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

Looks lovely liz
Blood test done.
I'm assuming if its bad news they contact you pretty quickly?

@Jenthefredo It'll depend on who needs to look at the blood test and whether it needs to go to an MDT first.

@Lizdeflores That looks lovely, I adore being by the water. I think if I feel up to it at the weekend, we might go and walk the dogs around some lakes at the local wildlife trust place.

@JeanLannes Glad you are feeling better, I'm reading The Vinyl Detective series but it goes in fits and starts. Not non fiction but I did recently read The Midnight Library by Matt Haig and I absolutely loved it as did my best friend. It's the best book I have read in a long time.

I've had my first nap of the day for just over an hour, and had my second breakfast (boiled egg and Vegemite soldiers). I'm considering a shower now and then back into bed for another nap.

In my experience,yes I did get the bad news quickly. However reading this thread has made me realise how different standards are in different areas of the country.
I hope you do get some answers soon the waiting is the pits x

@Jenthefredo it's so hard waiting for results and for you knowing the implications of the results it is grim. Can you distract yourself? Do some complicated reorganisation of the house or some decorating? I am sending calming waves of support down the internet. Whatever the results the team will have a plan.

@Lizdeflores I always wanted to come home to my part of the country by the sea but had to follow exDH inland for many years until finally he got a job near my childhood home. It just felt right to be there. When we were in the Midlands it always felt like the elastic was pulling me back. Two of my DC feel the same and one is a wanderer who will never come back I think.

I am sad about BOF. She was always good value on the relationship boards and put up with no nonsense. She invested a lot in Mumsnet and helped a lot of people.

Thank you all x
Funnily enough I am decorating atm :)
I'm now 18 months down the line from my 1st appt re: my eye.
My bone/joint pain has been dismissed for years as fibro/peri related.
I'm trying to be positive and think well...I've had these pains for ages but...
Ugh
I am catastrophizing which infuriates me
Added to the awful news about bof I have 2 colleagues, 1 of whom got a terminal pancreatic cancer diagnosis 2 months ago and another who was diagnosed with myeloma and had a stem cell transplant this week.
Cancer can just fuck off 😡

@MrsPnut the antihistamines have me constantly napping and the steroids make me want to snack

Y'all know how obsessed with walking as medicine I am but I can't while by chest is so itchy. If I keep still I can almost feel 'normal' - then I start moving

@TopOfTheCliff I have a whole new appreciation of your complaints about not feeling fit while recovering from surgery and getting mobility back. I feel quite decrepit and cannot remotely imagine getting my arm over my head.

@JeanLannes sorry chemo was rough - nausea etc is miserable. I tend to have a few different books on the go and my taste keeps shifting around. I have a little cancer library going - I'm sure we've got the lot between us all. I've always got space for these but haven't found one that I think is really stand out. Just finished Sian Williams 'Rise' (mixture of autobiography as a cancer survivor and cases/advice on resilience - quite like the mixture and general tone).

If you like psychologist's writings - I'm currently working my way through all Irvin Yalom's stuff - I've read almost all the case study books (he's an existential psychiatrist and very good writer, engaging though perhaps not quite as accessible as Edith Eger- now The Schopenhauer Cure, one of is psychological/philosophical novels - possibly a bit marmite). I usually have something of this type on the go. Then interspersed with murder thrillers (just read The Last Wife - OK not brilliant but dos the job) and sci fi (e.g. the latest Becky Chambers). And a pile of non-fiction - e.g. just now, A Crack in Creation (CRISPR gene editing), Blueprint: the evolutionary origins of a good society.

A lot of the time during chemo I couldn't focus enough to read much so it's nice to be reading properly again. Generally great to have a chemo-break - apparently not starting again until after radio.

@AlbertCampion I'm keen to sort my diet out generally which was impossible during chemo. We could do different fasting days but still check in on progress. Looking to switch to more whole grains etc. Are you working these days? I've got a couple of pages due next week and I really MUST start looking at that as I'm slower than just now. Makes my eyelids feel heavy just thinking about it....

Omg I am so sad about BoF. She once sent me a lovely video tour of her house, as we were talking about DIY and stuff. It was so witty and funny - it lifted my spirits when I was feeling crap. I hope she got to do everything she wanted to on her bucket list tour.

@Acinonyx2 I'd definitely be up for checking in with each other on the fasting thing. I have been doing ten days on 16:8 and only lost two pounds, so I think I do need to up my game a bit! I think I'll try 5:2 as it might give me more of a kick start. I am also trying to reduce carbs, but won't kick them completely, I think.

I have returned to work this week on a phased return. It's going well, although I find I charge at things because I am so enthusiastic about being back, and then find I am exhausted! I need to find my balance I think. I've also started back on my book, and although I am not sure about the quality of the writing, I'm ploughing ahead regardless - I think I just need to get back into my stride!

Sorry - me again! Can I ask what others' experiences are of radiotherapy booking? I received a letter yesterday telling me I am due to start next Wednesday at 10.30, but not giving me any other appointments. I rang up and they said they don't tend to let you know the times in advance - you just have to accept that you will be needing to go in at some point every day. Is this normal?! It seems insane - I can't plan anything for work or school pick ups. When pressed, they told me that my appointments will all be sometime in the morning, which I guess is something, but still not ideal. I was expecting a list of times for each day - was that just hopelessly optimistic?!

So sad to hear about BitOfFun, so kind and helpful to many. May her beautiful soul RIP.

Albert i'll take a look at those fans. Trouble is i seem to be either freezing or a sweaty mess.

jean that sound rough, hope the new meds bring relief and you feel more human again soon.

Liz wow - what an amazing view. I'm heading to the coast today for some sea air, the coast is so very soothing.

Jen it so hard waiting for results and sorry to hear about your colleagues, that's tough. I get my scan results on Friday and am now questioning al the pains in my body.

Acinonyx2 that made me laugh about the cancer library. I have my own ever increasing library going here.

My stand out book is Radical Remissions by Kelly Turner, it's a study looking at people with mostly stage 4 cancer or reoccurrence, who have significantly outlived their prognosis or overcome their cancers all together and the common themes they used to heal themselves. I dip in and out of it all the time to remind myself it's possible to overcome all sorts, even against the most difficult of odds. Next on my list to read is Love, Medicines and Miracles by Bernie Siegel and i have just finished Louise Hay's you can heal your life.

I have never read a self help book in my life but cancer is taking me down a path i never in a million years thought i would venture into, yet i find it increasingly compelling.

The downer for me this week is i have developed some sort of acne on my face from the chemo. I've pick a spot that now wont stop bleeding as my platelets are crap - sigh.

@MrsPnut I'm and jealous that you can eat after your first FEC!! I was a vomiting sicky mess for 3-4 days after. They must have you on some good meds!

I'm gradually weaning myself off my chemo diet, which was a steroid-induced eat what you fancy when you fancy! I don't have the discipline to do a proper diet or fasting, but I've swapped to rye bread with plant-based spread instead of normal bread & spread - it's really nice, a nutty flavour and nice texture. No more than two slices a day. Instead of chocolate ready brek for breakfast () I'm having branflakes or overnight oats with oat milk. And most days I'll have a fruit smoothie with manuka honey & chia seeds - whatever they are...I gather they're healthy tho! I haven't sorted my main meal of the day - wondering about trying Mindful Chef meal kits but DS13 is a fussy eater so would have to cater for him separately.

@quinin Try using an anti-bacterial cream on any spots. It may be that your normal skin bacteria is going out of control due to your reduced immune system and giving you spots.

Sorry I've forgotten whose hair was growing & falling out again, but I've read that the follicles can take a few months to repair themselves fully so you can get a short growth cycle and/or you can get curly hair if you normally have straight hair for a while. Some people have enough hair grown back after 3 months for a very short hairstyle but I think 6 months is more average.

@MrsPnut I'm and jealous that you can eat after your first FEC!! I was a vomiting sicky mess for 3-4 days after. They must have you on some good meds!

I'm gradually weaning myself off my chemo diet, which was a steroid-induced eat what you fancy when you fancy! I don't have the discipline to do a proper diet or fasting, but I've swapped to rye bread with plant-based spread instead of normal bread & spread - it's really nice, a nutty flavour and nice texture. No more than two slices a day. Instead of chocolate ready brek for breakfast () I'm having branflakes or overnight oats with oat milk. And most days I'll have a fruit smoothie with manuka honey & chia seeds - whatever they are...I gather they're healthy tho! I haven't sorted my main meal of the day - wondering about trying Mindful Chef meal kits but DS13 is a fussy eater so would have to cater for him separately.

@quinin Try using an anti-bacterial cream on any spots. It may be that your normal skin bacteria is going out of control due to your reduced immune system and giving you spots.

Sorry I've forgotten whose hair was growing & falling out again, but I've read that the follicles can take a few months to repair themselves fully so you can get a short growth cycle and/or you can get curly hair if you normally have straight hair for a while. Some people have enough hair grown back after 3 months for a very short hairstyle but I think 6 months is more average.

@AlbertCampion at my first radiotherapy appt I got the dates and times for all 28 appointments. My understanding was that there was some flexibility if I had needed to change times but I didn't need to.

Rest in peace BitOfFun. Your courage, wit and sheer goodness shone from every post x

Hello, please can I join. Just been diagnosed with breast cancer. Thankfully its DCIS and hopefully non-invasive. Just so thankful it's been picked up as it didn't show up on the mammogram or ultrasound, they did a biopsy just to be ultra cautious and it came back with cancer.

Still in shock really and just told my DC. DD took it well but DS is really shaken up and worried about me even though I downplayed it a lot and was really optimistic.

Have surgery booked next week and trying to figure out if I should have a full mastectomy or breast conserving. I've made a new thread asking for opinions on that.

One thing I'm worrying about is that DCIS is non-invasive if it stays in the duct. By puncturing the duct during the biopsy will this not have made it spread?

Hello, please can I join. Just been diagnosed with breast cancer. Thankfully its DCIS and hopefully non-invasive. Just so thankful it's been picked up as it didn't show up on the mammogram or ultrasound, they did a biopsy just to be ultra cautious and it came back with cancer.

Still in shock really and just told my DC. DD took it well but DS is really shaken up and worried about me even though I downplayed it a lot and was really optimistic.

Have surgery booked next week and trying to figure out if I should have a full mastectomy or breast conserving. I've made a new thread asking for opinions on that.

One thing I'm worrying about is that DCIS is non-invasive if it stays in the duct. By puncturing the duct during the biopsy will this not have made it spread?

Hello, please can I join. Just been diagnosed with breast cancer. Thankfully its DCIS and hopefully non-invasive. Just so thankful it's been picked up as it didn't show up on the mammogram or ultrasound, they did a biopsy just to be ultra cautious and it came back with cancer.

Still in shock really and just told my DC. DD took it well but DS is really shaken up and worried about me even though I downplayed it a lot and was really optimistic.

Have surgery booked next week and trying to figure out if I should have a full mastectomy or breast conserving. I've made a new thread asking for opinions on that.

One thing I'm worrying about is that DCIS is non-invasive if it stays in the duct. By puncturing the duct during the biopsy will this not have made it spread?

Sorry for multiple posts!

@AlbertCampion. I got a similar letter but when the nurse(?) phoned me up to confirm everything, she was very accommodating in terms of timing. She already had all my times booked in but she went through each day and moved them where she could. I imagine different hospitals will work differently though.

So sorry to hear about BoF. I feel as though I've known her for years RIP.

@JingleJum. Welcome. Someone will be along in a minute to advise you. There are a few of us on here with breast cancer of varying type and stage. I had a lumpectomy and was never really offered the alternative.

I've not been on here since my surgery (burying my head in the sand?). So sorry for your loss Top. Welcome to newbies and sorry you find yourselves here.
Finally got my post surgery results today; they found cancer cells in 3 of the 5 lymph nodes from the sentinel node biopsy. I need to have a CT scan and a bone scan. I have an appointment with the oncologist next Wednesday which will tell me more about the chemo I will need.
I'm terrified it's spread, scared of the chemo etc.

@AlbertCampion I was like Bri, at my planning appointment, I got my list of appointments. I crossed them off with a marker as I completed each one so I could see how far I had come.

@HauntedDishcloth I wasn’t sick with cisplatin either. I had Emend yesterday and today, Ondanestron yesterday and this morning and dexamethosone yesterday and this morning.
I’ve missed out the lunchtime Dex because I don’t think I need it and might miss tonight’s ondan because I don’t like the side effects. I have a couple of other anti emetics as well just in case.

@JingleJum Welcome and sorry you find yourself here. DCIS doesn’t usually become malignant even once the duct is breached. Has your surgeon discussed the two surgery options to you?

@Vinorosso74 The chemo is tough, but my lymph nodes were very definitely involved at diagnosis in November and they don’t think it has spread from then. The chemo is because I had so many nodes removed that still had cancer and that my tumour was still so big.

Yes we did discuss the options but I was still in shock so a bit hard to remember everything! The consultant was more in favour of a lumpectomy but as I have anxiety she did say that I could consider a mastectomy. I think a lot will depend on the results of my MRI on Friday but I think I will have to pretty much make a decision on the spot once I have the MRI results as my surgery is booked for next week.

As this was only diagnosed "accidentally" I don't know how I will be able to live with the risk of it returning and not knowing about it. Also I have small breasts so think a lumpectomy might take away a relatively large portion of what is there!

But I'm also scared of having such a big surgery and the risk of implant side effects/problems etc.

@JingleJum In the last month or so I have had a lumpectomy, axial node clearance and the other breast reducing. @Acinonyx2 has had the same operation but two weeks after me. @Vinorosso74 had a mastectomy and immediate implant and sentinel node biopsy. There are possibly more but my brain isn’t really working.

We’re all still here and wittering on, maybe call your breast nurse and have a chat with them for more reassurance.

Thank you, its good to know I'm not alone.

@Vinorosso74 I'm assuming you have not have either chemo or a CT scan up til now? It's unlikely that you will find anything on the scans - that said - I found it was one of the more nerve wracking results to wait for myself and understand it's hard not to worry.

@JingleJum if you know this is going to play on your anxiety you will need something to address that - ask for some specific counselling for example. I was recommended a lumpectomy but could have requested a mastectomy. I read the literature and understand that if lumpectomy is a viable option, recurrence risk for lumpectomy and mastectomy really are the same so no point in opting for the latter. Sometimes mast is necessary for other reasons - but clearly not in my case. Just telling you my decision process, of course it's up to you.

@AlbertCampion I am being driven slightly mad by the lack scheduling of things and the radiotherapy will be the worst to fit in as it's every day. Don't know which week it is yet though. I have a summer school coming up where I need to be 'live' 2 days a week

@quinin I had mixed feelings about 'Radical Remission'. It's an interesting read but as it progresses some of it is a bit too far out there for me. For most of the cases, there is actually no way of knowing what caused their remission. The 'John' healer in Brazil has since been convicted of multiple sex offenses. I preferred 'Anti Cancer' by David Servan - don't know if you've seen that one.

I managed to fit in a small spot of shopping between hospital appointments and accidentally bought a new suite of living room furniture.
It runs in the family. My mum once accidentally bought a house. She'd only gone out for a haircut
Cancer may bankrupt me