality of life to the extent that he had a good period of time when he was just about back to normal (well, barring the g tube and tracheostomy) - which was miraculous if you'd seen the state of him before they got involved.

We had avoided hospice involvement for far too long as we associated it with end of life care and ultimately death. But they also do a lot of excellent symptom management work regardless of stage and I wish we had got them involved sooner.

Sending you lots of love and peace.

Hey everyone 🤗 Sorry to hear some of you aren't doing so well 😞

I posted on the last thread but have been absent for a while as I was in hospital for a few days. Ended up having a double mastectomy but they discovered that my lymph nodes are clear so pleased about that. I was discharged on Monday with drains still attached; they were removed yesterday along with the bandages and the surgeon and plastic surgeon were both very pleased with my progress. Tissue expanders were put in during surgery, I was told they'll start the saline injections in around three weeks.

Appointment with the oncologist is on the 21st so I'll find out then about follow up treatment. It's been a tough week but received excellent care (I'm not in the UK) and I have a great network of friends to support me (I'm single and parents are in the UK). Also three very demanding cats whose comfort comes first obviously 😹

Thank you to everyone who everyone who replied to me on the last thread, you are all amazing ❤️❤️❤️ xxx

Well done on getting through surgery Polly and hope you recovery quickly so your 3 cats can get the service they deserve again. 😻

So sorry to hear about the stage 4 worries, its fine to post whatever your worries are on here but can understand it might be easier to talk in a separate thread or both as it is different to the first time.

Off swimming after a roast dinner here then flower show and gardening tomorrow. DD has been doing punting tours again but weather is meh.

Sending you lots of love @mowly77. Stay on here if you want, there’s always someone to chat to/rant to or get a hand hold from; happy to keep you company on a different thread too.

@TopOfTheCliff intrigued to hear about your extended treatment for TNBC, why is that? I’m also a TN.

@Scandimandy I had 3 EC and 4 Paclitaxel. during EC I had a foggy head but was able to do some admin work from the sofa (didn’t feel capable of driving and unable to do my usual work). During Paclitaxel had a clearer head,was able to drive, was a bit more capable with the admin and did a bit more.
The chemo for me felt like a big long hangover. I didn’t feel sick, a few upset tum moments. Had a few days shivering under 3 blankets with the EC for the first week of each cycle but much better on the second week.
I used the cold cap - my hair got quite thin but it the same as usual. I got my eyebrows micro bladed, my appearance didn’t change much. I did this mostly for DD’s sake but I definitely got mental health benefits from it.

Got back from camp trip last night - with dry kit (winning!); radiotherapy starts 10am Monday morning.

I like the idea of micro blading @LemonDrizzle10 but not the cost!! Not sure I can justify it. I’ve also read it’s not recommended if you are over 50 which I am 😟 thank you for your chemo experiences, as expected everyone reacts very differently! I’m just going to have to wait and see what happens

Thank you @Silkierabbit One of my cats had a medical emergency on Tuesday so had to recruit my neighbours and friends to get him to the vet 🙄 Took three people to get him into the cat box, one of whom got very badly bitten in the process 🙀

Your tips on page 1 are very useful. The day after I got out of hospital, my hairdresser friend came round and washed and put my hair into very tight French plaits, meant I've not had to worry about it getting sweaty and matted (can't lift my arms above my head just yet). I can shower now but not ready to wash, dry and style my hair.