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

AllbertCampion ooh what is SafeFit?

@Babamamananarama here's the site - I'm just looking at it now myself:

safefit.nhs.uk/

I had my second opinion appointment last night and I really liked the surgeon. He made me realise that my original surgeon had not told me everything and whilst it may have been done with best intentions, I am not happy.

I am therefore moving back to NHS care, as this surgeon heads the breast oncology team at my local hospital. I can still have both breasts done at the same time and if there is a space, done in April.
I should have my pre-op done next week and then I need an anaesthetist assessment due to other risk factors.

In other news, post partum parts are still in residence. Not radiotherapy damage but lack of oestrogen and brachytherapy swelling has caused thin skin to break down.
I have spoken to every GP at the practice in the past week and have another prescription to collect today to try. GP and chemo nurses are trying to get my oncologist to recommend something that will help. I figured a two pronged approach might get her moving quicker.

I too am in awe of @Bloodybridget, I am just not organised enough to make notes as I read through.

Safe fit sounds interesting, I might look into it after I have surgery.

@MrsPnut Having sore bits sounds so awful that I ask if this may be of possible help even though it sounds weird: Manuka honey?? It's been clinically approved for use on open tissue wounds. I heard plenty of stories & usually dismiss that kind of thing but a relative had success where nothing else had previously helped. That encouraged me to get some & I think perhaps it's helped my chemo mouth as no mouth issues since my first cycle. I'm not evangelising about it, just really want you to get some relief down there!!

@MrsPnut glad you got a second opinion and feel more confident with this surgeon. Hope you get the post partum situation resolved.
Thought I would balance my waiting moans yesterday with todays expeience. Appt due at 9, taken at 910 home in the house at 940 and I walked slowly home ( it is only a 10 min walk, well 15 for me these days). Sitting now with a cup of tea before I tackle the washing.

Hi all,

New thread, so intro again: I'm 39, dx with ER/PR+ HER2- breast cancer last August. I had a lumpectomy and lymph node clearance (6 cancerous nodes), chemo (4x fortnightly EC and 4x fortnightly Paclitaxel) and 15 fractions of radiotherapy. Finished active treatment in January, now "just" on Zoladex and Exemestane, and trying to make up for lost time...

@BitOfFun Count me in for the Cancervan, too. I am so sorry to hear that treatment has been withdrawn, and am sending you so, so much love. Wishing you as many pain free and laughter filled days as possible. And we are all here for you.

@Lubballoo How did the axillary clearance go yesterday? Are you feeling ok?

@TopOfTheCliff Great job highlighting the impact of all those missed mammograms and other cancer screening! It is beyond frightening to think of all those women who are out there, not knowing that there's a little bit of evil growing in their bodies right now. Urgh. I am too young to be offered mammograms and found the lump myself, but looking back, I had weird pain in my breast a couple of months before I found it and I now think that that was the beginning..

@Bloodybridget I love your system!

@InOtterNews - Just another shout-out, hoping you are out there recovering.

Love to everyone else.

Just back from pre-chemo blood test - nurse couldn't get blood from me today though despite multiple attempts so called my bcn to see if someone at the hospital can get it in time (or at all even...).

@Acinonyx2 that sounds shit. I hope you get some help. Arnica is good for bruising. If the initial insertion of the needle hurts you can try EMLA cream. It's got a mild local anaesthetic in it. Might make the digging about easier to handle. Take care x

@Acinonyx2 That is so weird - have just come back from a similar experience with pre-chemo bloods! Two nurses ended up having a go and I currently feel like a bruised pincushion. Thankfully they got some eventually but it was really unpleasant and I thought I was going to be sick at one point.

Got another attempt at PICC fitting tomorrow, so hopefully I won't have to endure it again. Wishing you lots of luck and hoping they get some out of you eventually!

@TopOfTheCliff thank you so much for my parcel, so very kind of you. ❤️

HCx

@Babamamananarama sorry I missed your question. SafeFit is a trial helping people having or who have had cancer treatment to improve physical and mental well-being. Acinony's link has all the info and I found it here: www.macmillan.org.uk/cancer-information-and-support/get-help/physical-help/safefit I think someone else on this thread is also doing it and is further ahead than me!

@AlbertCampion this is such a recurring problem for so many of us I can't help but wonder if it couldn't' be better managed. It just adds a layer of misery to an already stressful situation.

I'm going into the hospital in a bit and a chemo nurse will try getting it out of my port - apparently they can do that even though it's not a power port.

@BadEyeBri thanks - I have emla cream but I just use it for port access.

@KentishMama did they know you had 6 cancerous nodes before the clearance or after? Surgeon is talking about a biopsy to see if clearance is necessary but since I have 4 marked already that seems very optimistic to me and I'm not keen to have surgery twice. (Initial MRI was unclear though.)

@MrsPnut interesting about your surgeon. What kind of information had been missing?

@Bloodybridget glad to hear you actually have notes otherwise I'd really wonder how you keep track of us all! Pity we can't have a speadsheet in a pinned google drive.

Acinonyx2 thank you for the link, that looks brilliant. I've signed up.

Feeling quite bummed today. I've had a few days of feeling really really well and celebrating feeling back to normal (I've been ill for weeks and weeks with undiagnosed lymphoma, then 10 days in scary hospital with threat of stroke and then horrid chemo, then recovery) and have been allowing myself to think 'oh great, maybe I get a week of feeling good before I go in for chemo round 2 next Wednesday'. Anyway, today I've woken up breathless and it hasn't abated so awaiting a callback from the Haemotology nurse. Massive reality check that I am in fact ill and that all that medical stuff can presumably just puncture my bubble at any time.

I've just spent half an hour beginning a diary and logging all the events of the past month and putting all my notes in one place which has taken me right back into the unpleasantness and scariness of it all, too. Needed to be done as I want to document it all properly and keep detailed track of what happened and what helped, but eugh it's fairly intense looking back over it all.

Plus hair has started falling out in handfuls. 

Lol @Bloodybridget superwoman. 🤣 I have to keep pulling the screen down so I can read and reply. Love your spreadsheet job.

@Alittlewornout @HauntedDishcloth @FizzyOrange I so understand the tiredness. I am someone who was fine having no sleep when I had my babies. Before diagnosis I never slept but was fine but now, it's debilitating. I did a mini trot to the gate and back to look for post and practically collapsed in the car.

@MrsPnut it really does sound very sore and painful. I hope you get some relief soon.

@Babamamananarama I have chosen to keep DS 11 at home until May when chemo finishes and my body's immune system manages to build up a bit. Cannot risk the school run or the fact they aren't wearing masks or Covid testing. DH is unable to take him and I do have friends that will but it's the health risk I worry about. Am having a Covid jab on Sunday. The teachers are really good and doing 1-1 online with him and one has brought some work for him to my house today. Difficult to know the right thing to do.

@InOtterNews was thinking of you today driving home from the hospital. 💐

Went for my pre chemo bloods this morning and what a surprise, my new PICC didn't work so had to be pricked to get blood. Had another Urilkinase injected which I have to go tomorrow to have it syringed out.

Big wave 👋 to everyone else.

HCx

@Acinonyx2 My nodes looked fine on ultrasound and MRI, but my very thorough surgeon had them do a microbubbles guided biopsy of the sentinel node before the surgery. The sentinel node came back cancerous. Because the remaining nodes looked good on imaging, we then thought it was pretty unlikely that many are cancerous, and I negotiated with the surgeon to do a level 1 clearance only (rather than full axillary clearance of levels 1-3). I wanted to reduce the risk of lymphoedema a bit. It was quite a shock when 6 out of the 13 nodes they removed were cancerous though!
The surgeon then pushed for me to have the rest of the nodes removed as well, but the oncologist and radiologists felt that if I had chemo and radiotherapy to the remaining nodes, I'd be okay without surgery. (I would do almost anything to avoid more surgery...)

I think if I had known that at least 4 nodes were affected, I would have opted for the full clearance though. With hindsight. Not sure my decision making was all that great in the ten days between getting diagnosed and having surgery!!!

Hi everyone, I was invited to join from a thread I started.
@JustDavesWife, you're slightly ahead of me but I hope all goes ok for you.
I had my breast clinic appointment today and have 2 suspicious lumps on my left breast so had biopsies and will go back next Wednesday for the results. From everything said, it looks like it's going to be cancer. The doctors will have their meeting on Tuesday so there will be a plan for me. They said my armpit and lymph nodes look ok from the ultrasound so that's one positive.
Currently feeling scared and anxious. DP is the only person who knows. I have an 11 year old daughters and not sure whether to say something to her yet or wait until after next week.

@HumphreysCorner more PICC woes! You me and @AlbertCampion seem to have the worst veins ever.

You just couldn't make this shit up. I went to get bloods from my port and the nurse !! Now port needles are pretty sturdy and the technique is to just drive it home - man that was a shock and a half. After I'd calmed down my trusty favourite nurse came and did it for me.

@KentishMama Yes I'd like to reduce the lymphodema. Interesting that your biopsy was before your surgery - it's often during the breast surgery which would mean going back again for node removal. Much rather get it all done and over with.

@Babamamananarama interesting that you have a cancer that actually makes you ill. Breast cancer doesn't do that - it's just the treatment. Seems weird, that I wouldn't feel so ill if it weren't for the treatment.

@Vinorosso74 Welcome. Difficult - these early days of waiting for tests and plans. I told dd15 about the tests as they came along - they pick up on stuff very easily and I wanted her to feel there was nothing worse she wasn't being told.

Welcome @Vinorosso74, here to handhold while you wait for your results. Waiting is by far the worst bit. I too told my 11, 14 and 17 year old as soon as I found the lump and they helped me through every stage of biopsies, scans etc and now treatment.

HC x

I think we'll tell DD at the weekend.

She has been so happy this week being back in school. DP is trying to be optimistic that it isn't cancer but from the conversations today it's looking likely.
Thanks for the welcomes although I have to say it's not a board I thought I'd be on

@Vinorosso74 my experience is that kids take their emotional cues from us - and being straight forward about something demystifies it. My dd assumes that I'm having treatment and will get better. It's hard to know what kids know about cancer - but turns out she knew about losing my hair because someone's mother in a marvel movie. That mother dies so they do see this stuff. Admittedly nothing stresses my dd much and she is not the most empathetic of kids - you know your own best - but it I have found it quite hard to judge what she might be thinking as she tends towards the name rank and serial number style of communication (without the rank and serial number...).

@Vinorosso74 I'm so sorry that they think it's cancer. I'll keep everything crossed for your appointment next week.

I find out my results tomorrow and actually have no idea which way it's going to go so I'm absolutely terrified. I have health anxiety anyway so this has sent it through the roof.

It's so difficult with children, mine are 7 & 12 and I know the 12 year old has overheard some conversations but I'm going to wait until tomorrow and then either way I'm going to have a chat with him because I don't want him to think I'm hiding anything. He is a real worrier. 🙁 My dh is the most laid back person I know but he admitted earlier that he hasn't been sleeping because he is so worried which hasn't made me feel better! He has even taken the day off tomorrow so he can be here when the hospital call.

Vinorosso I'm sorry that you are having to join this shitty club too. It's such an overwhelming gamut of emotions isn't it? And so so hard to manage the flow of information to children. I'm sorry you are also going through this.

Humphreys that's a hard call about taking your child out of school but I can completely understand that choice. We are in rural Cornwall here where Covid rates are currently completely suppressed, and they are in a very small village school with only 120 kids total and class bubbles of 30, and we are yet to have a local case. I think if they were at secondary school I would feel much more vulnerable. It's hard to think what decisions we'd be making in non-Covid times though as obviously we are also vulnerable to all the usual germs that small children bring home with them...

Rang the nurse and she said breathlessness may be anaemia, let's see how I go...

@JustDavesWife do let us know how you get on tomorrow. I hope it's good news.

Yes, it is so many emotions and very overwhelming. I just didn't expect this.

@Babamamananarama my breathlessness and other bits was anaemia and a blood transfusion sorted it.

HC x

@AlbertCampion I feel the same, I am struggling with body image too. I feel embarrassed in front of my DD, son in law and every doctor and nurse that I encounter that I have 'let myself get into this state', if that makes sense. I know that from a rational point of view this is ridiculous, my OC was picked up on a CT scan to check my spleen and liver to investigate a possible blood cancer so I hadn't neglected my health. I also feel awkward about being bald and don't want anyone to see my head, not even myself, so wear a scarf 24 hours a day! It is very hard isn't it xxx

I have been to have chemo 4 today and had to dance through hoops to acquire the blood thinning injections that the CNS had assured me last week would be waiting for me today . I had naively believed her when she had reassured me that one of the chemo nurses would show me how to do the injections (I had presumed they would have saline injections to practise with) but one of them merely gave me a rushed explanation whilst unhooking me from the IV machine so I am feeling quite nervous for my first one in the morning. I have to do two a day and am hoping to go back onto my current tablet blood thinners as soon as possible.