Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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Thanks @MrsPnut i've looked into this but concerned about the heavy flow and insertion pain

@Dammitthisisshit I'm so sorry, I'm new here too, it's shit isn't it?

@balkanscot the mental side of it is so untalked about, I had a melt down over the weekend, I shared with friends I haven't seen for ages and blocked a couple of people that are local because I didn't like their response wtf I'm losing it

@Beck01 hi hope you find something that works for you, this affects all kinds of things no one ever talks about

@MissSmiley it is indeed a big pile of poo! ;-)

I get my PICC line in today. My chemotherapy starts this week. These are good things, though terrifying. I’m in good hands though outlook isn’t good. I don’t know how much hope vs acceptance to have.

I feel like I’ve lost ‘me’ in all this. Those closest to me are so stressed because they’re worried about me but I don’t want to handle their stress. Maybe that’s selfish but I have enough to deal with. I’m usually quite an empathetic person but I’ve lost all empathy - I can’t see anything from anyone else’s point of view - to be fair I’m not trying to, but usually I automatically do - I feel I’ve lost my identity. I get why, I’m stressed to, but I also don’t feel like ‘me’ as I’m in my own thoughts all the time.

Bloody Covid is too rife for me to do anything ‘normalising’ like out for lunch with a friend or anything ‘nice’. But most of all I am terrified about my children. My youngest is 6. My eldest is 7. More than anything in the world I want to be there to help them grow up and I’m terrified that I’m not going to.

@Beck01

Thanks *@MrsPnut* i've looked into this but concerned about the heavy flow and insertion pain

I've had the copper coil for over 10 years. Even though I haven't had vaginal deliveries so my cervix is closed tight, it really wasn't that uncomfortable at all. And, surprisingly my periods were actually lighter than before x

@Dammitthisisshit sounds like youve effectively been subsumed into CancerLand - the place no one wants to be or ever thought they would find themselves. A (magical) place with its own special language, smells, activities, and feelings that anyone outside that bubble will never understand and you can't explain it all either. And yet despite there being other residents, its still a lonely dehumanizing place as you get poked and prodded incessantly. A real purgatory if you will.

Your life has been forever changed and a lot of that well-meaning support system stress comes from being outside the bubble and not understanding the language and rituals. What will become normal to you will always be abnormal to them. And of course they are worried for you. But I agree, bystander stress is not helpful!

My surgical team told me to make sure to "enjoy your recovery!" Um- HOW?! I had an outdoor coffee with a friend at least. I was too tired to go to the outdoor cheese market yesterday. So I guess its sticking close to home, doing my exercises, doing my walks, and breaking up the last of the baking and house decorating into doable chunks.

@HerbalRefreshment oh my god yes! I feel like I wandered into CancerLand by accident and now I don’t know how to get out. And I’m looking around realising I was already here - I just didn’t know it. But I can talk to people from NormalLand but they’re all talking weirdly - like it’s in a foreign language that I can understand but not get the nuances that come through when you are fluent in a language….

@Dammitthisisshit you poor thing, we all understand what you mean to find yourself in CancerLand. I was in it for nearly a year without even knowing it. Even now, another year since diagnosis, I still can't believe it's really 'me' that's here. It's awful to say but I envy people in NormalLand, I can't imagine not having appointments, scans, tests and the incessant worry worry worry.

I find dealing with everyone else's stress an additional burden, it is just too much to handle. Even now, I find myself reassuring them and think 'hang on, this should be the other way round!'. The relentless insistence of everyone insisting that I need to be perpetually 'positive' is just another thing on the 'to do list' and wears me right down.

@Podgedodge @MissSmiley Indeed. Everyone thinks that just because your active treatment has finished you are now back to normal, “cured”, business as usual, just a blip and “you need to keep on living” (my MIL’s words a few minutes ago). And that I am “very strong”. I just wanted to throttle her there and then. Sometimes I really think that only people who have stepped over the NormalLand into the shitty world of CancerLand truly understand how each of us feels.

Because of the insidious nature of cancer for me it feels like this constant mental battle of is it still growing inside of me just now, if it is when will I find out? When it’s too late? Recurrence brings a whole new world to this, a whole new package of fears and anxieties. I keep looking at photos of myself happily cycling at the start of 2020 lockdown, while this bastard had already woken up for the second time and was growing inside of me and I hadn’t had a clue. It’s really tough to deal with this.

@FizzyOrange Yes, having to cope with “normal” life and family stuff - so many times I just wish everyone would leave me alone in my bedroom with curtains closed and not bother me with “Where is DS’s football stuff?”, what are we having for tea, did you buy any toilet paper? Etc. I just want to say F* you all, leave me alone! Totally unreasonable but there it is.

@Dammitthisisshit may your chemo begin next week and create havoc for your cancer. I kept envisaging chemo as Alex & the Droogs from the Clockwork Orange smashing my lymph node tumour up. Wishing the chemo smashes yours up, too. As for leaving your children behind, same thoughts for me, too, as I have a DS9 who has been to hell and back with intractable epilepsy and had a successful brain surgery. It’s utterly shit, isn’t it?

@Dammitthisisshit what you are feeling is so familiar. I had to moderate what I said to my family so as not to upset them. Even now if anybody asks how it was for me during treatment I have to hold back on the truth because it was so unbearably grim. I joined a yoga group for breast cancer patients and it is wonderful to be among folk who get it.
I am not going to give you advice but I did find that very small good things did make the day pass more easily. Listening to a music track I love, eating a piece of delicious cake, or getting a card from someone thinking of me all helped me along the way. I couldn’t see the big picture while I was stuck down in the bog.
Sending warm wishes and happy times at Christmas with your littlies xx
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@balkanscot oh yes, your active treatment has stopped and so you're miraculously 'cured', easily confirmed by your hair growing back if you were unfortunate enough to lose it. I'm on oral chemo I take at home and everyone thinks it's like popping a vitamin tablet. When I was in the throes of active chemo and had lost a lot of weight, a friend said to me, 'Oh Fizzy, you're so slim, what's your secret?', it felt a bit unkind to say 'Ovarian cancer'.

@balkanscot I’ve been admitted to hospital tonight ready to start treatment tomorrow so fingers crossed the chemo starts smashing it all up. I would like that. I would like that so much.

And yes! You all understand CancerLand. I only found out it might exist less than 3 weeks ago but I didn’t believe it the first couple of days. Now I’m not even sure NormalLand is actually real. It could have always been a hoax.

I’m sorry to hear about reoccurrences - I think I can imagine how tough that is even though it’s a part of CancerLand that I haven’t been to yet.

But happy to hear about yoga groups for cancer patients- it makes it sound like there are trees here somewhere. I like trees.

@balkanscot when I was first diagnosed and joined the thread in 2020 I looked up to you as a seasoned poster. I too have a photo of me blissfully happy on my bike unaware I was hosting a nasty little tumour and it’s friendly lymph node. I am sorry you are feeling down and worried. It is understandable after all you have been through.
I am waiting for my mammogram result. The radiographer was busy and brusque with no time for kindness. Instead of a changing room it was “come in and strip off!” And 120N of compression to my poor battered boobs. She told me I would get a copy of a letter from the consultant to my GP sometime in January. I am blocking it from my mind mostly. Cheerful denial is my tactic. I am singing along to Christmas music, watching soppy films and crying, and feeling glad to be alive and well after a truly dreadful year. It can only improve surely!
Best wishes to all struggling with diagnosis treatment or results.
Top xx

Thanks again for the welcome. My ultrasound is tomorrow. I was fine till this afternoon then the anxiety hit. I know it's likely to be something else but I'm worried about that as well! Lump hasn't gone down with antibiotics so presumably not an infection. Also I think they are just doing the scan so if I need anything else (blood tests, biopsy?) there will be another wait.
Sorry for whimpering, I can see a lot of you are going through difficult times.

@SlaveToTwoTabbyCats The waiting is really the worst bit. They may do a biopsy during the ultrasound if they think it is needed. I had mine done that way.

@Dammitthisisshit Good luck for chemo starting today, I hope your stay passes quickly and with not too many side effects.

I’m waiting for the investigation report into my extravasation, the patient safety advisor said it was being posted on Friday morning and so I am stalking the postman every day. She did say that I would be pleased she has been so thorough and I am hoping that they have seen through the attempt by the nurse and her manager to cover up what happened.

Thanks @MrsPnut - spot on, kind of. I have to go back for a mammogram and biopsy. Quite glad they didn't do it there and then as I'd prefer not to have to drive after a biopsy. So essentially still waiting. The big swelling is some kind of cyst but he could see some 'ganglions' that he thought were normal but wants to get checked. I think something may have been lost in translation and he actually means dense, fibrous breast tissue, which was what they said after my first normal mammogram. Cyst is huge but almost certainly benign, but will need draining. My GP is hopefully going to call before Christmas.

I am recovering reasonably well from surgery but feet are both very swollen and breast is swollen so going in to breast clinic for xmas eve fluid drain before they close for 4 days. Then next appointment is with the lovely female surgeon on 14th January though may be drained again on New Years Eve, though at least can take a bath after that one. Just doing hair in a washing up bowl atm, was going well, and recliner is brilliant as have to move on it but comfy until my kindle fell into the bowl full of water then said liquid detected but somehow survived.

Cat is as sympathetic as yours Podges, has not got the memo cats are supposed to look after sick people, and instead howls anytime anyone speaks to me as she is jealous, she is 17 with seperation anxiety from DH.

Hope everyone has as good a Christmas as they can. Think we will just have the meal and presents as I am still recovering but like it just the 4 of us and the 4 pets. NHS sent me an email saying can move my booster forward but not sure am physically capable of that so 7 Jan it is, got quite ill after first two so not looking forward to that plus have to have dental appointments, just hope can avoid covid, am isolating but hard with medical things and it being so rife. 14th is sentinal node biopsy results, if good leave, if bad they said surgery and either way its radiotherapy. Not sure if that means I escape chemo, hope so but dont want to get hopes up as generally get more bad news each time and more treatment. I also have the grumpy nurse on Xmas Eve though tbf I would also be grumpy working their hours though would be more caring.

Re coping I dont go to cancerland, that is my invisible double that goes there, I pretend it is not happening to me, watch trash TV, music, read academic papers and also always wear velvet or velour to appointments as everything is alone and I can stroke it and its like having a pet with you, a nice pet,not a grumpy 17 year old cat. I also am doing will etc so if worst happens I know I have done all I can for those left behind, mainly my kids. But now its stage 3 rather than stage 4 the odds are better, think its 72% survive 5 years now so want to try and get fitter etc, not sure how much that helps but cant adversely affect it. Though i am predominately under a fleece blanket on a fleece lined recliner in a pink bubble.

@Dammitthisisshit so sorry to read your post. That you don't think things are good and that you have lost yourself. I just wish I knew what to say but there is a stranger thinking of you tonight and hope you get better news.

I went to hospital today and wasn't able to have everything done. Was told I would have to go back in 3-4 weeks for a camera inside and a biopsy. A few hours later I had a call to say I've been put on the urgent list so I have three appointments starting tomorrow with the biopsy on New Year's Eve. I'm so grateful I don't have to wait up to a month but it has terrified me that I've been added to the urgent list.

@SunshineCake1 urgent is good. Though I get why it’s scary. But what’s coming is coming and it’s better to know sooner rather than later. The biopsy results take a while to be analysed fully but they get an idea after days - at least they did with me. Fingers crossed for you.

I’m just leaving hospital - getting discharged from chemo session no 1 (5 more to go then and assessment to see if/how much it’s worked). This bit is, so far, actually better than the waiting.

Thank you @Dammitthisisshit. I'm just feeling overwhelmed and it all feels a bit too real now. I hope all your appointments go well .

@oh yes, your active treatment has stopped and so you're miraculously 'cured'

Or - your cancer was caught early. Only stage 1A. You don’t need chemotherapy. Just get in with your life now and put it behind you.

Then you stand their with your mouth wide open whilst gasping like a fish because you do in fact have a 60 percent chance of re-occurrence in the first two years and if it does come back at all then sadly your very rare cancer means chemotherapy only works in about 12per cent of cases. Not that people want to hear that but I’m well passed the stage of letting them continue with get on with your life so I now always have my say.

Honestly, stage 1A can actually be no different to stage 3 or 4 in the grand scheme of things.

Evening all. @Silkieschickens I like the sound of your fleecy pink bubble. Stay warm and cosy!
@Dammitthisisshit may your side effects be minimal. I think it is easier to cope once the treatment starts as you have a plan to follow.
@SunshineCake1 be kind to yourself. The time will fly by and it will all work out. Just get from day to day as best you can. Sending warm waves.
@CariadWelshcake my tactic is to grin cheerily and agree I am cured because it makes everybody feel better and makes sod all difference to the actual outcome. My closest people know the uncertainty I live with but not the general public.

I am having a Covid Christmas nightmare as despite living like a hermit I have somehow caught a cold. I was in denial but realised I needed to get a PCR before seeing my DM87 on Boxing Day. So we trooped off this morning to the Walk in test centre and did the business. Now waiting for the result on tenterhooks and trying to stop DH going out! Not feeling bad just sneezing and snotty.
Best wishes to all. Have as good a time as health and Covid permits!
Love Top xx

Thanks Top Hope you get a negative pcr quickly. I am now in a koala onesie in my pink fleece bubble. Was drained today fine. Have a lovely Christmas.

Thank you @TopOfTheCliff.

Hope your test is negative.

DH is poorly. Not covid. Too ill to go to his parents tomorrow though. Kids will go alone.

Thank you for the company on this thread.
@TopOfTheCliff everything crossed for you.
And sending good wishes to everyone for some moments of peace and joy in this roller coaster. 🌺🌺🌺

Merry Christmas to you all. Sending you my very best wishes. I hope everyone manages to enjoy the day tomorrow - at least in some form anyway.

Almost through radiotherapy and skin still intact!