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Cancer Support Thread 84 - gently crunching our way into autumn

1000 replies

mowly77 · 24/09/2022 06:49

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

OP posts:
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AGreatUsername · 24/09/2022 08:38

Thanks for starting the new thread Mowly.

As is tradition I’ll kick off with a brief intro for newbies or those of us who can’t keep track.

I was diagnosed with stage 3 low grade ovarian cancer in May following some mild bloating. I’ve since had debulking surgery and am halfway through a 6 cycle chemo course which started on pax/carbo but is now Abraxane/carbo.

Currently waiting for PET results following a spike in CA125.

I am 37, have 5 children and live in South Wales. Just about to start a part time return to work in the civil service.

Welcome to anyone just joining, this is the nicest thread you could find.

NanaNelly · 24/09/2022 09:11

I have a diagnosis of stage 1a Mucinous Ovarian Cancer that didn’t require chemotherapy but I did have what was known in old money as a ‘nervous breakdown’ the day my gigantic cyst was discovered. I understand only too well what it means when the shock and terror that goes hand in hand with these situations becomes something else entirely.

I’m still under the care of my psychiatrist but only because I need to see him to receive my medication which is now a much smaller dose than it was when all of this started. I also see a therapist who specializes in women's health and living with/coping with serious illness and all it can bring. Apart from all of that I’m not much use to the thread but being here gives me courage and I’m forever grateful to the women here for everything.

On a different note I have 5 adult children and 8 grandchildren. My youngest child is severely disabled due to ASD and a few of its co-morbids but thankfully I still have him at home with me alongside a team of live in carers who are everything to us.

I travel (alone) any chance I get and I run a volunteer group working with young adults like my son.

I don’t live in the UK but I visit a few times a year and spend time in Scotland where I was born many moons ago and South Wales where we ended up.

Podgedodge · 24/09/2022 09:40

Bit the bullet and asked for flexible working, hopefully four days per week. Have been doing phased six week return, three days was hard this week four days in a row had me on my knees. I feel pathetic and teary, but am aware all this is ‘normal.’ But if one more person asks if I have considered counselling I think I will scream. I have had a hideous 18 months with the cancer only being part of it, and I am just not ready to speak about it all yet. I know counselling is out there, I’m sure I will make use of it at some point when I am ready. I also know people are being kind and thoughtful but do they really think I haven’t thought of it myself?
on the surface I am fine, my hair is growing back thick and strong, all my side effects, neuropathy, hot flushes etc are well under control. But I want to go back to my cocoon and not interact with anyone except my daughters and my cats. But I als want to get paid🤣
Just needed to vent!

Chocolateismyfavourite · 24/09/2022 12:02

Hiya, thanks for the new thread.

Hope everyone is feeling ok, I've taken my two youngest boys to the park this morning and meeting a friend for a coffee this afternoon l, wich will be lovely, trying to focus on what I can do and not can't, wich would usually be a 2 hour live zoom yoga class and today it's back bends including my favourite, Scorpion Pincha.

My chemo that was meant to happen Thursday is now happening Monday at 11 🤞 - I won't believe it until I'm hooked up to the drip though after all the faffing around this week.

Anyway, hope you all manage a lovely Saturday, doing whatever brings you a little bit of joy.

TopOfTheCliff · 24/09/2022 13:13

Hello new thread! Thanks @mowly77 for setting it up.
I am an old lag as I have been here far too long. In 2020 I had a triple positive Breast Cancer on the right side which got the full kitchen sink treatment with FEC-THP chemo lumpectomy full node clearance and radiotherapy. I got fit, lost weight, shaped up, gave up alcohol and got my life back.
This July I found a new lump on the other side which is a small nasty Triple negative grade 3 breast cancer so back we go to the beginning. No connection apparently!
I am now halfway through EC chemo waiting for my hair to fall out and trying to avoid eating too much cake.
Today I woke early and my daughter dragged me out to do the 5k Your Way for Cancer Parkrun. I puffed round half of it which made us happy. I’m actually feeling reasonable considering it’s day 5 so feeling optimistic I can get through this.
@Podgedodge going for counselling is only helpful if the timing is right. I think we spend a lot of time in survival mode with our defences up trying not to feel anything so it doesnt help then. Once the horror subsides you can afford to unpack what has happened and examine your response to it. Obviously if you get overwhelmed along the way you need help but for most of us it is a matter if gritting your teeth and surviving from day to day without thinking too much about the existential threat. I have been offered a psychologist by my BCN but honestly I think they should be helping people who are struggling not me. I find being outside gardening or pottering round the house is all I need at the moment. You know what is good for you so just do that!
sending positive waves to all

Top the thread Tigger

SierraSapphire · 24/09/2022 13:41

Thanks Mowly

I am another with two not obviously connected cancers, though mine were concurrent and in a similar place, one stage 3a grade 1 endometrial cancer, and then discovered after I asked for a second opinion on the histology of the first one, a stage 1a high grade serous ovarian cancer that my original hospital missed. Hopefully all was whipped away in my hysterectomy but I am (slightly under duress) through three out of six cycles of carboplatin and paclitaxel to reduce the risk of recurrence. I didn't have any lymph nodes taken as I was originally staged as 1a for the endometrial as they didn't see any signs of spread on scans or when they went in, so I'm incompletely staged, which adds to the uncertainty. I'm also waiting for BRCA results.

MrsPnut · 24/09/2022 14:20

Thanks for the new thread @mowly77 I am the world’s unluckiest patient with 2 primary cancers diagnosed within 10 days of each other in Nov 2020.

I had 5 rounds of cisplatin (which I am now allergic to) and 25 sessions of pelvic radiotherapy along with 3 rounds of brachytherapy.
Then I had a double mammoplasty and full axial node clearance where we discovered that my cancer had been more aggressive and had spread right through my axial nodes. 8 rounds of FEC-T followed with an extravasation of epirubicin from my port occurring at the halfway point.

I had a further surgery to get a clear margin in Dec 2021 and finally managed to have 20 sessions of radiotherapy in April 2022.
I now have peripheral neuropathy in my hands and feet as well as lymphoedema of the breast, arm and vagina.

I’m currently catching the last few hours of sun in Jamaica before we fly home this afternoon. I have my appointment with my lymphoedema lady booked for Monday afternoon, so I can get the swelling from the flight down.

mowly77 · 24/09/2022 16:30

Ooh @MrsPnut hope you got to enjoy the sun in Jamaica. I’m in bed with electric blanket on…

also an unlucky one. I had breast cancer 11 years ago & discovered I was BRCA2. No lymph node involvement but aggressive, so I had a double mastectomy & reconstruction (many surgeries) 5 rounds of brutal FEC & then was cast out of the system to get on with my life. Had a daughter who is now 4 and just started school, & had my ovaries taken out as risk reduction in 2019 which gave me a lovely surgical menopause oh & was a complete fucking waste of time because my cancer came back at the end of last year & I was finally diagnosed in March with a metastatic spread on the lungs, pleura and sternum. So I’ve had 16 lovely rounds of Paclitaxel, am due 2 more if I can stand it, then onto the next line of treatment which is tablet based. It is, frankly, a living nightmare.

But I’m looking forward to getting my PICC line out, going swimming, and being more functional. I’m a compete reclusive mess at the moment as the chemo has made me more & more sick. Scanxiety for next Friday when we see if the second half of the chemo has continued to zap the tumours. I really deserve some good luck.

OP posts:
Fantasea · 24/09/2022 16:44

Thank you @mowly77 for the new thread.

I have stage 3c OC finally diagnosed December 2020 after a huge amount of faffing around after presenting with 2 DVTs in the previous February. I had 6 cycles of carboplatin and paclitaxel January-June last year with major debulking surgery in April. I have been on Niraparib as maintenance oral chemo for a year now. I'm currently ramping up the scanxiety as I have a CT next month.

I was a very anxious person before all of this and my diagnosis has made things worse. I take beta blockers every day which take the edge off. @Podgedodge I can relate to your thoughts on counselling, I just am not in the right headspace for it and wonder if I ever will be. I've had CBT in the past and found it somewhat useful. My issue with it was that I knew the 'right answer' and felt there was an expectation to improve each week. I had a recent GP appointment after a panic attack over a chemo review and the GP kept pushing counselling which I said I would 'consider' just to get off the phone. I realise that no-one can give me what I want which is for my cancer to go away and never come back.

Welcome to any newcomers. This thread and the kindness of all the ladies on here has been a lifeline for me, thank you all Flowers.

thesandwich · 24/09/2022 16:51

Thank you for the new thread @mowly77. BC stage 2 diagnosed last year, surgery, chemo, and and radio as nodes involved. Now on anastrozole which is causing really unpleasant menopausal symptoms. Given the option to swap to tamoxifen but onc obviously not keen. This is harder to deal with than chemo.
thank you all for sharing your stories and wisdom.

Tryhardermum · 24/09/2022 16:59

Hey, ladies, just a few thoughts on the NHS and cancer treatment in response to some of the previous comments. Yes, quite shocking that on many forums, people just accept that their team know what they are doing and don't question them. I'm quite tired of seeing statements such as, 'Trust your team; they know what they're doing'. My mother-in-law has been diagnosed with breast cancer and has no idea what stage, grade, etc, it is, but just goes with whatever her team say. And this in the same hospital that misdiagnosed her husband's cancer, which meant he died prematurely. You'd think she'd learn. But we're made to feel soooooo grateful for any titbits of treatment the NHS can throw our way... because it's 'free'. I admit that I like to be in control and cancer takes that away from you, but I've been flabbergasted at the attitude of the majority of the team I'm under. I've been patronised at best and offended, lied to, criticised and slagged off at worst. For example, it took me 9 weeks – and the day before my surgery – for me to get an appointment with a radiologist so she could explain my mammogram and the tumour to me (and they still got it wrong). She said that some people don't want to know too much info and others can't process it. I asked about the protocols they used to decide how much to tell people. Er, there aren't any! A friend who works in hospitals said that in her experience, doctors think that only other doctors understand anything medical. I've complained, challenged, questioned, etc, and then found nasty things written about me in the nurses' clinic notes. I absolutely don't trust my team (I won't bore you with the details), and have tried to transfer twice, with no luck. I tried to change to The Marsden, but they were having none of it. I said I felt unsafe and not listened to at my current hospital and that I feared I'd end up dead so might need to stop my treatment altogether. Their response? 'Well, that's your decision'. The NHS is well and truly broken. Anyway, I actually do have a question – and apologies for my long message and thank you if you've got this far. So, diagnosed with grade 2 breast cancer: ER+, HER2-, 27mm, Ki-67 score of 7%. Had lumpectomy and full axillary clearance, as spread found in one sentinel node (all other nodes clear). Predict showed I was the borderline for chemo, with a 3.2pc added benefit. I'd always said I'd throw everything at it, regardless, and the oncologist said she'd have it if it were her (not that I set a lot of store by her opinion!). I asked for the Onco DX test, but was ineligible 'cos of lode involvement. I was worried that as Predict is a statistical tool, I might actually be high risk and so they would be under-treating me. So I started the chemo, as even if the test came back with a low score, I'd still have it; and if it was a high score, they'd tweak the chemo. Anyway, had to pay for the test (£3k; not rich, but took the money from the loan I'd taken out to have my roof repaired and damp-proofing sorted) and it came back with a score of 12 and an added benefit of 2pc. The oncologist said she'd discussed it with some colleagues and she'd recommend stopping chemo. I know the downsides of chemo, as mine have been terrible, but when your survival rate is 84pc, an extra 2pc seems a good bet to me. Again, sorry the the long post!

MrsMontyD · 24/09/2022 20:54

New to the thread, hope that's ok.

I'm waiting for breast cancer surgery which is happening in three weeks. Amongst the things I'm obsessing about is whether I should be getting the autumn covid booster before my surgery or not. I'm 50 next month so I will be eligible for the booster, but won't be called for a while yet. I'm not sure I qualify for the earlier priority appointments. Any thoughts would be appreciated.

thesandwich · 24/09/2022 21:12

@MrsMontyD hello, love the name- and the new puppy.
I would think you would be eligible- can you go through nhs booking site saying you are vulnerable and then take hospital letters as evidence? Speak to the bcn who should be able to give you full info.

MrsMontyD · 24/09/2022 21:18

thesandwich · 24/09/2022 21:12

@MrsMontyD hello, love the name- and the new puppy.
I would think you would be eligible- can you go through nhs booking site saying you are vulnerable and then take hospital letters as evidence? Speak to the bcn who should be able to give you full info.

Thanks, I have a copy of the letter to my GP (mine hasn't arrived yet) confirming my diagnosis, surgery date and expected treatment plan I can take. I also have an appointment next week for the radio transmitter thingy so I can ask then. I think I'll book a booster appointment, I can always cancel.

TopOfTheCliff · 24/09/2022 21:21

Hello @MrsMontyD and welcome. I booked my booster as I am on chemo but forgot to take the letters and nobody even queried it. Just tell them you are a cancer patient and they will be fine with it I am sure. Unless I look very pale and ghastly!

My hair is suddenly all falling out tonight. Shame,

Top x

thesandwich · 24/09/2022 21:42

@TopOfTheCliff sorry you’re going through it all again. 🌺🌺

ashitghost · 25/09/2022 16:18

Podgedodge · 24/09/2022 09:40

Bit the bullet and asked for flexible working, hopefully four days per week. Have been doing phased six week return, three days was hard this week four days in a row had me on my knees. I feel pathetic and teary, but am aware all this is ‘normal.’ But if one more person asks if I have considered counselling I think I will scream. I have had a hideous 18 months with the cancer only being part of it, and I am just not ready to speak about it all yet. I know counselling is out there, I’m sure I will make use of it at some point when I am ready. I also know people are being kind and thoughtful but do they really think I haven’t thought of it myself?
on the surface I am fine, my hair is growing back thick and strong, all my side effects, neuropathy, hot flushes etc are well under control. But I want to go back to my cocoon and not interact with anyone except my daughters and my cats. But I als want to get paid🤣
Just needed to vent!

Hi Podge, can I ask how you are treating your neuropathy and how bad it is? Thank you.

ashitghost · 25/09/2022 16:23

MrsPnut · 24/09/2022 14:20

Thanks for the new thread @mowly77 I am the world’s unluckiest patient with 2 primary cancers diagnosed within 10 days of each other in Nov 2020.

I had 5 rounds of cisplatin (which I am now allergic to) and 25 sessions of pelvic radiotherapy along with 3 rounds of brachytherapy.
Then I had a double mammoplasty and full axial node clearance where we discovered that my cancer had been more aggressive and had spread right through my axial nodes. 8 rounds of FEC-T followed with an extravasation of epirubicin from my port occurring at the halfway point.

I had a further surgery to get a clear margin in Dec 2021 and finally managed to have 20 sessions of radiotherapy in April 2022.
I now have peripheral neuropathy in my hands and feet as well as lymphoedema of the breast, arm and vagina.

I’m currently catching the last few hours of sun in Jamaica before we fly home this afternoon. I have my appointment with my lymphoedema lady booked for Monday afternoon, so I can get the swelling from the flight down.

Hi Mrspnu, I also have neuropathy in hands and feet from cisplatin. May I ask if/ how you treat it and how bad it is? Mine is life changing. Thank you.

ashitghost · 25/09/2022 16:33

Hi, I am in remission from mediastinal germ cell cancer. I had one round of carboplatin and etoposide, then four rounds of Bleomycin, Etoposide and Cisplatin. Then sternotomy to clear remove the remains of the tumour.

I have been left with neuropathy that means I can barely walk and when I do I need a stick for balance. My arms and legs are constantly ringing with pins and needles as pain. I’ve tried lots of meds and two different spinal cord stimulators. But nothing has significantly helped. It feels like I beat cancer, but chemotherapy has left me with a form of half life.

Runningwithoutstopping · 25/09/2022 16:51

I was diagnosed with stage 4 ovarian cancer in June 2020 just a couple of months before my 50th birthday. I had 6 rounds of paclitaxel and carboplatin and a full hysterectomy. After chemo I had a year of Avastin. I
I was a psychiatric nurse however after cancer I found that I only had the energy to hold on to my mental health and couldn't return to work. Luckily for me my NHS pension paid out so I could retire on ill health.
Retirement suits me! I have the time to with my 9 year old I can get involved in school events without any other demands on my time I run, do yoga,potter in the garden and do the things I enjoy to help me live with the reality of cancer.
My NHS team have been fantastic when I was given my diagnosis I was very much in the mindset that I would trust them to come up with a treatment plan for me and my confidence in them worked for me. Since being on this thread I have realised that there is a discrepancy in care based on your postcode which shocked me. I was offered care that I thought was standard that seems not to be and it saddens me to read about the struggles that people have to go through.
@Fantasea I also have a scan coming up ,last week I was flying after speaking to my gastroenterologist who was going to restart medication to manage my Crohns. I spoke to my oncologist this week who wants to scan me to check that my bowel changes do indicate Crohns and not ovarian stuff . I'm keeping the dull roar of anxiety at bay by trying to find a outfit for my friends steampunk themed wedding next year.

Fantasea · 25/09/2022 17:53

@Runningwithoutstopping really hoping your scan is clear Xxx

AGreatUsername · 25/09/2022 19:48

@Runningwithoutstopping also keeping fingers crossed your scan is clear. I am so dreading Tuesday for the results of mine, I just want a break. To get through chemo and be NED. All my remaining hair is now white which is a surprise to me at 37 and having only had a grey streak prior to chemo! Cancer just gives gives gives.

@ashitghost that sounds so horrible, poor you. I’m only 3 rounds in and have neuropathy in my left hand and both feet but nowhere near to your degree so can’t suggest anything. You have my sympathy though.

Acinonyx2 · 25/09/2022 20:03

People with neuropathy - you 've possibly tried this and it might be too mild for your situation I don't know - but I also have post-chemo neuropathy (and now also arthritis) especially in my hands. By July it was really becoming difficult and I was quite miserable with it. I have had a lot of relief since then taking turmeric capsules (post-surgical chest pain has also subsided). Sympathies - it is a very debilitating and unpleasant side effect.

SierraSapphire · 25/09/2022 20:16

Alpha Lipoic Acid was suggested to me for neuropathy, also vit B12. I had some tingling after the first infusion in my foot and then took ALA and it went away and I've had two more since, but no idea if that's what made the difference. I iced my feet for 2 and 3. I was bloody freezing by the end with that and the cold cap!

I've got a lump on my hand where the infusion was three and a half weeks ago. It took them an hour to get to me to swap over paclitaxel and carboplatin and it had swollen a bit on the day, though the nurse said it hadn't gone into the tissues. It's been a bit hard and a bit painful since infusion, but it seems to have come out worse today, I phoned the chemo line but she didn't seem too concerned I just have to watch out for an infection. There's always something….

TopOfTheCliff · 25/09/2022 20:34

<<waves at @Acinonyx2 >> Glad things have slightly improved there!

Top x

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