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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Hello
I haven't posted for a long while now, but do sometimes lurk. I was diagnosed with bowel cancer last June, after an emergency admission with a perforation. I have a stoma (waiting waiting waiting for reversal) and had 6 months of chemo. Back at work now, and things are going well.
So sorry to see new names, and particular bowel-empathy for @Bob74 and @Ilovealido.
I found Playmobil to be the ultimate play-in-bed-whilst-feeling-rubbish toy - we seemed to spend hours playing / browsing the internet for more / buying random people off ebay! In fact, I really should get round to re-selling some of it!

@Doofas and @Ilovealido Possible idea for kids' activity: the Baker Ross has lots of simple craft kits for making all sorts of things, eg Xmas decs, and they could probably be done in a tray with limited mess if you pick carefully - nothing with glitter! Hobbycraft, Amazon & eBay have the same sort of thing.

Hello to all the newbies. Sorry you need to be here.
I just popped in to catch up while drinking tea and resting after a Pilates class. I ache so much from the Anastrozole hormone blocker. Exercise seems to be the best way to get rid of the stiffness and pain.

@Acinonyx2 I am coming up to a year on from breast surgery and lymph node clearance and the lumpiness has gone but I get niggly nerve pain down my side most days. It goes if I take paracetamol but it’s still very sensitive. I hope it will settle eventually. I’m bored of having a broken body now. I want to forget about it all but it keeps reminding me.

Sending positive waves to all waiting for results, plans and going through treatment. Keep going!

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Great idea thanks. A friend recommend a book called mummy and me to me. I've just bought it so it hasn't come yet but she says it has a page for mum to write on and a page for child to do with things like what's the funniest thing the other person has done. A kind of do together thing while enjoying thinking about times together.

Hi everyone, I had my appointment yesterday to discuss my treatment plan. Have been told I’m stage 1, grade 3. No sign of any spread outside my breast but due to have further tests to determine. Got to have 5/6 months of chemotherapy then surgery, but they’ve don’t know whether that will be a full mastectomy yet, so the plan at the moment is.. Meet with the chemotherapy team next week, and they plan to start the chemotherapy the week after. I’ve also got to have a marker put in the lump in case of shrinkage following chemo, which will probably be next week too.
Also having a referral to the clinical psychologist to help manage my anxiety, which I’m very grateful for.
Sending love to you all.

I meant to add, I know I’ll get lots of information about the chemo at my appointment next week, and of course I have no idea yet about what type I’ll be having, but any advice on what to expect, or how best to manage it would be so gratefully received! Thank you all x

@TopOfTheCliff I am in the grip of a feverish desire to stop with all this stuff. I realise that my genuine problems with Kadcyla have unleashed a powerful urge to just STOP - have my health back - at least for a while, until....?

I've been reading about the chronic pain that affects 20-30% of patients after surgery. That's a lot but it's hardly mentioned. I'm realising that this is probably going to be long-term - could be worse.

But 7 more months of chem 'lite' (hahaha) is really getting me down. I figure I lose about a third of my time to appts or sickness so I'm never fully on top of work etc.

I definitely second the exercise - my walks are my lifeline.

@TwoBigNoisyBoys if you are having chemo before surgery at stage 1 sounds like you might have similar subtype to me (but I was stage 3) - did you get a note of the receptor subtypes of your cancer (hormone or Her2 positive, negative - that kind of thing)? That will determine your chemo regime - between us we have done them all! Response is quite unpredictable, you don't know quite how you will fair until you get going - some people sail through (not sure who they are though - they don't post much ) most are between that and worse. You will get through it though.

I don't really suffer with anxiety my problem is gloominess and to be fair - that's not a new problem and I'm not even sure it has got any worse although I seem to be in a bit of a dark place just now. I want my life back but I'm not even sure what that means. I don't want the same old. I want a reset.

Had a bit of a boost yesterday, clear scan 4 moths on from chemo. Hope to get clear for at least another 2 months which would mean that Im not carbo resistant. I am struggling with Zejula in that as well as feling slightly sick Im also ravenous with hunger all the time, I could eat several meals at once and still have hunger pangs!

@thereisonlyoneofme that is fantastic news! You are one of our thread champions as you joined us at rock bottom with an awful prognosis and look at you now! It just shows that there is always hope. I think of you in your shiny car going out with the dog enjoying life again. I sympathise with the sick hunger thing. Fingers crossed it seems to be easing as the Herceptin wears off.

@Acinonyx2 it is quite understandable you have had enough but maybe you just need breathing space? Could you negotiate a month off to let you recover enough to battle on? It is so important if you can bear it.

I read a great paper yesterday from the New Scientist 2018. Patients with breast cancer 40 percent less likely to die of it if they exercised for 150 minutes a week after conventional treatment. That’s way more effective than Anastrozole at 13 percent and giving up alcohol at 15 percent. It encourages me to get out there and do it!

@TwoBigNoisyBoys you are looking down the road I have travelled over the last 17 months. I had stage 2 grade 3 ER positive and HER2 positive breast cancer. I had chemo first and it cleared every trace of cancer! It meant I had minimal breast surgery but a total node clearance to be sure. The knack is not to look ahead but to stay in the day. Right now you might find it helps to be practical. Fill the freezer with meals. Get Christmas sorted early. Throw yourself into all the things that will make life easier once you start treatment. I made a little nook with a cosy sofa and TV I could go to at night when I was awake and ill so I didn’t disturb my DH at 3am. Ask friends for help with school drop offs and pick ups. Maybe ask them to cook extra meals for you too. Lower your standards and be kind to yourself. Use the Chemo nurses and Breast Cancer Nurses if you need advice on symptom relief or you are wobbling. Take all the pills! You can get through this a day at a time and we are always here when you want a good moan. Sending hugs x

I’m going away this weekend with girlfriends for the first time in two years. Cornwall and sea views await. Shall I swim in the sea? Probably!
Love to all.
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@thereisonlyoneofme great news on your scan, you must be so pleased! I am also on Zejula, I started at 300mg which I was surprised at as I am about 60kg in weight, but a week ago my dose was reduced to 200mg which has helped with the fatigue. Sadly, it hasn't helped with the nausea, it's not like my first line chemo but it is nearly always 'there', eating seems to settle it strangely and I'm eating small snacks several times a day rather than meals. Ice lollies, petit filous and bananas seem to help, hardly a great diet but it's calories. My team has suggested I take the Zejula at night but I struggle to go to sleep as it is and always wake up in the night so don't want to chance feeling sick in the night. What time do you take yours? I don't have hunger pains and hardly ever feel hungry, my stomach still rumbles when it's empty though, it's all very odd. Constipation is a big feature in my life at the moment, I'm taking maximum lactulose every day but know I should switch to the Laxido but with the nausea just can't face even the thought of it.

To introduce myself, I have stage 3c high grade serious ovarian cancer, diagnosed in December last year. I've had 6 cycles of paclitaxel and carboplatin and debulking surgery. I have been on Niraparib as maintenance chemo for 5 weeks. I'm in my fifties with an adult DD.

Welcome to all the newcomers, this is a safe and friendly place for brilliant support from those who truly understand.

@thereisonlyoneofme clean scans always good news!

@TopOfTheCliff just spoke to dr and we are taking a treatment break of one cycle to get my lungs/blood/liver under control. But seems my last dose was accidentally at the full dose rather than the reduced - so that is part of it I am really looking forward to 3 weeks off the train.

@FizzyOrange hello and may your poos be easy and smooth.

@Acinonyx2 You do sound really fed up! I've felt pretty much OK this cycle which must have been due to the steroids but I'm due to start another hormone blockers Exemestane so that might throw it off .

I think your current mental malaise of wanting it to stop is not unheard of. It wouldn't be as bad if you were feeling better physically - is there anything else they can do apart from dose reduction?

Also as Top said, the spectre of work hanging over you won't help but I think you said before you can't really give if up completely. Have you got enough energy/time to add something else in, like a class or different activity a couple of times a week? Something else to focus on & distract from the crap? I know you've got exercise covered.

@TwoBigNoisyBoys That's a similar outlook to me too at that stage. With the chemo, if it's every three weeks there tends to be a pattern of the first week afterwards being iffy, the second week ok and the third week better/good. Try to drink loads to flush the stuff through & keep you hydrated, although taste changes can make this challenging. Do whatever you need to to try mitigate any side effects big or small - don't think you should be able to bear it out or compare to other people. Have a little "treat" each cycle- mine was in lockdown so my treat was buying something online that normally I would've thought was too frivolous, so it could be anything that gives you a little boost.

Not sure if its too early to come on here but just called my doctor about a breast lump I had since May and the doctor said she thinks it will be cancer and is referring me on 2ww. Hoping they are wrong and just a peri menopause thing, no family history, well grandmothers aunt. About 1 inch by 1.5 inch hard lump, very visible if raise arm, causes skin to pull in, white spots on breasts, appears to change in size a bit with cycles. I contacted a doctor in June and he replied as it changes in size it will be fine but we are normally super careful about these things so someone will call you. I was asleep when they called then everything got hectic and got covid then long covid and lots of childrens problems to solve plus I told myself first doctor said would be OK. I am late 40s, really know nothing about it, was in hospital last week for long covid and was crazily busy plus you had to go alone.

Sorry for everyone going through this.

Welcome @Silkieschickens pull up a chair whilst you wait. Hopefully you can be seen quickly and it’ll turn out to be nothing.

@thereisonlyoneofme Hurrah for the clear scan

@Acinonyx2 Glad you can have a breather.

@TopOfTheCliff Have a brilliant weekend.

Hi. I’ve been on here some time but not posted recently. I had mastectomy and reconstruction 6 weeks ago. I had my implant inflated ready for radiotherapy about 2 weeks ago. Following that, the implant breast went pink, then covered in a sporty flat rash then red and spreading around the breast.
I’ve been in hospital waiting for an operation to investigate the implant. As it’s taken the surgeon a few days to source an implant, there’s been time to consider whether other options are possible. They and I think I my have Red Breast Syndrome - an allergic reaction. So hoping to start steroids alongside antibiotics. Fingers crossed the steroids will resolve the issue without need for surgery.
Has anyone else had ‘Red Breast Syndrome’? It seems to be little known about even amongst breast specialists.

Hello all again

I was here before under a different user name as I was referred for an urgent colonoscopy. Thankfully it was just benign growths.

Now I have a lump in my breast and have just been referred again.

Feeling pretty down at the moment, so I thought I would stick my head round the door again.

@pinguwozpushed and @Silkieschickens I am also awaiting an appointment at the breast clinic. Mines on the 11th. We can all wait together

@twinmum86 @Silkieschickens. I haven't got a date yet, have literally just been referred.

I know that 90% of referrals are ok, but I always worry that I will be in the 10%.

Thanks all. I haven't got a date either and the doctor said to prepare for bad news and normally with my symptoms people have cancer. Not quite sure how she expects me to prepare. I am hoping she is wrong. I am late 40s and it does seem to be an age for things like cysts so hope there is an innocent explanation, I am just telling myself there will be or I will panic. I hate having to go to hospital alone as well, I am not very mature about these things.

FizzyOrange I take my pills at night and havent found it made my sleeping patterns worse. Ive always been a bad sleeper, and usually have to get up 3 times a night for a wee ! It might stop you feeling sick. Ive been thinking about switching to mornings, as when I wake up at night I dont feel sick but it comes on during the morning, so about 12 hours after pills.

TopoftheCliff I have been enjoying my car, though some little b**ger spray painted it Halloween, Ive managed to get it off without too much damage.
Am I a champion, ? (sings Queen melody) ! I think anyone struggling with cancer is a champion too

@Silkieschickens I'll keep everything firmly crossed for you that the GP is wrong. Did you outright ask if they thought it was cancer or did they just tell you that off their own back? Seems a bit harsh when you might now have to wait two weeks to be seen.

Thanks TwinMum I didn't ask, she just said it. I was shocked she sounded so certain when its just over phone e-mail but she said its because I said when I raise my arm a lump is really visible, there have been skin changes, its rock hard and then that means its normal cancer and prepare for bad news. Weird thing is gave same symptoms well apart from raising arm and skin changes to a male doctor in June and he said not to worry it won't be cancer though he was a bit flippant about it and she asked more questions and seemed to know more. I am trying to convince myself she is wrong and it will be a cyst as I will just go too panicky assuming its cancer and nothing I can do about it. I've had quite a few cancer checks in the past, usually for bleeding, and they have always said it won't be cancer but need to check and it wasn't so a bit at her saying that.

I think there is some hope it won't be as it does seem to grow and shrink a bit during my cycle. Hoping we all having innocent things and we don't have to wait long. I may call hospital and see what wait is, could go private for checks though not sure it will speed up anything.

Do your have twins then? I have a 14 year old ASD child and a 16 year old doing GCSEs.

normal = normally

Hi all, I got my CT results today & it was not good news. There are several spots on my liver and they told me to prepare my children for me to die! I didn't ask for time frames as I am not interested. I don't believe anyone can put a time limit on your life.

I feel surprisingly ok about it, haven't cried, I don't even have that panicky fear feeling. In fact for some reason I feel quite liberated and managed to host a play date. Perhaps it's just shock. Mad as it sounds I had a really intense series of dreams when I was in ITU that predicted a reoccurrence that I then healed myself, so as woo as that is, I guess time will tell.

I've declined palliative chemo but had said I'll think about biological therapies although these are pretty limited in oesophageal cancer and I have no markers for them. I do have a stash of apricot kernels though so will crack those open 😉

I have just finished a book about a guy that healed his stage 4 OC naturally so I'll hang on to that for now.

Healing vibes to all ✌️