Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

Sorry I know I've probably already asked Leslie but how often do you get your chemo? I'm having a bit of a wobble as today is my last day before I start it again and I'm dreading feeling ill all the time again do you have many days where you feel sort of ok?

Don't worry about moaning Year. I don't think there's a single person on this thread who hasn't had a moan. If the pains still bad would it be worth you seeing a doctor again? There's plenty of different pain relief if yours isn't working

It was every two weeks purple now I've moved to every three weeks to allow more time for recovery/fun :)

I would say there's maybe three bad days each cycle and few iffy ones. It has been worse recently because of the heat!

I'm not surprised you're having a wobble it's weird to be voluntarily doing something that will make you feel unwell.

Do keep a bit of a symptom diary the first few cycles if you can bear if. Obviously helps with medication for side effects, but it also helps you remember when it's likely to get better :)

I'll be thinking of you tomorrow

Hi,

Hope everyone has had a good weekend.

How often are your chemo cycles purple?
Perhaps the one you take will have a cumulative effect, so the first couple may not be too bad (hopefully)
Wobble away though, I did last week once I had my 1st chemo date. I seem to have relaxed since I got my hair cut off and feel more prepared. Why I do, goodness only knows! I hope the effects are not too bad for you. Have you had this drug before in previous chemo regimes? Will be thinking of you 2mo.

I am at the hospital 2mo for much of the day too - Oncology at 9am (I presume they will do my heart US as I have not had an appt through for this yet) and my MRI at 2pm. I also have a bloods form, so hoping to do this too whilst I am there rather than come in again on another day. I am charging my kindle as will likely to be needing it for all the hanging about!

year you are bound to be feeling out of sorts. If you are still in pain following the biopsy or start bleeding again, you must call your GP or 111 and follow their advice, or if it is really bad again, get yourself to a&e.

Good luck with your day out at the hospital noodles! :)

I'll definitely keep a symptom diary, hopefully if I do that I'll be a able to plan a bit more for the days I feel ok.

My chemo is once every 3 weeks and I have 6 lots of it. This chemo is different to my last, a lot tougher according to my oncologist. My last one was manageable without too many side effects. Fingers crossed yours isn't too bad Noodles

I've spent the morning throwing up. Another lovely side effect of cancer

I hope they can give you something to help purple

Thanks all, hopefully I’m just breezing through, I’ve found some bigger lumps now so mind’s in overdrive although I know statistics are in my favour so trying to keep busy with dc until can get seen at the hospital.

I’ll update once I’ve been told I’m worrying over nothing - to you all!

Hey guys!
Signed up for the Optima trial today and am booked in for either chemo or tamoxifen prescription on August 6th. Will find out which arm of the treatment on the 1st / 2nd and bloods on the third. Have also asked for the cold cap.

Brilliant that you have a date Mrsp, it think it makes it much easier once you know when things are going to start. Fingers crossed the cold cap works too

I'm keeping everything crossed for you LAA, let us know how you get on

Hi everyone,

Not too long to wait mrsp then. Enjoy the lull before the storm, I will feed back how my cold cap goes too.

I hope you stop being sick soon purple have you had any anti sickness meds yet? I have been recommended lemon as a settler (in water hot or cold) not sure how effective, but worth a try if you can keep it down maybe.

My day out at hospital has been great in all honesty! (I need to get out more, I know!!)
I found out my bone scan was clear, they didn't do the heart US yet as are happy I am healthy for now and I will get an appt for that soon. No need for bloods, they are happy to use the bloods I had done at the end of June as nothing has changed since.
I spent a fair bit of time at the cancer centre, I went through some of my critical illness claim form, then took part in a pilates class. Had lunch with my book in the garden and then did the MRI, that was ok, but I am rubbish as as soon as I know I am not supposed to move, I develop a twitch! My jaw kept clenching which is not that useful when they are trying to scan your head!
After that I met the wig lady and was given a couple from their stocks that suited me. One ash/blonde/silvery bob and a long dark one which is not remotely my usual colour, but looked great! I may be a wig convert for nights out etc. The kids want me to wear the silvery one for the school run tomorrow as they prefer it to my scalped look! I do not feel confident yet to wear them out, but was advised to wear them in the house for a bit to get used to them first.
My dog went to doggy daycare for the day too, so is bushed

Chemo nurse tomorrow....

purple how did it go today?

mrspotter good you've got a plan in place too :)

LAAA distraction definitely helps. I hope you get seen soon

noodles that sounds like quite a relaxing day too, apart from the medical bits! I used to look forward to chemo sessions as some cycles it was the only time I left the house

Waving to everyone. Early night for me.

Fun packed day Noodles! I'm glad the scan came back clear. I'm going to see if I can try on some wigs next week. If I don't like them I have plenty of scarves instead. If you sometimes wear hats then wear them over your new wig and it might not be as much a shock

I haven't been sick anymore, that just seems to me a morning thing at the minute

Leslie chemo was a nightmare, I got there at 7:50 this morning and didn't leave until 6:30 as they had problems getting the chemo in and it was really busy so they had lots of other people to see too. It went fine though, no reactions so far thankfully. I'm physically shattered but mentally wide awake thanks to the steroids
I've taken a couple of sleeping tablets so hoping I'll get some sleep tonight

That sounds like a long day purple I hope the sleeping tablets kick in quickly and you do not have any side effects from the chemo tomorrow.

I think the weather makes wearing wigs less comfortable than in cooler weather. Esp with hair underneath as they are quite hot. Good luck trying on next week. Has the pink Amazon one turned up yet?!

How's everyone today?

purple ugh I remember the long days when I first started. It's worse in this heat too. So sticky in the plastic chairs! Thankfully mine is much quicker now so hopefully yours will be too :) I hope you managed to get some sleep last night

noodles I can't imagine wearing a wig in this weather! Sweat-tastic

I'm feeling really tearful at the moment. But not sad. It's mostly tears of joy the world seems so beautiful. I sound unhinged.

How are you feeling today purple? I hope the sickness has gone and there are no new side effects.

Leslie tears of joy are good, you do not sound at all unhinged! I find the nice stuff makes me as tearful as the not so nice stuff some days. It definitely sorts your priorities out and makes you realise what you value in life doesn't it?

I met the chemo nurse today prior to 1st chemo on Friday. It sounds daunting with all the possible side effects, just the number of anti sickness meds I have to take made me have a little cry! I just want to get on with it now. I had got muddled with my cycles, so it is actually 3 X fortnightly cycles of EC 1st, then 4 X 3 weekly cycles of docket axel plus the hormone stuff too. I have to inject myself at some point with something too (into fat) I have totally forgotten what and when, but that has made me a bit squeamish at the thought. Not such a nice day at the hospital today. I had one of my best friends with me, who made it all quite bearable. We had a costa 1st and I have just realised they do Portuguese custard tarts too (my absolute favourites after visiting Lisbon a couple of years ago) I can definitely recommend those & am sure they must settle stomachs, so worth having for medicinal purposes if nothing else

Hello to all you lacies & hope everyone is feeling ok now it is not as hot outside too

I slept surprisingly well. Glad I stocked up on sleeping pills
I'm either super bloated or constipated today. Really uncomfortable and I can't tell what it is, other than that and having sore hands from all the attempts to get the cannula in I don't feel too bad at all

Leslie I get like that too, I constantly have "something in my eye, nope definitely not crying!" It really does make you appreciate the small stuff

Noodles try not to worry too much about the side effects, the have to tell you them all just in case but it's likely you won't get most of them

Still no wig knowing my luck it's probably coming from China

I'm currently working my way through a second pack of ginger biscuits. They're good for sickness apparently. That's my excuse anyway

I don't think I am overly worrying about the side effects now It is just depressing listening to the (massive) list of possibilities & brings you back to earth with a bump. I think most of the time it feels like it isn't really happening to me, but then every so often it really does. I just want to get started with treatment now.

Also, probably due to having biopsies & markers done, but my lump & node feel bigger and harder, so it feels like they are growing. Even though I feel completely fine everywhere else. In fact, probably due to the lack of stress at work at the moment, I have had loads of comments about how well I look, nice hair (even now it is super short) etc etc so it feels totally at odds with my diagnosis.

I am ok though & am sure will be fine once I get going with it all. Roll on Friday...

Hi all, new to this bit and would be grateful to know if any similar expenses. Found a lump a month ago - was referred to clinic last week . I had X-rays and US then biopsy. Consultant said he was concerned and asked me to go back today to get results/discuss next steps.
I have just had a call from the nurse to say that they are putting the appt back to next week. She says there is no firm evidence of malignancy but there are similar features to spindle cell lesion so they are running further tests. Was so hoping to get all this over today .
I have been following your stories and feel inspired by you all .
This is such a difficult time for all my family - I lost my eldest daughter to suicide in May (first year uni student😥) today is the first anniversary of my mother's death- we are all in bits and I can't bear to put everyone through more worry . I was just hoping to be able to give them some facts today . Now I don't know what to think ....x

Oh Eveteen I'm so sorry about your daughter. What a tragic, awful thing to happen. Flowers just aren't enough but sending you some anyway for you, your Dd and your mum.

I can't help with breast cancer or spindle cell lesion - I have ovarian cancer - but they are obviously taking care to ensure they know exactly what's going on so even though the waiting is awful, they're on the case.

Thank you. I am probably braced for anything now but just wanted to know what I could be dealing with . I have another daughter about to start uni in September- I am dreading to have to tell her if I the cancer is confirmed 😪xx

Aw Eveteen what an awful time for you I have no advice on breast cancer (mines cervical) but I'm sure one of the lovely ladies on here will be along soon to chat with.

Just keep in mind that nothing is confirmed yet and this waiting around part really is the worst time as your mind goes into overdrive with all the what ifs.

#Year# it sounds like you are having the same tests done as my mum at the minute. She had her biopsies done last Thursday and we now face a 3 week gruelling wait which feels like it is taking forever.

Hope your mum is ok football. I only had the biopsy on Friday but the first test came back without any conclusion.
The waiting is hard purple - made worse by the fact they told me to stop taking my HRT. I am seeing my counsellor tomorrow (seeing her following my daughters suicide) so she may be able to talk some sense in to me . I am fairly pragmatic about the whole thing . The worst of the worst happened when DD1 died in May so anything else should be a walk in the park .😬

Thank you Eveteen, just got to wait it out. I've got everything crossed for you. Hope your counsellor can help you make sense of everything.
All you ladies on here sound amazing and strong.

Eveteen What an awful thing to have happened. I am so sorry for your loss and that you have to deal with whatever this health worry turns out to be on top of that, and your Mums anniversary too.

I have no advice, you are in the best hands now, the waiting part is the worst and hopefully it will be a good outcome from the biopsy eventually. Just look after yourself as much as possible while you wait to hear.