Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

@frostyfingers I have a port rather than a PICC line, it does make it easier! I am cold capping - it is less successful for EC (I think the Paxman site says 50% of people will keep 50% of their hair, or something like that. I have chemo brain, I may have remembered that wrongly!!), and I pretty must lost all my hair. I'm still cold capping as it's said to preserve hair follicles and promote quicker regrowth. I think I have some regrowth now (I'm on paclitaxel now, and have had 5 of 12 lots of it).

There is a Facebook group for the Paxman cold cap. I find the regrowth photos cheering, but I don't go on there much because there are some smug "I cold capped during EC and did everything right, so barely lost any hair" posts which piss me off. I did everything right. There are no guarantees 🤷🏻‍♀️

I also found the Paxman Facebook group helpful - it’s very American though as they have to pay for their cold cap by insurance so there is a lot of “is it worth it” discussion. I’ve posted on there v recently with photos of my hair before & after - I’ve kept 50% of my hair on TCHP and it does work. Keep it in mind to concentrate on what of you have left on your head and not what you lose. It’s painful but bearable.

Thank you all! It’s daunting that’s for sure.

I also have a confession to make regarding my DH. He came out of hospital yesterday and is understandably stressed, he’s in pain and has a lot of medication to deal with and I get that. However, there has been no mention or enquiry from him about how I feel re my chemo, which upsets me more than I expected and has made me quite cross. It’s like it’s a little inconvenience, and of course it’s nothing compared to what he is facing but it’s a big deal for me and I’m not sure how long I’ll be able to keep quiet. It seems a little unfair and wrong to be moaning so soon though and I feel bad for feeling slightly resentful.

It’s a difficult one to unpick!

@frostyfingers ive come to the conclusion that some people are not that inquisitive. My DH isnt! He assumes I’ll tell him if something is wrong and he will listen - rather than asking. It’s ok to feel a bit disheartened and to complain about it. He’s not thinking straight at the moment. So sorry you’re both going through this.

I lost all mine but it grew back very quickly. That’s the other day and after a year nearly. I can’t be bothered to dye it anymore.

im off into central today as my sister is down with her children. I cry before I see them I tried to talk about it last night but like my mother she doesn’t want to know. Not in a bad way just that she is trying to be positive. I also got the impression she didn’t want me to talk about it in front of the 12 year old.

That is a very fine head of hair, @Eachandeveryone !

We told our 16-yo DD yesterday and she did not react at all like we expected. She was very matter of fact, not upset all, just 'OK, mum, can I go now?' We left her be, and then she came into my bedroom last night and had a long chat where she got the information she wanted, I hope. I guess being able to start with 'I am ill but I will get better was massively helpful in that regard. She was off to look at headcoverings for me once we finished chatting!

I'm off to London today with my youngest to watch the UTS tennis finals so very excited.
Got the tickets ages ago and wasn't sure I'd make it after surgery on Wednesday.
DH is quite disappointed because he was all ready to take my place.

I've been amazed how quickly I've got over it.
Apart from some discomfort at night it's luckily been a breeze.
Onwards and upwards!
I'm going to enjoy the next few weeks, putting it all out of my mind until the 23rd.

Then what will be will be

This bloody illness is horrible. More and more people are getting it. 6 people in my small street have cancer another mnd.
i was treated for colon cancer last year, had capox to clear up any cells. Then a year to the exact date on my first survalance scan, they found it had spread to my right ovary. So had another operation three months ago. Ovaries out and tubes. Tumor weighed 2kg!!! So they are out and everything is clear. Thank goodness.
scans and bloods every 3/6 months. No chemo needed for this bugger. It’s so scary I have went from stage 2-4, curative.
Put into surgical menopause.
Iv not finished! They also found a mass in my chest a year ago. The consultants don’t know what it is. I’m on watch and wait with this. But Iv opted to get it removed. It hasn’t grown in a year.

Im back at work part time.

Morning all.

had an argument with DH this morning mostly about money and his work. He feels like no one cares about him. Despite everyone asking him how he is he assumes they’re not genuine.

Your hair looks fabulous @EachandEveryone

@ememem84 bloody cancer does put a lot of strain on family. But they need to get support for themselves from someone other than the person with cancer. I hope you're okay.

@BatshitCrazyWoman it does. And we will be ok. He’s just off on one. Should have guessed really. It’s the season for it.

his parents divorced end of November 2014. His mum moved home to nz that year.

the “I have no family here” essentially means “I miss my mum”. Which I get. But it’s also not my fault that his dad barely speaks to anyone and doesn’t want to be involved in our lives or our kids lives. It’s not my fault that DH is shit at keeping in touch with friends and family (this isn’t my responsibility to fix!)

he kicked off also because he went out out on Friday night. Works do. No probs.

Friday for us here was when the winds were highest and we were advised not to go out unless necessary. I dropped him a text asking if the do was still going ahead in light of the advice not to go out and that most pubs bars etc were closing. Apparently I was being overbearing and inconsiderate. And not caring at all. And I was implying that he had to stay in because I can’t cope alone with the kids. I wasn’t. And I can.

my text simply asked whether the do was going ahead.

im cross. And upset. Cancer causes all sorts of problems.

Yes I was snappy with my niece today and I shouldn’t have been and I practically told my sister it’s because she’s done everything for her growing up. God forgive me, I actually think she’s sheltered them from what is wrong with me whereas I’d rather be able to talk about it openly,

was it someone on here that was going to see Kathy Burke today? I just got back and thought she was brilliant

Hi,

Is it alright to join in, please?
Have just been diagnosed with lobular cancer, in my breast and the lymph node in the armpit.

They are going to check out the other boob, and also, just to add insult to injury, they've spotted some suspicious thickening on my bowel when they did a ct with contrast.

I kind of imagined I'd have a stage or grade by now, but it seems not?

I feel I've been poked and prodded and pulled around enough to have something more definite,

Don't they look at both breasts during the ct?

Thanks and hello - sorry that was all me me me.

P. S. I love Kathy Burke!

In my limited experience, being podded, poked and asked to strip off in multiple is just part of this glorious journey.

I've become somewhat immune to it all lately.

I used to moan and grumble if my GP requested a blood test.
Now I go into my appointments expecting to feel like a lab rat 😂

@drivinmecrazy Oh yes, I almost automatically start taking my clothes off as soon as I get into any consulting room now and am surprised when it’s not needed. @CatonMat sorry to see you here, it’s a very supportive place full of kind people and helpful info.

It has reminded me a bit of pregnancy in that way - having your breasts on display (if breast cancer!), and having people measure, comment etc. It can feel very undignified. It feels like not-what-you-need when (in my case - not a cheery optimist it seems in this situation) you are also grappling with your own mortality.

Ive a appointment now for Wednesday, to check the other booby, but they've already done a whole body ct.

No point getting cross, but I can't help thinking it seems a lot of checks, rather than one big one.
I'll have to trust that they're doing what's best though, and stop complaining.

I feel decidedly prickly, emotionally, as if I could have a big tantrum.

@CatonMat completely there with you on the prickly bit! I am definitely snappier at the moment. I did suggest to my team at work if there was any of our suppliers who needed a rocket up their arse, now would be a good time to ask me to do it!
And yes to the loss of dignity and having people comment - the breast surgeon said ' Lovely healthy nipples' as she was examining me and it just sounded odd 😜

Hello @CatonMat. Sorry you need to be here but you’ve found a great group for support.

@breastcancerpanic - you’re right. I felt like I had to flash my undercarriage to anyone medical coming into the hospital room post- birth!

It’s a whole list of “things I never thought I’d do”. Eg, being behind a curtain with a gorgeous Greek chap palpating my boobs, whilst my husband was on the other side. See also behind a curtain whilst a gorgeous Greek chap measured and photographed said boobs. He is, of course, my amazing surgeon and I feel so lucky to have him overseeing my care.

Welcome to the new people it's such a helpful community here.

I agree on feeling emotionally prickly but at the same time I feel sort of...blank? Like I haven't the energy to act on it.

My update is a week delay on my third chemo of 12 due to low neurotrophils. Did anyone experience similar so soon into chemo? It's knocked me a bit.

@CatonMat sorry you’re hear and yes it does feel like an intrusion. There are lots of similarities with pregnancy, child birth and being a new parent. Just without the nice bit of new life being born!

I definitely felt prickly during my diagnosis month (the bit between being told it was cancerous and being given a treatment plan - only close family knew at that point.) I recall snapping during a really shitty meeting at work, I was the most junior person in the room, and pretty pragmatic and solution orientated one at that, the managers were playing silly buggers with office politics and I just said it how it was…. to a quietly shocked room - I thought afterwards “you’ll find out why I acted like that in about 2 weeks”!

@Mintymood none of my chemo was delayed but after no.4 I felt pretty rough the whole time - just not enough red or white blood cells - it’s culmulative unfortunately - so sorry it’s been delayed but at least you get to recover a bit - I think it’s quite common.

I have a surgery date now - a fun Xmas I’m going to have. Just trying to plan childcare/Christmas events/work etc.

dh Went to dr today and has been signed off with stress. Which to be fair is not surprising. he’s under a lot of pressure with work and me….

it is bloody freezing here. I found out yesterday that we are apparently entitled to have our heating bill paid by a local charity. Not means tested. So I’ve emailed to ask a whether this is true and b what the process is.

also realised that I hadn’t been sent the full invoice for my wig. So have asked for that so I can reclaim on my insurance.

Thank you for being understanding.

I don't understand myself. I seem to be a cross between mother Theresa and a Tasmanian devil.

I spoke to the bowel nurse today - she was too nice by half, and it made me suspicious as to why.

I must have said "bowels" more time in the last few days than I've ever said in my life.

I'm very, very afraid of the colonoscopy and biopsies (plural!) that she spoke about.

I'll be quiet now, and read about your trials and triumphs.

@CatonMat No need to be quiet unless you want to.
I have also been very frightened during this process (check my username!) and had all sorts of messy other emotions. I can't remember when I felt less in control of my own mind than during this process.
I know that it is hard to believe - I could not believe it myself - but I really do now think that the worst part of this is what you are going through now - the early uncertainty stage. Since then I've had three ops, including a raging infection from one of them that led to a week of hospitalization and the third op. Dh told me that my infection week might have been the worst week of his life. But for me there is really no contest - the early days of diagnosis - and even pre-official-diagnosis when they knew really - were absolutely shit. The ops since have been a breeze. (Note to self: I still have chemo to come...).
Sorry, a long-winded way of saying - cut yourself some slack. You're experiencing something really really difficult, and any emotions would be understandable now and for a good while to come. Here for you to listen if you need it!