Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

@londondragonite yes it’s just exhausting - my SIL said no 5 was the worst, then once 6 is done, mentally it’s much better. Depends on your regime of course, I suppose I need to think of it as the penultimate one, and that’s nearly the end. Surgery next, then radiotherapy which apparently isn’t easy, but at least it’s not chemo. Sending solidarity back!

@Littlecaf I’m booking you with the villa’s resident masseuse each day. It’s rotten that you feel unwell on top of having to go through the treatment cycles. Is the next one the last one? Can we all gather remotely in solitary when you finish with virtual party hats and streamers (as quiet or as loud as you need).

@londondragonite remind me how many cycles you have left - it’s great that it’s the last leg.

The mental health support is so needed - I’m aware mine is a dam that will burst, along with dealing with my beareavement. Just KBO. I’m so early in my cycles but if tomorrow’s goes ahead as planned (bloods allowing) I’ll be 1/8th the way through chemos.

Sending hugs to all and nodding at @BatshitCrazyWoman in recognition of the Amazon dopamine boost.

@Littlecaf I’m booking you with the villa’s resident masseuse each day. It’s rotten that you feel unwell on top of having to go through the treatment cycles. Is the next one the last one? Can we all gather remotely in solitary when you finish with virtual party hats and streamers (as quiet or as loud as you need).

@londondragonite remind me how many cycles you have left - it’s great that it’s the last leg.

The mental health support is so needed - I’m aware mine is a dam that will burst, along with dealing with my bereavement. Just KBO. I’m so early in my cycles but if tomorrow’s goes ahead as planned (bloods allowing) I’ll be 1/8th the way through chemos.

Sending hugs to all and nodding at @BatshitCrazyWoman in recognition of the Amazon dopamine boost.

Sorry, weird phone double post glitch.

@Littlecaf just one more. Hopefully radio won’t be as taxing. You’ve had a lot thrown at you.

@dancingwhilstfacingthemusic thanks! looking forward to the spa day and villa! (can it be kid free? I’ll remortgage for a nanny!) best of luck with the chemo - it is shit, sorry, but apparently it’s all doable. It is, I’m just having a rubbish day. Clock change doesn’t help. Buoyed by the fact I’ve fed the kids, put them to bed and now watching Harry Potter on ITV2 as a bit of escapism.

There are many nannies. Those with kids get to keep them after as recovery is a family affair. I salute those of you wrangling young families and/or teens and this.

I’ve just received a tremendous obituary for dad, published in a journal related to his field. It is wonderful. Painful but helps so much that the person writing it (a former student of his and long-time friend) really and truly understood him.

Onwards and upwards.

That’s so lovely re your dad. I’m so sorry for your loss but having something like that is very special. Xx

im grateful my kids are so young. They are still fairly dependant. So this means we have to crack on and do stuff. They seemingly haven’t been too affected by it all. They’ve carried in. School. Clubs. Fun.

and they can’t google stuff yet. So that’s a bonus.

@dancingwhilstfacingthemusic so sorry to hear of your dads passing x

yesterday was full on, it was a lot - mostly in a good way but I'm wrecked from it. Met the oncologist who was great; found I have inflammatory bc (of which he said the cells are invasive ductal) which is hormone negative and strongly HER2 positive. I have a plan now which is chemo first, 4 rounds of EC on 2 week cycles and then 12 round of Paclitaxel on 1 week cycles with simultaneous antibody treatment Phesgo every 3 weeks. Then surgery - radiation - complete antibody treatment.

Straight after consultant appointment I went to the hospital I'll be getting chemo at to do bloods etc and I am starting Monday with a port being fitted then chemo in the afternoon. Now I'm trying to fit a lot in for these next few days - hair cut, work stuff, time with the girls. So strange completely having life upended, I feel like a house in a cop show that's been thoroughly searched and left in total disarray!! I'm so grateful to have a plan though. X

@Flibberdigibbit its good to have a plan but do take care of yourself and go easy. It’s a lot but glad it’s starting for you. Best of luck.

@Flibberdigibbit so glad you have a plan. It really helps and you sound like you have a lot to keep you busy. It really moves at a pace when they get started. Do you have to travel far for treatment?

@ememem84 some great positives there. I have friends who had bc years ago, including node involvement. Our kids were at toddler group together and are now 25 - friends doing well and clear for a long time, living big lives.

2nd pax this afternoon. Dh takes me, 40 min trip there for chemo. If I have other tests needed (like my scan yesterday) we have to drive to Liverpool which is further. I adore Liverpool and its people and have been so impressed with the services there for cancer patients (& all of the amazing university buildings around the hospital).

Bright eyed today so will get a walk in first. Found a bald spot on the crown of my head last night which is rude considering I’m still plucking chin hairs.

DH just had a good look at my hair. Apparently in one of my baldy patches we have a bit of fluff. Like new hair. Which is an interesting development.

That's excellent news @ememem84 I daren't look 🫣 It's still falling out 😥 Feeling a bit more perky today, so I'm going to watch Bake Off from the other night.

I saw my consultant yesterday who confirmed she's going to go ahead to remove the tumour in my right breast and a sentinel lymph node biopsy.
Also after a couple of biopsies on my leftie, it's still inconclusive as to wether there is cancer there due to its location so is going to remove as much suspicious tissue as she can for further biopsy.

To say I walked out of that consult with a skip in my step would be an understatement.

After nearly three months finally I feel we're going forward!

That’s brilliant, @drivinmecrazy Do you have a confirmed date?

yay to @ememem84 for the baby fluff

glad youre perkier @BatshitCrazyWoman

im just defrosting after chemo 2. Yay. 1/8 way through treatment

Also picked up my new hair today. Woooooo

That’s awesome @ememem84 there are a few women on chemo today rocking amazing wigs.

did you go for something similar to your pre chemo hair?

Ooh exciting @ememem84 Where did you get your wig from? I don't like the one I bought (I bought it in desperation, which in hindsight was stupid). Hopefully during my next cycles I feel better and I can go somewhere with lots of wigs to try on.

Yes. It essentially matches my shoulder length chop. I went to see a lady at local salon and I think it was ordered from natural image. I’m super happy with it.

the kids haven’t batted an eyelid

That’s brill, @ememem84 did you need to spend more on top of the wig voucher?

Lots of positives today here peeps - sending love to you all. Well done @dancingwhilstfacingthemusic for getting through today.

My local wig place has a few branches nationally - every wig I’ve seen from there has been really good - https://aderansuk.com/book-now if anyone needs somewhere to start. I’m cold capping and my next chemo is my last - have kept about 50% of my hair - it’s thin with a few light patches, but still looks like I have “hair” so I’m hoping it’s not worth getting a wig now. @ememem84 thats great that you’re pleased! They can look really good.

Just spoke with one of the chemo nurses - I have nerve pain and some neck pain - she was so reassuring and lovely - they work so hard and she called me after 6pm which I wasn’t expecting! Feeling a bit more reassured.

Now watching more Harry Potter, DP and kids are at the footy tonight - I got really anxious about them going earlier, so strange, I didn’t expect to feel like that. Gosh it throws up all sorts of feelings this cancer shit.

@Flibberdigibbit Really glad you have more info and a plan....it sounds like a lot to take in, but great to have things happening.

I've got quite behind with reading and replying....feel very much in limbo currently, as my MRI isn't until Monday and then I will probably still have a week or so to wait for results and a plan. The waiting is not easy! People keep asking how I am, and all I can say is "I really don't know!" I am missing so much information to allow me to even have the first clue how I am!

I actually didn’t use the wig voucher. My insurance will cover/reimburse me for it. So I took the decision to pay for it myself and reclaim. This saves a voucher for someone else who might not have the insurance. I’m all for taking what I’m entitled to but sometimes….especially as I know one of our local charities supports the oncology dept so heavily…..

Woke up at 2am with a sore throat. Ffs.

its more scratchy than anything but feels typical of either a cold or pms (this used to happen before I was on any hormonal birth control - which I’m now not taking because cancer!) so. The options are.

• panic that I’m going to end up hospitalised because of a cold
• calm down and be reasonable
• call the team in oncology/my gp now to see whether then can do something to help
• wait for today and see how we go
• do nothing and moan about it.

Gah @ememem84 have you checked your temperature? I guess a call to the team would be in line - they’ve drilled into me to contact them with even the oddest thing.

I had The Rage yesterday as our chemo bay was packed. Two sets of people had hacking coughs. One couple (next to me) were masked but only with those thin ones that are fairly useless and with the masks only over their mouths and noses poking over the top and coughing regularly. The couple further down were talking about their “plane flu”, also hacking. Jeez. Me and dh were proper giving it the brow. Fortunately I had my n95 and was by a slightly open window but ffs a chemo ward! I’m so careful in daily life, as are my family and I really don’t want to be picking up anything delay treatment / make me ill whilst I am actually having chemo!

Temp normal 36.6. So