Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

Hi all,

I'm still loitering, and becoming more and more afraid as they days tick past, before the mastectomy happens.

Could I ask if there is anything any of you recommend for after the op, please?

My relative had to have three sports bras, a V shaped pillow, and some other things, but mine seems very casual: get me in, lop it off, home the same day, with no recommendations.

I feel like I need a bit more fuss!

Noy only that, but I'll need time to order anything I need.

My op isn't until 12.45, and they're going to send me home the next day.

Hello there @CatonMat it’s an anxious time so I hope you’re able to keep busy. Fwiw when I had my ops I made a point of telling myself afterwards that even though I had been anxious beforehand, I was in very little discomfort and could do it again (although obviously would prefer not to). My dh came with me each time and I put on brave face as I left him in the corridor, told him I loved him and then gave him the family phrase “strength and honour” (from gladiator) which I think helped us both. They will keep you busy and moving through once you go to have the prep chat with the anaesthetist /surgeon and you’re quickly asleep. I found it very helpful to rehearse steady / square breathing and to visualise something lovely (for me this was the feel of my hand on my dog’s head as we looked at the sea). This helped me if the anxiety came up again and somehow this was where I thought I was when I came round from the anaesthetic (I had visualised it going to sleep).

Not sure if you’re home same day or next but pack an overnight bag if you’re scheduled for home next day just in case. If you’re in, an eye mask as the wards are bright and ear plugs are helpful. Various moisturisers good as wards can be warm and drying. You may have a cannula in your hand whilst you’re in, so go for easy access bags.
You will probably be given your phone once you’ve come round and it’s good to contact close ones to let them know you’re on the other side. Do pre warn them it will be longer than they think due to time for anaesthetic and then you waking up fully enough to be trusted with a phone!!

Have a phone charger battery, long cable if you need to plug phone in, earphones. They’ll give you drinks and snacks. If staying in you may want some. I asked dh to bring me a sandwich when I was in overnight as the meal options weren’t brilliant.

I had a reconstruction with my mastectomy and had a drain in for 12 days. This led to the occasional leak so a few changes of pyjamas helped. Having something loose and button up was good as I wasn’t trying to get anything over my head. Front loading soft bras also were good. There are plenty on Amazon. Extra pillows essential. I still use these as my implant continues to settle and I have a picc line for chemo in the other arm.

if in hospital take a pair of slip on slippers, towel, dressing gown. I took hand gel too.
Water bottle also useful for hospital and at home by the bed. Keep well hydrated to wash the anaesthetic through.

At home I set up an Alexa in my bedroom, with a smart bulb in the bedside light. This cut out any reaching to switch things on and the light is dimmable to a low level. Dh slept nearby to start with (one of our lads was at uni and has moved out so we have a spare room). I took up a lot of the bed to start with as I was propped up with pillows initially. I needed a little help for sitting up during the night but did have a frozen shoulder on the other side so was dually affected!

I’m sure I’ve forgotten loads.

The time will come, you’ll have a little sleep and when you wake up you’ll be on the way to recovery.

Hi @CatonMat, everything that @dancingwhilstfacingthemusic says is great advice.

I had three post surgery bras which were lovely and soft, and breathable as I got a bit hot with the dressings. I also found some wipes useful for underarm and general area cleaning as I was quite cautious when it came to showers/washing. Second the use of lots of pillows of varying sizes, it took me forever to settle in bed and get it right but a small pillow and a V pillow were invaluable.

Clothing for when you are discharged, and shortly afterwards needs careful consideration - easy to put on loose long sleeve button up shirts, cardigans, and rather than a coat when I went outside I used a wrap.

Good luck, it'll be over before you know and although it's a long process, be patient and don't rush yourself. It took me longer than I expected to feel able to do more than just sit about, I was expecting 3 or 4 days and it was nearer 10 - although I had a lumpectomy rather than a mastectomy.

Hi all
Totally agree with the advice on the mastectomy. I was more-tired-than-usual for quite a while afterwards, but did not need many things bought in preparation. I did buy a dressing gown for the hospital stay as recommended in the info I got, but I wish I hadn't as a hardly wore it. If you are staying in - I found the tea trolley coming round regularly very cheering, and I quite enjoyed the food!

On another note, I have just had my first EC chemo. It went in on Tuesday. Tuesday evening/night was really quite bad, but gradually over yesterday I began to feel okay-ish, and today I seem to have settled into just feeling a bit nauseous and peculiar. I don't like the taste in my mouth, but still able to eat normally. I am still on the steroids till the end of tomorrow, and then have some 'have them when you want them' anti-nausea drugs, plus injections for stimulating bone marrow for a few more days after that. Can anyone tell me the likely trajectory from here - like am I already over the worst of this cycle, or does it get worse once you have to stop having the steroids? Just want to be able to manage my own expectations! I have 3 EC and then 3 T with 3 weeks between cycles. I am doing cold-capping but do realise that I will anyway probably lose my hair.

@breastcancerpanic I am 10 days post my first dose of EC and glad to report that I am feeling better. Days 2-3 after were ok, just tired, a bit queasy and the horrible taste. Days 4-6 were I'm sorry to say, pretty grim. I spent most of it in bed apart from going out to sort out my horse and walk the dogs (very slowly), I couldn't read, watch tv or settle to anything and ate a bit although I wasn't feeling sick. Day 7 was so much better, tired still and a bit muzzy in the head, and I have either picked up a cold or feeling coldy is a side effect but a huge improvement. My sense of taste is still a bit off, but not as bad as it was.

The first two days was the weirdest feeling, slightly out of sorts, not exactly unwell but not right. I'm having 6 EC cycles, followed by radiotherapy. I've been told I was getting bisphosphonate tablets rather than having injections but they haven't materialised so I'll query them again next time.

@breastcancerpanic well done for getting through the first few days of the first EC. I think this is the start of your chemo? I hope things pick up and am learning from you and @frostyfingers as I have my first of 4 EC next Weds afternoon. I will be having them fortnightly. I have the anti emetics as I have to take one an hour before treatment. They’ll sort me out with steroids and filgrastim injections when I attend. How many days after the infusion do you guys need before you start them?

Must admit, I’m not looking forward to this but need to keep my eyes on the prize of finishing. Im very tired after my 12th paclitaxel yesterday but have done a little study which will help my return to work in the summer and have had a 40-minute walk and chat with a friend.

That taste is horrible. I’ve had some mouthwash and gels which help me with it, and weirdly soft crisps like mini cheddars help but I’ve already put on 3/4 stone of chemo weight so must go gently!

@frostyfingers thank you for the info - that is what I was wondering about. Sounds like the worst bit is to come, maybe starting in a day or so. But I am so looking forward to day 7!
@dancingwhilstfacingthemusic sorry I don't have the medication to hand, so can't check the name, but the injections I have are for stimulating bone marrow. I started them the day after the infusion (well - the evening of the following day - they said to take them in the evening before bed as they can give you bone ache - I haven't had any pain from them as yet). And the steroids also started the day after the infusion - as I think on the day of the infusion they were given in the drip. I am taking 2 with breakfast and 2 with lunch. Last day of those is tomorrow. There are a lot of medications and appointments to keep track of aren't there!? It's like a mini job in itself.

@dancingwhilstfacingthemusic I had fortnightly EC, and just had one pegfilgrastim injection to do 24 hours after each chemo. Take Clarityn for bone pain, as it does help. The bone pain wasn't awful, lasted a few days for me. I didn't have oral steroids to take, so can't comment on those!

I've had my bloods and weight done today, another couple.of pounds lost 😕

Thanks for that, you two. Yes, @breastcancerpanic its the bone injection - I’m told I’ll have a week’s worth to do. They’ve told me to take a loratadine an hour before (antihistamine) to deal with bone pain.

have they suggested anything for the weight loss @BatshitCrazyWoman ? I’m so sorry, you’ve had it so rough.

They haven't, apart from to encourage me to try and eat! I really find food a chore now, I just don't want to eat

Regarding the injections they were for 5 days starting day 5.

weirdly sometimes I took the whole course with no issues and other times I had lots of pain with them. There was no pattern! Heat made a massive difference though, so make sure you have a hot water bottle or electric blanket. And do the injections in the evening.

Have you tried those high calorie/nutritious milkshake things? Might help.

Really rubbish day yesterday. Finished chemo a few weeks ago and saw BCN to get prosthesis fitting which was fine but had a chat about other things.

she has said I really should get a DEXA scan because I’m going on letrozole but nhs won’t do it (because I’m only 36 so they said they’ll just scan AFTER 5 years to see if they’ve given me osteoporosis!) so she told me it’s worth paying for privately. I’ll take her advice but I’m pissed off I need to. And I’m struggling to find anywhere that does it in my city so it’s turning into an admin pain.

i mentioned to her I’m still getting a lot of joint aches but presumed this was chemo leftover and she said from my description it sounds more like menopause and recommended evening primrose oil, which I’ve since read online has very little evidence.

i am just so fed up of menopause. I could cope with chemo as it was temporary but the more I learn /experience of the long term drugs/effects of all this the more diminished my life feels. A year ago I was hiking long distances alone and swimming multiple times a week and doing well at work.

now I’m just this sad achy sweaty shriveled up thing worried about high cholesterol and osteoporosis. I’m going back to work soon which I think will help but I’m scared I’ll also struggle cognitively as well now. But hey I won’t have cancer so nothing else matters.

Thanks @aodirjjd I’ve ordered some Claritin, @BatshitCrazyWoman Hot water bottles are a must - I have a lovely long furry one which is great for leg pain. I often have a bath with mineral salts before bed too as I find it eases my muscles.

Tht does sound like a challenging day @aodirjjd I guess we are so focussed on getting through surgery and chemo that the “after” may not feature. I’m also concerned about onward side effects but the chemo is my current thing to power through. I can’t believe how much life has changed in just a few months.

I hold on to the growing number of friends I know about or in discovering have previously been treated for Bc. They’re living big lives and mostly tell me that their treatment was in the past and they’ve forgotten about a lot of it. I hope to get there.

@breastcancerpanic I used the cold cap, I lost probably 50% of my hair, it was from my whole head, not patchy. I wore a baseball cap to keep the sun off and stop the remaining hair blowing away with the wind!
I had the jabs but didn’t get any bone pain.

I've got travel insurance with Staysure.

@aodirjjd im feeling similar today - my post surgery catch up is next week and im just feeling so achy from chemo, immuno and the surgery. All my muscles, and the joints in my shoulders and arms hurt. I started to paint the lounge today and had to have a nap after - every day I feel like I need a bubble bath to soothe my aching body - I’m 45 and I feel like a 90 year old! Not sure how I’m going to cope with work, commuting, kids, loosing the chemo weight - I need to be realistic with what I can do. I keep explaining to people that I’m not “reliable” at the moment so don’t count on me!

I’m in a similr funk.

had a lovely and unexpected coffee today with a client of mine. Bumped into him in the bank and had some time to kill so we had coffee outside. His dog was there too and I LOVE her. Have missed her. (I work in private client wealth management)

also had a meeting with bcn today re surgery. Im
now more overwhelmed than I was. And have hit the realisation that this is a HUGE thing I’m going through. That’s just hit me now. I think it’s the thought of a part of me being physically taken away. Makes sense?

im also cold and tired and achey. Combo of weather chemo and lack of sleep (thanks kiddos).

They have, but I hate 'thick' things, and sweet stuff at the moment. And lots of them have sweeteners in, which I hate and now can't tolerate at all. Only two more paclitaxel to go,.and maybe my appetite will come back and my taste buds recover.

I had an ECG yesterday, and my heart is fine and hasn't been affected by the chemo. But oncologist did say I can't have my port removed yet, as there is a chance I will have to have more chemo post surgery 😞😞

How’s everyone doing?
It’s a hard time of year on top of everything else. Sorry to hear of no port removal and possible further treatments, @BatshitCrazyWoman

@ememem84 I hope things are feeling more doable. Do you have a surgery date? Is there anything you need to ask those of us who’ve been through it?

@Littlecaf I could have written your post too! It all gets so overwhelming. I have to keep telling myself that it can wait. And will have to wait. We’ve been through major physical and emotional stuff and will need more time than just the treatment end to recover and get back to the things we want to do.

I should have started EC tomorrow but have had it pushed back a week. I was very poorly over the weekend after paclitaxel 12 and haven’t really eaten since Friday. They want me physically and emotionally stronger to start it. I’m very prone to sickness and am dreading it. I have a phone consultation on Monday. I’m hoping it’s my consultant as I had the registrar last time and he was hopeless - read my notes wrong and gave me conflicting information from the follow up letter (& indeed the non expert knowledge I’ve built up from talking to people going through this).

Sending best wishes to all.

@dancingwhilstfacingthemusic thanks for checking in!

I do have a surgery date. 25 feb.

I’ve had some time to work it out in my head. But it’s still overwhelming. I’ll be having a single mastectomy with immediate reconstruction.

the things that shocked (not shocked but that’s the best word I’ve got) me were:

• thr drain needs to be in for at least 2 weeks.
• I have to wear bra and compression for at least a month (maybe 6 weeks) - how does one shower?!?!
• surgery results take 2 weeks. In my head I expected it to be quicker - probably because everything so far has happened so quickly.

I’ve got a stack of books to read re the surgery so will get to those!

big news here though. I only have one chemo left. This time next Tuesday I will be done.

@dancingwhilstfacingthemusic I'm sorry your EC has been pushed back, but I think it's wise to be as well as possible. But any delay is crap. I hope you're starting to feel better.

@ememem84 from what I've read, I may have similar questions!

And yes, all kinds of shit that I might end up having chemo until October this year. Won't know until after surgery (2 weeks after, as @ememem84 said).

@ememem84 I hope your operation goes well - I know you’re having a reconstruction which is more complicated than mine but my whole experience was good - much more simple that I had imagined. Wishing you all the luck!

I had a mastectomy and axillary clearance just before Xmas. I was lucky I didn’t need a drain, or compression (used my bought for the event post surgery bra once, just normal non wired ones since) and they just said put a waterproof plaster over the area for three weeks - try not to get it wet! I haven’t had a bath yet and just turn that side away from the shower head - I’ve changed the dressing once a week. The stitches and gauze still in place.

I have my post surgery appointment tomorrow. I think they are taking the stitches out…. Not sure, they were a bit vague and it’s been Xmas! I have been to the drop in clinic once to have the dressing checked.

I do have a seroma which I probably wouldn’t have had if I had a drain. It’s a bit sore and numb - It was almost the same size as my other boob (and I’m a 36E so not small!) It’s slowly going though.

I’ve been doing the exercises as in the Breast Cancer Now booklet - I can do them in my sleep now - takes 5 mins x 3 times a day. I think I have some minor cording - my underarm is tight / sore but it’s ok. I’ve painted the lounge this week (with the other arm!).

The first few days were a little rough - mostly just sore/tired but have been ok for the last two weeks. Paracetamol pain control has been fine - sleep with a heart shaped pillow under arm.

The actual surgery day was a little overwhelming. I had to be there at 7.30am and DP couldnt come into the ward with me. The doctor who told me I had cancer was one of the surgeons - I didn’t know this prior and I got a bit teary when I saw her. She was lovely though and super professional which was reassuring. The ward was noisy and I realised that my operation was probably the least complicated of the 3 others they were doing that day including an older lady who had multiple health issues and a lady who was disabled and needed calming down. I was grateful I suppose for a simpler operation in the circumstances.

wishing you all the best.

Things are a bit tricky here, not so much with me but with DH who had his first chemo last week and it has completely wiped him out, I'm so worried about him. He's not eaten since Sun pm, can't/won't drink and is just sleeping and looking frailer by the minute. The helpline have offered some advice re medication for stomach pain, he's basically feeling sick every time he sips water, but we can't establish if this is a reaction to the chemo, or the cancer itself. Frankly I'm terrified.

For me, I've recovered ok, mostly just tired now, from my first EC but blimey the 3 weeks comes round quick as the next one is Monday and I'm dreading it already - particularly now with DH so unwell. The thought of life being like this and quite possibly worse for a minimum of four months is pretty depressing.

I'm caring for him whilst dealing with myself and it's so hard, my treatment seems a walk in the park in comparison but it's still difficult, I'm a carer and nurse and patient all at the same time.

Sorry for the woe is me post, this is about the only place where I can say what I feel!

@frostyfingers I’m so sorry things are so hard and scary. I don’t hard useful advice but hopefully someone will have a suggestion. Much love to you. Keep talking, we are all here to listen.

@ememem84 brill news that there’s only one chemo. What an amazing milestone.

Just my thoughts on the experience as I had an immediate reconstruction with implant, which needed a final inflation about 3 weeks after surgery. Prior to that I had a lumpectomy and a further cavity shave but as my little bastard tumour was so close to the lateral side I had to go back in a third time and opted for mastectomy rather than another cavity shave.

• drain needs to be in for at least 2 weeks.

mine was in for 12 days. They told me they prefer 10 and I was on antibiotics the whole time as a just in case. Have some spare night wear as the odd leak may occur. I had some pee pads on the bed / on my extra pillows, as mine did leak a couple of times and that saved the mattress. I went back to clinic to sort the dressing a couple of times too. I think it was turning and twisting y trunk that triggered it in my sleep but there’s not much you can do about that! I did have a blockage at one point and had to “milk” the tube. Honestly, I just took it a day / night at a time and most of the time is was no problem.

I had a very unusual issue in that a couple of days after the tube was out I went to town on my own. This is just a heads up and I was so spectacularly unlucky through the whole multi operation process that it could only happen to me! I hadn’t realised that there was still fluid behind the wound and unfortunately the movement of striding along caused that to leak through my clothes. I went to a local library/ coffee place and asked for first aid so I could get some clean dressings and tidy up in private whilst dh came to collect me. Hopefully tho is really unusual but I wish I’d left the house with some dressings which would have helped a bit.

• I have to wear bra and compression for at least a month (maybe 6 weeks) - how does one shower?!?!

make sure you have a comfy soft bra, ideally front closing. There are plenty on amazon - I’m sure people will suggest what works for them. It’s easier once the drain is out but if you’re super careful before then, you can run a couple of inches in the bath and sit in - don’t get the wounds damp! Dh helped me with washing, using a flannel wash initially. I could also stand with the shower head below the level of my drain so I could rinse my nethers. Your team will advise when you can shower/ bath over any of the wounds.

it’s amazing what we can get used to and work our way around.

• surgery results take 2 weeks.

Histology needs time which is so frustrating. One of my surgeries took 3 due to capacity so I truly hope yours is on track. Keep busy, rest up.

whether you’ve had reconstructions or not, as @Littlecaf says, do the exercises and keep going them (I’m 4 months in and still do). Also, once the wound has healed, massage it. I didn’t know about this and am told it helps to prevent adhesions, promotes healing and helps with the implant settling. My scar tissue is improving with massage.