Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

@SigrunGard I want to say this is probably my fifth brand - been on letrozole since December 2019 so have definitely been round the houses and know what works and doesn't! This one is the same colour as Sun Pharma, which made me pretty achy most of the time. I didn't realise what I had been putting up with until I got Accord one month and it was like the little niggles, joint pain and muscle weakness lifted overnight!

Manx was better than Crescent at least, and I think I got Teva once but don't really remember it at all.

Next week I need to do some telephoning for travel insurance so I may as well slip in a call to the GP then to ask for Accord to be added to my scripts. I had just popped into Boots and thought well I may as well pick up my next supply and I can see the letrozole from the counter and noticed right away it was not the blue boxes and then the pharmacist seemed kinda ill tempered so...

Really no excuse for not standing up for myself on this, but at the same time I get so annoyed at the 'whatevers cheapest this month and at this branch' approach. I'd happily pay for my NHS prescription if I can get the brand that works!

BTW - Im glad to see its not just me having a problem with Crescent. I did take a Clarityn yesterday in desperation and that seemed to clear up the bulk of the muscle aches so I was well enough to at least exercise today.

@HerbalRefreshment- I haven’t had the “pleasure” of Sun Pharma… I have also had Teva one month and like you it doesn’t stand out one way or the other.
I take a daily loretadine antihistamine which does help but Crescent definitely puts up a fight!

I hope your pharmacy & GP help out. As you say, I’d happily pay if it guaranteed Accord

@NoOneWillReply welcome to the thread nobody wants to join. Let’s hope your stay is short. During my BC journey I had a bonus colonoscopy “just in case”. I would suggest you plan a couple of days of extra help with your DD. You will be eating low fibre for a couple of days then chained to the bathroom for a day drinking and passing clear liquid with the laxatives to wash your bowel clean, The procedure is quite arduous but they give you plenty of pain relief and sedation. You will need someone to drive you home and stay with you for at least 12 hours afterwards because of the sedation.
My results were thankfully normal which I knew straight away and overall it wasn’t a bad experience. But I may be battle hardened after a year of cancer treatment

Try to keep yourself busy while you wait. Do the weeding, tidy the cupboards, anything to stop you thinking too much!
We are here to hold your hand.

Greetings to all. I am trying to rid my allotment of weeds but they are winning.

Top

Thanks @TopOfTheCliff for the welcome and information. I am just waiting on a call from the consultant now to discuss next steps, which my GP states will be a colonoscopy. I am terrified of all procedures so I will ask for sedation, however the issue is going to be I live with just my DDs and am very isolated, I do not have anyone who can collect me from the hospital. I am therefore panicking that they will refuse sedation.

Forgot to say, I am glad your results were normal, and I hope you are doing as well as you can be at the moment

Update, I am having the camera version on the 19th.

@NoOneWillReply sorry you're joining us here. The waiting is so hard but there is lots of experience and support for you. Hope you can keep busy between now and the 19th

@Bloodybridget hello fellow rower - glad you're getting back out there.

It seems incredible that all the different versions of the same drug have different side effects - would never have thought that would happen. Sending love to everyone going through treatment and hope those with wounds are healing well.

@TopOfTheCliff good to hear your allotment news - thats a never ending job!

I saw the gyne onc yesterday and it is a small tumour on the abdominal wall so they are going to remove it mid August. I guess I have to wait and see what happens after that. There is nothing else visible so I guess thats something. Even though I didnt get any news I wasn't expecting I was way more upset than I expected. I didnt go back to work but drove to a deserted beach and went for a stomp, cry and rant in the rain. Fortunately I had waterproofs and wellies in the car otherwise I'd have looked even more crazy today though I'm thinking I need to focus on staying fit and healthy to give myself the best chance and enjoy the summer.

Keeping fingers crossed for you NoOne for a clear result. Not had a colonoscopy but have had plenty of endoscopies and sedation all the way works best I find. I have been discharged into a taxi before so that may be an option?

Sorry to hear of the diarrhoea issues Jean you have my sympathies there. Hope it eases up for you soon.

HimphreysCorner great news on the drain, such a relief to tube free.

MrsP Alton towers sound like a great day out. Did you go on any rides?!

Bontopia the scenery in that photo is incredible, almost doesn't look real!

Lunificent Hope the nurieopathy has improved. I had the weird claw on and off and avoided washing up, wore gloves for the fridge. Most of my neuropathy was in my eye sockets oddly.

BloodyBridget sorry about your break in. How utterly crap and violating.

Wishes all the best to those awaiting results.

I'm out ITU and on a cardiology ward as still have a chest drain. Central line and TPN feed came down today, along with my very clever intravenous lidocaine which was like magic for pain. Think I'm the only person to have put onweight with TPN 😂 I managed half a smoothie and some sweet potato mash, first food since Thursday. Much to my delight it went down ok and has stayed down. It's a long road to recovery eating wise but I'm hoping it's off to a good start 🙏

Just watched the most beautiful sunset over St.Paul's cathedral whilst listening some music 🎼on my headphones and forgot about cancer for a bit. Not easily done in hospital that's for sure. I've been quite emotional about everything that's happened whilst here and especially find mornings hard. I also had the joy of poop myself following a barium swallow, yesterday which was a low point.

Acinonyx2 - hope Gluegate has improved and your feeling slightly better.

Big wave to everyone else, the morphine is woozy so I'm get some sleep

@Bloodybridget I hadn't taken in about your break in. That is so appalling and unfair. I do hope you can afford to replace the things you need to. And that the sense of violation is not too bad.
I sometimes think I should hire a team of burglars to remove some of the clutter here. It is sapping my energy dealing with it. If I go away for a day or two it spreads out again as DH is a loveable nightmare! When I broke my ankle the paramedics couldn't get me out because of the clutter so I have carte blanche to clear it.

I was thinking of @Babamamananarama today as I was in Plymouth. I hope she is doing okay with her long stay in hospital. Sending best wishes and positive vibes when she manages to log in.

I have a busy day tomorrow and I am going in to my previous workplace for the first time since I retired. How do I break it to them that I am not missing them at all? Maybe with cake.

Regards to all. Be strong and this too will pass!
Top

Hi @starhaf sorry I’ve taken a bit of time to reply. Thanks for your info about neuropathy. I’m having chemo 5 on Wednesday so will mention b6 then and. See if I can get it prescribed.

@quinin - funny you got neuropathy in your eye sockets, I suppose it can get anywhere. Will be looking out for that side effect in my next cycle!

Thank you to everyone - @jeanlannes, @haunteddishcloth, @humphreyscorner, @acinonyx2 (apologies of I’ve missed anyone) who gave me advice about Docetaxel side effects when I posted at the start of the month. My crab claws are no more, but no doubt will return after chemo 5.

I have a provisional surgery date for mid September. I had no idea there was so much choice. I had been going to just go for implants but there are various options involving removing skin and fat from different body areas. If I opt for one of those, I’ll be the first in the hospital to have the procedure since the COVID lockdowns. Does anyone have any thoughts about the pros and cons of different reconstructions?

@NoOneWillReply the hospital should be able to arrange transport for you if there is no-one to ask - explain the situation to them.

Gluegate is sufficiently under control that radiotherapy has been rebooked to start next week. I know it's for the best but I have rather lost faith in anything going smoothly.

Mainly caught up in dd's 16th birthday doings - I know there are a few teen birthdays going on among posters here this summer.

I'll look at B6 as well as Kadcyla is giving me neuropathy again.

Thanks for the welcome and kind words, it really means a lot. There's no one I can talk to in RL and its hard trying not to catastrophize.

Sorry to read people are struggling with both treatments, illnesses and burglaries

DP's started calling me Servelan! I loved Blake's 7 back in the day so I'm taking it as a compliment. It could be another cosplay option if there were any upcoming sci-fi conventions but I'd have to make the gun out of a toilet roll!

I've actually just been making a shield for my mastectomy scar out of a plastic lid, cotton wool & surgical tape in a very Heath-Robinson style. Wearing anything touching the scar is irritating it in two tiny places so it's been in a cycle of healing up overnight but getting sore in the day. I am getting it checked properly by the nurse next week.

@Lunificent The subject of reconstruction is huge. There are a couple of UK facebook groups where you can ask questions and read answers to other's questions. I'm leaning towards DIEP for myself but it will be next year (delayed DIEP).

I thought of Babamamananarama the other day too. I hope she posts soon. And anyone else that hasn't posted for a while or any lurkers, do drop into the thread to say hi

Hello
I have been absent for a while. Back at work, and just about keeping up with the hectic pace of life - 9 months shielding had made me rather slooooow!

To introduce myself, I was diagnosed with stage 2 bowel cancer just over a year ago, after an emergency admission with a bowel perforation. I had 6 months of chemo, and then another 3 months of shielding, and - for now - am all clear and well. I'm 47 and have 4 DC, and work as a GP (so on red alert for new bowel cancer diagnoses at the moment!).

I'm sorry to see so many new names. One of my closest friends has been diagnosed with NHL recently, and just started chemo, and it feels as though bloody cancer is everywhere.

But lovely to see familiar names too! @gillmoregirl, it sounds like we are in the same position - waiting for stoma reversal, no reply from Macmillan nurses, and a bit in limbo. I hope you are doing well, and that it was good to finish the chemo. And love to @TopOfTheCliff and @Bloodybridget and @Thymeout and many others too.

It feels strange going from checking this thread every day, to going weeks without really thinking about my diagnosis at all. It's a nice feeling too though, so may it happen to many more of you xx

Hi, I found this thread after a general search on Mumsnet and hope you don't mind me joining you lovely people.
I'm currently in a zone of hell that I'm sure many of you will be familiar with - the waiting.
I found a rather large lymphnode and originally assumed it was a lipoma (Dr Pimple Popper anyone?)
Had an ultrasound done and the silence from the radiologist along with his comments at the end was enough to scare me, so I'm now on the two week wait as referred by my GP, having had some bloods taken today. I'm in two minds to chase the results of them tomorrow or just leave it til I hear from the hospital.

I'm going through moments of pragmatic wait and see then also moments of just utter mess where I can barely catch my breath. I'm 41 and have an 11 yr old with SN and it's just us. I'm so scared and I've been on Google which has made me worse. I need to stay away.

I don't know what I want to achieve posting this but just looking for a hand hold I assume. :(

I hope it's ok to post here.

My mum has stage 4 ovarian cancer. She lives in Ireland (I don't) and her team are saying she won't be able to have Nirapirib after she finishes her chemo, unless her BRCA gene testing is positive.

I'm worried about this, because in the UK and a lot of Europe, if I understand correctly all women are offered Nirapirib now since a study has shown it is beneficial regardless of BRCA status? There seems to be a small window for beginning taking it too.

Her oncologist is of the view that the side effects of Nirapirib are very harsh. But surely if it might help a recurrence - it's worth trying, to see how the individual gets on? Surely some people are ok? My mum is only in her 50's.

I wondered if I paid for a virtual consultation with a UK doctor, could they give an opinion?

Sorry for my rambly post, I'm just very concerned about my mum and want to make sure we get access to the best most up to date options for her treatment.

Hi @MintchocIceCreamPlease I was diagnosed in 2020 with stage 4 ovarian cancer. Your right in thinking that Niraparp has been approved for BRACA negative women in the UK .
I'm BRACA negative and in the uk and I was started on Bevacizumab after treatment so maybe it's not always the first line treatment.
There is a charity called Ovacome they also have a online forum they have lots of experience and wisdom and they might be able to answer your question .
I know it's difficult because we always want the answer to our next question but try to focus on whats I'm front of you and use your strength for that.
Good luck to you and your mumX
(Name change I'm the artist formally known as Lizdeflores, waves hello)

@PaddingtonStareBare Welcome, pull up a chair and we will hold your hand whilst you wait. Do stay away from google though because it's mostly terrifying rubbish.

It's nice to see people popping in to say hello from previous threads, sometimes it is hard to imagine a life after cancer and I know I feel like I have been having treatment forever.
DD2 started back at rugby last night and it was the first time I have been looking like I have cancer! Thankfully it wasn't very busy as lots of kids are shielding around here and I managed to chat with a few mums I know well.

It's DD2's birthday on Monday, I have bought her main presents but I am struggling to find a card I like. I might nip into town today when it might be a bit quieter.

Hello all, thanks to those who have recently tagged me with nice messages. I can see there are several more newcomers, welcome to all of you, I wish you all the best of luck with anything and everything that's going on for you.
I have to say I'm not in a great place right now: having felt cheerful and ready to engage more with life very recently, my bloods this week showed a worrying drop in neutrophils, and the consultant I spoke to yesterday explained that if they're no higher next week, they will have to pause niraparib again. I'm on the lowest dose now. I could start the drug again when bloods have recovered enough, but it's pretty likely I wouldn't cope.

I knew that there could come a point when I wouldn't tolerate niraparib any longer, but it hadn't occurred to me that it could happen this fast. I didn't ask yesterday what the plan would be if I did have to come off it permanently. Am imagining it might be just, wait for a recurrence, then more intravenous chemo.

So please cross your fingers/pray/invoke neutrophil fairy, or whatever other interventions seem like a good idea, that I will have ok bloods by next Wednesday. Thanks!

Bridget I'm willing those neutrophils up for you xx

Bridget, sending many positive thoughts your way for the levels to improve. x

This is for @HauntedDishcloth :)

Do you know the names of the UK Facebook pages, I've joined a couple of American ones but couldn't find the UK version. Thank you!

I'm still waiting for a date for my surgery, and for my daughter to finish her exams so I can tell her, then her brothers, about my diagnosis. Waiting is the pits

@Elle200 There is UK Breast cancer support group, Breast cancer support UK and if you are under 45, Younger breast cancer support network (but you need to message the page for the last one because it is a secret group).

Hello!

It's been a while since I popped in, but thought I would come and wave at everyone! I'm sorry to see some are still going through such tough times. @Acinonyx2 I can't believe gluegate is still going on - you must be thoroughly sick of it by now!

I am now nearly four weeks post radio and doing ok. I had a wobble last week where I thought I had found a lump and I spent an hour crying on the breast nurse, but I think that is expected. It is very weird being post treatment - everyone seems to expect me to return to normal but I don't really know what normal is any more. I have been referred to a Moving Forward course which will hopefully help. It's a strange feeling, having had so much medical intervention, to suddenly have none.

My hair is growing back but weight is being stubborn and refusing to shift. Energy levels are slowly returning, too.

So, all going the right way, just slower than I expected. If any of you are approaching the end of treatment, my advice would be not to rush things - I think I was a bit gung ho and I wasn't really ready.

Sending lots of love to everyone. xx