Cancer Support Thread #79 Newbies Welcome

[MrsPnut]

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

OMG @Acinonyx2, how did the anaesthetist miss your port?? How?? I thought the whole point of these things is that a monkey could do it! (Still, reassuring to hear that they did intend to use it to put you under... I’d been wondering about that bit of surgery). Glad to hear you’re home and have the most invasive treatment behind you!

@Acinonyx2 I only came home with oramorph from the hospital, they did take a blood sample (three attempts) to check for clotting though before I left. I didn't use NSAIDS (Naproxen/Ibuprofen) for a few days because they can inhibit clotting.
Glad you are home safe and that you are bearing up. It is the oddest sensation when you are used to having huge boobs that get in the way to have almost nothing there. It showed me how big my belly is so I am having to do something about it but I did drop two dress sizes on top in one go.

@backformore they don't use it for the proper surgery sedation but he said since I had one he could give a starter to knock me out then put in the proper cannula. I had a feeling he wasn't really used to using ports and I was right!

@MrsPnut I've got oramorph and antibiotics. And I am not taking those blasted injections. I rebel! Remind to much of the blasted filgrastim injections. Will keep off the ibuprofen.

YEs - I feel most peculiar. I gather they may be pretty uncomfortable for a few weeks and I have no idea what size bras to get

I didn’t have antibiotics because the surgeon only gives them for implants or diep recons. If he didn’t introduce anything, he doesn’t bother.
I’ve got my surgical bras for 6 weeks but have bought some Molke bras in a few sizes and spoke to them about late returns due to swelling. They were great because they are a small business and really helpful. I’m going to try on this week and make a decision on best fit.

Congratulations on getting through surgery, @Vinorosso74 and @Acinonyx2! Although I cannot believe your bad luck with the port and cannula, acinonyx. These things can add so much to our overall experience - it sucks when they don't get them right. Hope you both have comfortable recoveries with people waiting on you hand and foot!

@quinin I was handed a long list of stuff to avoid at the start of chemo, but as time went on I added bits in. I have still not had Brie or rare steak (am v excited about getting back to those) but I've had all sorts of fish and been fine. I think they just want you to be super cautious about food poisoning and potential stomach upsets.

Thank you so much @HauntedDishcloth and @SigridGard for the tips about dry mouth. I do have a prescription toothpaste and mouthwash for ulcers, but I hadn't thought to use the mouthwash for dry mouth. Will give it a go! And am going to find some of those gum things tomorrow, too. I am drinking pints and pints of water but it just doesn't help - goodness knows where it is all going!

General question about surgery - do they do any sort of blood typing in advance, in case something goes wrong and you need a blood transfusion? I asked about my blood type the other month (since I give 4-6 vials monthly surely SOMEONE would have typed this) and they dont know, said that was a different sort of test to what is normally run. Well, alright, but isn't this sort of important medical information?

Pre-BSO surgery check on Tuesday where I know there is a blood pull presumably to check WBC levels, which is before two days of filgrastim injections. Oncology on Monday where they will also run the same set of checks and my neutrophils are going to be shit as its the top of my off-week of palbociclib. I don't get the logic but I hope someone does.

@Lunificent I ended up with Dioctyl 100mg, prescribed to me by the hospital. I suffered horribly in the middle of my treatment, so much so that I ended up in the Cancer Assessment Unit, where they gave me a suppository (it worked!), then dispatched me with a box of Dioctyl which was just what I needed. I couldn’t stomach Laxido as I was feeling nauseous anyway, and adding it to the mix just didn’t work. Senna didn’t work for me, either.

@Vinorosso74 and @Acinonyx2 great to hear your surgeries went well. Wishing you a comfortable recovery. Re: needles, ports, etc. I went in for my blood test at my GP surgery as I have my 2nd dose of zoleodronic acid on Monday, and the nurse missed my veins (tried several different ones) three times!! I couldn’t hold a grudge as it happens and she is by far the loveliest nurse in the practice but still...

@Bloodybridget good luck with the scan today! 🤞

Went to my second session at Maggie’s yesterday. It feels good to offload to someone other than my DH. I felt light as a feather afterwards. Still have scanxiety but it is more at the back of my mind, rather than at the front.

Petrified I will suffer the same side effects of zoleodronic acid - mild flu symptoms, which may potentially scupper my bone scan on Wednesday. As soon as you develop fever (and I did first time around), you are in the Covid bracket. Grrrr....

@quinin my surgeon is very lassez-faire about the whole diet restrictions while on chemo. While my consultant was super cautious. In the end I went with my consultant’s advice as I absolutely didn’t want to take any chances whatsoever, however much I craved certain foods while undergoing chemo. So, I avoided smoked fish as well.

@AlbertCampion- I could only find the gum things online as they’re more of a dental product apparently (I only found out about them as someone recommended them on the Macmillan forum). I got the from EBay but they’re on Amazon as well- not cheap unfortunately about £10 for 40

Thanks @balkanscot. I'm spending half an hour on a jigsaw puzzle before setting off. Glad to hear you are finding the Maggie's person helpful.
Re foods to avoid during chemo, I remember the first time I was advised not to eat unpasteurised dairy products or raw salads - don't think I stuck to it! This time they didn't mention it, I guess because of different drugs.
@HerbalRefreshment I'm sure they do check blood type before surgery.
@thereisonlyoneofme I was told ages ago that I wasn't BRCA positive, so I'm puzzled about olaparib - one of my questions for next Wednesday.
@SigridGard don't think I've seen you round these parts before - hope you are doing OK on treatment, wishing you a good outcome.
@Acinonyx2 glad you are home, hope you had an OK night. Can't believe it about the port! I did anti-clotting injections for a while after the major surgery, but not after the little lung op. Don't remember having any problems with them.
@Vinorosso74 great that you are home too, hope you are doing OK today.

Hi everyone been awol for a while as not in a very good place. Mind away down the rabbit hole we all unfortunately know so well! To reintroduce myself I am 50 years old have a rare blood cancer diagnosed early March and am waiting for a stem cell transplant. I am currently having holding chemo as an outpatient until this happens. I have 2 DC 22 and 19 who are currently being tested as potential donors. This makes me proud and weepy in equal measures.
@HerbalRefreshment to reassure you, there will be blood for you, you will be crossmatched before surgery and to be honest I would have thought before chemo.
Best wishes to all on this thread whatever stage you are at. I have found you all a tower of strength in these last few weeks.

@Bloodybridget- thank you. Been lurking since my diagnosis in June last year 😁. Have such admiration for all those having to follow a much harder path than I’ve got away with.

I’m recovering well, just get floored by tiredness if I try to do too much. And no-one ever mentions that drier mucus membranes due to menopause/Drugs also includes your mouth and the inside of your nose!

Pleased you're home too @Acinonyx2.
I had to take 2 antibiotic tablets when I got home: one on Thursday evening and another yesterday. Seems a strange amount but hey.
I was given lactulose to counteract the codeine. However, it hasn't agreed with me. I felt awful yesterday evening! Possibly TMI but I was full of gas (the noises were quite something) and had several loo trips. I'm not going to take any today as I still feel a bit unsettled!

Morning ladies

Just caught up with all news. I too am a tad frustrated/sad of looking in the mirror at an overweight, blotchy nearly bald blob who can't walk very far without gasping her last.

Anyway, speedy recovery to those who have had ops and good luck for all having treatment next week including moi with my 2nd EC.

Sat waiting for DD1 who is attempting to pass her driving theory test for the 2nd time but once again we were late as this time she forgot her provisional licence so had to go back.

Laters

HC x

@HerbalRefreshment I had my blood typed before surgery - until then I didn't know what type I was.

@Vinorosso74 I've been very windy and not had any lactulose - although if nothing moves soon I may have to...

I've been 'sleeping' basically sitting up - hope it's not going to 'set' like that so I'll never be comfortable lying down!

I'm gearing up to some kind of wash

@Acinonyx2 I’m back to being able to sleep on either side already. It was ok on my non armpit side from a few days after the drains were out, I do have a pillow under my bad armpit and across my chest though like I’m playing the bagpipes.

@HumphreysCorner Hope DD1 was successful.

@MrsPnut yes, she passed and I'm so happy for her. Driving test booked for September.

I'll do a recap on me while I BBQ. Aged 51 and diagnosed with Invasive Ductal BC in right boob after finding a £1 size lump in November which was treated as an infection until it grew and I finally got to see a Dr. After copious mri and ct scans my chemo started in January. Have 2 EC ones left then it's surgery of some kind and radiotherapy.

Have just a few sprigs of hair that refuse to fall out. Weight gain is horrendous but that can be sorted later.

HC x

Hi I was diagnosed with ovarian cancer 2018 had the usual treatment and operation and ended up with 18 mths Ned came back in October and have been so ill. It is still stage 3 and the scans are all promising and talking about park inhibitors once I have completed chemo but chemo is knocking me for 6 feel so unwell all the time and just want a normal life again. Am so jealous of people who can go out and about and I am stuck in bed.

Hi @Barneybobo It sounds like this recurrence will have been caught early enough. How far are you with the chemo? My oncologist said one of his patients had continued marathon training during her chemo I've got my 6th & last next week & while I want it to be over, I'm also dreading it because I'm so poorly with it. Have you made sure you're getting all meds available to counteract side-effects? How is your eating & sleeping? & do you find you get any better days at all? You'll get lots of (virtual) tea & sympathy on here even if you just want to moan about how rubbish you feel!

I was initially really poorly on rediagnosis and was admitted to hospital several times I have been out now for 6 weeks and am doing between but finding it hard to eat much without being sick and also being in pain. I feel so guilty as I have a 3 year old and he has to see me like this. My poor DH also has to clean up after me I just feel like a waste of space.

Hi @Barneybobo I understand exactly how you feel wanting your normal life back. It's so sad and frustrating when you feel like crap. Everything seems to happen around you. The first few weeks of my treatment I felt like a ghost. I felt so detached from everything. It was quite scary.
You aren't alone in feeling like this. I wish I had an answer of how best to cope. I've just been taking it really easy. Eating small amounts of tasty stuff regularly. Going to bed when I need to. I figure my poor body is having to put up with a lot so I'm just letting it coast.
I hope you get some relief from your sickness and lethargy soon

Oh gosh, that's very hard with such a young one. My kids are older but as my chemo's gone on I've effectively opted out of family & domestic life for the time being. You've got to do whatever gets you through, & if that's doing nothing, just go with it - anyone's that's been in a similar position wouldn't begrudge you & I'm sure you'd do the same for your DP if the situation was reversed. Have you tried all the anti-sickness & pain meds? I guess so if you've been in hosp. Being sick & not eating makes everything a hundred times worse

@Barneybobo I'm very sorry you're in this horrible situation. Chemo is the pits - are you on carboplatin and Caelyx, four-weekly? I just finished that, also second time round ovarian cancer. How many more? My sixth was cancelled because my blood counts were going so low, maybe you'll be let off early too!

When I read about other ladies experiences with chemo I realise Ive been lucky. Apart from the hair loss and bit of neuropathy from first line , and loss of taste, and then onto carbo/caelyx which I was terrified of starting, but was easy, it has not impacted greatly on my life. I have been able to get about as normal and not experienced fatigue etc. Now Ive had a major op and touch wood, so far recovery has been good. It goes to show how different we all are and its no good looking at statistics as everyone has a different experience.

I have a question about Nivestim/Filgrastim. I’ve done 5 of 7 injections and had no side effects. I was warned I’d need to alternate paracetamol and ibuprofen because of the pains I’d get e.g. in my shoulders.
Now I’m panicking that the fridge isn’t cold enough so the injections aren’t being effective? Is it normal to have no side effects from this drug? Or can I expect them later?

Been awol for a while. I have been reading the last thread and sorry that new members have needed to join. Good luck everyone with your treatments.
Diagnosed with breast cancer grade 2 Her2 negative in December, I've had 2 operations with only 4 lymph nodes removed.
Haven't needed chemo. Started on Letrozole in February. The first time it was the Cipla manufacturers didn't have any side effects. The second lot
were accord with these I had severe shivering plus hot flushes. Doctor issued a new prescription so I could get the cipla brand.
Started radiotherapy a couple of weeks ago and I only have 4 more to do. I don't know if it's the radiotherapy or a new side effect of Letrozole but my god I feel
cold most of the time then I get hot flushes. Checking my temperature as requested by my GP it can be anything between 35.1 and 36.8. I have a telephone
consultation on Thursday to talk about this.
Poor husband doesn't know whether to wear shorts or fleece.