Cancer support thread #73 - come in, we're here for you.

[Trumpton]

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 smile

@Skap . I had two weeks cold capping and also a week off due to a chest infection so am not holding my breath !
I mind less than I thought I would . DD says I look like a fluffy duckling !
Hmm !

Bloody steroids, I was wide awake at 2.30

So I took another sleeping tablet and waited for the six o clock alarm to go off for the next dose, have taken them and I am setting the alarm to take the next dose at 11.00.

I could do with the cleaner coming in today, but hey ho, she is not coming in until 2.00, not a lot to be done,but I will find something to keep us both happy.

Really awful night . As Naomi says steroids ! Now got constipation for the first time . Will pop next door to Dd and grab some of her children’s meds .
Saturday is generally a good day energy wise so that’s nice.
#6 of 12 done and #2 of 18 Herceptin .
Lost a bit more weight only 6lb since mid November but they would like to see me steady this week . If this constipation continues I might weigh more !

I say #6 as I missed #4 if that makes any sense . Week 6 might make it easier to understand !

Hello everyone, I hope you've managed to have good days with your loved ones or enjoyed your time off over Xmas in however you were hoping for. I've struggled mentally as my apt is on Monday so it's been on my mind a lot though I've tried not to let it take over: I have drunk far too much and am quite cross at myself for being so down over what may well be a nothing to worry about situation (though I'm obv very aware it may well be the opposite). I apologise for the woe is me tone today but I guess I'll know more Monday anyway 👍👍

MiniCooperLover, sending you a handhold and very best wishes for Monday. And you never need to apologise here for talking about your feelings, no-one is going to judge you, it's a safe place to open up.
Trumpton and Naomi sorry you're having such bad nights. Trumpton, can't remember if you like prunes - I found having two or three chopped up with my breakfast cereal each morning really helped to combat constipation. Lidl's ready to eat ones are nice!
Waving at Soap and Brassica and all other regulars and occasional visitors to the Patience. We got home from our lovely Christmas break on Friday and have had our young DGCs and their parents here since then; they leave today. They've been delightful, but my energy is wearing out, and poor DP seems to be getting a cold and has a bad chest (asthmatic). Much chocolate being eaten by all.

@MiniCooperLover you're being too hard on yourself. It's incredibly stressful and difficult to deal with anticipation. And realistically it could be bad news. I have carried on drinking because I know it gives me a temporary break from the anxiety. We are none of us perfect
What good/healthy things have you done for yourself or can you do today?

The steroids are leaving the building and I await the flatness and bone ache that comes with the next five days of Nivestim, I have come to the conclusion that all of this is manageable, because you get to recognise the cycles and learn to work with them, but that when the chemo and the radio are over you have to deal the physical manifestation of having no hair for quite a time.

For now that is my take on it.

MiniCooperLover This thread is somewhere you can post as negatively as you want. Tomorrow you will know the best or the worst. Even if it's the worst news it's arguably better than the waiting.

Trumpton I have found a weekly pattern with Paclitaxel. Days 1 to 3 constipation, 4-5 ok, 6-7 diarrhoea (I will always be able to spell that thanks to your mnemonic). The chemo ward gave me movicol and senna and told me to take 2 senna every night plus movicol in the morning and as required. The first time I did that I went 27000 times in one day. I have found half a senna on days 1 to 3 plus prune juice is enough.

@NaomiFromMilkShake I kind of agree that the pattern makes it manageable. I look forward to day 2 because it's steroid day and I can do stuff. I don't sleep but it's only one day a week.
When I think about the overall worst bit, I think it's that the joy has been sucked out of me. The hair I don't care about at all.

I've had a gap week and am feeling brilliant apart from the fact that my rheumatoid arthritis is flaring (steroids have worked wonders with it). It's comforting to know that I will be normal again.
Tuesday is my
Final Chemotherapy Final Chemotherapy Final Chemotherapy
The rads late January.

@MiniCooperLover sorry to read your Christmas has been filled with a lot of worry. As others above have said I think the waiting and not knowing is one of the worst bits. As soon as I had the news and had the plan it stopped my head going around with what if’s and the plan is what I now focus on.

@Skap yay for Tuesday!! I imagine it is such a good feeling knowing it is your last?

@Bloodybridget glad you have been enjoy the DGC think it definitely makes a difference having little ones around.

@Trumpton laxido does the job for me! Although I was never actually constipated I’m on it to prevent it from happening.

Minicooperlover I was in the same position as you are this time last year. On 3/12 my doctor rang to say I was being referred on the urgent pathway as she suspected I may have Cancer. The following day we were flying to America on holiday so she delayed referring me until I got home. Christmas was just awful as we didn’t tell any of the family and put on a brave face. My appointment was 31/12. This was followed by more in January and on Feb 11th I received my colon cancer diagnosis. It’s bloody scary. In fact it’s terrifying but in all honesty, the NOT knowing was worse than the knowing as it was in their hands then. I attended every meeting and test knights they were doing their Damnest to make me well again.
i sincerely hope on Monday you can update us with good news. We will wish you well and always be here for you x x x

Minicooperlover very best wishes for tomorrow. Waiting is horrible.

Skap I bet Tuesday just cant come quickly enough to get the last session out of the way!

I hope everyone has had a good Christmas? After getting the tiring stuff out of the way we have had a restful time and now I cant wait to see the back of 2019. Definitely hasn't been my favourite year!

Hoping for better things for all of us for 2020.

The clients at The Patience Inn.

Minicooperlover - thinking of you tomorrow; the waiting will be over, at least.

It sounds like most of you have managed to enjoy Christmas amidst the considerable challenges of chemo... I must say, I have felt a little "detached" emotionally from the festivities this year, like I was spectating at someone else's Christmas. I feel tip-top physically, because I have totally recovered from the hysterectomy (and have avoided the Christmas cold, currently doing the rounds of my nearest and dearest) but haven't started the dreaded rads. That all kicks off Thursday, so just a few more days of normality. I wonder what delights it will have in store for me?

@CointreauVersial
After my fall and having my op cancelled yet again I have an apt tomorrow for a High Risk Assessment. Had one a year ago too.
Good luck with your rads and as usual side effects are different for everybody.
I had 6.5 weeks of daily - Mon-Fri with weekends off. Fine for 10 days then the tiredness set in or should I say worsened as had it before rads.
Mine was Pelvic and specifically aimed at my bladder so had awful urinary , vulva nerves and lymph gland pain. Despite Oncologist telling me that my genitals were not involved .
So. 6 months on and the cutting and chopping nerve shooting pains have gone. But my pelvic area is swollen and hard despite CT showing nothing untoward. Also lost lots of weight and recovered some but only 49 kilos now.
I was not given steroids as was told I did not need them .

I need to go under a general anaesthetic to see into my bladder for biopsies on both different cancers in there, hence the High Risk assessment tomorrow.

Good luck with the appointment, digerd. Hope you get to move forward with the biopsies.

My rads will be aimed at pelvic lymph nodes, but I've been told to expect possible bladder and bowel side effects.

Steroids.....I must confess my ignorance! I see that several of you on chemo are having to take them. What do they do (apart from apparently keeping you up all night), and who needs to take them?

CointreauVersial Steroids are magic. They are given for a number of reasons during chemotherapy. They help with side effects, suppress nausea and prevent allergic reactions. In some cancers they make the chemo more effective by suppressing the immune system. Some people have to take them as tablets on certain days around chemo. My chemo is known for causing severe allergic reaction when administered so they give IV steroids 30 minutes before.
As well as keeping you awake they increase appetite. I have put on 10lb in 3 months and I never put weight on .

Am waiting on tenterhooks for a call back. I am on antibiotics which should not in itself prevent chemo but they were all for cancelling this morning. However that was just the receptionist and it's not her decision thankfully. They are waiting to check my bloods.
It's my last one.....

Oh @Skap .
Fingers crossed that you get your last dose !
I had to miss #4 as I was on antibiotics with a chest infection but they didn’t add it onto the end .
I ,too, have steroids but my appetite is poor and I am steadily losing weight ( have been asked to stay stable this week if possible ) .
I must confess I wasn’t really sure what they were for !

Skap my fingers crossed too.

Thank you everyone for your supportive comments, I'm very fortunate to be able to say it was a benign cyst that they burst today and say they're very happy it's nothing to worry about 👍

MiniCooperLover Hurray, that's what we wanted to hear. Enjoy your evening with a weight off your mind.

Just got the call. Bloods ok it's going ahead .
Bizarre that I am delighted to be going on NYE to be poisoned. I just so wanted the last one to be in 2019. Plus it would have delayed my radiotherapy.

@ Cointreau
I have a booklet called Radiotherapy to the Pelvis (Female) given to me by the hospital doing it- my local hospital did not.
I assume I was longer than usual getting over the side effects due to my age and late stage of the cancer.

I think MacMillen also has a booklet.
My sis has been on Steroids for PMR for 2 years but has not put on weight. I was 55 kilos but cannot get above 49 now, which was my weight during my 30s/40s but I was made of lean muscle then.
Happy days!

Hoorah for Skap !
And Hoorah for MiniCooperLover !
And Hoorah for everyone !

Well the steroids have clearly left the building, barring getting up at 8.00 to nudge DS to go to his part time job, I slept for thirteen hours.

I woke up burbling in some sort of green gunk.

In an hour, I am off to get the Filigrastim injected and my picc line flushed, the fun never stops around here.

Excellent news, MiniCooperLover. Enjoy the NY celebrations with a happy heart.

digerd - thanks. I do have a variety of reading matter, but you never can tell what will happen in one's own case.

Last one, Skap! Hoorah.