Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

@Bloodybridget @Skap are you both ok? Sorry I, not being rude, I, not with it at all today. My good luck run has certainly ran out! I got an wig on Monday so I'll start wearing it tomorrow now I've shaved the head. Hope you are both ok chat soon xx

@concernedgirly well I guess it's reassuring if the surgeon doesn't seem worried.
@Chesneyhawkes1 so kind of good news, but you've got a lot of treatment to get through. Do you have good support IRL?
@redspook hurrah! I'm so pleased for you. Piss off and enjoy yourself now
@Nonotmenori I can vouch for the fact that having a shaved head saves a lot of time and trouble faffing about with hair! And maybe you have made the pleasing discovery that you have a nice shaped head?
I am fine - funnily enough the pandemic and lockdown has pretty much put thoughts of recurrence out of my head! Really not enjoying the restrictions on daily life. But DP and I have it very easy compared with most.

Hi everyone, hope you're all coping with the craziness! Happy Easter to you all.
Having spent the whole day rearranging furniture and clearing out cupboards...well directing my dh with what to do. Feel better now, a good spring clean always clears my head. As soon as the lock down is lifted I'm hiring a skip and ditching loads (that can't be passed on to charity, family or repurposed).
I seem to have found a new way of looking at things and the f$%k it bucket is highly used lol ...what's the worse that could happen? 😄
Sorry, I have just read through loads and would normally be more personal but I can't keep everyone in order. So good luck to everyone who needs it, hope things get easier for you xx

Will come back again and write properly as been so many posts again. Just wanted to quickly reply to @Thymeout I think who asked about shielding letters??

I got my text messages the week they said they would be sending letters out. They were daily for a while but have now stopped. And have had three letter through. 1 from nhs 1 from royal marsden and 1 from someone else who I can’t remember and a phone call from gp.
I find them quite depressing stay three steps away from everyone in your house, sleep on different bed if possible, diffeeent bathroom and prepare food seperate if possible. Since it isn’t (apart from sleeping in a different bed which I don’t want to do) my husband and toddler are also staying home. We get Ocado delivery slots which are very hard to come by and I have a very good friend who lives 10 minutes away to who brings milk for the 1.5 year old when we run out in between shops.

I have signed up to the government website but haven’t heard from any other supermarkets, do I need to contact them?

I am so desperate to get out for a walk but haven’t as I just don’t trust other people to keep their distance.

08009177359 Is the phone number I rang to get put onto TESCO priority list . They just asked a few questions and said it could take up to 24 hours for it to show .
They are also releasing delivery slots through the day not just at midnight . @Squiffy01

@redspook that's fantastic news and I will do. Thank you.

@Bloodybridget I do have my husband, friends and family. But due to the restrictions I can only see my husband. My Mum is determined she should move in with us and look after me 😂 bless her. At 41 she still thinks I'm her little girl.

Luckily my work have been fantastic. I'm off on full pay for as long as it takes. My husband also works for the same company and they've said they won't have me driving myself every day for the 2 hour round trip for treatment and that they will accommodate him so he can take me. I was happy to go alone, so that's exceptionally good of them.

So many people in here. And I wish you all the very best with treatment and everything that comes with it. Xx

@Nonotmenori I felt awful yesterday - like I was coming down with the flu. I just ached from my deepest insides and out with a massive headache. I spent the morning in bed, followed by a long soak in the bath. Today I feel much better. I managed 7 hours of sleep last night (though not all at once) - still a little achy but nowhere near as bad.

Today I'm also thinking about when to shave my head. Hair is starting to shed - so I know I need to deal with it and would rather do it sooner.

Still no sign of an online supermarket slot - at this rate I'll finish all my chemo cycles before I can get food delivered.

@InOtterNews and to those who have had The Letter you can go onto this website
If you tick the box that says you need help getting food they will send you a food box.
I did this by mistake on a Thursday and to my embarrassment the following Monday a huge box of food arrived. By mistake because I misunderstood the wording, I thought I needed to tick yes if I wanted to be on the priority list for supermarket shopping NOT that I needed a free food box.
I was moved to tears by it though. I am in awe that they have set up this system to shield vulnerable people. Obviously it has glitches but I thought it was incredible.
(I did go straight back onto the website to cancel future boxes).
The food was not what you would choose but nevertheless would keep you from going hungry for a week.

@Nonotmenori and @InOtterNews
I finished chemo on 31st December and my hair is now only just long enough for me to go out without hat or wig - not that I'm going anywhere!
I had two decent wigs which looked great but I didn't like wearing them. In the end I wore them only for socialising, which I did very little of.
I preferred hats and bought lots. All kinds from turbans to tubes, velvet ones, stretchy hats with scarves attached. Some dirt cheap and some expensive. A couple of Amoeba hats I won on Ellie's Friends. I recently washed them all and put them away. If either of you or any other chemo posters would like some hats please PM me. I'm happy to give them away.

Phone call from GP this morning . UTI test shows I need different antibiotic From Amoxicillin.
The replacement one is the same one I had on 20th March .
So that’s 3 lots of antibiotics in a month . DH got me probiotics at same time . Well done that man !
Ah well . Nothing sinister ( thank you 2am anxieties ) just women’s dodgy plumbing !

@InOtterNews it's horrible isn't it! My lower backs starting to feel like it's being broken and my leg pain is like growing pains except I'm not growing 😭 still four down 4 to go! I hope you're better.
Re online delivery, have you signed up to the gov website? I've still not had a letter or text, but they passed me to Tesco and Sainsbury's and I've managed to get a delivery due today thankfully. The following wholesalers are delivering brakes, bidfood and JJ's. Might be worth trying there to tie you over. Did you manage the shave? I did and it feels so weird. I've started wearing my wig now.

@Skap Thank you I've ordered a couple of scarves on Amazon and they should arrive on Friday. Hopefully I can learn to tie them up ok! X

@Nonotmenori I think I was optimistic in thinking I was starting to feel better. The fatigue is extreme at the moment. Yesterday just getting dressed was enough to send me lying down for most of the day - too tired to sleep or read/watch TV - I just lay there feeling awful.

I haven't shaved my hair off yet - I'm keeping an eye on how much I'm shedding but I can't quite bring myself to make the step - what if they're wrong and I won't lose it, is my main thought

@InOtterNews Fingers crossed for you. I was in such a bad way last night from these injections. I've three more to go, but please tell me this is it and they won't send me home after rounds 5&6 armed with more? I don't think I can take much more. It's pure torture.

I hate having no hair. Im having to sleep in a bandana otherwise it just annoys me having a bald head.

I also seem to be a right grumpy miserable bitch lately. Is that a side effect of chemo or just me being a cow? Answers on a postcard.

I got a care package yesterday which was sent to my old address. Not sure how that's happened as when I applied I gave the new address and spoke to the local council asking not to deliver there.

Still new place is coming along. The oven broke on the weekend, new one was fitted in yesterday then the hot water went in the kitchen and now I've got a leak where the taps are. But on a positive note, I bought myself some ugg slider slippers and I've bought two chocolate hampers for two amazing people who have helped me no end so I'm feeling good and grateful I'm in my own little place with no flatmates anymore. Especially having my own bathroom chemo is sending me there a lot of the time!

Hope everyone is well. Sending good vibes to everyone, but especially @Bloodybridget @daisypond @Trumpton xx

Hi,
Glad the new place is coming along @Nonotmenori How you finding it?

Think I'm going to be taking the plunge and removing my hair soon. The pic was this mornings loss. To be honest I'm not that worried about it anymore, feel like in the grand scheme of shitiness that is cancer and it's treatment it's not too bad. I think I'll rock some cool hats/wraps, any suggestions on the best place to get them?

@Trumpton have you heard anything yet from RH? It's very strange at the Christie at the moment with all this coronavirus. Temp checked 3 times yesterday before even reaching appointment area!

@InOtterNews hope it feels better for you soon!

@Skap what's an amoeba hat?

Best wishes and good stuff coming at everyone else and sorry for lurking and not posting anything supportive in a while, given my head a pretty firm wobble and told myself to suck it up and act like a woman lol! Take care guys xxx

Hey @Hippiechick162 how are you getting on? Yeah I'm delighted with the place. Just waiting for my untold amount of online deliveries to turn up lol

I ordered two wrap scarves from Amazon they're supposed to turn up tomorrow so will shall see what they're like. I've attached a photo .

I'm using baseball caps over the banana I have it's only a blue 90's style one, but it helps me sleep. If you're going to shave make sure you order things in as soon as you can as everything is taking ages to arrive. Better to have it ti hand than be waiting like me. I'm looking like a man in a gang or so my brother told me xx

@Hippiechick162 I got a few things from this site: www.headscarvesbyciara.co.uk/, looks like she’s still operating as normal through the lockdown. She does a range of hats, hats with scarves, wigs and combinations thereof. Everything I got was really nice quality.

I finished chemo over a month ago and am only just starting to see hair coming back, so I’m definitely getting the use out of my headwear collection!

@Hippiechick162 I meant Amoena!
They do mastectomey bras and swimwear as well. Ellie's friends is a charity linked to Maggies. Lots of free prize draws and I won two Amoena hats this one and this one.
These are some of my favourite hats. I decided I would treat myself to as many as I wanted. I found some that looked lovely didn't suit me.
I also felt that hair loss was the least of my worries but to be honest you may be wearing them for a good six months. My chemo ended on 31st December and I am only just comfortable going out hatless. My hair is about 2cm long but weird.

@Hippiechick162 I meant Amoena!
They do mastectomey bras and swimwear as well. Ellie's friends is a charity linked to Maggies. Lots of free prize draws and I won two Amoena hats this one and this one.
These are some of my favourite hats. I decided I would treat myself to as many as I wanted. I found some that looked lovely didn't suit me.
I also felt that hair loss was the least of my worries but to be honest you may be wearing them for a good six months. My chemo ended on 31st December and I am only just comfortable going out hatless. My hair is about 2cm long but weird.

You guys are so brilliant! Thank you. I have just signed up to Ellie's friends and I am going to look at the ciara website. I have ordered myself a nice head scarf off etsy. Take care everyone x

Has the photo showed up?

Yay @Hippiechick162 it turned up today it's really nice on to my surprise!

@Hippiechick162

No news from RH . My boob with skin expander is quite sore and very swollen under armpit . Might ring bnc at Manchester as the ones here are not familiar with the skin expander .
Due back at clinic next Friday for Herceptin .

Hi @trumpton mine was the same and turned out that the bra had a pocket for knitted knockers and the pocket was digging and causing the swelling! Here's hoping it's something simple like that.

@Nonotmenori that looks really nice.

Thanks @Skap they look lovely 😍

Went for my Herceptin on Tuesday. I was due to have it for a year - 17 doses but they told me my oncologist was stopping it after 9 and as it was my 9th one I have finished all active treatment. The original drug trials were for a year so that became the NICE guideline. However another recent trial has shown that 9 doses over six months achieved the same outcomes. It was being introduced for new patients and so was on the cards anyway. I would have felt desperately upset if my treatment had been compromised because of CV but I don't think it has.

Oooh @Skap . I started Herceptin in December , they might finish mine in June then .
Won’t be sorry to lose the drippy bloody nose !

@Hippiechick162 I took the pads out of the bras straight away but have just bought 4 really comfy bras from M&S as the style of the original ones I bought were a bit hefty and the second style a bit tight around the ribs . So I will give these new ones a go .

In other news .... I got a Tesco slot !