Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

New thread

@BeaLola I think I'm having more fun than dd 🤣

Prom shoe and jewellery success...for the princely sum of £8 for both! I also talked her into hair gems which she may not use & some shimmery spray 🙈

@SummerCycling me too. I've never had any issues with whatever it is so hopefully nothing major 🤞

That sounds just like my hot flushes @SummerCycling. I'm not on any drugs, it's just after a surgical menopause. I sometimes get a weird electric shock type feeling when they first start as well.

My hospital does call from a specific number (so it wasn't particularly rational that I thought a mobile phone number might be something!), but it's the same number for three large hospitals, so it doesn't help knowing who's phoned. Once I called the CNS to see if it was them, but they were a bit rude to me, basically just saying no, and that was that, no, "is there anything we can do to help you?"

Thanks for all the good wishes for my results, I'm still feeling anxious, but at least at the weekend I know nobody is going to call !

I’ve just enjoyed a slice of blueberry and lemon sponge cake with a cup of tea.
I realise that despite having 2DDs I missed out. DD1 was out in Europe at college for her prom and DD2 went to prepare at the home of one of her besties whose DF was dying of mesothelioma. We all agreed he deserved to have the bevy of lovely teenagers gathering at his house. My DS and his mates borrowed some tandem bikes to ride in to prom.

I’m cursing now. I went out early to help with a sports session and did far too much. My toes are now purple and blistering. Stupid! I shall settle down and watch Putins downfall instead.

@SummerCycling your sweats sound like side effects of Phesgo rather than hormone withdrawal but have you started an oestrogen blocker?

Hope you are all enjoying the sunshine and having a pleasant weekend.
Top

Talking of calls, ahead of my fateful appointment last Friday, I had missed call from the hospital (I do at least have caller id for it though it comes up as a main hospital number so no calling back) but then a couple of days later they called again whilst I was driving my son home from school. I asked him to answer it and ask them to call back in 10 minutes but instead the bloody woman said "Please tell your mum she has an urgent appointment on Friday morning". I am really upset that she thought it was Ok to give my child this information and I was still left dangling as I had no idea what the appointment was for until she called back 2 days later. I really am not a complaining sort, but that is a bit crap, isn't it?

@TwigTheWonderKid yes, I'd say that's pretty bad! I'd expect them to call back if asked to, not pass the info to either of my girls. Even though they both know everything, she wouldn't have known that & it's not someone else's place to tell anyone I have an urgent appointment for anything!

Dress arrived yesterday & fits hurray! I bought 2 different sizes as on line shopping can be a bit hit & miss when it comes to sizing.

She is really happy with it & I had a little tear when she put it on - it looks amazing on her but I am a bit biased! Hair & nails will get done but she is quite pale naturally so is afraid she’ll end up like a satsuma if we go at the fake tan 🤣

we go away for a few days before next week & I have my first yearly mammogram when we get back! I am deferring worrying about that until it happens but fingers crossed it will be ok 👍

Take care everyone

With DC who are still primary age, I'm loving all the prom talk 😁

@Onecattwocats I'm glad it fits! I cried when dd put hers on to show me, and my dad arrived just as she did & he had a tear too. Thursday will be an emotional one I think.

I'm surprised at how well the trial run of dd's tan went tbh; there were a couple of patches & definitely needs to be further under her eyes but it looks alright. Well, I say that but she wore a cropped top yesterday & we hadn't done her stomach because you can't see it in her dress 🤣 Didn't realise until we were in Primark...oops!

In other news...stomach is definitely shrinking! It's just over 28.5" this morning, from 30" which it was hovering at last week 🥳 I'm so pleased about this! Hopefully it won't fill up again in a hurry 🤞

I’ve got scanxiety today - I’ve not even got the date for it yet but I’m already not coping!
It doesn’t help that it’s too hot to leave the house with my photosensitive skin. I’m really struggling today.

From one scanxiety sufferer to another @LemonDrizzle10 I'm coping today because I know I won't be called, but dreading the start of the week again. I think I'm going to plan not to work in the future so I'm not scared of being called when I'm out doing something.

I wonder if medical professionals have any idea about how much anxiety is caused by not knowing when that call is going to come?

@LemonDrizzle10 I do too. Waiting for the results of a scan and of lymphnode biopsy and final result of how big the tumor actually was when they removed it (felt like it had grown while waiting for surgery). Scary.

It’s interesting to hear about other people’s experiences with fatigue. I measure mine in spoons too. Last night I went out for the first time in 3 years. Had a fabulous time in Liverpool but I’m exhausted today. I felt alive for the first time in ages. I finished my treatments 10 months ago so I can only presume my tiredness is post covid. I had it very badly and my jejunum was attacked as it was swollen and almost occluded. Then, a year later I ended up in hospital with Covid again.
Covid has a lot to answer for. I was diagnosed a year later than I should have been due to the cessation of mammograms. I think everyone has felt some impact by the covid years.

@LemonDrizzle10 and @SierraSapphire, I'll join you both with the scanxiety. I have mine booked for a couple of weeks time and it's permanently on my mind. I don't seem to be able to distract myself very well when I'm like this so it's just a case of waiting. Keeping busy doesn't really work either. What I'd really like is a big glass of wine but can't drink. I Like you Lemon, I also have sun sensitivity with my drugs so can't be outside. Even walking round to the corner shop involves plastering my arms with sunblock and wearing an enormous hat. I also can't stop moaning and am getting on my own nerves today.

I had some improvement from the relentless exhaustion and illness today. Ironically I had a terrible night, up every 1-2 hrs with diarrhoea. Then I managed to sleep from 7-10.15 am and actually felt ok when I woke up. DH and I went for a walk in the sunshine and I ate a proper meal for the first time in almost 2 weeks. It was a very small proper meal but consisted of something other than white carbs so that was a win. We will see what the night has in store.

@lucysmam great news on the stomach front!

@Onecattwocats so glad the dress fits! I love all the formal stuff. Hate getting dressed up myself but it’s fun when DD does it.

@LemonDrizzle10 I’m sorry you have scanxiety. I’m hesitant to talk about different health systems because I don’t have firsthand experience and it’s not always helpful. But I do think it’s an area the NHS could improve on. I have a friend with stage 4 breast cancer in the UK and she waited more than 6 weeks for the results of her scans to see if chemo was working. And she had to chase the dr for an appointment in the end!

Sad to hear there’s a lot of us in the anxiety club - solidarity.
It's 33 degrees here today - sitting inside with the curtains closed makes me grumpy!
This too shall pass.
2023 is not the best year. I’m trying to focus on positive events. My friend has been successful at being suitable for adopting a child - we will have a new person in our gang soon: it will be wonderful.

@LemonDrizzle10 Only 30 degrees here. I'm so pleased to hear about your friend, that's lovely news.

This is how I've been coping with the heat. It takes up our entire, tiny garden but it's heavenly to float on the lilo and stare up at the cloudless sky and pretend I am somewhere more exotic! Until the teens jump in and shatter the peace...

@TwigTheWonderKid that looks lovely
I’ve not got our paddling pool out: reckon the pup would have her teeth in it and burst it in 20 seconds

@TwigTheWonderKid that looks fab! I've been enjoying my new garden furniture & sitting out under the parasol. Our paddling pool has a hole somewhere & I can't find it to fix it, so I gave up & put it back in the pantry.

That looks great Twig I love anything water related.

I am finally on the year's waitlist for diep (first op Dec 21) but now am starting to wonder should I do an implant instead. I love swimming and already do not like being numb under right armpit and learnt with diep you get a tight tummy, numb 3 inches round belly button, numb second breast and a big hip to hip scar and some people seem to have bloating and dog ears. And there seems to be a second op after the first. I hate having nothing one side though. Plus DD has questioned whether I will manage the operation as its 12 hours long implying I might die in it. And she says I should do implant as its a 2 hour operation. I was initially off implants as I thought they need changing every 10 years and not sure the NHS will do that in 10 years. I'm 50 as well so needs to last though maybe when I am 70 I won't care. I just want to look like I used to and not have my body remind me of cancer each time I look at it, that's why I hate the hair I think too. Though the hair is finally getting better. Still like an 80s aerobics instructor but growing and getting less curly in new hair so less wild.

Have been getting some work done on house and got flooring done in living room last week. 3 meetings re DS today I had better get to. Went swimming at weekend, do about 3 times a week.

@Silkierabbit I'm about to have a mastectomy with immediate reconstruction (Weds in fact!) with an implant. Having an implant was not my first choice but It was either that or flat and as I didn't want flat, I wanted to keep my boob skin where possible. I will be opting for a reconstruction using tummy tissue with an alteration to the other boob to match later on - I have 17kg to lose first! My concern with the implant is that they only offer up to a certain size and I am currently an F so I will def be lopsided . I'm hoping that with my final op I'll be a C or D cup.

@Silkierabbit

Hi Silkierabbit I’ve just been having the same conversations with my surgeon. Although my situation is slightly different as I had blood clots a couple of months ago which they are monitoring.

I’ve basically decided that I want to make this as simple as possible. The surgeon actually said the implants last twenty or thirty years and they are super safe nowadays.

I was told that the second surgery where they take from your tummy would last about eight hours.

So after weighing it up I think I’m going to go for the one and done approach although they have said that you can revisit it later if you wish.

Is your surgery bilateral too? What you’ve said about issues with the diep haven’t been flagged to me but just the thought of having one surgery and then having to have another hanging over me has put me off a bit. Also the having expanders in, I don’t know what that would look or feel like in the gap in between the two surgeries?

Anyone out there with experience of either?

the hair is finally getting better. Still like an 80s aerobics instructor

Ha ha, that pretty much describes the shorter of my two tier hairstyle (the other is the straight bob preserved though cold capping).

I don't feel as anxious as I thought I might today about being called for my scan results. I just left home to go to a meeting and diverted my mobile to my home phone so that I didn't get a call, but something's gone wrong with my car and I had to come home again. It's 10 years old and I was thinking about getting another one last year, but I haven't because I'm not earning much at the moment and I don't want to use a big chunk of my savings on a new car. It's becoming uneconomical to keep it though possibly anyway, and is another stressor and massively inconvenient. It may be something simple, the garage are going to take a quick look at it on Wednesday, although they can't sort it out until next Monday. At least I can get the train or the bus to places. Honestly, it's difficult not to feel sorry for myself!

@Scandimandy

Its interesting that you are deliberately doing it that way. I also have weight to lose which was one of the reasons I was considering it. So they didn’t suggest these expanders (I’m not sure what they look like) but straight to implants.

Good luck for Wednesday. I’m hoping for a date next month and will know tomorrow when I meet the blood Dr. Fingers crossed!