Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

@Whatevershallidowithmylife congratulations, hope you’ve had a lovely day

Thanks everyone for your messages. I’m 2 weeks out from my DIEP reconstruction so I think I have way too much time on my hands to over-think. Unfortunately not much I can do about that, but I am recovering well.

@Penguinsa thank you for taking the time to write such a comprehensive answer. It was really helpful to read. I guess everything will be clearer once I see the oncologist - everything I know at the moment is from the breast surgery team after discussion with the mdt. No mention of additional surgery for lymph nodes currently, but will have radiotherapy to the area. The 2 year treatment mentioned was abem. I also have 2 kids, not in the same situation as you but it’s important to me that I’m ’back to normal’ as soon as possible so they don’t worry about me.

@thesandwich absolutely no googling random sites. I might get myself to the gp soon as my sleep is terrible (but this might be partly due to discomfort from the op).

@TopOfTheCliff one day at a time! In a funny way think it’ll be easier to do that when I’m back at work. It is rubbish, but I guess you just have to get on with it!

Now if anyone has a cure for my irrational hatred of needles / cannulas that would be most helpful.

Totheleft It was just a lack of staff as reason for no cold capping on Pax as weekly.

Nomorebear I did find chemo helped with the dislike of cannulas as I lost a lot of feeling in my arm. You can also have a picc if you prefer and most people do. I did cannulas throughout chemo and if you drink lots of fluid before chemo there's more chance they get it in first attempt and keep arm warm helps. You do adjust to it over time, I have checks next week and I just think I am distracting myself before then and not letting cancer take my good days and what will be will be. It takes a while to get to that point but after a while the tests just become routine and even chemo although I would say it was brutal each cycle is the same. Once you've done one its just repeat, useful to keep a daily symptoms diary, get a dental check up before (likely private with state of nhs dentistry) for extra fluoride toothpaste and any work needs doing) and pair up with someone doing chemo at same time as a chemo buddy - best to chose someone like yourself, so cheerful people match cheerful ones and moany anxious ones match moany anxious. I was the moany anxious type, Top is the cheerful one. With the moany ones its just like this week was rubbish how was your week rubbish as well and what happened but its nice to have company. I had two. And any days out you can get take them. So before it starts and any gaps. Outside is good - I did a trip to Scotland before and puffins in Wales during then Cornwall after. I found the trips gave me the strength to carry on.

@Whatevershallidowithmylife

Happy times! Congratulations 🥳 ❤️👏🥂🎉

@Penguinsa you made me laugh! “Top is the cheerful one”. Very true. But the secret I discovered @Nomorebear is that you don’t have to be brave going through chemotherapy. As long as you turn up on the day it doesn’t matter if you are crying and terrified or brave and stoical. The nurses will have seen it all before and will get you through. Tell them you are scared of needles. Ask if you can have EMLA cream to numb the skin. ( I used that with my portacath and it helped a lot) Take some treats to cheer yourself up. I took a nice coffee and some cake from the hospital cafe each time. That’s probably why I put on so much weight.
My latest discovery is the foot wrap packs that you put on for 20 minutes and soak your feet in Argan oil or whatever. My SIL has been buying them for me and they are wonderful. My nails are recovering fast now.

Room for one more?
I was diagnosed in March with Stage 1 invasive breast cancer with a tumour measuring 15mm (along with other areas). I had a bilateral mammoplasty early May, from which I’m recovering incredibly well. I had my results appointment yesterday and am reeling slightly.
When removed the cancer was 70mm along with two other 5mm areas. Plus 2mm in one lymph node. Grade 3. I am
booked in for a CT scan on Monday as a precaution to make sure it hasn’t spread anywhere else.
Am I likely to face chemo?

@Alargeoneplease
Good morning and welcome although you, like us, would rather not be here.
So sorry that you find yourself here though. I am on my second trip in two years on the cancer merry-go-round with a Hormone-/HER2+ BC.

Right, do you know what type of cancer you have? Such as triple positive, triple negative, hormone +/- or HER2+/-?
It isn't unusual to find that tumours are much bigger once they're removed due to limitations of scanning and the gap between scan and surgery but that's quite a rapid growth. I'm sorry to say this but yes you will be very likely be having chemo.
You'll find lots of us here and there will someone with a cancer like yours. We are here for questions (however stupid you think it is as we've all had them), worries and (so many) venting (a lot!). Don't over google and scare the crap out of yourself. Stick to the info on the cancer charities sites. Stay in the now and don't borrow tomorrows worries and be your own advocate when dealing with the medical professionals.

Thank you so much @MothralovesGojira for your reply and welcome.
I’m sorry that you’re facing this again so soon.
My BC is hormone+/HER2 -
I was aware that sizing may be different once removed but I was shocked at how quickly it had grown.
I’ve avoided googling, bar using Macmillan and Breast Cancer Now sites, for information. Dr Google can be a scary place.
I’ve sort of got it in my head that I’ll need chemo but my other half is trying to be positive that I won’t. If I do, then I’ll crack on.
Ladies, you’re all amazing ❤️

@Alargeoneplease
There are several ladies on here who have hormone+ BC and they'll be along soon enough to give you you a rough idea of what to expect but it will definitely be chemo, probably radiotherapy and hormone blockers for 5 yrs.

I have a partner like yours who has stuck his head firmly in the sand. Mine calls it 'being an optimist' and says I'm a pessimist but I say that I'm a realist! It's difficult for partners and men in particular. When I was diagnosed with BC1 in 2022 I didn't let DP come with me to any appointments because he only 'hears' positives and the one appointment he did come to he only remembered the good bit (clear margins) and forgot the bad bits (chemo, RT, immunotherapy etc). I felt very much on my own through the whole thing.
When I was diagnosed with BC2 in Feb this year I've taken him to most appointments and I had to decide to delay any treatment for 6 months because we have a ND DC who's doing exams and will not cope well with this and I so want them to have a carefree summer.
I'm going back to hospital next month for scans and to see how far it's spread. DP is absolutely holding on to there being no spread at all and I can have a quick bit of surgery and it will be done and dusted. He will not discuss the huge possibility that I will now die. I had a horrendous time with BC1 as oncology where I am is shit and they did so much wrong and even now they will not discuss treatment until I'm a 'good girl' and have surgery - utter wankers.
Hopefully you will be in the majority of people on here who have excellent treatment - my case seems to be the exception and not the rule.
I have no advice about how to deal with a partner who sticks their fingers in their ears chanting la la la. I come on here and vent because I can't do it with him as he wants to be able to 'solve' the issue so we just don't talk about it which makes me feel very alone in this. He can get counselling through MacMillan if he wishes or a Maggies Centre if you are lucky enough to live near one but mine won't do that either.

@Alargeoneplease I feel for you - the shock of finding out that the cancer is bigger than initially thought is scary at first! I was in a similar boat. I had what was thought to be a tiny invasive er+ cancer (3mm) mingled in with 5 cm of DCIS that turned out to be way bigger on final pathology. Invasive was 30cm & DCis was a whopping 9 cm (grade 3). Was also in lymph node & not as er+ as it was thought to be initially . I did have chemo & I imagine they will talk to you about having it. It is normally advised for grade 3 cancers AFAIK. I had EC x 4 followed by paclitaxol x4 every two weeks - it was doable & I just kept thinking of it being like drain cleaner killing anything nasty that may be floating about! You will be in good hands & chemo was not as bad as I thought - you get a tonne of meds to minimise side effects! Best of luck - I am now almost 2 years post diagnosis and have pretty much got my life back - a diagnosis like this does change you but there are some positives! I live much more in the present as a result & value the here & now much more than I did previously! Good luck xxx

@Nomorebear I have a phobia of cannula's and my oncologist gave me lorazepam which has helped calm me down so much even when the nurse hurt me yesterday, I wanted to cry but didn't. Also drink lots of water the night and day of chemo that will really help your veins. They also dunk my arm in hot water to bring all my veins out.

I'n not sure about your unit but they do my cannula in a separate room and my mum is allowed to wait with me but she leaves after. But I think they made that accommodation due to my autism but you can always ask if you want someone with you just to reassure you during the cannulation.

Alargeone So sorry you have cancer and its much larger than on scans. That will be chemo - they decide at MDT but use the 10 year Predict breast figures survival rates which are available online (Predict Breast model) and if the 10 year benefit of chemo is over 5% its chemo and its over.

Its very hard for husbands as well, we are definitely the right way round in my house as he's great at cooking and looking after me, but was also ridiculously optimistic when I was first diagnosed and kept talking about when we are retired together and I was 48 with 3 areas of cancer. In the end I cried and told him to stop talking about retirement as I was facing a future which would likely be without one and at first he argued of course you will survive and then I told him again and he took my hand and said he would stop and he stopped and he cried. But it helped us both. Sometimes men are better with numbers - I am also like this, actually all in our family is like this and so I like the Predict Breast numbers but only look if you are ready to see survival rates. And remember breast cancer survival has I think doubled and the 15 year rates especially are old data by the nature of them. New treatments come out all the time. With chemo I was terrified and devastated to find out I had to have it - for some reason they seem to tell women initially they won't need it then post surgery suddenly tell them they will, even when from the initial scans its obvious they will. But I see cancer treatment as like a war on cancer and chemo is a good weapon, its just unfortunate it affects all parts.

My actual treatments on the NHS were very good, the waiting inbetween was sub-optimal for survival, and the mental health support was charities. They also hate you diverging from their tick box plan but I am used to that with a SN child and when their plan fails they try exactly the same again rather than admit their plan is bad. You can also complain via PALS and cc Chief Executive for any serious issues, have to guess CE e-mail but they are all the same format at ours. I got my surgery from a 2 month delay to that week via that and the Chief Exec office called me and then my second op got sent private paid for by the NHS. But I previously had a job with unlimited private medical insurance and I wish I had that still though often its largely nicer food and a room to yourself and my reconstruction surgery wouldn't be a 3 year wait.

Forgot to say it doesn't mean its grown that much since the scan, especially if its lobular, sometimes the scans don't pick up well especially lobular as it grows as a spiders web rather than a lump.

With the cannulas as well some nurses are much better than others and you can ask for a nurse that is good at cannulas. It sounds a bit rude but actually when I said it the nurse said she was bad at cannulas said I am very glad you said that as I hate trying and failing to give cannulas. Then she got the experienced nurse who got it in first time. I look away as well. You do get more used to them.

I don’t know how I can cope with this leg pain anymore. The painkillers can’t be good for me either. It’s a challenge to even sit on the toilet seat. I’m up early as I have an eye appointment so that will be another three hours waiting in the clinic.

I looked in the mirror and don’t recognise myself I’m so pale and drained looking. It’s pain isn’t it? Second chemo on Friday. I need to find my fighting spirit because I’ve felt so well after the first few days but this leg is making me so helpless. I can barely get the stocking on

Oh @EachandEveryone This isn't good. What are they going to do about this pain? You can't continue like this. Are the pain killers doing anything?

Not really as the swelling comes the minute I stand up. Apparently it’s the cancer causing it and it will be better once the chemo starts working. I’m seeing oncology pre chemo on Wednesday, I don’t know what they will suggest and I don’t want to go down the morphine route or do anything that will affect the chemo,

Yes see what oncology say.
Let's hope they can suggest something to make you more comfortable at least. Sounds a real struggle. Can you walk around your property okay? Get in and out bath?

@EachandEveryone are you in contact with your local hospice? They might be able to offer some help.

God no I can even think about hospice in relation to me. Im very detached and he said there is a good chance this chemo will work.

i cant get out of the bath. I can just about sit on the loo. Its fine when im resting but dreadful the minute I start to move.

i actually was looking at the elderly in Hampstead the other day and got talking to a carer £20 an hour. I need on to come and help me I cant clean up or put my stockings on, i wonder if they will do an hour a day😃

im seeing a reflexologist next week just for my own mh really. I do have abit of money as I partially retired so can pay I just dont know how to go about it.

Sorry @EachandEveryone, I lost track of which thread I was on.

Have you thought about trying to claim PIP?

@EachandEveryone I think having carer would ease some stress and worry of dealing with the day to day stuff. If you can afford it, I would go for it.

I've had reflexology at my local hospice. I've started acupuncture now.

I did it through a charity before but I cant be bothered with public trNsport this time around. I was very lucky to get into nursing just in time that i could gent one of my pensions at 55. I wont be laughing if work dont give me full sick pay again though😀

I’m so sorry @MothralovesGojira to hear that you feel so alone and that you’ve had such a shocking time in regards to treatment.
So far, I cannot fault my Breast care unit and the care I’ve received - it’s been nothing short of amazing. Sad to hear that not everyone receives the same treatment.
My OH too has been incredible. He’s been to every appt with me and listens to my worries but I think the thought of chemo scares him, he’s already said he’d rather it was him going through all this than me.
I quite a realist, as much as I try and always think positively and I want to know what I could be facing. From doing some reading and also using the Predict - thanks @Penguinsafor the recommendation - calculator, it looks as though chemo will be suggested. (Predict with 2nd gen chemo was 7.5% and 3rd gen was 12.8%)
Thanks @Onecattwocats for the positive story too. Glad to hear your doing well.
Hope your pain is soon under control @EachandEveryone
Ive got a CT scan tomorrow and back at the unit on Friday to get those results and hopefully find out what will happen next.

My anxiety is kicking in again, need a cannula tomorrow for my planning scan and after I'm supposed to have a diagnostic ct scan at the mobile site and I'm hoping they won't need to cannulate me again for that and they scan me with the left over contrast from the planning scan. Radiation said they should be able to but they may not.

I have 2 more of this chemo cocktail left before I do 5 of the cisplatin chemo and tbh I don't know how I can have 7 more cannula's. Actually feeling sick to the stomach thinking about it. I'm also losing my hair now so feeling moody about that along with being what is probably my last period.

Just want this all over with. 😢