Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

Hello!

Just checking in to report that my hair has started coming out in clumps, so I have contacted my hairdresser to see if she can shave it all off for me. It's bang on time - two weeks after my first chemo. I'd rather have it gone for Christmas Day than be shedding all over the place. Feel a bit weird about it - I knew it was coming and I love a hat so not worried about that - but it still feels odd. I suppose it is just a very visible sign that I actually have cancer.

Sending lots of love to everyone - particularly at this time of year. It feels so surreal that Christmas is happening as usual when we have this massive thing in our lives. Think everyone on this thread is pretty bloody awesome.

Just to say I read about someone (maybe even on mumsnet?!) saying they thought of chemo like a long haul flight: comfy clothes, cosy socks, distracting entertainment - I've never actually been on a long haul flight (and hate flying) but found that comparison quite helpful! A spa day would be a bit of a stretch for me
The self injections you really do get used to. I found it best to schedule them early in the day when I was getting used to them, I didn't like having them hanging over me iyswim, I realised I was quite grumpy until it was done!

@AlbertCampion I hated my thinning hair and felt much better once I'd got my crew cut! I hope it's the same for you too. I'm looking forward to having hair again but it really isn't bothering me at the moment, I got used to my bald look quite quickly! Xx

@Trumpton Good to read your update, Flat and Fabulous is the way to go 😁 (you might remember me as SnowsInWater), I am out the other side of treatment too - apart from another four years of Femara - but unfortunately the ongoing fatigue, lymphodema and peripheral neuropathy in my feet are constant reminders, but I am alive!!!!

Newbie here sneaking in before a new thread is made: hello all Heard today that I've got HER2+ breast cancer requiring chemo then surgery. Found lump on 1st Dec, was offered NHS breast clinic on 16th but went to a private clinic courtesy of DP's insurance so had mammogram & biopsies earlier. Now can't do anything due to festive period, except stew & ruminate!

I'm not hysterically scared or anything, just anxious about chemo mainly and the amount of faffing with appointments etc even though I work as a volunteer so don't have to worry about work, & kids are junior & secondary.

This does seem like a good thread for info/support - most unMumsnetty! Probably won't post much till I find out more about the treatment plan. Not telling anyone until after festive period - unless I need to use it as an excuse to avoid anyone stupidly insisting on meeting up even with the Covid situation.

@backformore I hadn't thought of sickness as morning sickness, that has helped me, thank you. Mind you, I am still frightened of vomiting but had continuous nausea for months when pregnant and survived. Your skating trip with your little one sounds lovely and so nice to feel normal for a while. I too am wondering if once treatment starts I will start to feel more normal again.

@Trumpton I already have my hospital bag mostly ready, just need to add a couple of bits which are to hand. I have a real fear of being carted off to hospital and having to tell DD (who doesn't live with me) over the phone where to find everything.

@Lizdeflores the MN haircut? I know someone who does that and it looks fabulous. I haven't really got enough hair for that but may just take the shears to it when it starts to go. I have a lot of nice scarves so I am ready, I just have to work out how best to tie them to my head.

@AlbertCampion oh so true, how can Christmas be happening while we have cancer? I am finding that most conversations immediately turn to Christmas preparations and the inability to get organic sausagemeat or whatever and it leaves me cold, I feel so flat and miserable about it all. I live alone so can control what television is on and have been avoiding any channels with adverts as I am finding it all a bit much. Really hoping I can snap out of it by Friday.

I had a day and evening in A&E yesterday as I have had a reaction to the compression socks they gave me in hospital. My legs had swollen with a hot itchy rash spreading downwards. I had a telephone appointment with the GP in the morning and told him my legs felt 'tight' and he said not to mess about and go to A&E. I was seen by two doctors who think it is a fungal infection and I have jock itch cream and some antibiotics. The main delay was having to have an ECG as my heart was racing - this seems to be my usual starting point in A&E as I get so panicky . I seem to have one thing after another wrong with me at the moment and haven't even started any treatment. I feel very low about it all, is this normal and do you get used to having a season ticket at the GP and A&E?

Sending love to you all xxx

@HauntedDishcloth welcome to the nicest thread on MN, the one no-one wants to join. Everyone is lovely here. I find the faffing with appointments a bit of a do, I am under several departments and they don't liaise with each other. I wonder why they can't have a sort of Facebook 'homepage' for each patient with a list of medical conditions, drugs and upcoming appointments.

Hi @HauntedDishcloth and welcome.
I was diagnosed back on June 21st with HER2 positive BC and have just finished six rounds of chemotherapy with FEC-T and HP. It is recognised to be Tough but Doable! Come here and ask about side effects and stuff as there are lots of us who have been through it. For me it worked well and my tumour and lymph node have shrunk away.
On Monday 6 months to the day from diagnosis I am (I hope!) having surgery to see whether there is any cancer left. Lumpectomy and Lymph node clearance and home the same day with luck and a drain.
After Christmas the next part of the pentathlon starts but I'm not going to think that far ahead.

@thereisonlyoneofme It is hard to know what to say when things look so bleak for you but all the time there are new drugs coming out that are game changers. Hugs and please use us as a sounding board.

@Trumpton I had my Fuck it bag all ready for the impending sepsis so when I broke my ankle DH just had to grab it for the unexpected A and E trip. A small crumb of comfort!

Dh has found a pub doing takeaway Christmas Dinner so that is us sorted. I've banned visitors for the next few weeks anyway so no change for us due to lockdown. My DD is coming over tomorrow to peer at me distantly on the veranda and swap presents. I can't get much enthusiasm up for Christmas as I will be doing dressings and drains and painkillers instead of Prosecco and partying.
@MollyButton good luck to you too next week. And love to all on the thread xx

@FlatandFabulouslyFestive, I remember you well as Snows- so glad to hear that you are out the other side! Merry Xmas x

@thereisonlyoneofme How frustrating - can you call someone and explain that the mixed up information is very stressful so can someone at least sort that out?

@Hippiechick162 hard hearing that treatment will not be over after all even knowing its for the best.

@MollyButton Hope you get yourself organised before your Xmas op and that Xmas day is as good/tolerable as it can be in the circumstances. At least you might get some peace of mind - if not body.

@backformore Totally agree about the loaded words and I've actually gone the other way - I use the Big C words frequently in order to take the terror and shock out of them. I felt my own resistance at first but now I bandy them about freely (like it or not!).

@Trumpton Oh so the streaming bloody nose is Herceptin - wasn't sure which was the culprit. I've added in nasal spray to the antihistamines - concerned about the associated cough that might develop into something. Must remember to prep the 'fuck it' bag.

@MrsPnut I've heard radio can make you very tired. You sounds very on top of things given the range and quantity of your ailments and treatments.

@Lubballoo spa doesn't work for me but long haul flight is a good one. Distraction and entertainment. I actually work the first half, then read, then music. I take my injections before dinner.

I cut my own hair into a short bob and got lots of compliments. Then dh gave me a buzz cut. Don't think I'll ever go to the hairdressers again.

@HauntedDishcloth quite a few of us her Her2+ chemo then surgery so lost of info. Let us know your treatment plan - probably very similar.

@FizzyOrange I am struggling heroically (in my humble opinion) to sympathise with people's 'ruined' Xmases. This isn't even my worst Xmas by a stretch. Some years ago I nursed my mother at home and she died 2 days after Xmas (then she had to be buried hundreds of miles away). I made a promise to myself then, that I would not relive that experience every Xmas going forward (I'd helped her nurse my father 2 Xmases before that). I hope Dd and Dh have a nice time and I will just hope for the best. I am, frankly, expecting to feel like shit and get comfort knowing I have a counsellor meeting online Xmas Eve to help me get through it.

My blood pressure goes through the roof when I'm in hospital for anything - that's when they realise how anxious I really am!! I'm trying to practice thinking it down - kind of like yoda .

Although I despise the positive thinking (smile of die) dogma - I am quite into the stoics. I haven't really been able to go there until now - I think things do settle down a bit once you are properly into treatment and you can start to take proper stock of your situation. But that approach, to me, is personal rather than public.

@TopOfTheCliff The home straight 'Tough but doable' indeed.

As some have said - it's the small things that often niggle. I'll have my first proper port access tomorrow (as the needle was already in last time) and I'm nervous. Port is still a bit uncomfortable and if the keep me waiting the emla will wear off. I'll have to work on my 'pain is just a bodily sensation, grasshopper' mentality. I'm also anxious to secure my favourite nurse!

@Acinonyx2 I want to be like you with the c-word, I really do. I think it would help my daughter (8) in the longer term, too. I'm just not there yet - still in shock and terrified of everything... :(

Yeah, long haul flight is sounding more like it than spa!

Can you offer any tips on how you did your bob cut? And can you talk me through the buzz cut with your DH? The prospect of cutting my hair is scaring my husband almost as much as my diagnosis! Oh, and giving me the day-after injection... (it's almost worth it to see the look on his face)

Good luck with the port tomorrow. I'm having my first treatment without as there wasn't time to book me for port surgery. I'm actually dreading yet another hospital visit/operation (after biopsy and clip placement - I haven't even had a proper surgery yet!) but everyone seems to think the port is the way to go. The small things are definitely the ones that get on top of me!

@TopOfTheCliff I want to be where you are! Good luck tomorrow. will you follow surgery with any more drugs.radiation?

@FizzyOrange sympathies, and yes to the season ticket! I was all geared up for first chemo on Monday when I got a call Friday afternoon summoning me for a midnight (!!) MRI last night to double check my femur (something odd turned up on the bone scan and I guess docs just decided they wanted another look without telling me). I hate the lack of control and the panic that sets in whenever I see the hospital ID on my phone.

Also share the weird feelings about Christmas. Trying to keep it jolly for the kids (2 and 8) but in a selfish way I'm glad it's a low-key one this year by necessity because I'm obviously struggling to work up the usual enthusiasm. Makes me feel like a real grinch, but it's hard to process other people's stress over gift-wrapping etc. right now. I hope this will be a reminder to me in Christmases to come not to sweat the small stuff and remember what other people are dealing with, especially at this time of year.

@Lizdeflores thank you - that's all really reassuring!

@AlbertCampion I have my first chemo tomorrow, so suspect I'm about two weeks behind you with the hair. I'm trying to tell myself that I don't have great hair, anyway, and it will save me time in the mornings, but I know that it's goign to be a shock still. Need to prepare the kids for it, too.

@HauntedDishcloth welcome! I'm fairly new here, too. Also HER (triple positive b/c) and starting with chemo this week, then surgery, then radiation likely. Everyone here has been so lovely and it's become my "safe space" online - much less scary and depressing than some other forums I've seen.

Can I ask what people with young children are doing re schools and Covid? Obviously not an issue over the holidays (and it's possible that schools will stay closed for an extra two weeks here) - but after that, I'm wondering if I should go to stay with my parents while I'm on chemo, to lower risk of infection from anythign the kids might bring home? The thought breaks my heart a bit, but I don't want to pull them out of their classes = really want to keep things as normal for them as possible. They have amazing teachers and friends, and I don't think DH could cope with work and online school as well as looking after me on bad weeks! Any fresh takes on this would be great. Covid and cancer in the same year - aren't we the lucky ones?

@ I found myself avoiding the word for quite a while at first- almost like I was swearing. What time are you in tomorrow? I'm 12.30 which is a bit late for me.

Put your hair in 2 highish bunches and cut through above the scrunch (you'll need good scissors - I used my big sewing scissors). Then just snip into shape. When it got horribly thin dh used clippers for a buzz cut. Then later I shaved it with my electric leg shaver but not really close as it was a bit tender and I was too timid. I really should though - I now have this annoying short thin fluff.

dd is 15 but I read about a lady who basically isolated from her kids - she gave them 'taco hugs' at bedtime where they wrapped up in a blanket first - apparently the kids loved it!

@backformore my kids are 8 and 10 and for the last few weeks I've been living in the spare room and isolating from them and DH in the house. We spend time together outdoors but once I started getting what felt like every infection going, it seemed like the least worst option. We're going to keep going with it until Xmas Eve when I get home from chemo, spend Christmas together, then we'll start me isolating again when they go back to school. I should have my last chemo on 21st Jan so not too much longer to go (though I'll need to be well for surgery etc too so need to work out what's best then). We didn't start this until i was 3 months into chemo - the first couple of months were fine, then we had a month where I was ill over and over and it was just so stressful not knowing if I'd be well enough for treatment that we started the isolation, it wasn't even just down to covid really. And since then I've stayed well. We're very lucky that we have a spare room and the kids are old enough to sort of understand. With the news about this new covid variant I'm starting to wonder if we'd be best keeping the children off school until I finish chemo, it'd be 2 weeks and 3 days of school that they'd miss, but I really want to try to avoid disrupting things for them if I can, it's bad enough as it is.
Depending what chemo you're having there might be a particular point in each cycle when your immunity is lowest and when isolating/going to your parents might be effective just for a short period each time?

Best of luck tomorrow, @backformore. It is scary but I felt so much better once I'd done my first one. My hair was literally two weeks to the day. I just found that every time I ran my hand through my hair a big clump came out. My hairdresser v kindly came over and gave me a number 2 all over, as a friend who has been through similar advised me not to try to do it myself. DS(8) is a bit fazed by it and doesn't like to see me without a hat, so if you have young DC I'd recommend having scarves or hats to hand. I got a really nice one from a place called Anna Bandana on Facebook, who also do PICC line covers.

On the subject of young DC and school, we've agonised about that as both DS and DH are at the same primary. My nurse advised just stripping off when they come home and washing hands and anti-vaccine thoroughly. I just couldn't take leaving them for the duration of chemo. It was a step too far for me!

Good luck tomorrow - will be thinking of you!

Antibac-ing! I am definitely not antivax. 😳

I should probably add that what really pushed us with the isolation was that in my "ill" month I ended up at A&E multiple times and in hospital for 4 nights, so the chemo really did seem to clobber my immune system and hopefully that won't be your experience! X

Yeah, and obviously with regards to isolation I am very early on, so may well change my perspective as I get further in!

@Acinonyx2 I'm in for 8am but I'm in Canada - so, we're actually going to be going at around the same time, I think! Here for a handhold if you need it (I probably will...)

I'm bringing fresh pineapple to snack on (apparently good for preventing mouth sores?) and sugarfree gum/hard sweets. Earpods and Netflix is the plan. Lots of water beforehand, and coconut water to boost blood count. Man, I just want it to be over now!

Taco hugs sound so cute - my daughter would love that. Reading your take and takes from @Lubballoo and @AlbertCampion make me think maybe we can try with me isolating in the main bedroom for starters (husband can co-sleep with 2yo in his room). I don't want to mess around with risking Covid, and the kids would likely be asymptomatic carriers...but the thought of being physically removed for a long time makes me quite sad (even though my parents are lovely and it would certainly be peaceful!)

Will definitely ask tomorrow if there will be particularly vulnerable points for me.

Thanks for the hair tips. I'm not too bothered about it not being perfect as I'm not going out much anyway (certainly not without woolly hats now, it being winter and Canada!) - it's more a matter of feeling that I'm managing the process, I think...

@Acinonyx2 I am so sorry to hear about your parents, that is very sad. I too try and 'think myself down' whilst I am in hospital but I find it very hard. My pulse was 156 when I got there on Friday and everyone kept asking if I had chest pain . I am hoping things go well tomorrow with your first proper port access and also keeping hopeful for you that you get your favourite nurse. Some nurses are just so nice.

@backformore omg a midniight MRI! I feel my stomach go over when I see the hospital caller ID on my phone. I have got into such a nervous state that I have developed that condition where I think my phone is ringing when it isn't and sometimes check my recent calls in case I have missed a call. I am a nutcase. I am also secretly glad that Christmas is very low key as I feel so flat about it all. You make a good point about remembering this year in Christmases to come and not sweating the small stuff in the future. Good luck for your chemo tomorrow, hope it goes well for you.

@backformore Oooh yes - you're 5 hours behind me so that works. Let's go live from chemo! I doubt you'll feel mouth sores on the day - takes a couple of days or so usually for that kind of thing to kick in. (For me - sore mouth peaks week 2). Allergy aside - I don't get any side effects on the day at all (unless I already have them IYSWIM).

Just popping in to wave at you all, sorry not to have said hello properly to newbies but I do send very good wishes. I have skim read the thread and can see that cancer is being its usual bastard self in so many ways. Crossing fingers for those starting or continuing chemo tomorrow or later this week. I'm expecting to have, and dreading, my second treatment tomorrow, feeling miserable and grumpy.

Hope it goes as well as possible @Bloodybridget and really hope your mouth is starting to feel better x

@Bloodybridget fingers crossed that your day goes as smoothly as possible.

Cancer support thread #77 - newbies welcome www.mumsnet.com/Talk/general_health/4112219-cancer-support-thread-77-newbies-welcome