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

@FizzyOrange I presume it’s just a normal bowel prep like citrifleet or picolax?
I’ve done it before colonoscopies and the best thing to do is use a barrier cream on your bum right from the beginning. That way you don’t get too sore from the constant wiping and drink lots of water.
When I’ve done them before, I’ve had wine gums but not red or black ones and marigold bouillon powder as a hot drink to stave off the hunger feelings.

@FizzyOrange when I did bowel prep, it didn't even take that long for it all to come out, so I didn't get sore - but others obviously have different experiences. I was dreading actually drinking the stuff, but it's bearable.
Hope it all goes OK for you. Getting the op behind you will be great.

My bowel prep consisted of an enema and it was all over in an hour from start to finish.

@Bloodybridget hope your treatment and parking starts to run a bit more smoothly.

@FizzyOrange some of just seem to get more anxious about surgery than others. Dh tries to reason with me but it's not easy! This too shall pass. People have surgery every day - literally. It will be uncomfortable and not like a spa day but it will be manageable and temporary.

I see my surgeon Thursday for my latest MRI results and a surgery date. I am really hoping that I won't need more chemo after surgery but I would put my odds at no better than 50-50 (my oncologist does not seem optimistic on this point but actually she's generally not very optimistic - not a really desirable trait in an oncologist perhaps...). I fear that more than anything - to the point I fantasize about refusing if it came to it.

I am trying to follow my own advice and not obsess on the upcoming results but I do seem to googling a lot of papers on it....

@FizzyOrange I've done Bowel prep before colonoscopies and I second the excellent tips on here. I also recommend Bovril as a good hot drink to stave off the hunger. I also got some wet toilet wipes which helped a bit. I was really nervous before my first one but actually it's not too bad - you just spend a lot of time on the toilet!

Hello. I've just returned from my CT scan which was quite a traumatic experience. Nurse couldn't get my cannula in, so she called a doctor. Doctor couldn't get it in so fetched ultrasound machine. In the end, they managed to insert one in my wrist - one of the few places I hadn't applied Emla. Bloody typical!

Anyway, the CT has revealed no blood clots (yay!) but unfortunately there is some thickening in my left breast and an indication of fatty liver disease. I have gone into complete meltdown - I just wasn't expecting this at all. They have referred the scans back to the oncology team and I see my oncologist on Wednesday, but does anyone have any advice? Could my cancer be back, even though I am on chemo? Can chemo cause fatty liver disease? I am tailspinning and have had a good cry.

@Acinonyx2 stop Googling! You know it only winds you up. At the end of the day we are all treated according to a set of rules the specialists use for each scenario. There are so many variables it seems quite random but they are consistently applied. It is very understandable to dread surgery but the great advantage is you will be asleep throughout and when you come round it is all over. Then there are lots of drugs to get you through the aftermath. I’m not sure what procedure you are expecting. Are you having a node clearance or just a sampling? I guess you will know more after Thursday. It will be a while before your oncologist has the results of surgery to decide about further treatment presumably. Try not to run ahead of yourself and stay in the present if you can. Worrying is a waste of energy! You will get through this and come out the other side before you know it. How are you distracting yourself?

I have been out on my bike in the spring sunshine with my friends for the first time in eight months. It was a joyful experience and we managed twenty miles and lots of chat. Hooray! Now it is time to tackle the mess in the front garden. DH has had it all his own way for far too long. >

Regards to all
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@AlbertCampion big deep breath. The thickening could be scar tissue or inflammation or something incidental. Fatty liver is generally reversible and can, happy for the medics to correct me, be predisposed to by steroid therapy which has probably been part of your chemo regime.

Just sat waiting for my first radiotherapy. None of this seems real. It's like it's not happening to me.

Thank you so much @BadEyeBri. I have just been on the phone to Macmillan and they said exactly the same thing. My diet is generally good and I haven't had any alcohol in ages, so I do wonder if all the steroids (I've also had to take them for my ulcerative colitis) have had an impact. But like, you say, even if they have it is reversible.

Hope your radiotherapy is going ok. I think I'll be starting mine in about a month and like you, I feel like I'm in the middle of a nightmare sometimes. When I think of myself this time last year, none of this seems real. So much has changed.

Just checking in. Had endometrial biopsy last Tuesday, waiting on results. Not sleeping much really.

AlbertCampion no googling! Although I’ve googled too. It’s true though, it doesn’t do any good.

Feel really spring like today, hope it’s sunny where you all are

Have gone AWOL again, sorry. Had an appt. with my oncologist last Friday and ever since I have been a quivering wreck. She said all was well BUT that she wants to do another bone scan to keep an eye on a “sclerotic injury” in one of my ribs. Now, this was mentioned to me when I had my last bone scan done in July, and was told “Ah, an old injury, we don’t need to worry about that”. It was around that time that DS had kicked me quite hard in the ribs (accidentally while we were playing).

On Friday the onc. said she doesn’t think it’s metastasis on the basis that it didn’t show up in the CT scan (done in July 2020 at the same time at the bone scan, to see if my recurrence had spread - thankfully it didn’t).

I then told her I want to have a CT scan thrown in, she said they don’t really do CT scans as a matter of course but that if it helps to put my mind at rest, she would request one.

Both scans are due in May.

Meanwhile I have done a classic rookie mistake (waving at @AlbertCampion)

• I have been Googling and have been scaring myself to death and back. Sclerotic, according to Dr Google, can also mean cancerous. Fuck!

I have no symptoms, nothing is sore, no pain, no discomfort. I keep pawing at my ribs constantly.

Haven’t introduced myself on this (now not so new) thread - 48 years old, diagnosed with ER+ BC in December 2016, lumpectomy, double mastectomy with DIEP flap reconstruction. Recurrence in lymph nodes in July 2020, chemo, surgery, radiotherapy. Am now on Examstane instead of Letrozole. And yes, have been diagnosed BRCA2 positive.

Chemo went well, Timor shrinkage was significant, post surgery pathology results were excellent, no further spread detected.

And now this!!! Keep thinking it’s a euphemism (“keeping an eye on it”) for “you have got secondary”.

Shitting myself big time! Keep looking at my DS8, thinking I will leave him an orphan.

Thank you for all the bowel prep advice and tips ladies, very much appreciated

@BadEyeBri thinking of you today and hope it's going well. The first one is often the scariest as we don't know what to expect. I can truly relate to you and @AlbertCampion saying none of it is real, this is me, I still feel as though it is happening to someone else. This time last year, I had had a DVT two months previously, I was put on blood thinning tablets which no-one seemed particularly concerned about and was waiting for a follow-up appointment with the haematologist to review me in May. Hardly urgent 🙄.

Just to let you all know I have been reading the thread throughout - all of you are wonderful human beings on whom a huge amount of shit storm has been heaped upon - sending you all lots of love and to weather this cancer shit storm as best as you can. Indeed, it all looks unreal, I mean, how can I ever be the same after all this? Everything just seems so...

Bottom line: I just want to live, I want to draw my pension, I don’t want to die (just yet). I want to see my son grow up. I don’t want a bucket list. Just living to some semblance of an old age would be so good. I don’t even have to have been bungee jumping, boring old middle-aged life would suit me just fine.

Sorry for such a soppy & silly rant. Sending you all 💐.

@balkanscot its not a silly soppy rant, its how I think every single one of us on this thread feels, I know I do.
The physical aspects of all our treatment plans are quite horrendous enough but it is the mental torture that I find hardest to cope with. Our minds spiral and we end up down the rabbit hole. Boring old middle age was lovely thank you very much, was looking forward to trips away with hubby now both kids at uni, all scuppered. I am normally quite positive but have also reached the depths of dispair so you are not alone and we can hold virtual hands together.
I have arranged an in person counselling session with our local Maggies centre would something like this be helpful??
I feel I need a safe space to cry lots of snotty self pitying tears which lockdown doesn't really allow at home. Trying to not look too far ahead but thats depressing too not being able to plan......

@balkanscot sclerotic can mean either mets healing or injury healing. The fact that there is only the one spot, where you know you were kicked, that hasn't changed, and was not corroborated with the CT is a pretty good shot that its not mets. The bone scan is so non-specific - it really just points to areas where there may be a problem, which need to be confirmed with another imaging modality. I guess at the very least it is good she is being proactive on that one spot - better that than the other way round where a spot is dismissed as not possibly being mets and well, it is.

Not a silly rant at all balkanscot everything you say is really relatable. We're all so fragile and any news can send us into a spin.I'm sorry to read that you have had news that has worried you. Can you speak to a CNS I always found mine was very good at reassuring me and helped decipher 'oncologist speak'. We're always here to listen. X

Oh @Balkanscot - I am sorry, but this is exactly the place to rant and weep and say all the awful fears that we might not voice to anyone irl. It's quite a wait till May, so I hope you can find distractions from the fears. The suggestion of a counselling session sounds good.

@Alittlewornout much love and sympathy to you too. I think, hope, that the despair won't last forever, and that life in the big wide world getting closer to normal will help us all a lot.

@AlbertCampion oh buggeration - another worry for you too! As BadEyeBri says, it may well be easily explained and not very serious. @Acinonyx2 you're really going through it with anxiety, I am sorry. Hope talking here helps a bit.

I did get my last chemo today! It was touch and go, first they said neutrophils were low and they'd do bloods again to see if they'd come up since Saturday; I didn't think there was a chance of that and resigned myself to a delay. However two hours later I was on a couch! Whatever the next few days throw at me, at least I can say "no more"!

Super news Bridget
Glad those neutrophils played ball.

Thank you, @Alittlewornout. I hope the counselling soothes all those mental worries/demons. Thinking of you. I have been thinking about counselling for a while but never really taken the plunge. I find that the recurrence is a whole new ball game, so, so, much worse mentally (and physically, as I never had chemo first time round), even worse than the moment I was told I had cancer in Dec. 2016. It has really messed me up mentally and physically (hair loss & other delightful chemo side effects).

@Lizdeflores thank you, if the panic takes over again I will (it was particularly bad this afternoon, I felt I was going to pass out with worry). It’s just at the point where I thought I could start taking deeper breaths and give myself a pat on the back for going through horrendous chemo/blood tests/neutropenic sepsis, etc.

@HerbalRefreshment you are right, if it is a red flag, at least it will have been flagged up before I get any nasty physical manifestations. Going from “curable” to “incurable” would be immensely hard to come to terms with. Let’s hope it won’t come to that. I have flashbacks of my dad when dying from this bastard disease (he was also BRCA2 +), being in absolute agony towards the end (mets in bones & brain from prostate cancer). It’s these memories that make me so, so scared.

@Bloodybridget hurrah for the last chemo session! 👊 I remember feeling so elated after my last one in November. Pure bliss not having to be poisoned again and again every few weeks.

Woooohooo! Congratulations on final chemo, @Bloodybridget! Hope this last cycle is as low impact as it can be, and you feel well enough for Easter eggs on Sunday!

Hooray @Bloodybridget I am so glad you got through the last chemotherapy. Time to recuperate soon hopefully.
@balkanscot you are being very courageous addressing your fears. Talking it through and coming to an understanding of how you deal with the situation must make it easier to bear ultimately. I’m sure your rib will just be kicked and healing but it will be a relief to know.
I am really enjoying not being poisoned this week after last week’s nasty surprise with letrozole. I had another lovely bike ride in the sunshine with my friends today.
In two weeks I have an oncology follow up and I am going to have to be brave. Back in the mists of last autumn’s chemo nightmare I had a CT scan and in passing the radiologist mentioned incidental thickening of the rectal wall with lymph node enlargement. We agreed to park that while I got through treatment. I have changed oncologist as the previous one retired but I need to press now for more investigation to make sure there is nothing nasty lurking. @MrsPnut’s experience is proof that one thing can lead to another. I really don’t want to think about this too much and am certainly not going near Google but denial isn’t a good option. I shall be bloody furious if it’s anything serious!
Enjoy the sunshine if you have it.
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Can I ask for some advice/reassurance re PICC lines?

Mine has been super comfortable up until now, surprisingly so and I've barely noticed it is there and have been able to mainly forget about it. I've had it two weeks. Had it re-dressed today by district nurse and it's no longer as comfortable. It's not sore or itchy or anything drastic, just kind of tugging a bit sometimes when I move my arm, and I think she's stuck it down at a slightly different angle to before. It's making me feel all vulnerable and weird for some reason. Does this sound par for the course or do I need to go and get it looked at tomorrow??

balkan your rant absolutely resonated with me too.

@Bloodybridget Great news re last chemo! I have my last one next Monday and am weirdly excited about it, despite the fact that I know I'm going to be miserable for a few days afterwards. I still can't quite believe it's been six rounds already. Four months sounded like an age when I was first told my treatment plan, but here we are. I guess that's also an effect of lockdown: so little variety in daily life means that time kind of blends together...

@Babamamananarama I have a port, not a PICC, but I do get that tugging feeling sometimes. No idea if it moves around, or if that was the way it was put in, or if it's to be expected - I find it annoying more than anything, and occasionally I find myself wondering if the tube thingy is strong enough to rupture a vein (?!), but someone else may have more relevant and helpful experience.

@balkanscot Just another one here saying I completely hear you. I said the same thing to DH around diagnosis: I really don't want to go bungee jumping or care about doing anything particularly remarkable now - I just want to know that I'll be around for my kids to grow up. If it's any consolation, I had a scare about a bone metastasis which turned out to be nothing. Keeping everything crossed for you.

@AlbertCampion, I hope you're doing ok now. Nightmare is the word. What stage of chemo are you at?

@Acinonyx2 Good luck on Thursday - I think I'm a couple of weeks behind you re surgery meeting. I've somehow convinced myself that because the tumour can no longer be felt I'll get to have a very minor surgery, hardly more than a biopsy, and it will all be easy from there on (even radiation). It's going to be brutal if I'm told otherwise...

@FizzyOrange Funnily enough I came across a video about bowel prep for colonoscopies last night - I have no experience to offer but wanted to say good luck. Judging by all the comments on the video it's something that many, many people have to do very day, so you're not alone!

@HauntedDishcloth Sympathy re sore tongue and drippy nose! I'm also going through kleenex at a crazy rate. Have you tried eating fresh pineapple during chemo to help with the sore mouth? I've done this for four chemos out of five, and the one where I didn't was the week that I had the mouth pain. Possible coincidence, but you never know?

@Miava I hope the port pain has settled down for you. I was surprised by how long it took me to recover - I think it was something like two weeks before the bruising wasn't really unpleasant and I was able to actually face just looking at the thing! The insertion itself wasn't bad (and lots of people had told me it was a really easy procedure, which I guess in retrospect it was, though I'd been terrified of it), but I'd expected to be back to normal within a couple of days and that definitely wasn't the case (didn't help that I had chemo just a few days later, so I felt rough anyway for the next week). I've had it now for almost three months and I'm happy to say it's been fine for a good while. Still looks a bit odd to me, but doesn't hurt. I've even managed to sleep on my stomach again!

@TopOfTheCliff Can I ask what your experience of surgery was, if your lump had completely disappeared with chemo? Did they still have to clear lymphs? (I had two affected which were palpable at diagnosis but now can't be felt; the lump has also gone from 4cm to not palpable)