CANCER SUPPORT THREAD 65 - for anyone with cancer or waiting for cancer tests (pets welcome!)

[WhatWouldLeslieKnopeDo]

Good morning everyone,

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here.

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then you can get support here.

Please feel free to reintroduce yourself so we don't all have to remember from the previous thread!

To those that like Poirot you might like the Miss Fisher Mysteries.

Miss Fisher wears some beautiful clothes!

Tahiti - So glad to read all went well 💐

KeepCalm - It’s brilliant that their schools are on top of things. I’m sure you’ll find it reassuring during school hours knowing that there are people there looking out for them.

@AimlesslyPurposeful Phyrne was on my name list for by DD. Just going to have to get another pet to use the name up now.
Ariadne from Poirot was on it too!

Miss Fisher trailer here...

Phyrne would be a lovely name for a dog!

If you’re in the SE can I recommend Last Chance Animal Rescue in Edenbridge in Kent. They’re all such lovely people there and they work so hard for the animals they care for.
Also there’s the most beautiful litter of ten Rottie/Lab pups looking for homes and their lovely Mum, who is a small Rottie really needs a loving home with someone that is home most of the time.

Miss Fisher is ACE

Tahiti don't worry about catching up. Just rest and give your body a chance to recover I'm glad it went smoothly.

ranout I hope you don't feel too rough after today :)

Waving to everyone else. I hope you're having a good evening.

Aimlessly yes, agree absolutely. It's not someone disagreeing that's the problem, it's when they tell you you're wrong for feeling that way.... GRRR.

We love Miss Fisher here too. A Rottie / lab cross sounds lovely. Rotties are gorgeous.

Leslie I'm good tx. Purple I went to see the palliative nurse yesterday. Her advice was a lot better in the flesh than it was on the phone. I did say that I was there to ask questions and not to talk about me. I am entitled to 6 sessions of reflexology or aromatherapy so she's signed me up for that (whichever is available first); also counselling, and I've asked her to refer me for that.

I love a nice comforting murder!

Poirots are probably my favourites, and they have Agatha Christies on after my other current screen vice (Classic Corrie) ITV3 weekday afternoons.

I’m feeling downcast because no London Marathon place for me, not even via the charity for whom I’m running the Half this Sunday. I don’t know why I’m so bothered. Perhaps because it’s somehow morphed into a wider metaphor for being strong in body?

Still, it’s just a thought to observe, explore and deal with (that mindfulness course really was worthwhile!)

Morning!

Poirot all the way for me, am not as keen on Miss Marple & need to check out Miss Fisher as have never watched it...

My toe on one foot is playing up still purple thanks for asking. It feels like a big bruise under my nail & the nail is very sensitive. Luckily the one on the other foot that was bothering me has calmed down and not niggling me at all.

Apologies for the lack of posts, I had my friend visiting from Glasgow over the weekend and we have had a fab time, have been catching up on jobs etc before chemo 2mosince she left.

I went into hospital Monday for bloods and asked about the flushing it through comment. I think I misunderstood what was being flushed through, so apologies if I misled anyone. Basically The nurseI spoke to & questioned further about food/drink during chemo made complete sense. She said you don't flush chemo through, it stays in your system for 3-6 months, you need to drink lots to get rid of any by products and help kidneys/liver etc and eat what your body needs to fix the healthy cells that are repairing after chemo. Side effects are caused by damaged healthy cells. She said you don't need to eat loads, but protein and balanced nutrients are important. Which I guess is what the Royal Marsden cancer cookbook that was pictured (sorry but I cannot remember who suggested it) is good as it covers all nutrients etc needed by the body after chemo. She also said that sleep does wonders to repair the healthy cells too. Sorry for any confusion over my misunderstanding of what she originally said...

Lesley glad your lunch went well & that your Nutella ice cream went down well. Sounds delish

simmi Sorry you are feeling so rough, I did on my first one within an hour of getting home. I had dreadful nausea, rest up & hopefully the side effects will lessen soon.

keepcalm I hope you are enjoying the Crete sun. Well done for telling you kids, probably the best place to do it where the are not accessing the Internet in the same way as at home and you have family time together if/when any questions crop up. I like the idea of the MRI playlist.

TQ that friend sounds a pain, I have a similar one who has avoided me all summer (is a student nurse) when I have bumped into her, I get very intrusive questions and feel like an assignment for her coursework! I am avoiding her as much as possible. Your treatments sound like they will be enjoyable. They do similar ones at my local cancer centre, but I haven't tried any yet. I planned to, but my nausea was so bad to begin with I will see what is available after chemo ends for me.

My op is getting closer now, I think it looks likely to be just before or just after my eldests 8th birthday. I am hoping I can request just after so I can do something nice with her for her birthday. The consultant took a while to locate the tumour & node on Monday & says it has definitely shrunk more. Am not sure if or when I will have a scan or US to measure it again and when I will find out.

Tahiti how was your op? I hope you have a good recovery.

ranout I hope you had a delicious Thai meal at the weekend.

Aimlessly that is unbelievable that they were looking at an old scan. The puppies sound gorgeous, are you likely to bring one home to add to your pack?! Must be tempting

Waves & hello to everyone

I love Miss Fisher’s clothes! I also love the phrase “a good comforting murder” ivampire

Feeling a lot better today - been to the park with DH and DDs and starting to feel human again. Wishing everyone a lovely Wednesday morning

I'm glad you managed to get some answers from your palliative nurse TQ. Knowing the answers to any questions you have puts you back in control a bit. I'll see how my next scan goes and then I think I'm going to have to bite the bullet and speak to them. Although I have no idea what to say or what to ask It just makes everything a bit more real and at the minute I'm doing a pretty good job of burying my head in the sand

Noodles I'm sure they'll be able to do your op after your DDs birthday, brilliant news about it shrinking so much! That makes sense about flushing the by products out. I won't make the mistake of not drinking much on chemo day again

Glad your feeling better Simmi, I remember thinking I was going to feel poorly forever after my first one but it soon passes. The next one shouldn't be as bad for you

Can I ask you ladies who have experienced hair loss what you used?

I promise am not vain at all BUT I do love in Scotland and have a massive head (men's size hats mainly) and have two black tie events and a media campaign coming up.

I have been advised to get a wig fitted but that's not overly practical in my line of work.

Does anyone have any tips/hints/suggestions?

Whatever you feel most comfortable in KeepCalm! And whether you want to be bald and bold or cover up (and depending on the weather!).

I'm useless with anything that requires faffing around, so no wigs or scarves for me. I bought some turbans and hats from www.annabandana.co.uk/ and these were fine. I was bald in the summer though, so mostly went 'naked'. However, I'm going to lose it again and it will be winter then so I may need something thicker..

Simmi - Just want to second what Purple said about the second chemo being easier.

I had my second Oxyplatin yesterday (Started two weeks of Capecitabine last night) and don’t feel as awful today as I did after the last time. Think knowing what’s to come and that the worst is over after a week (The pins and needles and aversion to touching anything cold had eased lots by then) helps. My arm is sore as they had to use a vein as port still not right but I’ve got it wrapped in a heat pad which helps.

Noodles - I wish I could bring Mummy Rottie home as the pups will find homes quickly but she may not (It just breaks my fucking heart that irresponsible tosspots let their dogs get pregnant when rescues are full to bursting! There aren’t enough homes for the dogs already here. But, then to give the mother and the pups up! Poor dogs. They may be man’s best friend but we are not theirs). However, it’s unlikely my big girl Doris will take to another large female. Plus DP would move out and I need him as he brings me a cup of tea in the morning. It’s taken nearly 16 years to train him (He’s not as quick a learner as the dogs) so to lose him now would have been such a waste of my time.

Oops forget to add...

Noodles - What op are you having. Yes definitely ask if it’s possible to push it back a couple of days. They might be able to swap you with someone who would be very pleased to have their op brought forward. Wold be lovely to get in a Birthday celebration before the op. x

Hate to ask this but at what point do you need to speak to the palliative care team. I mean does the Dr advise you to or is it something you organise yourself and should it be done soon after terminal/incurable prognosis or later? x

Hi everyone

Chemo was ok yesterday. Apart from tiredness (touch wood) I feel ok. Been to the supermarket after drop off and a quick collection of birthday bits for my soon to be 5 year old tomorrow. Now on the sofa watching The Guardian, will take my steroid in an hour and hope they don't interrupt my sleep tonight!
@Simmi1 pleased your up and about. The first one is hard as you don't know what to expect and rest is really important. I pushed myself too much round 2, so this round (3) I'm definitely getting my feet up! I love Miss Fishers whole style. My wig is a short bob!
@noodles44 hope your foot is feeling a bit better. Definitely see if they can push you op back. I think mine will be due in Jan and it will be my DDs 8th birthday then too! She loves a good party, as do I so I'll see what they say when it comes to it!
@TwitterQueen1 How you feeling after your chat with the team yesterday? I can't put myself in your shoes, but I do know that I need some control over the process.

@KeepCalm I've coldcapped for all 3 chemos so far and have hair but there is a noticeable reduction especially on top. I wear hats day to day as it's cold now. I've got a couple of scarves one of which I can cover up most of the really reduced bit and one to cover my whole head but it is a faff! I also had a wig fitted before treatment. I do like it and wore it sat night when I went out with DH. I was nervous it would be slipping down all night so need to figure out how to adjust it! My hospital had a lady who comes in to do wigs and they make you an appointment.
Currently been fasting again on those chemo and I'd usually wait till teatime for my meal after chemo but I think some crumpets will be calling for lunch this time!
Nice and sunny here in Yorkshire today. Hope everyone else has a good day and some rest - while watching dodgy tv!

Just a quick message re head covering. I bought a wig in a rush when first diagnosed but just don’t get on with it really. It’s in a bob shape and my hair was short before. I am also useless at tying scarves etc, I found a site called Rosette La Vedette (not sure how to do links). They have headwear with easy tie scarves and turbans. I have bought.a few things from there and been very happy with them. They are designed by a woman who has had breast cancer. There is no internal stitching or elastic to irritate the scalp and they cover your head properly without being too tight. I have a massive head and high forehead and they fit me well.

The sites based in Belgium. It I just pay in credit card. Delivery is really good within 2 days by courier.

The caveat is they are very expensive but as they work for me I don’t care. Not spending much money on anything else at the moment

Ranout - Really pleased to hear your chemo went ok! I think you’re fabulous going to the shops this morning! Do you feel at all dizzy? Is your chemo every three weeks? Mine is and next one booked for the 31st - Halloween!

Disappointed as I bought a witches hat to wear to open the door to trick or treaters and a pumpkin costume for Winnie the Pom so she could greet them with me. Lovely DS3 has said he’ll wear the hat if I get him a witches dress to wear with it and will be door man and sweety distributor for the evening.

Re wigs - For anyone wanting to experiment at very little cost while also contributing to charity then WigBank might be a good website to have a look at (Wigs around £30.00 with £10.00 to charity if I remember rightly).
Many of the wigs are secondhand but they’re washed, disinfected and styled before going on sale. They sell new wigs too.

Link to WigBank here

Aimless I totally agree regarding the dogs & puppies and the idiots that think they should let every female dog have a litter (often as they think it will be a good money spinner) The pups do usually get rehomed quickly. I tried to rehome an ex breeding bitch from an RSPCA case who was only 8 months old when removed (& pregnant) I took Mum rather than the pups, she was a cocker spaniel and absolutely lovely, but although we (me and kids) visited her & took her for walks etc whilst she had the puppies with her at the centre as we couldn't take her until the pups were old enough, she totally freaked out in the home around my children and despite loads of training, didn't improve, so after 4 months & I had to take her back and an adult family rehomed her instead as she was just terrified around my children. I was absolutely gutted. I have a scruffy bitsa now instead.

My op is to remove a lump in my breast and also all my lymph nodes under my arm. I have a chemo 2mo and my last one (which feels totally unreal to say) in another 3 weeks time. I have so far just focused in the bit I am dealing with, so have only just questioned what happens next at the consultant appt. I think they will need to do a scan or US first and also I will probably get a letter through to meet the surgeon again (he was the first consultant I saw at the breast clinic) but at my consultant appt on Monday the man I saw was covering the usual person, so didn't have any answers really, just advised what he anticipated.

ranout glad the chemo is not having too many side effects. Make the most of your down time with the tv before the birthday celebrations tomorrow.

Keepcalm I got a wig from the cancer centre attached to my hospital before I started treatment. I thought I'd see how I felt about wearing it before I bought one. I have mainly been bald or had a cotton cap which I wear a baseball cap over (otherwise the baseball cap doesn't fit very well as have no hair and it keeps my head cosy) I got my cotton caps from Bold Beanies. I do wear the wig now the kids are back at school, mainly because my daughters have asked me to for the school run. I do but feel very self conscious in it as don't wear it that often apart from that. It is handy to have a wig for days when you don't want everybody to see you are bald/have cancer. I cold capped for my first 2 chemo's but so much hair fell out after the 2nd one, A friend shaved it off which was preferable to my patchy look...

Aimless your son sounds great, now you just need to find a suitable dress for him!

Aimless when they told me I couldn't be cured they asked if I wanted to speak with a palliative nurse but my head was all over the place so I refused. I'm not quite sure about when you need to speak to them, if you have anything to ask them I'm sure the hospital will put you in touch with them

Keepcalm I also use AnnaBandana for hats and normally wear one of their beanies day to day. I'm not sure what I would wear to a black tie do though. I like to think I would brave it out and just turn up bald but it's so bloody cold having nothing on your head

TQ I'm glad the nurse was better in person :)

iVampire that's such a shame will any charities have places still available nearer the time?

noodles I hope you enjoyed your friend's visit. I'm sure there will be some flexibility with surgery dates.

Simmi I'm glad you made it to the park :)

Aimlessly I'm glad you don't feel as shit as last time. Hopefully that will continue and the arm pain will wear off soon I don't think you need to contact the palliative care team at any specific point - just if you need their help with pain/symptom management, which they are the experts in.

KeepCalm I got hats from Anna Bandana too. My wig gave me a pen awful headache. I always say the same thing, but make sure you get something for night time as it will be bloody cold without hair!

Waving to everyone!p.

I don't think there are any 'rules' around the whole palliative care thing. I think I was automatically referred by my Dr and a nurse did come round and visit me last year, but that was way too early for me. I believe it's an additional 'support' network - hence the counselling and aromatherapy - but I suspect it kicks in more when you get really ill.

I didn't ask but I think that if you get to the stage where it's a choice between care at home or care in the hospice / rainbow hospital rooms, the nurses (Sue Ryder here) will help facilitate that. So they will come and sit at night for example, if you're at home and the family need a rest.

My Dr has left a message saying she will ring me tomorrow so I she's knows I've made contact. The palliative team where I live is based in our local community hospital, which is good because my main hospital is 20 miles away.

Leslie you are the fount of all knowledge, what's your view?