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

@Thymeout oh why no showers?? That I’m not going to like!
I have popped a few maternity leggings and skirt in my bag. They aren’t as roomy as they were before I started chemo and then lockdown
Would have been nice to get some lounge wear for hospital but didn’t have a lot of notice.

@Squiffy01 such a shame Primark and Matalan are closed. They do good lounge wear.

Have you looked at amazon. They do some nice stuff too. I've bought a load of tracksuit bottoms to lounge in plus I can keep them on for radio, cold in there 😊 also with the lockdown snacking my skinny jeans have got a little skinnier 😬

Hello everyone, I've nothing to say really, been absent dwaling with physical impact of chemo etc. My hair is gone now and that's OK because I'm still here. Radio starts next month. All tattooed up ready. Hope everyone is holding up ok.

@Hippiechick162
I no longer have a crew cut , it’s long enough to lie flat ! Also have baby eyelashes and eyebrows .
Still uncomfortable with skin expander , hospital here are reluctant to expand it at all as it is classed as invasive . But I don’t think that is why it is so sore . I was getting stabbing pains in it yesterday . I think I will ring either bcn here or maybe at Wythenshaw.

Aww @Trumpton that sounds rotten! The BCN at Wythenshawe are brilliant, I can't speak highly enough of them. Stay safe in these crazy times everyone x

Ah . I just had phone call from BNC here who has spoken to Wythenshawe and now they are happy to have me in to start inflating insert . That should also make it more secure and comfy within boob .
The shooting pains are , as I thought , just the nerves re-knitting .
I feel a lot happier .

Hey @Squiffy01 how's everything going? Hope you're ok and little one is good too. Hope you're right on the weight loss as I can't get any bigger I'll end up bursting

I hate these filgrastim injections. I'm on day 4 today so only another 4 days until I get a few days break before it starts up again. Keep seeing people on the BC group who have finished their treatment and I'm happy for them, but pissed I'm only half way through chemo and then I've rads to get through. Sleep is rubbish didn't sleep at all last night it's so hot. I've a shaving rash on my head 3 weeks after shaving it all off. Can't stop scratching it either. Really miss my mum, dad and my daughter, but thank good for FaceTime. Hope everyone is holding up ok? Xx

Just popping in to say hello - feel bad that I haven't been here for ages, have been thinking of you all, but struggling with lockdown depression.
@Squiffy01 your surgery was yesterday? Hope it went fine and that you are being well looked after.
@Nonotmenori it's a good feeling being half way through chemo! Congrats!
@Trumpton sorry you have been poorly but seems like you're on the mend now. V good news re pathology!
@barberousbarbara I read a while ago that you'd had a total response to chemo, and you've had the mastectomy now, is that right? Hope you are making a good recovery.
@citybumpkin sorry you have pain with the cording - you are having a tough time but you will get through!
@Hippiechick162 how are you feeling, going through chemo? @Chesneyhawkes1 have you started chemo/rads now?
@InOtterNews do you have a date for the start of chemo? Apols if you already said. How are you liking your shaved head?
@peaceanddove you had good news a while ago that you don't have to have as many radio sessions, right? How are you doing now?
Greetings to newbies inc @Megjobethamy and @CrymbleCrumble. Sorry you have to be here, but hope the mutual support and info sharing will help you through.
Also thinking of and sending good wishes to @daisypond, @BitOfFun, @Zorgothslugofdoom and @SnowsInWater.
May we all be able to enjoy better times one day!

@Bloodybridget Yes, my chemo stopped abruptly following a total response. I had my mastectomy and node clearance last week. Hopefully I'll get my biopsy results when I see the surgeon next week. Fingers crossed it's good news. Sorry to hear you're struggling with lockdown depression. Hopefully life will ease up soon.

@Nonotmenori I remember being fed up of being in the middle of chemo while others were finishing. The good news is that you will be at the end soon.

I hope everyone is doing well. I'm recovering from the mastectomy and node clearance. For once I'm taking the advice of the doctors and resting, and I'm actually enjoying it. I think this episode has made me realise I need to slow down and not feel like I need to be on the go all the time, which is a postive.

Hi @Bloodybridget, it's strange. I'm not sure how I'd feel if I was having all infusions. I had 2 and then was swapped to tablet form because of the coronavirus. So I have another 5 days left, then radiotherapy and another month of tablets after that. It's a strange set up but oncologist wants to minimise risk of being at the hospital. As it is i have my temperature taken 3 times at each visit, there are markers on the ground (like chevrons on the motorway) and arrows for direction to walk on each side of the corridor to ensure no one comes too close to each other. I'm just very achy, tired and nauseous but itching to get this all over with. How are you doing?

@Bloodybridget I hope you feel better soon. Lock down feels like it's going on forever.

I started Monday. I've had 3 radio and one chemo so far. Today I felt tired for the first time. Got back from hospital, walked the dogs and then fell asleep all afternoon. Also not much appetite today. But after the biscuits I scoffed in chemo yesterday, that may not be a bad thing! They keep on bringing them - I keep on eating them.

@Squiffy01 I hope your surgery went well.

Also I hope everyone else is doing as well as can be expected. So many people and stories to keep up with.

I do read them all and everyone is going through so much and dealing with situations far worse and harder than mine. I have my fingers crossed for all of you.

@Chesneyhawkes1 please don't ever feel you need to apologise here for having a moan when "other people are going through worse" - for me one of the very good things about this thread is that we can all be honest about how we're feeling, we don't have to minimise or justify anything. I could say exactly the same, having finished treatment, feeling very well physically etc., but I think no-one will judge me for saying I'm pretty miserable, and it doesn't stop me from sympathising with others or recognising that they have more to cope with.

Hi everyone.. Good to see the updates.. I’m pretty new here. Had lumpectomy and am getting radiotherapy. Have had initial scan/ tattoos. Thought I was eligible for accelerated radiotherapy but due to small seroma/ pocket of fluid under my arm I will have 3 weeks radiation instead as he didn’t want to cause any further problems in the future such as lymphodema. Got prescription today for Letrazole. I have got it filled but reading the side effects is a little daunting.. they seem quite severe and I am feeling very well! How do any of you feel taking this medication ?? Also got calcichew to help my bones Any advice or observations welcome

Hello everyone. I've been a lurker for a while and am always amazed by the support offered in this group. I have availed of it in the past. Need some hand holding again. Have had some bowel problems in past few months. Put it down to endometriosis which I was diagnosed with following investigations for ovarian problems. Then bowel became explosive at times with some blood evident. Bright red so again felt this might be piles. Feel pain/discomfort on upper left abdomen lower back pretty constantly Sometimes hard to differentiate if it is pain in abdomen or back. GP visit sent me to Gynae given my history. Ultrasound showed possible cyst and fibroid. Review 6 months. Regarding bowel couldn't get stool sample test due to Covid so sent last week for abdominal ct scan. Just got call yesterday from consultant secretary saying consultant wanted to see me next Tuesday for colonoscopy. Told me to bring family member. No other information given other than he has scheduled 45 mins prior to appt to speak to me. No prep instructions for this procedure given. My head is spinning. Asked to speak to consultant who I've never met but told that due to Covid he is not in office:hospital very often. Sitting now in limbo fearing the worst. Why would they tell me to being family member of not to break bad news. What to expect of colonoscopy and why not prep. I would be so grateful for any advice and sorry for long winded post. L

Please don’t necessarily read anything bad about bringing a family member .
I was told to bring one but it was because they thought they might have to sedate me.
I explained I had no one I could ask and had the procedure without sedation .
The no prep probably means they will give you an enema on ward . I had that twice .

One tip ... take pads or at the least a hand towel with you as you ,ahem, will leak afterwards . And it’s handy to pop in your knickers .

Good luck , come back and tell us ( if you want )
I had a lot of cameras from all directions and in the end it was a hiatus hernia at the top and a shattered anal sphincter at the bottom . All managed now .

I'm almost done with my first week. I'm looking forward to not doing the 2 hour round trip for 2 days.

Managed a 5km run in the rain last night. Felt good to do something.

My bladder is sore. I guess that's the radiotherapy to it every day. It just feels a little irritated. Been drinking lots of water and sugar free cranberry juice. Hopefully 2 days off will help it settle.

Just got my bloods back on my little app thing. White blood cell count has doubled. Which is weird as I thought it dropped. Will ask when I go in today.

@gillmoregirl please try not to worry. It may be just to have someone to help you drive home etc.

@Trumpton Thank you so much for advice. Never even thought about possibility of enema. The phone call caught me off guard and very little information was given to me. I will bring pads. @Chesneyhawkes1 Thank you for your reply. I hope that's all it is but can't shake this niggle. I will let you know either way as I really appreciate advice. I haven't spoke to my family about this. Only hubby knows and I don't want to let him think I'm worried or let my teenager overhear. Thank you. I will keep you all in my thoughts. 💐

Greetings all.

I'm sat here at the hospital waiting for meds so I can go home. I've been here since Sunday and started my cycle of Cytarabine on Tuesday (I had to come in early for covid swabbing). What I can say...it was fucking awful - never had I felt so poorly (sickness, migraine style headache, shivers, high temperature). Cytarabine is given over 4 x 3 hour infusions (7am/7pm) with 30 mins so I'm exhausted. I was due to go home yesterday but these pesky side effects just got worse (and I couldn't hide them).

My hair is pretty much gone now, eyebrows are also making a run for it

@InOtterNews
Gentle hugs . Hope you get home soon and start to feel a bit better .

Hello to all who are struggling and suffering! This thing is just bloody relentless. First AC chemo done yesterday. It took two nurses three attempts to find a vein (the second nurse got one straight away). I will be asking for her again or a dreaded port. Cold capping done. Not as cold as I expected. I had to keep asking if it was working! I doubt it will allow me to keep my hair but I have to try it. Scarves bought and a wig on order.

Side effects wise: felt lightheaded and nauseous yesterday afternoon. Slept reasonably well. Woke up this morning with light headache and felt flushed. Managed two meals and a long walk plus the entertaining of a 1 year old. Had my filgrastim injection (another bruised mark on my body). So will see what other side effects appear.

In boob/shoulder news: much less pain and more movement but now have a bruise along the lymph cord under boob. Great. Texted my lovely physio and she said its normal - broken blood vessel - we were a bit over zealous in trying to sort out the cord.

So number 1 of 16 chemo done. A long way to go yet!

@barberousbarbara How are you doing?

Hi @citybumpkin, glad to hear your first chemo went well. Definitely inquire about a port. I had a PICC installed towards the end (expecting to need it for my chemo which was cancelled) and I wish I'd ask for it sooner. Everything, including a blood transfusion and IV antibiotics, went through it.

I'm doing ok. I'm 10 days post surgery. My drain came out day 6 and I'm now trying to do my physio to get the movement back and prevent cording. I see my surgeon on Monday but my biopsy results might not be ready by then.

@gillmoregirl I hope everything goes ok for you.

@InOtterNews I hope you're feeling better soon.

I hope things are going well for everyone else.

@barberousbarbara Thank you for your kind wishes. I'm sorry I don't know your story as just jumped back into this thread. Hadn't been on since Leslie left. At quick recap sorry to see that TwitterQueen and purple unicorns are no longer here. They were of such support when I was undergoing previous investigations of ovary etc. This group is amazing. When others are going through their own personal hell they take time to reassure those of us with no definites but loads of worries. And then again, if needed, to share advice experience and support. I'm going to stop borrowing trouble tonight and pour myself a large glass of wine and watch something funny. Love and respect to you all. 🌈

@barberousbarbara Yes, do those exercises. Cording is torture! If I hadn't got a seroma I would have exercised more!

Glad you're doing ok

Hi all, I hope you don’t mind me intruding.

I’m 31 (32 in July) with twin DC’s. Three weeks ago I found a lump in my left breast, just under the areola. Thankfully my GP was able to see me same day and referred me to the breast clinic after I noted that there was discharge coming from the affected nipple, that the lump hadn’t shifted after my period (she mentioned that lumps are prone to form and dissipate during the menstrual cycle). My appetite has been shot for most of the last year but I wasn’t sure if it was down to grief, having lost my third DC due to stillbirth last April. As my appetite has evaporated my weight loss was ignored by previous GP and he only saw it as a positive as I had been quite heavy prior ().

I’m still awaiting my appointment at the breast clinic, since the (new) GP saw me I’ve also noticed I’m sweating from both armpits a significant amount more than usual, I also have swelling/aching under both.

I’m tired no matter how much sleep I do or don’t get, my head seems to be in a constant fog and this morning I saw that my nipple has started to invert (it looked like a soufflé sunk in the middle). I don’t know whether it is cancerous or not but I can’t help feeling that it’s not looking good. One of my aunts died of triple negative breast cancer at age 46. I’m quite scared and I cannot let on at home because my DH is recovering from Pneumonia and a large Pleural Effusion that saw him hospitalised for several weeks (on separate occasions) from last December until February this year, my DTwins have finally seen things returning to normal at home.

I just needed somewhere to put this I suppose and I hope you don’t mind. I feel like I’m perceived as handling it well so far, but really I just feel lost

I’ve seen this thread a few times and been so amazed by those who post and support each other here, so whilst I haven’t received any diagnosis yet I was hoping you wouldn’t mind me asking for a hand hold.