Cancer Support Thread #79 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

I’m back from my appointment, treatment is 4 FEC and 4 T, due to start on Friday with a 3 week cycle. If healthcare at home can’t do Friday then he will go for Monday. ECG was fine and the cardiologist gave the go ahead.

@MrsPnut how are you feeling? If that's not too stupid a question?

A little punch drunk if I am honest. I didn’t expect it to start so quickly.

I bet. Not much time to get your head around it all

Last time I had a few weeks between the first appointment with my oncologist and starting treatment.

I have a question, due to have colonoscopy on Thursday afternoon. Had very few instructions from hospital about what to eat. I've followed the low fibre diet today, but have just read from one trust that you should not eat anything solid the day before the procedure too.

Can any of the bowel prep pros advise?

Good luck @MrsPnut. That's fast, no dragging of feet there.

@MrsPnut - that is quick but pleased to hear the ecg was fine. Good to be underway though.

@Acinonyx2 - they pondered antibiotics but decided against based on ultrasound. The dressing has aggravated it which doesn’t help. They said to check in with them on Friday but my community nurses are brilliant and said I can call them about any concerns too. I have been told to keep up the laxido

My nurse said another patient being treated in the same unit at the moment lost her (fit and well) husband to covid a few weeks ago which put my port into perspective somewhat.

@Recorditnow It’s usually no food and clear fluids only from the time you start your bowel prep. You can have clear drinks including bovril and squash as well as wine gums/jelly babies but not red or black ones.

Thanks @MrsPnut

Any idea if orange flavoured lucozade is considered a clear liquid or should I stick to lemonade?

I will be so glad when this bit is over.

I usually drink lemon squash so I’m sure orange lucozade would be ok.

@Recorditnow I was allowed my low fibre breakfast and then only clear fluids the day before. I was starving. If you are having fizzy drinks, leave them to go flat before you drink them. I also would think orange lucozade would be fine.

@ChickandLamb I am not surprised you feel you are about to lose it. I don't think anyone outside of any of this appreciates how much mental strain all this puts us under. I have to be my own secretary and have to advise staff trying to book me in for things of all my other appointments and potential clashes. Surely in our modern age a computer could inform them of our other bookings? Having a date changed throws everything out.

@MrsPnut that is very fast and must be very overwhelming for you.

@Lunificent I had the follicles hurting as though I had had a ponytail in for too long. DD cut it short all over but I still had this feeling. Once it had all fallen out, the feeling stopped.

@FizzyOrange what time was your colonoscopy? Mine's at 4 pm - suspect the last of the day. I'm going to be so hungry. If my last meal is breakfast today and presuming I can't eat until around an hour or two after, that's a good 34 hours without food 😩

@FizzyOrange thanks. Oddly: the hurting follicles is the only thing I’ve taken painkillers for so far. I’ve pulled hunks out of the back today. Not shaving it yet as I have a Zoom meeting with DD:s school today. Trying to hold out as long as I can.

@Recorditnow I had to be empty for OC surgery with suspected bowel involvement (there wasn't in the end) and it was 9am. My last movement was at midnight the day before. I was starving. The lucozade will give you some calories and my instructions said you could add sugar to drinks so I put some in black tea.

@Lunificent once mine started to shed it was coming out in handfuls. I was finding hairs everywhere, in food, in the fridge even, it was revolting. I didn't ever shave it as that felt too brutal to me, I just had my short cut from DD (which oddly I quite liked!) and then the hairs that fell out weren't so long. It still hurt though. My hair wasn't even that nice but I have truly struggled with losing it and has been one of the worst parts for me. I know what you mean about hanging onto it as long as possible. Only DD has seen my bald head, the thought of anyone else seeing it, even a doctor, is just awful. I was really brave the other day and answered the door to my neighbours who are dear friends to me - they had asked if I would take an important parcel for them and they were collecting it. It was a real breakthrough for me to be able to stand in my turban chatting about normal things. They are the first non-strangers or medical staff to even see my turban!

I hated losing my hair the first time, I never looked at myself in the mirror without anything on my head! This second time, hair supposed to thin a bit, but Ive nearly got a Friar Tuck on the top, and this has upset me more than losing the lot the first time ! Took me months to grow it back
previously.

Wahoo! There’s a party happening at Top of the Cliff Towers. My DD2 has just heard she has been accepted onto the local Oncology training scheme so she can move back home with her partner and in five years or so she will be the loveliest consultant oncologist ever! I’m so happy for her.
Meanwhile Orange Laxido shots.... great tip!

I have a very short zoom admin meeting this morning for a small job that doesn't know I have cancer. Little do they know how non-casual this is for me as I get my sensible wig out.

@thereisonlyoneofme I also don't like seeing my own head and avoid it at all costs.

@Acinonyx2 oh gosh good luck that would be an ordeal for me.

@Top what an achievement, you must be so proud, what lovely news!

@TopOfTheCliff oh I missed your super news. I do envy you having a child with relatable interests and aspirations.

@TopOfTheCliff that's great news. Congratulations

Great news @TopOfTheCliff

I've just walked the dogs. Eaten a McDonald's and now thinking of having a nap because I deserve one. Which means that the phone will not stop ringing and the dogs will bark at everything and anything.

Fantastic news @TopOfTheCliff. You must be very proud.

Wig buying was hilarious. Even with a similar style they just didn’t make me look like me. I have fine hair and most were far too bouffant. Anyway I’ve found a low density one which they are ordering as they didn’t have blonde only grey. With the grey one on I’d suddenly bypassed my mother and jumped straight to my grandmother! Think I’m going to look for a couple of fun ones though.

@thereisonlyoneofme - I know I’ll be Friar Tuck! I hope your normal hair will return soon.

@FizzyOrange - my daughter just found some of my hair burning under her saucepan of noodles. It will have to go soon!

Great news @TopOfTheCliff, we need more awesome oncologists.

I’ve arranged a wig fitting for tomorrow, I’ve tried on all the beanies and turbans I have ready for losing my hair too.
I want a wig that fits well because I have a huge head and will go for something that is completely different from my usual hair.

I also have a huge head: 59 cm. The wig seller convinced me my medium size wig will fit once my hair is gone. Will find out in a few days.