Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

Also going to try the cold cap.

Yes . I am dithering about cold cap . HER2+ so POSs hercetin and chemo .
Right ! I am going dancing now ! I have a children’s class to run !

Naomi welcome to the Patience Inn (geddit?). You've had the surgery already so I guess you're at that resigned stage of let's get cracking and get this over with? When you say it all kicks off tomorrow do you mean chemo starting? What's the regime? A few of us on here are mid chemo, several have finished at are onto radio. I really like your comment , I need to be able to look him in the eye and say I did everything I could. That's exactly how I felt. Younger DC is 21 but I feel guilty at having DC late so they are facing parental mortality at such an age.

@Trumpton. Brave of you to go to funerals. I would have made excuses. Are you expecting him / her to recommend chemo? I suspect chemo is going to be on the agenda as you are HER2+ iirc? Perhaps you will escape radiotherapy because of full mx. I'll be thinking of you.

The side effect of the week this week is the dreaded constipation. I was given enough movicol and senna to power a rocket last week but I'm a bit wary of the effects.

No radiotherapy as you say . But I am expecting chemo because of HER+ . this has been such a sneaky beast that I want/ need to obliterate it .
3rd set of antibiotics for chest infection have given me a foul mouth and palpitations . But I can now take a deep breath . Might pop into breast clinic tomorrow and ask them to have a listen to my chest .
One funeral was to support MIL (96) who desperately wanted to go and I couldn’t say no to her.
Tomorrow I want to be there for son in law and DD.
Wishing everyone a peaceful night .

Tomorrow is the precursor, the PICC line going in being the only difference.

Chemo on Wednesday.

I am hoping normal functionality on Thursday, I don't work Friday, feel crap Saturday/Sunday , rise again on Monday.

I had head and neck cancer four years ago, my bowels have not really worked since then.

Magnesium citrate works well, sometimes too well, the tablets are mahoosive, so I put them in a daily shake.

They are better than Movicol (moves sod all) or Laxido (not very rapido)

A question . The surgeon at Wythenshaw suggested taking my own laxative in with me .
I think I might have taken some 34 years ago after giving birth . I generally have the opposite problem !
What would be good ? Tablets rather than liquid as I will be flying over .
Or I could decant some into a smaller bottle.

Hi (not new on Mumsnet but years since I was on here so have had to set up new username etc as I couldn’t remember my details.)

Sorry to barge in. I went to GP on Friday and then again over the weekend to the out of hours with severe constipation and the one over the weekend has referred me for an ultrasound and a CA125 blood test ‘in case there’s an ovarian mass’ (she said, blithely).

So two questions:

1. What kind of magnesium citrate is good for very very bad constipation (4 weeks... two weeks of that on 8 sachets of movicol a day)
2. How do I stop myself worrying about ovarian cancer?

I am 49. Two children. Disabled husband. I’m scared.

Hi Ralphiesauras - really sorry you find yourself here. I can’t help on your first question I’m afraid!

On your second question, waiting for tests and results is one of the hardest times. I think referrals are often done to rule things out, rather than because they think there’s an issue. Do you have dates for the tests? In the meantime, try to distract yourself as much as possible, and don’t google! And come on here to let your worries out - I think we often try to “protect” our loved ones from the worry, and bottling things up never help

The waiting is the worst, I call it the phoney war. 😂

Hi ralphie
Sorry you find yourself in the worry zone. No simple solution to that I'm afraid apart from getting some definite answers so that you know what you're dealing with. It gets a bit easier after that, and obvs a lot easier if it turns out to be nothing serious, which is very often the case. Are you on the 2 week pathway do you know?
Did the latest GP not give you anything for the constipation? I'm afraid I can't recommend anything as I've had the opposite problem but there may be others along with suggestions. If you haven't properly been for 4 weeks, I would be seeing the GP again if it was me.

zorgo just thinking about you and hoping you're doing ok.

I've just been to a mindfulness session and it was really good! Not done anything like that for ages....part of my TLC recovery plan. Off out for a walk over the common now whilst the sun is still shining.
Have a good day everyone.

PICC line in.

Twice 🙄

Does anyone have any recommendations re shampoo? Please and thank you.

Ralphiesaurus Welcome and sorry you have this worry.
One thing I have learned in the last two years of constant health issues is that GPS rarely diagnose things straight away and there are lots of "pathways" and "protocols" laid down that they must follow regardless of what their experience tells them. This is good because it will help pick up serious illnesses sooner but bad because patients are sent into a tailspin of panic.
I went to GP a few weeks ago because of a "change in bowel habit". Since this can be one of (many) the symptoms of ovarian cancer my GP did a CA125 blood test and an ultrasound. The blood test came back borderline. To cut a long story short my ovaries were fine. There is every chance your GP is just following protocol. I think you should go back to GP if you haven't been for four weeks. Something more drastic may be available?

@Trumpton I wouldn't bother taking any laxatives with you. You will be asked on the ward whether you have been able to go and if not you will be offered laxatives. Best wishes for today

Naomi Are you going to have weekly chemo? Is it Pacliataxel? That's what I'm on. I have it Wednesday. Buzzing on Thursday (steroids), ok on Friday, crashing fatigue on Saturday, so/so Sunday and a bit better Monday. What happened with the PICC? I had mine put in last Monday and it was very painful and is still awkward and uncomfortable. Just had district nurse call to dress/ flush and do bloods and I don't think she's done it right.

I have nothing wrong with my bowels left alone. The problem is drug induced side effects. I have taken calcium channel blockers for two years and these cause constipation. I tried diet. I drink prune juice and eat enough fruit and fibre to have a normal person confined to the bathroom. I used to manage it with Lactulose. Then long courses of antibiotics messed up my "routine". Now I find lactulose gives me gripes and wind . I asked on chemo ward and they gave me movical and senna, told me to take 2 senna at night. It's not really helping much. I've never heard of magnesium citrate and I'm wary of taking anything unless approved by chemo staff.

Well . Always expect the unexpected!
Oncologist wants me to start heceptin and Pacliataxel ASAP.
So operation on 26th will have to wait until after the 12 weeks of chemo .
Back on Thursday to talk treatment plan.
Went straight to breast clinic and was able to see “my” nurse .
She is going to let Manchester know about change of plans .
Feeling a bit blitzed by the change of plans but oncologist ( from Clatterbridge ) is quite sure that’s the best way to go.
It just means that I am having chemo over Christmas rather than being post op.

Thanks, all of you, for your kind and thoughtful replies. I do know it's a protocol they have to follow and the tests and ultrasound are as much to rule out as to rule in... but sometimes it's difficult to keep perspective. Esp. as it was so unexpected yesterday.

Re laxatives - FWIW I've had two weeks of 8 x Movicol per day plus bisacodyl. GP on Friday recommended stopping Movicol/bisacodyl and starting docusate - which made things worse. I started Movicol again yesterday and saw an out-of-hours GP who said that was the right thing to do. She said I should continue with it until it works - didn't suggest anything else. She requested a pelvic ultrasound and blood tests in case the mass she could feel was on my ovary not in my bowels.

I've got a follow up at my usual GP on Wednesday re constipation but will now be getting blood results hopefully.

@Trumpton Well that was a surprise, I presume you had no hint of it before? It's hard when you have mentally adjusted to a plan only to have it changed.
Sounds like the same regime as me - 12 weeks of Pacliataxel plus Herceptin every three weeks for a year. So you're going to have to mentally unpack one bag and pack up a different one for now. It seems like Feb will now be the earliest date for your surgery.
I guess your oncologist knows best and the main thing is that blitzing the cancer is the priority.

Ralphiesaurus I hope you get some relief soon. Is an enema or suppositories a possibility?

wtf not doing great today - spent most of the day sleeping, in between going to gp for something for terrible indigestion/heartburn. Sat and sun were ok (now think it was the steroids) so wasn't expecting to feel this wiped out today! Hopefully will improve tomorrow!

Take care everyone!

@Skap I think I am your clone !

Just dropping in to greet newcomers and catch up.
NaomiFromMilkShake, very sorry you find yourself here, getting a second cancer diagnosis is terribly bad luck (love the "phoney war" tho!). Hope chemo goes fine on Wednesday, did you have chemo 4 years ago?
Ralphiesaurus so you've had the blood test and should get results mid-week? You could ask the GP then how long you might have to wait for ultrasound. Mine was nearly 6 weeks after a CT scan showed something suspicious, which I think was too long. In the meantime I hope something shifts the constipation, poor you.
ellen going back to different kinds of scan, I think the while body one you had must have been an MRI. A CT scan doesn't take nearly as long.
Trumpton that's quite a change of plan to cope with. Hope chemo sessions can be timed so you don't feel too rough over Christmas (as I know from another thread that you are enthusiastic about the festive season!).
Wishing Zorgoth relief from nausea and heartburn, Skap relief from constipation, WTF lots more good experiences of mindfulness and other self-care projects (but what's happened with your sweater, I don't remember seeing a photo??), and meercat much enjoyment of your new lowlights!
I'm definitely on the up now, have much more energy which is lovely.

@Bloodybridget
Me enthusiastic ? Surely not !
I said to DH this evening that it was weird I was so upset about missing all the pre Christmas shindigs that we already have tickets for let alone the get -togethers and the ceilidhs .
Now I might be able to make some of them !
So I said “ it’s not merry Chrimbo it’s merry Chemo ! “ >

@BloodyBridget

The last time around I had weekly chemo of cemuxitab for six weeks and daily radio for six weeks, needless to say, I was on my knees pretty darn fast.

This on paper (four rounds over three months) should be a walk in the park, but it is a different drug with a different outcome(hair loss)

Who knows.

Trumpton - you sound pretty cheerful about it, anyway.
Naomi must have been grim. Hope this time you tolerate the drugs reasonably well. You're planning to do cold capping, right?

I am a pragmatic person but this beginning to get to me despite my humour.
It’s been ongoing since the mammogram in June and I am so cross about it .
Also dreading chemo as it’s the unknown
But hey ho ... just about to paint the sun room ...as in NOW !

Yes indeedy to cold cap.

Just taken the steroids.

Sorry you find yourself back in the world of cancer and chemo Naomi, that must feel so unjust when you’ve already dealt with it once. I am a TNBCer as well. Hope the chemo goes ok and you keep your hair.

Sorry also that you’ve been given cause for alarm Ralphie. Having chronic constipation must be bad enough, I truly sympathise with you and hope something you’ve been given works soon. Make sure you drink lots of water to keep things soft and have you tried a warm bath for relief? We will all keep everything crossed that your blood tests look good and the scan comes quickly to get that out of the way.

Poor Trumpton, you never seem to get a chance to get used to the plan before they change it. If the oncologist seemed emphatic about going first then that’s good clarity of a sort I guess .

Well done on the self care WTF. Hello to everyone else and I hope all the collective bowels of the group behave better as they seem to be a bit in synch! Can the Patience lay on a selection of medications along with the crisps and nuts?!

Like Bridget I’ve been feeling more energetic the last few weeks. I can see a five o’clock shadow starting to emerge on my scalp and have more fluff and bits of dark hair coming through. Also there are signs of life in both lashes and brows, the very tiny green shoots of new growth. That makes me happy. We’ve been out and about lately too, went to the wonderful Tutankhamun exhibition in London at the weekend, and the ATP tennis last night at the O2. Excellent outings! Armpit is still tight and sore, however, and I seem to have to exercise it near constantly to avoid it thickening.

Have a good day everyone. Good luck to those expecting results or having treatment.