Cancer Support thread #78 - 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

@Acinonyx2 Mine are settling down but I think I may be getting a seroma under my armpit. I think they are likely to end up as a 38DD but still with a very wide root.
I've had some Molke bras delivered today for when I am free of the surgical bra and I have bought Cosmic and Stellar sizes to see which fits best. I might wait until I have the dressings removed on Thursday before trying them on.

God yes my runny nose has been the bane of my life recently! I also don't notice it's dripping a lot of the time - the absence of nose hair means that the first warning I get is often when it is properly coming out. 🤢 DS has frequently been grossed out by it and it is quite embarrassing around friends. I have taken to carrying a toilet roll with me everywhere as I get through tissues at such a rate. I heartily recommend Happinose at night if you find your nose is sore from all the wiping.

I am so glamorous. 😳

Good luck tomorrow, @FizzyOrange!

Just a quick update - was at hospital quite a while today, had blood tests, was asked to wait because if I did need a transfusion they could do it today; in the end I didn't cos haemoglobin was OK, neutrophils low so they sent me home with filgrastim injections. Doctor also asked for a chest x-ray which freaked me out a bit, but she said it all looked fine and she couldn't see the little lung nodule that was visible in November. The CT scan on Saturday will give a better picture for that but I am cautiously optimistic.

Haven't read recent posts but hope everyone is reasonably OK, sending good wishes xx

I've got to give myself filgrastim next week - any tips?

@FizzyOrange wishing you a successful surgery tomorrow! 🤞Let us know how you get on.

@Bloodybridget super news both re: transfusion (none needed) and X-ray. It all sounds very encouraging. Keeping everything crossed for a favourable CT scan. As for neutrophils, those pesky things, boo! Mine played out on and off all the time during chemo.

@HerbalRefreshment I am SO squeamish but managed to inject myself OK in the tummy fat area. It was relatively painless as I lost all feeling in that area due to DIEP flap reconstruction. I think I only managed to burst a little blood vessel once - there is a tip on how to avoid that, I think, but I forgot! I had quite bad pain in the bones due to it - first time it happened I wasn’t aware of it and properly panicked that it was metastasis. Afterwards I just got on with it and took paracetamol and brufen which helped. Take your temp. before you want to take paracetamol as it can mask signs of infection, so caution is advised when taking paracetamol during chemo. Good luck!

I have filgrastim with each cycle and although I don't enjoy doing it, find it fine to do. I give it in my stomach and can't feel it at all. I do it at a 90 degree angle, very quick and easy. Just make sure you get a sharps box to take home.

Side effects wise, had a bit of bone pain, mostly in my sternum but fleeting- otherwise no side effects. My neutrophils aren't great though so I do wonder if it works that well on me. I've had diarrhoea this cycle which might be from that but I've had so many drugs it's hard to say really!

@Bloodybridget - that sounds promising news

@FizzyOrange - good luck with the surgery tomorrow and hello to everyone else.

I am dreading tomorrow and feel quite sick at the thought. I wish I didn’t have aches in my neck, arms and legs. I keep reminding myself that where there is treatment there is hope but in reality am lurching from despair to optimism. Glad the girls have gone back to school today.

Had my second vaccine and coil removed. Doctor helpfully said she didn’t know what to say to me. I think I need to find a more sympathetic doctor’s surgery.

@Vinorosso74 MrsPnut is correct- I am a vomiter.  But I always have been. My consultant was very quick to get on top of my anti emetics and I've not been sick since my first cycle (4th tomorrow) Trust your team they are on your side and they want to treat you as much as you want to be treated. Good luck for surgery

@Bloodybridget fingers crossed for the CT but great that your X-ray was clear

@Acinonyx2 @FizzyOrange May the surgery gods smile on you, another step along the road for you both

I'm on week 4 of my 6 week treatment plan. It's been very weird. I feel like I've stepped out of time. I'm at the hospital every day Mon-Fri which is oddly reassuring. The radiotherapy lethargy is real and I feel like my IQ has fallen about 100pts. I feel soooooo sloooooow.
Side effects (vomiting aside) have been manageable. I feel like it's a case of stamina now, just grinding it out til the end. Turning up and doing what I'm told as well as I can. I seem to have slipped very easily into a strange passiveness which is very unlike real me.
I've not had time to think about "after". I don't think I want to think about it just yet.

I'm sorry if I've missed anyone having anything big this week, my brain is fecked- I hope everything goes smoothly and side effects are minimal.

@JeanLannes I'm sending you a big virtual hug and a handhold for tomorrow.

@quinin I have had a lot of filgrastim injections over the last couple of years, I don't mind doing them for a few days at a time but I do feel sorry for people who have to inject on a daily basis.

I recommend Benzydiamine rinse (green liquid) to combat ulcers. I had 2 gigantic ones after my 1st cycle which made me feel like Pete Burns’ lips gone mad. I could hardly eat and drink. It was horrendous! I never thought to ring the chemo helpline. Instead I trotted merrily to my next session only to be swiftly dispatched back home.

@quinin sorry I realised your comments on filgrastim were aimed at @HerbalRefreshment not me! Herbal I have never had a problem with them, hope you don't either. The needles are very fine and mostly it barely hurts.
@BadeyeBri it must be hard having to stay in hospital that much. But you're over the halfway stage!
I can't scroll back far enough to see who's asking about managing sickness but you have all my sympathy and I hope you can find something to help.

@Acinonyx2 I liked your Marcus Aurelius quote! Funnily enough, yesterday I was concocting a Roman emperor's costume out of an old sheer for youngest DS to wear to school today for their Romans topic (that is the 4th costume this year and they've only really been in school for one term so far!!). I first came across Marcus Aurelius/stoicism when I read Derren Brown's book "Happy", which is a self-help book I suppose but I found it was also a good read as I like Derren Brown, which is the only reason I was reading it as I don't usually do self-help type books. It does have a section about death which I must re-visit. I recommend it for anyone interesting in reading a well-researched book about improving mental health with a bit of humour thrown in, and if you like Derren Brown of course.

He's actually linked to what I put down as my first major chemo brain blip back in Feb: I thought I'd book tickets for his latest tour as a treat for myself and older DS who also likes him. The dates had been rescheduled due to covid and I was chuffed to find really good seats at our preferred venue and on a date that wouldn't interfere with my treatment, which although ££ I bought as I thought we deserved it. After I booked it online, I went to put the dates on the calendar ....found it was only bloody October 2022 not this October!!! I refuse to believe I normally might have made that mistake and thoroughly blame the chemo

@HauntedDishcloth totally the chemo

I have steamed the cat on two occasions now by forgetting to put the tumble dryer hose out the utility window. She was v unimpressed but smelt divine. I blame chemo brain too and have now decided that laundry is too dangerous 😆

@BadEyeBri it really is an endurance just to get through treatment. I was surprised I didn’t vomit actually because I often can’t brush my teeth without doing so. My worst bit was making sure my bladder was the right size for each radiotherapy. Just made everything so stressful.

@MrsPnut I worry more about the bladder prep than I do about the bloody cancer. Sometimes the very thought of drinking another cup of water turns my stomach

@Acinonyx2 will be thinking of you on Thursday. May everything goes to plan.

HC I had the chin acne after my first chemo cycle. Got my Gp to prescribe a topical acne cream and actually it cleared quite quickly and hasn't recurred.

I have to do Filgrastim for 10 days each 21 day cycle. It actually isn't that painful but I still hate doing it; the mental challenge of sticking a needle in myself just makes me feel really hard done by! Because of my inpatient chemo and regular blood tests plus self injecting, there are only 4 or 5 days in every 21 that I can be reasonably sure that someone is not going to stick a needle in me. I guess lots of diabetics etc have to do it every bloody day and I should just buck up and stop feeling sorry for myself.
I also get the bone pain from it which is annoying. Should I be taking ibuprofen instead of paracetamol for this then, if I'm also monitoring temperature?

My bloody PICC is still causing me gyp as it seems to be migrating in and out all the time and now the insertion site is protesting. My team are on it but urrrrggghhhh.

I'll stop moanjng now.

Good luck to all those having surgery this week. It'll feel like such a massive hurdle done once it's over I'm sure.

Thanks ladies - I only have to do two shots before the ooph next week and that box has been languishing in the back of the fridge for almost two months at this point (surgery was rescheduled). Just want to get this over with!

@Babamamananarama I was told to take my temp. first, then take paracetamol, wait for 1 hour, then take ibuprofen. It worked in combination for me, as paracetamol only took the pain away for maybe 1 hour. If you are still unsure I would suggest phoning the chemo helpline, they were really helpful (Scottish version).

@HerbalRefreshment my filgrastim tip is Emla cream. It probably doesn't hurt that much without it, but I find the reassurance of having it makes the experience easier. I just put a bit on about an hour and a half before I administer. And make sure the syringe has half an hour out of the fridge before using it.

Evening all. I have been buzzing about so had a big catch up on the thread tonight. Lots of people to wish good luck for surgery this week!
@Bloodybridget great news about the chest X-ray and fingers crossed for the scan.
I had my 10th Herceptin last week so my nose is pouring again. I also saw the oncologist and he is discharging me! He said I can consider myself cured which suits me fine as I shall just ignore any risk of recurrence!! I've still got 5 months of Herceptin and three years of zolendronic acid and 5 years of hormone blockers but he has written up all the prescriptions and doesn't want to see me again. Hooray!
Also the SafeFit lady is trying to wean me off her down to monthly sessions as I have been with her 12 weeks. I met a local personal trainer who thinks I am ready for her classes now she is starting up again.
I am starting the Moving Forward Course from Breast Cancer Now this week too.

Best thing of all today I went out sailing on a lovely classic gaff rigged boat in the sunshine with a celebrity sailing guru to instruct and entertain us. It was a magical sunny day out and I was hauling ropes and steering and belaying with the rest of them. Life is definitely settling down again even though I still have a long way to go to regain fitness.

The next challenge is my elderly parents as DF is in hospital and I have gone to stay with DM who is a bit forgetful. It's such an adventure being away from home but a little alarming as they haven't had any help in the house for nearly a year. I'm in OCD cleaning overdrive. DH has taken my car and gone home so I am stuck here unless I can get a train back.
Thinking of you all. It is such hard work getting through the marathon of treatment! It seems never ending.
Top

@FizzyOrange Go Fizzy - we're right behind you! Do you remember our conversation about the little paper surgery hats? Still wondering about those....

I also had filgrastim injections. Instructions are 45 degrees as it only needs to be under the skin not any deeper and less likely to hurt. For the aches and pains I too Clarytin antihistamines (some antihistamines are more cancer-friendly than others - Clarytin better than Benedryl).

@TopOfTheCliff yay - Top! Great to hear you back out sailing and being generally Topish. Not sure I'd notice if my onc discharged me - I've only met her once (2 weeks ago) and spoken on the phone twice Love my surgeon though.

@JeanLannes also thinking of you this morning.

@JeanLannes & @FizzyOrange I will be thinking of you both today.