Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

Hello everyone hope everyone is doing ok.

I went to the breast clinic today and they said duct ectasia. They also gave me a follow up appointment for 3 months time which seems weird so now I’m worried that they may think it’s something else?

the leaflet they gave me on it said it doesn’t require a follow up but they didn’t give me any answers as to why they wanted me to go back

@dustybluebell

Sorry. Just re-read my post to you. I wasn't v clear! I meant to say that 'malignant tumour' might have been what they were trying to RULE OUT by scanning you, rather than something they knew you actually had. So it still could be an ulcer. They're just checking to make sure. This follows on from an earlier conversation on here about how chilling it is to see 'malignant' or 'cancer' in print.
Hope that makes more sense.

Hello. These messages are humbling, inspiring, sad and hopefully. Thank you for sharing and creating this thread. I usually lurk in AIBU reading about CFs and hen dos. However yesterday I received a shocking diagnosis. The one I thought I definitely wouldn't get.

First visit to the breast clinic and find out I've got a large tumor under my armpit and it's spread to my spine. Waiting for results of biopsy and have a PET scan booked for tomorrow. Hoping to hear by Monday.

I thought I just had a dodgy back! I'm expecting now to be told I am riddled with cancer and given a very bleak prognosis.

I've got a 4 year old daughter so today we went to the zoo which was lovely. My partner is bring strong as is my mum. But I know they are frightened. I am too.

It's a living nightmare isn't it.

Love and strength to you all.

@Fantasea and @Thymeout thank you both for replying. Yes a big shock for something originally thought of as 'bleeding piles'.
I spoke to someone yesterday at the colorectal clinic, and she said I'll need radiotherapy first, to shrink it, then surgery. I'll add an image of what I've seen on my app. I have called and changed my appointment to 1st Nov instead. I hope I'll get more info then.

@HardyHarvey thinking of you.
What a shocker yesterday was. Love and strength to you too. ❤

@HardyHarvey this happened to me. I also thought I had just twisted strangely in exercise class, having done it innumerable times in my life and having blown a disk three years before. Yeah, breast cancer spread to sacrum and lower spine was certainly a shock! That was over 3 years ago. You would never EVER know I have stage IV cancer, I have hair, energy, work full time and once they radiated the bits away, I walk fine without any supports or painkillers.

The first few months are going to be psychologically tough, no doubt. But there are some good therapies out there and lots of Stage IV ladies are living longer than ever (especially true if you turn out to be HER2+). I remember at my oncology appointment asking if I had enough time to get home to my parents overseas before I died, thinking I had 6-9 months. They dont give you an expiration date at this point. Dont get me wrong, it sucks a LOT but you can still live with a relatively good quality of life.

We're here to help, so hang in there. @mowly77 also has a daughter of the same age, so she may be helpful in terms of that aspect (I dont have kids).

@HerbalRefreshment thank you! These are the stories I need! I am sorry it has happened to you but great to hear how you feel atm. Trying to stay positive and all that.

@mowly77 I can't believe the way you have been spoken to. I was sorry to read where you currently are. How is your daughter if you don't mind me asking? How much does she know what is happening. Mine is definitely picking up on something as I am getting lots more hugs and earlier- when at the zoo, she started caressing my boots. 😆

I'm here now and looking forward to getting to know you all on your different paths.

Much love

@dustybluebell thank you. It's so much to take in isn't it.

I hope you get more clarity soon. It's a bloody bugger all the waiting isn't it

Welcome to both new posters, sorry to see you here but you’ll definitely find some great support here through your journey.

I have no advice as I have ovarian cancer, but I also have a 5 year old so know what it’s like with small children.

Nothing to report here. Chemo 5 next week and I’m dreading it already, but also I am SO ready to get these last 2 out the way and have some life (and hair!) back. Picking up my first ever brand new car in the next few days, so I’m really looking forward to that.

@AGreatUsername glad to hear it's coming to an end - and a car too! Exciting.

How have you explained things to your child and how have they been whilst you have had your chemo?

Realised my post earlier says mine stated caressing my boots - I meant boobs! 😜

@HardyHarvey - so sorry to hear you got such a shock diagnosis.

Im still waiting on results atm so don’t have direct experience - but there was a post on the books thread from a mumsnetter who has just published a picture book to help explain to young children about a parent having cancer ( she has a brain tumour). I’ve no idea if it’s any good but it’s on Amazon and called ‘mummy has a lump’ - it’s a picture book. Just thought I’d mention in case it’s of any help!

@HardyHarvey yes we did explain. I’m simple terms, there were bad cells in mummy’s body and getting rid of them might make me sick etc. My cancer centre offers a book for young children with a story explaining and it is accompanied by 2 teddies, a Mummy Lion and a Child Lion. When you are in hospital for tests or treatment you take the child and the Mummy stays with your child so you are still together. My son loved that idea and takes mummy lion wherever he is on my chemo days, school have been great. He also really benefited from a worry monster. He will have help to write his worries down and put them inside and we will discuss them. They also offer a tour of the chemo wards for children so they know where you are isn’t scary etc. It’s worth asking your hospital if they offer similar when you get to that point.

In the early days of diagnosis he was clingy and fearful and did ask if I would die etc which was very hard. Now, 5 months on, he takes it all in his stride and is pretty unconcerned.

Welcome @HardyHarvey and @dustybluebell to the thread nobody wants to join. It's a friendly place to hang out and have a good whinge!

@dustybluebell I guess the person putting the results of the colonoscopy on the system didn't realise you had direct access and might see them before the clinic had informed you of the new diagnosis. That's worthy of a PALS complaint as they shouldn't leave you to find out you have cancer that way. The surgical team are usually really good about breaking the news and have a specialist nurse on standby to pick you up off the floor. New ways of working throw up new problems! Once they have had their MDT meeting they will explain the plan to you and give you a time scale. I hope they work extra hard to regain your trust after such a rocky start!

@Fluffyunicorn1 that's a fantastic result! It's a benign condition so hopefully you won't need anything too unpleasant doing.
Did you have an ultrasound scan? Maybe they want to check it has resolved in three months. I love it when people get to escape the thread unscathed!

All well at Tops Towers. I'm knitting bear hat number three now and still haven't put the central heating on. It feels like a long tedious slog at the moment but at least I can start counting down to the finish of chemotherapy.
Sending strength and patience to all
Top x

Hi @HardyHarvey I am very sorry you find yourself on here. But the image of your DD caressing your boots was very cheering! Boobs does make more sense however …

My daughter was 3.5 when I got re-diagnosed & such an unexpected shock too - she had to come to the hospital with my partner to pick me up. Worst moment of my life seeing her walk in.

She knows quite a lot now, this was in March. I explained in simple terms: I am sick and I have to go to hospital a lot so the doctors can give me special medicine to help me feel better. I warned her my hair would fall out as didn’t want her to be shocked. There have been a few heartbreaking moments, she has asked me a few times if I am going to die and I just can’t lie to her. (The bloody guinea pig at her nursery died and set her off). But what is incredibly cheering is that 4 year olds are self-absorbed little narcissists, so while she pipes up once in a while with something that tears my soul in two, generally she’s just carried on and not been incredibly invested. She didn’t say anything when I lost the vast majority of my hair! She’s started school since and that’s great, school seem supportive and it tires her out and gives her a focus. Is your DD in school?

I’m in bed a lot atm as I’ve been really ill (Everyone will be different, so don’t be alarmed) and now I’m waiting to get stabilised on a different dosage of my second line treatment. That’s horrible for everyone & she definitely gets frustrated that I have to rest & can’t play & go out & come downstairs for dinner etc so much. But I do what I can and am confident I will be stabilised on new treatment soon, start to have more energy, feel better & things will be more normal for her. @HerbalRefreshment is a great tonic and example to aspire to!

This is already so long but DM me if & when you like as I have loads of resources / books I can point you to. NB It took me a good while to get to the books / resources point as the whole thing is such a huge shock. But we’re here for you, a small crumb of comfort I hope.

Thank you btw @Fantasea my GP funnily enough did prescribe the pill you put on your gum … it worked a bit but not enough. But before Dr Appalling got back from her holiday (hope she had a lovely time) a different oncologist explained to me that nausea is very hard to get on top of once it’s out of control & it was better to get the drug out of my system and try again. Which makes medical sense, unlike anything Dr Appalling has to say. So they might work better on a lower dose.

Anyway. I’ve cut the tablet up & necked the larger half. Up yours Dr Appalling. Can’t wait to see how dreadful I feel tomorrow morning!

My son was had just turned 7 when I was diagnosed .He engaged with my cancer in a very scientific way he was fascinated by rapidly dividing cells etc. I think that maybe his interest in the science helped him avoid thinking about the cancer being in his mum.
We decided that we would only give him the basic info. ThatI I did have cancer and the doctors would give me medication and surgery which would make me ill. I remember hearing (pre cancer) that it what kids don't know that scares them so we did tell him that we would tell him if we had any other news.
During my treatment he would speak to his dad if he had any worries and I know he saw the learning mentor at school. He coped with my hair loss but I know he preferred it if my head was covered.
I also have stage 4 cancer(ovarian) and I'm now in the stage of living with it, I don't work (out of choice) but my life is very busy ; I run , I've started yoga and belly dancing! and I have lots of time to devote to the demands of Primary school🙄. My diagnosis is always constant I'm my mind but I try to fill my life with activity to distract mysel f.

Thank you @Ridingladybugs and I hope you get your results soon.

@mowly77 thanks for sharing that. Yes she has just started school so we will be telling them next week.
Having you all here is a huge comfort.

@Runningwithoutstopping thank you for sharing your experience too.

The dates changed for everything yesterday. Today I am going in for a PET scan and then Monday afternoon I have the meeting with the consultant. My mum is coming with me so my partner can be with our child.

I've not slept much and I am feeling quite bleak about the results. I already know it has spread to one part of me so expecting it to have spread to other areas too. Things 'don't feel right' elsewhere and I had put that down to a back issue but now of course I think it's more cancer.

My spine has collaosed due to the cancer spreading (it was an MRI for that which alerted me to a problem - however they weren't very clear about it when in fact my consultant read the report straight away and saw it was cancer) so I'm in pain and my left arm doesn't work well.

3 days ago I was expecting to live till I was old and now I'm desperate to have 3 years (obviously more wld be ideal).

@Runningwithoutstopping I was thinking I definitely need some projects for distraction. Yoga is a good one. I have a shakti mat that I lie on and that really chills me out.

Thank you all. This makes me feel so less lonely.

Hi everyone - I haven't been on here for a couple of days, and seem to have missed so much - good and bad. Firstly @Fluffyunicorn1 - that's great news, and try not to worry about the follow up appointment. I think it's sometimes treated with surgery if it progresses, but often clears up on it's own, so they are probably just wanting to monitor how it's doing. If they thought it might be something more sinister, they would be doing more tests right now.

I'm really sorry to hear about your appalling treatment both @mowly77 and @dustybluebell . Mowly, I hope the half tablets prove more tolerable and that you get a better plan from a doctor slightly less appalling if not. Dusty - finding out by a message on the app is beyond shitty, I'm so sorry. I had an upsetting but much (much) more minor similar thing happen to me - my results appointment from my surgery got cancelled at the last minute as the results weren't ready and I got an alert from the app just saying 'appointment cancelled', no context. It was just an admin mess up - I should have been called first. But it should just never happen that a letter like that goes on the app before you have been told in person. It's inexcusable.

And @HardyHarvey - I'm so sorry to hear about your diagnosis. What a shock that must have been. I know it's easy to say but hard to do, but do try not to assume it must be worse than you already know it is. Lots of people have bone mets, and no further spread - it's the most common place for secondaries to appear first. And many people do survive a long time with good quality of life with bone mets - a lady I know is 12 years in with bone mets, and still doing well. But if it is much worse, there are lovely people here who will hold your hand.

I've just had some unsolicited Covid tests through the post - is this a normal thing? It's made me worry they're going to do something to me I have no awareness of! (Chemo is coming to an end, I haven't been sent any before.) it's pretty disappointing as I heard a box come through the letterbox and I thought I was getting a present. (I got lots of presents in the early days but now I don't even get messages on chemo day!)

@SierraSapphire my centre seem to randomly give these out. Not by post, but you often see nurses passing out boxes in the waiting room to random people. When I had to go in with my infection the chemo line were surprised I haven’t been given some, as they wanted to know if I’d covid tested to rule out as a cause. Maybe you have been missed so far like I have!

Talking of random stuff, I got a letter from my GP practice this morning telling me they were sorry to hear I had cancer and let them know if I wanted to meet the nurse practitioner for support (good), enclosing a booklet from Macmillan about how to cope when my treatment ends (wtf). Since it's barely getting started, this seemed an odd choice.

@SierraSapphire I've also had a random box of Covid tests arrive. It's probably that the distribution centre has caught up with your status and as you qualify for free ones, they've sent a box to have in reserve. This is what I presumed and no more have arrived since.

@SierraSapphire I also heard a box hit the mat and thought it was a present as I wasn't expecting anything I'd ordered!

I'll add them to my existing pile of Covid tests then! I can see it might make sense to do a test before you go for your chemo, but nobody's mentioned it to me. I suppose it should be common sense, but I'd forgotten about Covid really in all the stress of everything else.

I had two LF tests given to me along with the laxatives for my recent colonoscopy. Never happened before. But only the team doing the procedure were wearing masks. Do they have a use-by date or is it part of the NHS Winter protocol?
The poor guy doing it works full-time at an E.London hospital and Sat and Sun at my satellite to King's. He said he's got kids and needs the money. London rents and childcare.