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Cancer Support thread 86 - Stay Positive

996 replies

LemonDrizzle10 · 20/03/2023 10:40

New thread as other one nearly full.

OP posts:
Thread gallery
48
Lisdeflores · 24/03/2023 07:19

I had the result of my mid treatment scan yesterday and everything looks good and my ca125 has returned to normal.
My oncologist sounded a note of caution as the scan has not been fully reported but he is fairly confident that nothing will be found that he is unable to see.
So the drugs have worked and this pesky disease has been kicked to the kerb again and hopefully although it will never go away it will be managed in the future.

@WimbourneWasps I had a couple of close family and friends funerals 1 after diagnosis and 1 during treatment I didn't feel up to it. After a lot of soul searching I decided not to go I was sure that the individuals concerned knew how I felt about them and wouldn't want me to feel uncomfortable. I wish you well in your treatment x

Justanoldnana · 24/03/2023 07:57

Thanks, HauntedDishcloth, I'll look into hair toppers, I've not heard of them. They sound like they could work plus they might keep my head warm! 😁
Love your tag, by the way. 🙂

OrdinaryLife · 24/03/2023 08:19

onc appt went ok so many thanks for your support . We went in with the attitude of " I want to be here for my sons graduation in July - how can i achieve it? " And I had a few drugs I'd looked up to ask about. He wanted to leave chemo for a while but was happy to start sooner as I feel ok now and don't want to wait and get worse. So starting gemcitabine in about 3 weeks 😬 i am worried about facing the side effects of chemo again, particularly as I'm just getting the radiotherapy ones kick in 😕

@Justanoldnana I feel like that too and was have spoken to my husband about how if I can't manage the side effects of the gemcitabine, then I will have to stop and just have palliative care. I'm younger than you (54) so for now feel I need to try everything I can for my boys ( 20 and 22). But you're right about warriors and fighting - nope I'm just sitting here hoping the treatments work on the rogue cells .
@TopOfTheCliff how lovely to have your exercise class clap you - what great people. Also very jealous of your custard slice 😋
@AGreatUsername have you tried counselling? I've had it twice and I was sceptical but it has really helped taking to someone who is not emotionally involved. The most recent one was a cbt therapist who helped me take my disturbing thoughts and reframe them so I wasn't scared. I was amazed. That was through hospice but maggies centres, hospitals etc have them as well.

dotty2 · 24/03/2023 09:47

@Lisdeflores , so glad to hear your positive news. I hope your cancer stays on the kerb for a long time.

@OrdinaryLife , that must be a hard place to be. But im glad you feel the appointment was at least ‘ok’ and there is a plan. Are you home now?

@WimbourneWasps I had a full node clearance in my armpit but for breast cancer so I’m not sure if the op is the same. I think physically I could just about have gone to a funeral if I really had to a couple of days later. But it wouldn’t have been easy. Will you have a drain? I did go out with mine in a bag hidden under a long coat and baggy top but I know not everyone is happy to do that. My arm was very sore as I had some nerve irritation. I definitely couldn’t have driven. I didn’t drive at all for 2-3 weeks and still find long drives uncomfortable months later. I guess that depends on which side the clearance is though. (Left for me so changing gears still hurts.) don’t think I could have coped emotionally either. Be kind to yourself. People will understand.

TopOfTheCliff · 24/03/2023 10:39

This reply has been deleted

This message has been withdrawn at the poster's request

Hello standing. This thread is really for the cancer patients but you are welcome to pop your head round the door. Take a look at littlelifts.org.uk as they send out free hampers of goodies to NHS chemo and radiotherapy patients. Best wishes to your sister.

TopOfTheCliff · 24/03/2023 10:49

@WimbourneWasps Welcome to the friendliest thread. I had a total node clearance on the right and had a drain for five days. It is really important to rest and let things heal at first, so unless you can avoid driving, walking far and carrying anything heavier than 1kg I wouldn’t go. I overdid it and got an infected wound and a seroma then a fistula which took seven weeks to heal. I still get nerve pain two years on and I wish I had done less at the beginning!

Another quiet day resting at Tops Towers. I shall celebrate @Lisdeflores good news. I’ve been avoiding all naughty cakes apart from my weekly custard slice but it hasn’t made a bit of difference to my weight so I’m quite tempted to relapse while my energy levels are so low. Maybe I need the calories for energy?

Love to all
Top x

Atreus · 24/03/2023 16:38

@WimbourneWasps sorry to hear about your grandad. I had a lumpectomy and sentinel node biopsy about 3 weeks ago and whilst I think I could have attended an event such as a funeral a couple of days afterwards, I definitely don't think I would have been comfortable to drive. I held off driving for about 10 days and now, 3 weeks post-op, it's still a bit sore. I wonder if you can play it by ear a bit about attending and decide once you see how you feel post-op. I would see if you can get someone to drive you there though if you do decide to go.

I had my post-op appt today and after a worrying few weeks found out that my margins and node biopsies are clear. So no further surgery or chemo needed, 'just' radiotherapy and hormone treatment which should start in the next few weeks. Seriously relieved.

ajandjjmum · 24/03/2023 16:56

I'm so glad all is well for you Atreus - get the radiotherapy out of the way, and you'll be up and running again. I've been put on Letrazole - I insist on having the Accord brand (much the the pharmacist's disgust), and I have had no issues.

Regarding the driving, my surgeon told me not to drive for four weeks after the op, although I felt well enough pretty much straightaway. It's just the seat belt in the driver's chair that can be uncomfortable.

thesandwich · 24/03/2023 17:24

Hi @ajandjjmum i may being dim but why have you specifically asked for Accord letrozole? Have I missed a chapter in the inexhaustible cancer handbook?
Im on it currently having swapped from anastrozole. Thanks!
@WimbourneWasps I certainly could not have attended a funeral after a couple of days of lymph surgery. Could you join by zoom? Lots of places offer that now.

TopOfTheCliff · 24/03/2023 21:23

WOO! @Atreus that's brilliant news. Onward and upward. Have you been given the green light to exercise now? I started with yoga and swimming and gentle cycling but managed a Pilates class this week. I don't do running but I feel so much better for being active.

Tonight I forgot I had been invited to a party. I was sitting by the fire and suddenly remembered too late. Hopeless chemo brain! Oops.

Gilead · 24/03/2023 23:01

@Atreus
yay, good news!

WorryMcGee · 25/03/2023 00:55

WimbourneWasps · 24/03/2023 02:48

Ah I've found you!

I've got stage 3 melanoma that has spread to my lymph nodes I have pre op on Wednesday, operation on 14th April but who knows now because of the junior dr strikes 🤷‍♀️

2 days after my operation is my grandads funeral and I'm not looking forward to looking absolutely horrendous in front of family I've not seen for years! It's 2 days after a lymph node clearance in my armpit, has anyone had that? Is it over ambitious to
Think I might be able to drive/ be fine after it?

Hi @WimbourneWasps I had a total node clearance in my armpit 5 weeks after my lumpectomy. I had a drain for 7 days and then an orange sized ball of fluid that needed draining twice, they think it’s because I was still picking up my baby with the drain in (I mean, I had no choice but 🙄) the fluid didn’t cause me pain, just discomfort. I was reasonably active with the drain in because I had to be, I drove and I looked after my baby and I don’t think I suffered any more for it if that makes sense. Just got pissed off carting the annoying bag about. X

HerbalRefreshment · 25/03/2023 05:59

@thesandwich i also request Accord letrozole because of all the generics ans thr name brand, its been thr one with thr fewest side effects for me, but obviously it varies for different people.

ajandjjmum · 25/03/2023 09:29

@thesandwich Like @HerbalRefreshment, I read loads before taking the drug, and the Accord brand seemed to upset fewer people - I understand that the drug content is the same, but the fillers can change between brands.

I've taken it with no side effects, so I'm sticking with it for that reason. I have had to change pharmacist though!

LarryStylinson · 25/03/2023 10:03

Hello!
Just shuffling in to join your ranks if that's ok. I live in the rural Highlands and went down to my 'local hospital' that's 2 and half hours away on Wednesday for a large polyp removal and a mirena coil under general anaesthetic to stop the absolutely horrendous periods I've had for at least 6 years.
That didn't happen and ended up with a wee two night holiday on the Costa del NHS. Instead the theatre had to page the gynaecology oncologist and rethink next steps. Polyp has now been excised but in fact was a nasty 6cm gremlin who's been put off for urgent review - I've got an oncology appointment on Wednesday.
Also had an iron transfusion and MRIs done to see what else was going on as they couldn't see what they wanted to with the camera. They've also launched an urgent review of how I've been treated leading up to this as the ball has been really dropped too often.

So as Bill Nightly said in Love Actually 'Fuck wank bugger shitting arse head and hole!'.

I'm not overly surprised by what's come out of this. I've been back and forth to gynae for 6 years now initially with madly irregular heavy heavy periods and secondary infertility. It hasn't helped my case with being a plus sized lady with long time pcos diagnosis. The initial consultant was an absolute wanksplat who disbelieved the pcos diagnosis and wanted reassessed and even offered the helpful advice that a psychiatrist could be more helpful to me.
Anyway, they decided that they would wait and see, put me to 6 monthly reviews and see if getting weight off would help. Seemed to fall off the radar for a while but have an autistic daughter and this all fell during her initial diagnosis period and horrendous upheaval at home.
Nov 2019 - heavy clots not unusual in periods for me but literally haemorrhaged on my bathroom floor. Sick, shaky, chills. Absolutely spontaneous as well. Slight pressured cramp then it happened. GP prescribed meds to stop bleeding and re-referred to gynae.
Further reoccurrences of this is lockdown and since to varying degrees.
Feb 2022. Saw a different consultant. He actually heard me and started again with 'dildo cam', and pelvic scans and referred for a hycosy.
August 2022. Another spontaneous haemorrhage - worst to date. Have attached a screenshot of a post to a women's health group. Had phoned the GP on the 24th. Offered a phone appointment on the 25th which was a surgery half day which didn't happen. Then phoned out of hours who dismissed me and said Id had a GP appointment that day so what was the issue? Finally got hold of the sister practice to ours who put urgent meds to the pharmacy to help. Followed up with the practice manager who found that the GP had decided that the appointment wasn't necessary and had instead asked receptionist to contact gynae and check I was still on waiting list. Formal complaint went in for that.
Feb 2023. Seen in the hospital 2 and a half hours away for hycosy and Mirena coil. Very painful trying to get the speculum in. Consultant started flushing with water and triggered another episode of haemorrhaging. Couldn't get a proper look as there was what she thought was a large polyp blocking my cervix which was too large to remove with her tools. Urgent referral to try the removal and fit the coil under general. Drive the two and a half hours home with the car covered in inco sheets to protect the seats from the volume of blood.

I'm not surprised but I'm fucking angry. If they'd just listened to me. I'm fat not stupid.
Male gynaes are the worst. No uterus should mean no opinion.
So many other things have been dismissed. High pulse rate every time it's been taken over the last few years - nobody associated it with iron deficiency and chronic anaemia. Just those old classics 'ooh you're a bit anxious, have a nice cup of tea and a hot bath when you get home'.
Night sweats - oh well that'll be because your hormones are all over the place.
Grr.

Anyway, also to make things really fun, I turned 40 at the end of last year. Just before my birthday, I found out my husband had been sleeping with random strangers (crossdressing men at that). He's also an alcoholic. And we live 1000 miles away from my family in the middle of all his geriatric family. Our tween is autistic and I'm her primary carer. He works away month on, month off. I'm on the housing list for council housing expecting to be iny own place in the next few months latest.

So fucccckkkk.

Anyway. He's been told what's going on and went to his first AA meeting last night. My tween might get the Dad they deserve out of all of this so here's hoping. He's offered me support as a friend too and I've said I'll accept it.

So with apologies for the essay, Hi. 🙂

Cancer Support thread 86 - Stay Positive
thesandwich · 25/03/2023 10:47

@ajandjjmum and @HerbalRefreshment thank you- checked and my current pack is accord so will request in future.
@LarryStylinson im so sorry to read what you have been through and are going through. Nothing useful I can say but it’s shit.

Atreus · 25/03/2023 15:10

Thank you all for your kind comments about my appt yesterday. Today feels so much brighter! @TopOfTheCliff my surgeon was pretty blasé about exercise (and most other things tbh) and basically said if it hurts don't do it. But even though it hasn't hurt that much, I still haven't been doing too much and the mini egg consumption has taken its toll so from this afternoon I am starting my proper walks again. Last year I walked the Camino Frances across Spain and was supposed to be walking in Portugal in a couple of weeks...this has had to be cancelled due to radiotherapy but at least I can hopefully start getting some miles back in closer to home.

@ajandjjmum good to know you're getting on with letrozole ok. I've just had my Mirena coil removed (gutted) and my hormone levels tested to work out if I should be a tamoxifen or letrozole girl. From what I can tell, I think I'm post menopausal (although no periods for 10+ years with the Mirena) so looks like I may mirror you...hopefully with the same lack of issues.

@LarryStylinson wow...you've had a lot to deal with. Hopefully you'll get some answers and a clearer path forward now. I've taken note of the description you used for your consultant to use with the next person who upsets me!

TopOfTheCliff · 25/03/2023 21:27

Welcome @LarryStylinson and sorry you find yourself here. In my experience as a GP it is still possible that you will have a benign diagnosis of that polyp so don’t start funeral planning quite yet! Keep away from Google and stick to NHS choices or Macmillan sites to avoid freaking out. It sounds as though life is quite challenging enough for you with the wayward OH and your SEN tween. Do you have friends to support you and help out with the DC?
Feel free to rant to us here. We will celebrate if the polyp isn’t malignant and commiserate if it is.
Today I picked up my car from the garage after an MOT and annual Service. The friendly mechanic had decided I needed new cam belts and a water pump so did all that for an extra £500. When I drove off the engine overheated and it’s had to go back for repair. He has caused me a problem I didn’t have before I took the car in 🙄
In other news I just booked another cycle trip to France in August. Woo! I just hope the oral chemo isn’t too bad.

Sending strength to all
Top

KefaloniaKid · 25/03/2023 22:17

@Atreus so pleased to hear your positive news!
Sorry to read many others are struggling. It’s hard to keep positive when everything is difficult. Sending strength to all.

Vinorosso74 · 25/03/2023 22:29

Just to add, I've noticed differences in the Letrozole brands. I've asked the pharmacy to avoid the Cipla ones for me. Currently have Glenmark which are OK. That said, I can't remember what I was like before. This sudden, enforced menopause then Letrozole on top is a bit harsh!

Whattodotomorrow · 26/03/2023 17:43

@LarryStylinson I’m so sorry to hear what you are going through. Truly awful but I did have to giggle at your description of the consultant.

I saw the oncologist on Friday who rolled his eyes when I said I’d looked up my prognosis on predict. Although he wasn’t able to wave a magic wand or whip out a crystal ball, he did explain that lots of further treatments aren’t on there and it’s out of date. He said being her2 positive will mean I’m benefiting from the most recent advances. I also realised how early I am really in terms of treatment…this fight is going to be long. However, it’s one day at a time for me at the moment. He also wouldn’t give me a midway scan which is frustrating.

I hope everyone else has had a good weekend and you got your car woes sorted @TopOfTheCliff

incognitodorrito · 26/03/2023 21:02

Has anyone else had chemo induced menopause ? I’m on week 9 of my 12 week paxclitaxel course. Menstruating daily now for over 4 weeks. Not heavy, but do have to wear a pad. Had a meeting with my Onco two weeks ago and she shrugged it off as menopause. I was hoping they would stop completely and starting to get a little worried but not sure what, if anything, can be done about it.

WimbourneWasps · 27/03/2023 04:21

Thanks for the all the lovely responses, I told DH about my plans and he looked like I had 3 heads. He's going to be driving the 2 hours to the funeral so that's a relief. He asked why I assumed he wasn't going and I just said I'm used to him having big trials in and he had actually talked about one that day but he's got it adjourned so that's nice, he's actually got the whole week off because of my surgery!

I know that sounds ridiculous being surprised your husband is going to be around after surgery but he's a judge and he's a very good judge so he's always away at the moment. Think I offended him tbh but I don't care.

I've also found another massive mole that absolutely wasn't there 2 months ago. It feels like I'm playing whack a mole right now. Ugh.

Hope you all have a good week

dotty2 · 27/03/2023 09:48

Glad you’ve got his support @WimbourneWasps

@LarryStylinson , that all sounds really crap. Keep us posted, and don’t assume the worst. In fact, assuming nothing either way is a good plan.

@Whattodotomorrow that’s good re predict and your oncologist’s response. No one ever engaged in a conversation about Predict with me except to say ‘we will do everything we can to improve your chances’ but I also like to remind myself it’s out of date and doesn’t take account of new treatments. And whatever the odds, we can always be one of the lucky or unlucky ones. I got myself really upset yesterday reading a thread on here about obesity with people declaring most cancers are avoidable and down to lifestyle choices. I’ve been slightly overweight (or more) most of my life and used to drink alcohol (though never a lot except when I was a student). I was fretting that people are judging me for getting breast cancer. But really, those stats only work at a population level, not an individual level. Drinking alcohol increases your risk but no one can say whether any individual cancer was caused by a risk factor or would have happened anyway. Trying to put all that out of my mind and concentrate on what I can do now to improve my odds. That said, I was going to start the day with exercise but I was up most of the night with a teenager with a stomach bug so I’ve started it wit cleaning, laundry and too much toast instead.

dotty2 · 27/03/2023 09:52

Oh and @incognitodorrito I was 49 when diagnosed but still having regular periods. They stopped when I started chemo and I had one episode of irregular bleeding along the way. Some hot flushes. I’m 6 weeks after my last dose now and had ovulation pains at the weekend but am starting ovarian suppression and letrozole this week, so who knows what hormonal delights await. Hope yours settle down soon.