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Cancer support thread #82

999 replies

MrsPnut · 12/02/2022 22:14

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

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Fantasea · 16/05/2022 21:03

@AGreatUsername welcome to the thread no-one wants to join, hope we can help you on here whilst you wait. I was diagnosed in December 2020 with OC stage 3c. CT scans can prove unreliable, mine showed an 18cm 'ovarian tumour' which turned out to be a uterine fibroid in surgery plus I had a 'large epigastric lesion' on my omentum which was considered by doctors to be a secondary but tested benign. I did have disease on both ovaries but I do know that ovarian cysts can cause abdominal fluid. You will feel better once you know what you're dealing with, I didn't believe it when everyone on here said it, but it's true, it eliminates all the 'what ifs'. Of course you're sad and worried, it's all overwhelming when it's happening and you feel out of control, it's horrible. I'm happy to answer any questions you have Xx

thereisonlyoneofme · 17/05/2022 11:37

Im quite relieved today, my CA 125 level hasnt moved since last month. Got a scan today but hopefully it will still be clear. Ive had a feeling of doom over the past week so a cloud has lifted somewhat (temporarily at least)

MrsPnut · 17/05/2022 11:40

I’ll join you with the scanxiety @thereisonlyoneofme I’m waiting for an MRI scan and they are running late. I hate the noise and the feeling in the machine too.

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Fantasea · 17/05/2022 13:30

@thereisonlyoneofme good news on your CA125, I put myself through the wringer with that each month. Hoping your scan is clear and yours too @MrsPnut Xx

AGreatUsername · 17/05/2022 13:59

Thank you @Fantasea , can I ask how your journey has been so far? I am so focussed on the debulking that I haven’t really thought about anything else yet. Prognosis or anything. Although it actually made me feel a little sick to type that word so maybe it’s more I don’t want to think that yet. That this is life now. If it IS cancer I have no idea what stage it would be, she said if it was in the omentum as well it’d be stage 3 so I’m assuming stage 2 if all is as it appears when they open me up.

I think you’re right, I’ll feel better once I know 100% and the masses are removed too, I’m currently so horribly paranoid about them growing at a rate of knots that I can barely sleep. I’ve had my pre op this morning and am just hoping and hoping a cancellation comes up soon and I can move on down the line.

Silkierabbit · 17/05/2022 14:25

Thanks AGreat Hope the GCSEs are going OK. You must have your work cut out with 4. We are three gcses exams and 1 MFL speaking down here 24 exams to go but the kitten is making DD super chilled which is great. I am also pretty relaxed about it for her, the chemo exhaustion helps with that.

My DH did not have a good reason to be late, he is just very rigid on times, my DS is asd and I suspect he gets it from DH. He is wonderful most of the time at home and is doing all the cooking atm and collecting all the shopping so overall I am very lucky but he does not get emotions and is often very late to things.

I have been kitten sitting this morning, he is so very cute and was on the bed, purring away and whistling and feet in the air, also playing and exploring like crazy. Its been non stop and now he and me need a big sleep and DD has returned to take over her baby.

I have oncologist on Thursday and Head of Stat Assessment again, now hoping to get some sleep as none for 2 nights and am shattered. In theory next chemo is Monday, was worried as no bloods done last chemo or chemo before and not sure if they will go ahead but I asked for bloods last time and they said no.

Hope scan went OK MrsPNut I find some MRI machines, the wider ones fine but I dislike the tight ones. The last one I had was fine, wide with music.

Love to everyone else.

Stomacharmeleon · 17/05/2022 14:26

My diagnosis was unusual in that I already had numerous bowel surgeries (for Crohn's) and that they did a PET as they suspected a tumour on my bowel (blood supply to it)

Whilst I had my PET my neck, lymph nodes and thyroid lit up like a Christmas tree (their analogy). When we went to hospital to have Botox in preparation for my bowel op we were met by ENT surgeon who aspirated my neck. They said there and then it was cancer even before the results. I suppose they know it when they see it.

I heard so many times in hospital when having surgery on neck ' it's incidental cancer' 'your so lucky they found it' or ' how did you not know you had it' (perhaps because my crohns goes from my throat to my arse....)

So am now waiting for major op part deux- so Botox in bowel first then they have a window to operate (six weeks) oh and maybe prehab squeezed in somewhere as I had stridor after surgery and had to be reintubated...

I know I have said this before. I am sorry for repeating myself. I still can't speak properly. Even the consultant put I sounded 'gruff' on the phone.

Have youngest starting a levels next week. Everything is changing. I just feel stuck.

Fantasea · 17/05/2022 17:02

@AGreatUsername Yes of course - I had 6 cycles of chemo, carboplatin and paclitaxel, from January to June 2021 with debulking surgery in the April after the fourth cycle. I had a total hysterectomy, both ovaries, omentum and also some endometrial lesions on my peritoneum removed. Then there was a huge faff over a lesion on my liver ligament which had shown on my original CT in September 2020 and, at the time, they'd called a 'cyst'. I realise now they had bigger fish to fry than that. I had an US of this lesion, an aborted biopsy, an MRI, another US with a view to a biopsy, and then they decided it was indeed a benign haemangioma. This delayed me until September last year when I had to kick up an enormous fuss to get onto the maintenance chemo which the onc had recommended in June, because by this time I'd exceeded the NICE guidelines in terms of weeks to begin due to my liver lesion. I finally went onto NIraparib as maintenance at the beginning of October and am in my eighth month on it now. I take these daily as tablets at home. It makes me very tired, my mouth is often sore and I take daily laxatives. I will be on this treatment for as long as it's working and I can tolerate it, but with OC 3c, a recurrence is likely and I will come off it then. For all of it, I'm happy be treated and to be still here, there were some truly dark times at the beginning of last year.

You're doing exactly the right thing on just focussing on the next step, take one bit at a time until you know. Good news you've had the pre-op so you're ready should a cancellation come up, I'm hoping you can get in sooner than your booking date. It must be tough with your DS doing GCSEs with all this going on too. Regarding not sleeping, I went onto beta-blockers at the start of all my troubles and have been on them since. They 'take the edge off' my raging anxiety and allow me to sleep most of the time. Your GP will be happy to discuss your sleep and prescribe something to help you over these things, don't think you can't ask, one of the side-effects of being even partly in Cancerland is that GPs are really happy to assist.

@MrsPnut hoping the MRI was ok. I've only had one and everyone had said the 'tunnel' thing was awful but that was the least of it for me. DD25 had lent me one of her sports bras so that I could keep it on throughout. It must have been a 28A, when they said to hold my breath for what felt like hours, all I could think of was how tight this bra was as I could hardly breathe with it on. It's funny now but omg, at the time it made me feel so panicky. I've since invested in a Sloggi one for my scans which is so light and comfortable.

@Stomacharmeleon you poor thing, not being able to speak properly must be so frustrating for you. You have so much on your plate, all this worry plus A levels. I'm hoping that things get organised soon for your next surgery.

@Silkierabbit thinking of you too with chemo and GCSEs. I only had myself to concentrate on throughout treatment, it must be so hard with children.

MrsPnut · 17/05/2022 19:43

MRI was aborted today, the coil they lay over you wasn’t connecting properly and I was in and out of the tunnel so many times. They are ordering a new one and I am rebooked for 6pm next Tuesday instead, they offered 8am on Monday but DD has a GCSE at 9 and we are driving her in on exam days in case the bus is late.
@Fantasea I luckily only wear soft crop tops anyway, bras pushed up my damaged area too much so stopped wearing them. I made sure I could remain fully dressed for the scan.

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HauntedDishcloth · 18/05/2022 09:41

@MrsPnut You must be used to cock ups & delays by now - unfortunately so!

I actually like the scan experience, once I disassociate it from the reason why I'm having it. I like to imagine I'm in a space-time vehicle - yes, I am a bit of a Sci Fi geek 🤓

Chemo day for me - already had awful time getting here due to a road closure then found my prescription's not been done so an indefinite wait & there's constant background drilling noise from building works ...Going on hol on Friday & there's so much to get ready (self-catering) so I'm sitting here making lists!

MrsPnut · 18/05/2022 11:22

@HauntedDishcloth Unfortunately that is true. I was talking to the nurse at my GP’s this morning because I am having problems getting dressings from the pharmacy and she commented that it’s amazing that I just keep smiling despite all that has happened.
I’ve just got to get on with it, skin breaking down, hole in my chest, sore vulva and all!

However, last radiotherapy today so something to look forward to.

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TwoBigNoisyBoys · 19/05/2022 19:15

Hi everyone. Hope you’re all ok/bearing up with your journeys?

So, I tested negative yesterday, at last, 8 days after my initial positive LFT. Was lucky to get away with very mild symptoms, just like a heavy cold really. Was put on some new anti-viral drugs, (paxlovid) so not sure if the mildness of the virus was down to them?

Well, my surgery got cancelled 😩 not surprising really. It was due to take place on Monday, but that’s not going ahead now and they haven’t given me a new date yet. The surgeon has said it’s now down to the anaesthetist as to when it will take place, but my BCN said it could be as long as 7 weeks in accordance with policies surrounding covid…I’m so upset about this. What if the lump grows back in the meanwhile, after all that chemotherapy? I was grade 3 so they know it was fast growing. Feeling very low and miserable and worried.

Sorry for moaning.

Sending you all love, as usual xx

TwoBigNoisyBoys · 19/05/2022 19:15

Ps @MrsPnut Hope your last radiotherapy went ok xx

MrsPnut · 19/05/2022 20:31

@TwoBigNoisyBoys The radiotherapy went fine thanks, manage to go pink today though after 2 hours in the garden with a friend.

I had surgery without clear margins and then had chemo with a second surgery after that had finished. The remaining cancer hadn’t grown at all so hopefully yours will behave whilst you have to wait.

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Stomacharmeleon · 19/05/2022 21:14

@TwoBigNoisyBoys sorry about your surgery being cancelled. Hopefully you will get a new date quickly.

Silkierabbit · 19/05/2022 21:53

Sorry surgery got cancelled TwoNoisy I think guidance is 7 weeks but I have seen someone successfully argue it down, think guidance was set when it was pre vaccines and a lot more risky. Hopefully they will give you a new date soon but if not I would call and explain how worried you are etc and that you did not feel very ill from covid and your cancer was grade 3 and you will take cancellations. Then will probably budge on date.

I just had oncologist today, they need to do 6 more weekly chemos ideally but are cutting back the steroids by half as they make me so anxious and depressed. Have trialled it first time this week and a lot less anxious so far but did get a bit more sickness but that is much easier to manage.

GCSEs going fine here helped by Mr Floof. Love to everyone.

Fantasea · 19/05/2022 21:59

@TwoBigNoisyBoys I'm so sorry to hear your surgery has been cancelled, no wonder you so dreadful, it's not what you need. I second the advice of Silkie and hope this will get you in for a cancellation sooner Xx

mowly77 · 20/05/2022 14:12

Vaguely checking in as I sit in hospital still waiting for results of a blood test to see if I
need a transfusion or if I can fuck off. Blood test booked for 10.30. Done at 12.30 & massive faff to get all the right equipment for my weird blood. I am so fucking fed up
of NHS inefficiency right now. Even if I get to go home soon it’s two buses, I’ve missed the whole day with DD and my Dad who is visiting, but not for long.

The Marsden have also backtracked and said having 3 weeks on & 1 off chemo won’t make a difference to the overall treatment & that the side effects need to be carefully managed along with my blood issue. So that’s fucking confusing although I guess reassuring but the consultant is so busy it seems like he’s just quickly dashing off a note that says yes yes whatever her local oncologist says. Even though he said something different when I saw him in person. I could be wrong. But he has so very many patients I feel like we’re all on a conveyor line and the only person really & properly advocating for my own care is ME and I’m not a medic. Although I feel like one now. My incredibly rare and unfortunate blood disease (16 in a million people apparently) is causing pains in my lower legs which is stopping me sleeping well & I’m incredibly tired mentally and physically and v grumpy.

I am supposed to be going to a gig (imagine!) and staying in London Sunday for my Dad’s birthday. So that’s why I’m grimly waiting in this effing hospital again. If I need a blood transfusion I’m going to bloody get one. No chemo this week so thought I’d feel ok. Yeah I don’t. But I could probably manage some of the gig at least.

Huge heap of negativity there. Rant over! I’m glad Mr Floof is doing well and being cheering and those with kids’ exams are going ok. I feel like Mr Floof is this thread’s bright spot now. Hope everyone is doing as ok as they can be as we sail into this weekend.

Thymeout · 20/05/2022 18:45

Mowley. Yeah. Difficult when they have to balance co-morbidities. Not a medic either, but can see that it's logical to go softly, softly with chemo in the circs. If blood reacts badly, you could end up with fewer sessions overall than if you do it gently.

My co-morbidity is old age. Have now managed to argue myself into a state of mind that the silver lining of cancer coming back if it does is that at least I wouldn't have 5 years of dementia like my mother. Would prefer to avoid both, of course.

Having successfully negotiated a 5 bus and 1 train day to a pub lunch with an ex-colleague, my next goal is a Bob Dylan tribute act which will involve a journey from SE to SW London, which, as any fule know, is no easy matter. It'd be quicker to get to Luton.

Best wishes to all, especially Top on her Odyssey.

TwoBigNoisyBoys · 20/05/2022 21:26

Thank you everyone for your lovely messages. Pleased to say my BCN called me earlier today, surgery’s now booked for 13th June. Very relieved as she reassures me that the 3 week delay won’t cause any concern as far as lump growth is concerned. Booked for pre-op next Tuesday.

Had a lovely evening celebrating my parents wedding anniversary, and I’m now in bed - can’t take the excitement like I used to!

Hope everyone has a relaxing, peaceful weekend. Love to you all xx

Fantasea · 20/05/2022 21:44

@TwoBigNoisyBoys oh what good news, you must be so relieved! Not long to wait and the pre-op next week too, so you're on your way Xx

TwoBigNoisyBoys · 20/05/2022 22:02

Thank you @Fantasea, I’m feeling very much more relieved about it all, just want it over and done with now!

Silkierabbit · 20/05/2022 22:23

Mowly Sorry things are still very difficult. I have had 3 weeks off and 6 weeks on for my chemo and I was worried but looked up a research paper which showed same success rate with gaps in treatment so think its OK. It was a lower success rate with a gap before treatment but once in seemed OK and even before treatment I think it was something like 95% of the max success rate, not ideal but a lot better than no chemo but think almost everyone has the gap before atm in NHS. So think 3 weeks on 1 week off will be fine and will help minimise long term side effects though its a pain its makes is longer. I have 6 to go out of 12 but they will almost certainly need to add 2 weeks for gaps for neuropathy and possibly a further one for PICC (though good luck with a PICC and kitten combination) so expecting it to go on until end of July unless they stop early. Then I will have radio so think it will take the entire school holidays, great but maybe can get away somewhere in UK inbetween the two.

That's great operation is 3 weeks away TwoNoisy and pre-op is so early, it may even be moved earlier if there is a cancellation and they have done pre-op that early.

Reduced steroids is much better for me though needed 1 extra ondansetron to get through so 3 a week but I feel less anxious and not depressed now. GCSEs week 1 has gone well, 7 exams done and DD completely calm thanks to Mr Floof. She also did orthodontist and a summer punting job interview. She has been an absolute star this week. 5 more weeks until they are all over.

Few more kitten pics. The one on the cat tree is at the person who kitten sat him whilst I did chemo and he went on their Maine Coon's cat tree and looks very pleased with himself for stealing it. Have chemo on Monday assuming can get cannula in and bloods and radio first appointment by phone on Thursday and more on DS EHCP again. Plus sorting house and silkie is moving outside again as warmer weather and 2 more silkies arrive on Friday. Cleaner comes for a second one off on Sunday and DD has requested her room. And if that was not exciting enough 5 more GCSEs and a special rubbish collection just incase anyone wasn't convinced I was living the dream atm. Grin

Cancer support thread #82
Cancer support thread #82
Cancer support thread #82
TopOfTheCliff · 21/05/2022 13:29

Greetings all from Orkney. I am a bit astonished we have made it all the way up here. I have sailed nearly 1000 miles and DH has cycled 2000. His bike broke a few days ago and he had an epic 17 hour ride getting in at 2am. He has fixed it all now and is off exploring while I lounge about eating chocolate. Although my joints hurt it’s no different to being at home.. I am trying to rest up for a day or two then we will attempt to reach Shetland. When it gets rough or scary I just remind myself that I have coped with cancer treatment and this is a walk in the park in comparison. We have raised nearly £3000 for the green cancer charity so far and it has been good fun with a few incidents to spice things up.

Great news that @MrsPnut has finished radiotherapy and @TwoBigNoisyBoys has an operation date. @Thymeout I am amazed at your stamina crossing London! As a country bumpkin I would rather sail to Shetland than attempt that. @mowly77 I do hope your blood results came back either very good or bad enough for a transfusion so you have lots of energy for the socialising.
To all of you with DC going through exams good luck to them all. To those waiting for results or treatment we have your back.
Best wishes
Top

Tryhardermum · 21/05/2022 18:40

Hi, I was diagnosed with invasive breast cancer, grade 2, stage 1, five weeks ago. Surgery scheduled for Friday. I’ve had a nightmare with the bc unit -I’m claustrophobic and not sure I’ll be able to go through with the assessment CT scan and radiotherapy-hospital rubbish at supporting me. Just said I’ll have to have a mastectomy for a 12mm lump if I can’t undergo radiotherapy. Has anyone else been through this? Any advice would be so gratefully received.

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