Cancer Support Thread #81 Newbies welcome

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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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I typed a long post yesterday evening and it got lost, argh!

@Acinonyx2 I am in Scotland and this is the pharmacy I was thinking of. Haven’t had a phone call from my BCN yet to let me know this would be OK, so. I am bracing myself for another 10-day wait until my appt. with the practice nurse.

I really don’t want to go down the private route every time I panic but it’s damn hard to live for another 10 days not having done anything. I don even know when I’ll get to go to the breast clinic for an examination, maybe it’s a 2-week pathway for this as well. I am stuck in limbo at the moment. veering from “I’ll be fine” to “I am now incurable and therefore dead.”

I also managed to “poison” myself with beetroot juice at the weekend. Had a whole 1 L carton in 24 hours, then got the most painful stomach cramps! Serves me right for going down the “I’ll start juicing” route. I want to feel like I am in control and at the moment I don’t feel like it at all. Which makes everything so hard.

Re: working through chemo. I did it last year, worked all the way through it apart from 2 days off. I do work 3 days a week and from home but if I was working FT I wouldn’t have been able to do it. Should something turn out to be wrong now, I don’t think I would do it. As it is, waiting like this, I have lost the will to work. As someone mentioned above, work just seems to be so trivial now in comparison, I don’t care about any reports, etc. I have been thinking for some time if I want to continue working in my, seemingly, dream job (museum curator), and whether I would like to volunteer at a cancer charity. But on the other hand, I don’t think I could do it emotionally, it would be too much, especially at this moment, when I need so much support while waiting, trying not to have a nervous breakdown.

I keep checking my urine every time I go to the toilet (urine is normal colour, bar the 2 days of being pink due to beetroot juice ), looking into my eyes for any signs of jaundice (nothing), any abdominal pain (nothing apart from the beetroot episode), pain in right shoulder (nothing), ribs (nothing). I was really feeling sorry for myself yesterday, feeling awful after the beetroot episode, feeling sore all over due to restarting Pilates after 6 weeks of nothing. Just generally meh.

@MrsPnut I love your pugs! 🦮

@Silkieschickens good luck with MRI tomorrow.

@SewingBees docetaxel played havoc with my digestion! I had it in combination with Carboplatin, so not sure which one was the real culprit. My nails and toenails went to pieces and neuropathy was horrid as well.

Waving to everyone else.

Just getting ready to go for my pre op COVID test. Thanks to pp who mentioned heart shaped pillows, have looked out and washed ready for post op.
Hope everyone doing ok this morning.

@Podgedodge what a tough time you are having - I feel rather helpless to say anything supportive but do keep posting.

@balkanscot I saw you were on the health anxiety thread - you don't have irrational health anxiety - you have anxiety about your health. You've already had a recurrence. The problem (as if you don't know...) is that your anxiety is unhelpful - as they say - worry is like a rocking chair - it keeps you busy but doesn't get you anywhere.

I did not do well on chemo - there were days I could have worked but too many not. As you say - the mental strain is also there. I am back working now and it is pretty challenging as I'm (surprise surprise) not doing well on my new drug either.

Your job does sound very attractive though - it's probably more the whole concept of work (meaning of life etc) that is the issue. I'm not happy with my work situation and want to just stop change it. We need the money though and actually that helps to simplify my feelings and attitude.

Currently I'm on a steroids/sleeping pills cycle that feel like jet-lag and never in sync with the world. I don't know if I can go back to Kadcyla or not or whatever - feel very adrift.

@PaddingtonStareBare listen to your own experience and put your health first. It's easier to just go sick than be constantly juggling good and bad days - and issues are cumulative over cycles. I didn't intend to go sick at the start.

This thread this morning has been the breath of fresh air that I've needed.

Thank you all, I'm going to get signed off sick. I just don't have the mental capacity to do it all.

@Podgedodge good luck for today :)

My tumour removal last Friday was successful, they managed to remove all of the main tumour but didn't touch any of the small ones, sitting that would've ended up causing brain damage. They are now going to measure me up for a mask for x-ray therapy asking with chemo, these I'm not looking forward to but know they are necessary. She's anyone have any recommended reading for food that's help fight cancer? I'm off to the library later and think I might check out the for section.

Got a few minutes before heading off to pre-op assessment and wanted to comment re:work + cancer. Im a pretty private person and only told a few people because I had to but that was before the final diagnosis came in. I ended up being out of the office (but not off) and no one commented on it or mentioned it. Covid was somewhat of a godsend to keep WFH'ing since, although I recognise thats not possible for a lot of people.

This time, though, Im taking short term sick leave for the operation and after and well, I may have 'padded' it with a few extra weeks. Sure its near the holidays and work slows down anyway but, why not? Am I really going to feel up to dealing with work bs when incisions hurt or Im fatigued? When you are in pain or trying to manage the mental shift between Cancer Patient and Employee everything gets really trivial. Dont apologise if you want to take sick leave - if not now, then when? I already worked through diagnosis and other events because I didn't know what else to do with myself. Now, I do. Besides, there's no prizes or extra money (usually) for pushing through.

Other pro tip - just don't tell people. I didn't realise how complex this disease was until I got thrown in at the deep end. Mileage may vary and someone's best friend's aunt who only had a surgery and died at 95 of a heart attack really isnt the best anecdata point. And no one wants to hear the drawn out details and specialist language you now speak to explain the difference. Save sanity by keeping it to a few very select inner circle people you can trust!

Herbal

I'm the total opposite to you. I told everyone. I told all of my friends on Facebook the night before my operation why I was there.

I've gained strength from other people. I raised money in October for Breast Cancer and couldn't have done it without the support of friends and family, it totally helped me through my first few weeks of chemo knowing I was doing something.

Also, in my sad, little pre-cancer world I thought cancer happened to other people, how stupid was I. I rarely did breast self- examinations and when asked by a nurse or dr whether I checked myself I would nod! Now I've got a big following on Instagram and try and encourage and educate women (& men) to examine themselves regularly and spot the signs of early breast cancer.

Everyone is on their own path with their diagnosis and treatment, everyone handles it differently and I respect that people cope in different ways. I couldn't get through this without the support of my family, friends and colleagues.

@Acinonyx2 you are right there, that it’s more to do with pondering of life and its meaning and all that jazz, rather than the job itself. I do feel so detached during our dairy Zoom coffee mornings. I seem to remember you went onto a reduced dose of Kadcyla but that its side effects are still causing you discomfort. How long Can you go back to taking it at any time or do you have to do all sorts of tests before you can resume?

@Silkieschickens good luck with CT scan on Thursday!

@HerbalRefreshment I am like you, barely told anyone outside my immediate family circle and my line manager. I am sure my work colleagues know about my illness but I requested that it doesn’t get to be mentioned out loud. Ie., it’s not something up for discussion during Zoom coffee time. I haven’t told my neighbours (I live in a tenement), and have told only 2 other school mums. I know it’s nothing to be ashamed of and some days I wish I could just shout it out from the rooftops. But… I don’t know, the kind of shock on people’s faces coupled with this sympathy that only lasts for 5 mins., then they all all back doing their own thing, while I have to live with it day in, day out. I know the world just keeps on turning but I will freely admit it here, damn, I want it to stop and comfort me and tell me it’s all going to be OK and that this bastard disease won’t come back (yet again)!

@Doofas great news re: tumour removal. Keep on going, it won’t be pleasant as you say, but it will give you the best chance of kicking this bastard out of your system as much as possible.

Hello, I'm hoping it's OK to post here. I have just been told I have some calcifications on a Mammogram and even though there is no lump, the calcifications and worrying enough that they need a Vaccum Biopsy. Has anyone had one of these and how was it?

I am so stressed and worried I keep crying. I've had breast cancer before (but in the other breast) and had treatment for it. And now they find this in the follow up mammogram. I am much more scared this time though which I know makes little sense. I just thought I had my life back and now I don't.

I'm now going to catch up with this thread with a cup of tea.

Of course its fine to post here Berry and so sorry you are going through this.

I am only just starting with my first breast cancer and the thought of a second one would tip me over the edge too. Hopefully it turns out to be harmless or at least very quick and easy to treat and can go back to having your life back.

I have not told that many people but I think everyone should do what works for them. I keep getting told to tell more people but I am happy with just having about 3 people told and schools. I am quite happy here with my husband and my children and pets and I like hiding from the world in my safe space. Though if my children had been younger I would have told more people incase we needed help taking them to school etc. May tell a lady in our village but trouble is tell 1 and you have told the whole village who will then start stalking you for updates and trying to visit every 5 minutes and I just want to hide under my duvet and forget I have cancer.

I now have a hospital doctors appointment on 3rd to add to my collection of appointments. I may just move into hospital. I think then I have to decide on surgery - it may be mastectomy is only option and I have to decide about reconstruction - they have said radio may well follow, presume options are implants or from you with a scar. Lumpectomy may just be an option but dicey due to size, surgeon was pushing that but then found a second lump which he said ruled it out.

Does anyone know about these? I want safest method for not getting cancer again and taking it out properly. Seen conflicting information on that online. If I am having radio afterwards does that rule implants out. How bad are the scars. Looks are definitely secondary but scars and obvious signs I would find difficult but that is a minor thing re surviving. Also is it true you cannot shower or bathe afterwards, how long is this for. I am about a c cup if that makes any difference. Sorry for so many questions, I think they will put me on spot next Friday and I am not sure what I am doing. Husband just wants me better, he says he loves me whatever. I am freaking out about the not being able to bathe as I have ocd though at least the ocd is distracting me from the cancer. Do the nurses come round your house after? Is there always a 2 week wait before surgery? Its fine if no one has time to answer can ask doctor but I was put on spot straight away last time with no information and just said mastectomy and reconstruction if possible but doctor then left as a problem.

Sorry lumpectomy may still be an option or may be taken away due to tumour sizes.

Hi @Silkieschickens you must be in turmoil. Please contact your breast care nurse or mine told me breastcancernow.org/information-support/support-you/contact-our-nurses was a good resource to go through your questions.
After a lumpectomy and lymph nodes I had visits from community nurses over two weeks to check on wound/ drain etc. Very helpful.
Were you given a big folder with loads of info? Just dip into the bits you need. But I really suggest you talk to someone before your appt.
I’m a newbie at all this but hope that helps.

Thanks Thesandwich that is helpful. Yes they gave me a A5 folder though tbh I left it in our car for next time, seemed to be consent forms and counselling mainly though there was some chemo etc stuff in there. I could try phoning though may wait as they need MRI results to know if lumpectomy is even an option, said may well not be now. It was a bit chaotic as they found a second lump at that one when I said I thought lumpectomy would not work.

MRI for me indicated lumpectomy and lymph node surgery was possible, so that’s what I had. But surgical results revealed five times more cancer than even the MRI showed, so I then had mastectomy. No community nurses were ever involved.

@Silkieschickens hope you are feeling ok. I had a mastectomy on 2nd - they found 2 tumours via ultrasound but as they were fairly far apart my consultant recommended a mastectomy rather than lumpectomy. After MRI there was also another suspicious lump so I knew mastectomy was right for me (which did turn out to be cancerous too).
Anyway it was ok - as others have said a district nurse came out every day until the drain was removed and that made things loads easier.
The scars are absolutely fine - just a u-shape then a small incision under the arm where the central lymph node was removed.
I also had immediate reconstruction which (I think) has helped my mental health and although not an exact match looks much better than I expected.
Good luck with everything xx

@Silkieschickens having a shower is a bit tricky - have tried wrapping cling film around my body, holding a towel against the wound etc. I can't wait for a proper shower!

Hi @Silkieschickens I can’t answer all your questions but I had a lumpectomy and node clearance last Christmas and went in to see the nurses to have the drain out three days later. Nobody came to the house but I was able to pop in to the Breast care unit for dressings and fluid drainage as needed. I couldn’t shower for about two weeks but could strip wash. If you don’t have a drain it is a shorter time. Sending hugs x

For exercise look at the Macmillan SafeFit trial. They provide a free online exercise programme for cancer patients treated on the NHS. I had a lovely Zoom teacher for 12 weeks after surgery.

@BerryJay welcome and let’s hope your stay here is brief. The vacuum biopsy just means they stick a thin tube into the area of interest and it sucks out the specimen. I had several and they don’t hurt but they make a loud bang.

Thanks fully my arm pain has settled so I have cautiously resumed Toppish activities with a gentle 25 mile bike ride along the beach in the wind and sun today. It was fabulous! Then I did mystic yoga with the crazy lady and her farting dog. I do feel much better when I can be active.

Stay warm people. Fleecy duvet days sound perfect now it’s cold and frosty! It’s definitely hot chocolate weather now too.
Best wishes to all and to the lurkers as well
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Sadly safefit aren’t taking any more referrals at the moment… sounds really good.

Thanks Daisy and sorry you had to go through surgery again. This is what concerns me, my surgeon was pushing this last time for cosmetic reasons as that it his speciality but lobular often has more than appears, my doctor said that.

Thanks Silky very useful and hope you get that shower soon.

Just watched a video on the Lobular Breast Cancer UK website and that said you generally need mastectomy and discussed with DH as well and think that is what is best. I think as he found a second lump the choice will probably be taken away anyway but just wanted to think about a decision not be put on the spot with no information again. Not sure what to do re reconstruction or even what will be offered - do want to return to swimming so would ideally like a reconstruction but they have said radio is likely later. Also think nipple will be taken out, at least it says there is cancer in it. I looked at pictures of women with no reconstruction, think mine will just be right breast so would be lop sided without anything though atm main priority is killing the cancer. DH says to get reconstruction or something later, I was thinking same time before but he may be right - will see what MRI and CT shows.

Thanks for exercise scheme and advice Top - looks a good scheme, is closed atm but will keep eye on it. I did some aerobics videos in lockdown just need to give myself a kick and not just duvet days. Beach bike ride sounds lovely.

Just arrived at the hospital for blood tests prior to chemo #5. Spoke to my oncologist yesterday and she is going to reduce my docetaxel dose by 20% because I experienced so many side effects. I'm really relieved - my last chemo is scheduled for the week before Christmas so with a lower dose I stand a chance of being awake on the big day!

At the moment I'm trying to get as prepared for Christmas as possible so everything is in place. We're planning to travel to my sister in law's on the 23rd and stay for a week so my daughter can have a lovely Christmas with her cousins. My husband and I are just too knackered and beaten down to be able to give her the nice Christmas she deserves. I'm desperately hoping we don't end up in lockdown or with travel restrictions as that would completely scupper our plans.

As my user name suggests I have a number of sewing projects on the go, including Christmas presents. Some may end up being finished and sent in the new year, but the recipients will understand.

Finally the breast clinic phoned me this morning and said I can have an examination appt. in…. January! I may as well have waited for the 6-month check up with the breast surgeon on 14th January! Then phoned me a minute later to say they have a cancellation slot on 30th Nov. in the afternoon.

At least, something is happening.

@Silkieschickens I will write up my experience of mastectomy (albeit double) and reconstruction (DIEP flap). In retrospect I wish I hadn’t done it as it was a massive operation (10 hours long!) for a butchered look both chest-wise and abdomen-wise. Even though I had nipple reconstruction & tattooing (aureola). There is no feeling in them and I developed a post-op infection so had to go back to hospital. Initially my plan was not to have reconstruction but then my DH planted a seed of doubt into my head. I had quadruple drains (for both breasts and both sides of my abdomen), was off work for 12 weeks (recovery time). It took me ages to pluck up the courage to have a look at my new chest in the mirror. All medical staff (surgeons, both breast & plastic - I was operated on by both) were marvelling at my new breasts but all I could see were mutilated & carved up balls of fat tissue under my skin. Still, when I think about it in retrospect, it doesn’t matter, What matters is that this bastard cancer never comes back. Yet it did…. The whole point of this preventative surgery (double mastectomy was purely precautionary, initially I was going to have lumpectomy & rads only but my genetic test results only came in 24 hours before I was due to have my lumpectomy. I also had my ovaries removed as a precaution due to BRCA2+).

@SewingBees how did the reduced docetaxel go?

Off to focus my mind on the GBBO.

@balkanscot Chemo is on Thursday so I'll let you know how the reduced dose goes.

I'm also off to watch GBBO - at least some nice things remain constant despite cancer diagnoses and treatment.

Thanks @Silkieschickens for your lovely message & the offer to PM you. I have managed to get an initial assessment for Bupa counselling via Macmillan. Good luck for your MRI scan.
Sorry not to respond to everyone as I have complete brain fog but I have told every man & his dog about my cancer & sometimes I regret it. As @balkanscot said it can be hard dealing with people’s reaction. Sometimes I end up feeling I have to reassure them! Saying that I have also got a lot of support this way so each to their own.

Thanks Balkanscot that is useful to know.

Glad you got some counselling Ilido

Just back from MRI, cried for a few minutes there, just suddenly realised it was real, but MRI itself was fine apart from needed to take mask off in it to feel could breathe, nice music.