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Cancer support thread # 75 - come on in!

992 replies

Bloodybridget · 17/06/2020 16:59

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

OP posts:
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20mum · 23/07/2020 13:02

Thank you for replies. The nearest hospital has the reputation of a place nobody would go near, so definitely it's better to know which London hospital is best. Also, the dermatologist versus oncologist question is important.( I'm a person who will go decades without going near a g.p., so have no relationship. ) Baroness C. advised in her b.b.c. radio 4 interview that nobody, especially women, should ever approach n.h.s without being well informed and all absolutely must have a witness, recording the transaction. She spent a lifetime investigating n.h.s, chairing committees, and recently published the result of a two year investigation about three ways n.h.s has killed or wrecked the lives of women and babies, particularly by the habit of arrogantly refusing to listen to women, sneering at them, ignoring them, declaring they must be mad if they are in agony, and for four decades continuing to prescribe a thalidomide effect drug to pregant women, despite knowing perfectly well it is causing hundreds of birth deformities each year. Women have been paralysed by the mesh surgery, continued despite surgeons knowing it was discredited, but arrogantly telling women they were imagining their resulting side effects. She declared that she has never been so deeply shocked, after all the decades she has been looking into n.h.s. scandals. N.h.s, she says, is run for staff and has no ethos of caring for patient/victim or whistleblowing, if it ever conflicts with a surgeon's ego.. Of course many are dedicated and strive heroically to save lives. In case you get thrown on a conveyor belt delivering you to one of the other types, it isn't unreasonable to try to get information to be forewarned. Absolutely invariably, in this corner of London, routine processing will direct everyone to a hospital no health professionals would dream of going to, so there's a double incentive to try not to be 100% trustingly ignorant.

20mum · 23/07/2020 13:19

P.S. I did have a woman dermatologist years back telling me I had a melanoma on my nostril, and was referred, but encountered a maxi-arrogant surgeon who refused to look at the notes or speak to a mere female. He strode into the room without a word and began to look at the bridge of my nose (I wear glasses which leave a bit of a dent when first removed) I tried my best to tell him he was looking at the wrong end of my nose, but he declared "Oh, it doesn't matter, we will just keep excavating and find it eventually ", then swept from the room. He had 'wasted' possibly a total of over 80 seconds of his valuable time by that cursory appointment. Somehow, I didn't like the prospect of having half my nose removed to save him the trouble of paying attention to the female dermatologist who referred me, or to the female owner of the nose. I never had the suspect melanoma investigated as a result. But I don't want to go through a similar loop again.

InOtterNews · 23/07/2020 14:08

Hope everyone is doing ok. I'm half way through chemo. Due to finish tomorrow lunchtime. Have been here since Tuesday night. The Doc says I'm going to have to stay a little longer as he expecting levels to drop rapidly but I might able to go home for a few hours each day over the weekend. Arse!

Oh and one of the cats hasn't been since I left.

Cancer support thread # 75 - come on in!
Bloodybridget · 23/07/2020 14:27

@BitOfFun your DH's painting is wonderful, but so sad, knowing the circumstances. Hope you get lots of use out of your wheelchair, and that it's comfortable. Flowers
@InOtterNews did you mean one of your cats has gone missing? Hope it returns soon, good luck with finishing this chemo, hope staff are being very nice to you.
@20mum wishing you a smooth path through referral, investigation and any treatment necessary.

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green0lives · 23/07/2020 19:15

Hi, newbie here. I've just read this thread and my respect for each of you is huge. I feel like a bit of a fraud as no diagnosis, but am currently on the 2ww pathway for suspected skin cancer. I have a large changed mole and some pain/aching and am beating myself up hugely for not getting my suspicions checked out much sooner. Glad to have found a place that I can say all this as I feel there is no need to worry family/friends yet.

Bloodybridget · 23/07/2020 22:11

@green0lives, no need to feel like a fraud, the thread is for anyone who is facing the possibility of a cancer diagnosis as well as those further on. Waiting for tests is no fun, do you have someone to hold your hand irl? You'll find plenty of support here, anyway, hoping for the best for you.

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Bloodybridget · 23/07/2020 22:14

Oh sorry, I see you said you hadn't told anyone about your concerns.

OP posts:
Toofaroutallmylife · 23/07/2020 22:24

Hi @green0lives - this is a safe space for people waiting for results, investigation etc. It’s very hard if you don’t know how much to worry! Please don’t beat yourself up. I was so on top on checking my moles, but when I saw discolouration on my vulva I assumed it was collateral damage from childbirth. Err no!

The standard advice is DO NOT GOOGLE! This is really important for skin cancer worries because the treatment and prognosis has changed massively in recent years. Do you have a date for next steps? Please message me if you think that would help Flowers

BitOfFun · 23/07/2020 23:08

Welcome @green0lives- we are all here for you to sound off too, especially if you've told nobody. Are you sure there isn't someone in your real life you can speak to? It's hard on your own.

BitOfFun · 23/07/2020 23:09

Excuse typos, btw! Drug-addled and all that...

green0lives · 24/07/2020 08:37

Thanks all, staying off Google is good advice and I'll be sure to do so. I don't have a date through from dermatology yet, just waiting for the letter. Sorry I should have mentioned that my DH is supporting me irl, but I think he's very much in the 'everything will be fine' mindset whereas I can't shake the feeling of dread. Sending you all the best with whatever you are facing today.

ElaineMarieBenes · 24/07/2020 10:41

Hello @20mum & @green0lives - wishing you a steady journey during this difficult time.

@greenolives I haven’t talked about my diagnosis with any of my close friends or family in the U.K. (apart from my Aunt - and the family genetic results have now been received). I am happy with my decision - I don’t want to upset my (just about!) adult DCs or my friends and there isn’t anything they can do. Youngest D.C. told me I was looking well on a recent zoom call just before surgery! I am happy with my decision - but obviously a very personal decision.

@balkanscot thinking of you today and everyone else undergoing tests and treatment.

20mum · 24/07/2020 10:47

Thank you for best wishes. Is there anyone who could suggest ways to be informed?

Thymeout · 24/07/2020 12:48

20mum If you can't afford to pay, I'm afraid that your GP is the portal from primary to secondary care in a hospital. When I had a dodgy mole, I was referred by GP to dermatology hub and they referred me to the nearest teaching hospital for excision and biopsy. All on the 2 week pathway. Not malignant. Just a black freckle on my lower leg.

Similar when I had something on my nose, spotted by GP in an appointment for something else, but not referred onwards to teaching hospital. 14 yrs ago. Still there. As am I, so assume dermatologist was right saying it was harmless.

I'm v sorry you've had such disappointing experiences, but skin cancer is unisex so I wouldn't get too hung up over women being treated differently. Have you googled the QCC (?) report on your local hospital? I do understand your misgivings, as my local general hospital had a bad rep but is now under the auspices of King's. When I had colon cancer surgery recently, I googled my surgeon and couldn't have asked for a more impressive c.v. My op took place in the local hospital, but he has been brilliant.

I think that under the NHS you're entitled to ask for a second opinion, but you have to get a first opinion through the usual channels before this comes into play. Annoying, if you're worried, as of course you are, but logical if you think of the consequences of 'if everybody did it'.

Hope you get some answers soon. You don't need a relationship with a GP's practice. I hardly ever went to my GP either. I think they take me more seriously because I'm obviously not someone who goes for minor problems. Tho' with hindsight, it might have been better if I had. I did have symptoms but put them down to getting older. I count my lucky stars that I was diagnosed early-ish because of random twists of fate. Smile

Zorgothslugofdoom · 24/07/2020 19:39

I don't post much, but I do lurk! I hope everyone is feeling as ok as they can! It's gruelling going through testing, diagnosis and treatment, but this group has been a massive help, with both support and advice/knowledge.

I had herceptin number 10 today, so am now officially past half way and can start counting down to January!

I wanted to ask if anyone has experience of continuous "dire rear". I've had a really tough couple of months with abscesses and other infections, and have been in and out of hospital loads! Fed up with hospital food. Anyway, I now have the dreaded "dire rear", which was maybe caused by so many courses of antibiotics. It's being investigated, but I'm on day12 now, have lost 12lb and can't eat anything without it reappearing an hour later!! Any suggestions welcome!

InOtterNews · 24/07/2020 20:21

@Zorgothslugofdoom nothing like on the scale you're having but for me things like arrowroot biscuits help to clog things up a little. Good old rich tea do the same thing.

I'm still here as expected. Had a terrible night with spikes in temperature, vomiting and what feels like the worst migraine. Now on morphine (way hey) and just sleeping. I have accepted that I'm going to be here until Monday.

The cat has also been found (in neighbours shed)

balkanscot · 24/07/2020 20:27

@green0lives - advice re: DO NOT GOOGLE is worth its weight in gold. I have been guilty of it too many times, though. Blush However, I reigned myself in for the past two weeks and felt SO much better for it. Good luck, I hope it all turns out OK in the end.

All scans are clear!!! No indication it has spread, it all seems to be confined (and contained) in the lymph nodes. But because it’s tricky to get it all out completely at present, the consultant suggested to do chemo first to shrink it (it’s 26 mm x 23 mm) which, according to him, would make surgery more successful. Next week I meet with the doctors/nurses to hear of the time table but basically it’s a 4-month chemo course! Because I am fit & healthy otherwise the consultant thinks I will get through this OK. So, not an ideal situation as the bastard has made itself comfy again, but encouraging to hear it is contained. It’s also exactly the same stage as the first breast cancer: stage 2, HR +.

Thinking that someone up there really didn’t want me to be a woman. First I have to have both breasts removed, then ovaries, and now hair (albeit temporarily).

Waving to @ElaineMarieBenes - good luck for tomorrow!

Off to have 🍾. I have also had a little cry - part relieved, part scared I have to do this all over again with the added joy of chemo on top.

Zorgothslugofdoom · 24/07/2020 20:34

Thanks for replying - really hope the morphine let's you have a better night, and that you get to rest and recover over the weekend, and get home on Monday.

Bloodybridget · 24/07/2020 20:44

@Zorgothslugofdoom sorry to hear you are suffering badly with the Dire Rear. I haven't any useful advice, but hope it calms down soon.
@InOtterNews much sympathy for your extended hospital stay, along with beastly migraine and vomiting - but I hope the morphine gives you a good night, and that you feel much better tomorrow. V glad to hear that your cat has turned up!
@balkanscot it is of course rubbish for you to have to go through treatment again, but I'm so pleased there's no spread and the prognosis seems good. Enjoy the fizz!
Sending good wishes to all, special thoughts to @ElaineMarieBenes for tomorrow, and to everyone who's in a hard place.

OP posts:
gillmoregirl · 25/07/2020 00:58

@balkanscot Was thinking of you. Good to hear that it's contained and plan is in place. Enjoy those bubbles. Well deserved. Xx

Piggles39 · 25/07/2020 12:01

I haven’t been on this thread yet but was on the last couple, I was diagnosed with inflammatory breast cancer in October, which had spread to some lymph nodes. I finished chemo in March, and my surgery has been delayed due to Covid, so I’m currently just on herceptin and pertuzemab.

@Zorgothslugofdoom sorry to hear you are struggling with diarrhoea too. I spoke to my consultant about it last week, as it’s been getting steadily worse for me the last couple of months (I’ve been on herceptin since December), and he said the problem is typically due to the pertuzemab I have at the same time as the , rather than the herceptin. I don’t know if you’re on that too? Anyway he is letting me skip the next round, as it’s due the day before my surgery (I finally got a date next month for the surgery I was supposed to have in April) and if that helps, he may then slightly reduce my pertuzemab dosage going forward.

Otherwise what seems to help me is eating very plain things like bananas, definitely nothing spicy, then eating little and often rather than big meals, and drinking plenty of very weak squash. The consultant suggested taking Imodium when it’s very bad but I find that tends to give me the opposite problem so I try to avoid it.

The best practical tips I found online are here (lower half of the page): www.breastcancer.org/treatment/side_effects/diarrhea

Piggles39 · 25/07/2020 12:13

Now I’m back I’ll keep posting!

I finally have my surgery date which is Saturday 8 August, for wide local excision x 2 (I had two tumours) and sentinel node biopsy. But I’ve been told I have to be admitted on the Friday to have guide wires inserted and dye injected, then stay in for two nights until the Sunday. Apparently they can’t do the wires/dye injection the same day as the surgery and they don’t want to let me home in between due to the virus risk. We’re already having to stay in isolation at home and not go out for two weeks in advance.

I’m feeling pretty down about being in there two nights with no visitors (originally I was told I’d just be a day case so this has come as a bit of a shock) and would really appreciate any tips and words of encouragement anyone has.

ElaineMarieBenes · 25/07/2020 17:12

@balkanscot glad you have some good news and POA.

Today’s appointment is over - some good news to report from me too (I think) in that no further spread past the one lymph node (all others are clear!). Further updated report confirms both ER & PR positive but Her-2 Fish final report still not finalised! I am now waiting an appointment with the oncologist later this week to discuss next steps re further treatment (which may only be hormone therapy? But could include radiation &/or chemotherapy?).

I also need to separately arrange the BRCA test (report prepared by my doctor) this week - though the ‘testing’ will be done in Europe (I should have been in London this week and staying for a month - but now unlikely to get home anytime soon!). Assuming it is positive I will have my ovaries removed. I have visions of ending up like Monty Python’s Black Knight with lots of bits missing and convincing myself just have a couple of flesh wounds!

Apologies but feeling exhausted - I only found the first lump in early June! Not sure what I was expecting today as I know it’s far from over and @Zorgothslugofdoom yes it is gruelling! @Piggles39 sorry you can’t have visitors. During my two days I did sleep a lot! They don’t like to give morphine where I am but understand they do in back in Blighty!

Zorgothslugofdoom · 25/07/2020 22:06

piggles thanks for the info - am going to read and follow the advice. I'm only on herceptin, so I don't think it's due to that. I'm a C. Dificile carrier, so they're now checking for that. Managing more fluids but not much food!

With regards to hospital stays - I always take an extension lead for charging my phone and ipad. Usually find hospital has free wiki, so I usually watch rubbish on TV! I have prime and sky, so often take a couple of books downloaded on my ipad aswell. I would also take some nice snacks - when I was in wythenshawe the last few times, they didn't allow visitors, or let me off the ward - so no opportunity to supplement their "menu" with treats!

Thymeout · 26/07/2020 10:23

Does anyone else have a problem with morphine? In general, on Mumsnet, people seems to v positive about it and think of it as 'the good stuff'. But I hate it. It messes with my head, makes me paranoid and disoriented when I wake up. Once, I thought I'd been moved to a different ward overnight and wondered why they'd covered the ceiling in my bedroom carpet at home.

Then I had this weird after-image thing going on. Every time I closed my eyes to try to sleep, I saw a pin-sharp photograph of whatever I'd last been looking at, e.g. a page from my address book. If I stared at it for too long, it turned into a tree with birds hopping around, like an animated William Morris wallpaper. I also take paroxetine long-term, so wonder if it's a bad combination.

When I had major abdominal surgery at a London teaching hospital, they were against prescription painkillers and I managed perfectly well on max doses of paracetamol and ibuprofen. But at the local hospital recently, they handed out morphine like sweeties. I asked the docs on a ward round for an alternative, but no joy.

Apart from being chained to the wall with drips and drains for a week in a bay full of patients who'd ended up there because of addiction or eccentric diets (including a 5G conspiracy theorist), the morphine side-effects were easily the worst thing about my surgery.

Btw, I didn't need any painkillers when I went home. Just avoided doing things that hurt! Perhaps it's just me? Nicotine is my drug of choice. I hate feeling drunk or woozy. Will pass out under the table long before I feel like dancing on top of it. Grin

Best wishes to everyone else, especially the colon cohort. I'm in limbo atm. Trying to extend my walking limits after chemo and shielding and not to think about scope and scans in Oct/Nov.

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