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

Also, I claimed my Life Insurance straight away and paid off my debts which was a relief. I only had a certain amount of time from diagnosis to claim. X

@HumphreysCorner - Thank you - that’s reassuring to know. I do enjoy a glass of wine! I don’t drink anything else but I find it calms me after my generally frazzled days.

I’ve just had to scroll back to see what you have. Yours sounds identical to my mum. She was diagnosed about 20 years ago. Her tumour was triple -ve and 7cm but deep so she couldn’t feel it but did feel it ‘pop’ when she moved something heavy. It was in her lymph nodes though. Initial Chemo was successful and other than lymphedema she’s never had a problem since. It sounds like yours is responding well. My diagnosis has floored her.

Mine is inflammatory so I don’t have a lump as such. He thinks the area in total is about 3.5cm plus another bit a little deeper in so he considered it 6cm The biopsy on my lymph node was also positive. Her2 so I know it’s aggressive. I also had a (what I thought) was a tiny bit of eczema on my nipple which my surgeon said is Paget’s disease. It’s definitely not a rash which is a symptom which often gets reported. I consider myself to be breast aware - I’ve had two lumps surgically removed at a much younger age - but I’d never heard of this. I do check them a lot but didn’t think it was particularly significant. I will have to come to terms with that decision. I feel well other than what I thought were the usual age related and menopausal aches and pains.

If you don’t mind me asking what were the terms of your policy? I’ve had a quick look at mine and it says the diagnosis must be terminal with a prognosis of less than 12 months? I am reassured it’s in the background as it would mean DH could work a lot less.

@JeanLannes Ah - inflammatory bc - I understand your situation and anxiety better with that information. I will be keen to hear your results on Tuesday and the plan for treatment.

I've had liver problems in the past and chemo is tough on the liver - so I mostly stopped drinking entirely (I have a couple of glasses while cooking on Sat at the moment for a treat). It was tough - as I have been somewhat dependent, especially under stress.

I am evangelical about the use of exercise as medicine - something I actually lecture on irl but haven't, until this last year, actually taken my own advice! Here is an excellent lecture just out 2 days ago.

If there is one single, effective intervention we can take to improve both our ongoing quality of life during/after treatment as well as survival - this is it. I'm walking 3 or more times a week - the recommendation being 3-5/hours/week. Later I will get my bike going.

I don't have life insurance, sadly. We have really not been very smart with money generally. I do (typically) have a slightly bonkers scheme that has been in the background for a while to generate extra income that either I can enjoy or leave for them. I'm actually a bit obsessed with this at the moment but I need the distraction

@AlbertCampion my income is also split between a salaried job with sick leave and self-employment which is just gone (including tuitions).

@FizzyOrange how are you doing? I know you'll be thinking about Tuesday's surgery. What will be will be (this is my mantra for this week....).

PS the webinar above doesn't get going until about 5 mins in. There are shorter videos on this - but this begins with a look at the research findings and is just a bit more thorough generally.

@JeanLannes on my notes it mentions inflammatory but this was never mentioned in any conversation with the oncologist. Found this on my Airmid App which shows all medical history. Right breast invasive ductal carcinoma, grade 3, 5.5 cm in size, CK 7 and GATA 3 being positive, Triple negative with features of inflammatory breast cancer. Node negative.

DH and I took our life insurance policy out when I worked for HSBC and they made sure we had critical illness built into it so thankfully they paid out very quickly. The stipulation was that it had to be invasive, not necessarily terminal.

HC x

Just coming on, on the back on @Acinonyx2's post, to reiterate about the MacMillan SafeFit trial. Can't recommend it enough. It's an hour with a personal trainer three times a week for a month, and then drops down to weekly. It has been incredible for me - the sessions really improve my mental health hugely. They always start with a well-being check in which is a bit like counselling, and the exercises are all tailored towards my particular condition and treatment. At the moment we are working on getting radiotherapy-ready.

It's definitely one to consider - particularly cos it is free!

I've enrolled on SafeFit and it's been such a success they have quite a wait list now so I would enrol PDQ to get the ball rolling. I'm still waiting to get started probably in a couple of weeks or so.

@Acinonyx2 I am still getting used to what it is and the terminology in all its nuances. Am I right in thinking yours is inflammatory? It’s an evil, insidious little bugger but DH was kind in saying he think it’s met it’s match in me. However, I think outcomes are actually down to response and that for me is in the lap of the gods and the efforts of the medical team.

Thank you for the link. I will watch later. I am already evangelical about walking - I love it. I have the most amazing DDog who is my constant companion. She is gentle and affectionate and from the moment I got her as a puppy has just fallen in alongside me. She was an only one left from a litter and I went to see her on the day a good friend was having her mastectomy. I’m not at all superstitious but now I see that as a sign she needed to be in my life. We walk every day come rain or shine. I get the impression she senses I’m distressed as she keeps licking my arm - something she never normally does. I think animals are incredibly perceptive of how we are feeling.

I cleaned the greenhouse and was weeding the veg patch yesterday - while trying to be careful not to overdo it - and just sat for a while looking at the new life bursting through in the trees and listening to the birds. The quote you added a few posts back is so apt and gave me cause to stop and reflect.

@HumphreysCorner - thank you. Afaik mine is just terminal not critical so that makes sense now.

@JeanLannes no I'm her2, 2 tumours in the breast and node positive - but not inflammatory. I understand that does add another layer to the diagnosis though and tends to be diagnosed as stage 3 from the start (so I see why you are saying stage 3 immediately). Like Her2 generally though, treatments and outcomes are improving faster than the general stats can keep up with.

I'd love a dog! I do love my cats though - even though they are murderers, unfortunately. And I love gardening - I didn't start seeds this year as I knew I would have surgery about now when they would need a lot of care and frankly I cannot trust dh or dd to look after them. Instead, I am planning a flower festival of 'ready' annuals bought late May/June.

Here are 2 other quotes I find soothing at this time:

'A life is like a garden. Perfect moments can be had, but not preserved, except in memory. LLAP' Leonard Nimoy.

'Pass, then, through this little space of time in harmony with nature, and end thy journey in contentment, just as an olive falls when it is ripe, blessing nature who produced it, and thanking the tree on which it grew.' Marcus Aurelius 'Meditations'

Just read through posts since I posted yesterday morning, am feeling very moved by how generous people are with their support here. @JeanLannes I'm crossing everything that your cancer isn't as advanced as you fear - but as Acinonyx said, treatments and outcomes change all the time.
@quinin I bet your counting the weeks until you finish chemo, have you got all the dates in your diary? Hope you get through the rest without delays.
Thanks to all who advised me to call the chemo hotline, I rang this morning and will get bloods done tomorrow. Hoping very much that I don't need a transfusion!
Currently sitting in the garden watching DP work and offering my opinions when invited. And we sampled an apple cake I made with our coffee, v nice (it's meant to be for friends visiting this afternoon, but I thought we should check that it's edible

@Acinonyx2 I am just so anxious about my surgery on Tuesday. I want it out of the way but at the same time, I never want it to come. How are you doing? At least for both of us, this part will be over this time next week.

@JeanLannes I feel for you, it is all so very hard at the beginning. You are doing really well if you are still buoyant, I have been a weepy mess from the start and have many days when I still am. My sadness is focussed on DD and my mum, and feel like you, everything else can be sorted out one way or another.

Just wrote a long post tagging some of you and lost it!
I hope having proper showers will be good for those of you awaiting them! I've bought some dry shampoo to assist with lack of hair washing.
Apart from a couple of small plastic cups of prosecco with friends in the park 2 and a half weeks ago. I've stopped drinking pre surgery. Found some decent non alcoholic beers but the only red wine is a bit too soft and fruity. As mine is hormone positive and alcohol apparently can increase oestrogen levels I thought it best.
Getting quite nervous pre surgery now and what the post op results will show. I'm trying to focus on the fact this time next week the surgery will be over but it's hard.

@Bloodybridget I feel the same and as I have said so many times, this is the nicest thread on MN with the loveliest ladies. I am so grateful to have this support, no-one truly understands unless they are living it like us. I am hoping you don't need a transfusion too.

@FizzyOrange I have gone to a state of denial zen place. In treating phobias - there is a drastic method - extinction - where the person is plunged full on into the fear and they stay there, until their capacity to feel fear is exhausted - extinguished - and they become calm. So henceforth - they can associate that state of calm with the feared thing. This contrasts with the more common approach of taking on the fear a little at a time - so locked in a box of live tarantulas instead of holding a plastic spider for a bit, for example.

I feel that my fear is perhaps extinguished at least temporarily. The decision to actually opt for MORE surgery has exhausted my fear response. I think if I saw a meteorite hurtling at the house I couldn't summon up any response right now.

I think having decisions to make is especially anxiety-provoking - the will I won't I.

Gosh just spotted "your" instead of "you're" in my last post. My excuse is the sun was on my screen.

Meant to say, if any of you live near me in NE Lincolnshire I'm happy to meet up for a socially distanced cuppa and a chat.

HC x

Hello all, I've been lurking/reading the thread but not contributing for a few weeks. I've had my third inpatient round of chemo since then - got my own room this time which was a real blessing as I'm in for 5 days at a time on a drip.

This week I'm feeling feeble as am pretty anaemic. I think I now meet the threshold for a transfusion as my haemoglobin was only 80 but will need to discuss with my Haemotology team on Monday, as I'm not sure if it would interfere with the blood counts they are measuring in order to adjust my chemo dose.
Interesting to read someone upthread (I'm sorry I forget who) say that anaemia can be cumulative - I'm certainly finding that and am daunted by having 3 more intense chemo cycles to go.

My PICC line is also looking a bit red and inflamed around the entry site which is a worry. Have had it swabbed and district nurses are keeping an eye/redressing it but it makes me feel incredibly squeamish just looking at it. HC I'm sorry to hear yours has been playing up too.

FizzyOrange I'm sorry you are feeling so anxious about your surgery. I find the days before going into hospital so so hard with the anticipation, I just want to get it over and done with.

Acinonyx2 I'm in a similar place to you financially I think - part time employed which is giving me flexi furlough right now, but all my self employed income has been radically hit. Stupidly, I didn't buy the life and critical illness policy that I had quoted for me 6 months ago when we moved house, I am furious with myself about it (and with DH who wouldn't commit because it was too expensive!!!)

Jean welcome to the thread. I'm sorry you have to be here but the support is awesome.

I've got my SafeFit initial consultation tmw, hurrah! I am really pinning my hopes on it; I'm struggling loads with doing much exercise currently as I'm either tethered to a drip, whacked from the chemo or breathless from the lymphoma for 75% of the time. I do hope it will help me start to feel a bit more agency over my body, as I really feel like I am just someone who has to submit to having things done to them all the time currently.

@HumphreysCorner I live in Lincolnshire so not far away.
I might sign up for safe fit, but as I am about to start chemo I am wavering.
I am incredibly lucky that my work are paying me and the terms of their policy is 3 years at full pay. My DH has worked all the way through lockdown as well and so nothing has changed for us.
My work keep sending me flowers as well as has DH’s work. That does help to lift your mood massively.

I’ve been out this morning to return some clothes to a shop in the city and DD2 went for a skate with some other people we know. DD1 cooked roast pork with celeriac dauphinois which was delicious and I am having a G&T in the garden.

@FizzyOrange I panicked massively before my surgery and even emailed my head of HR to make sure he knew to give my death in service benefit to DH and what should happen to all the stuff in my desk. He was lovely and reassured me that I’d be dancing the funky chicken at my 90th birthday and he’d be there too.

@Acinonyx2 I too feel exhausted with all the worry of it all. Last week, a stoma became more of a real possibility for me and now I wonder if all of this extra worry has plunged me into a deeper sense of denial. I still feel as though all of it is happening to someone else.

@Babamamananarama oh thank you, I want it over and done with but I never want it to come. I have trawled round so many of the hospital departments that I seriously think my next stop should be Psychiatry, it has all made me totally insane.

@MrsPnut oh yes, I can relate to the worry about death in service, I am worrying that I won't wake up from it all.

I now have more mental energy and have read this thread from the beginning. The support you all give each other is wonderful. As upset as I was to have to find this thread a few days ago I am now so grateful and humbled. Such a truly kind community of exceptionally strong women.

@JeanLannes I also have just (on Thursday) been diagnosed with breast cancer. I don't know the stage yet. The waiting for more information is a real torture. I've read all of your posts and I'm thinking of you.

@Acinonyx2 the study about walking is fascinating and something I'm going to start. I will grasp anything I feel I have some control over. Thank you for sharing it.

@FizzyOrange I am sorry you are feeling so worried about the surgery. I have never had general anaesthetic before and will be having it soon. I'm terrified of all the things that could (but I know won't) go wrong. I wish I had more words of wisdom and comfort for you.

@MrsPnut your HR guy sounds lovely. And flowers always brighten a day.

I am annoyed at myself. Financial Planning is my job. I work with this stuff everyday. And somehow completely overlooked the need for critical illness cover or life insurance. I'm only 28 so thought I had plenty of time. Stupid.

@Babamamananarama I was just haranguing dh for not taking out any kind of insurance cover for me way back when these things were set up. He reminded me that as an adult, I could have just done it myself

Dh is entirely self-employed and it's very sobering to think what could happen if this were the other way around.

Safefit can tailor programmes for during treatment - I seem to recall from the lady on the phone. I'll be recovering from surgery so also a bit limited.

I suspect you do meet the trigger for a transfusion. I can pull up graphs of my past results online and can see the downward sloping line of my haemoglobin g/L over the cycles - and I heard this is common. It's not the kind of anaemia you can just supplement with iron unfortunately hence the transfusion.

I'm over 2 hours drive - but wouldn't it be great to have tea some time? We could watch @MrsPnut dance the funky chicken.

@FizzyOrange I think this week some sort of denial might not be a bad idea. I'm assuming that I'll at least find out what surgery I'm having at my pre-assessment tomorrow....

@ChickandLamb 28 is quite young so a lot more of a shock, I think. I was pretty footloose and irresponsible at 28 - you sound a lot more mature. Hoping yours is good and early (sounds like it may be) - although I know when other people try to suggest any kind of silver lining /good news in this context I just want to slap them hard

@ChickandLamb I have never had a general anaesthetic either and am scared stiff. I hope that when your time comes, I will be home and able to reassure you.

@Acinonyx2 I also feel the denial is helping me. I am hoping when you find out about your surgery tomorrow, that may make things a tiny bit better. I think a lot of my anxiety stems from all the 'what ifs'.

I wish we all lived close to each other and could meet for a socially distanced chat.

@FizzyOrange I've had 4 general anaesthetics (3 egg retrievals for IVF, one gall bladder removal) and I quite like them. Wish they could knock me out until next year! People pay good money for the drugs we are about to receive