Cancer support thread #82

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

Hi again,
@TopOfTheCliff yes I'm Scottish, just west of Glasgow.
I had the PET scan today, the MRI showed I have stage 3 C 2 cervical cancer. It has spread into the lymph nodes in my pelvis and in my abdomen.
I'm going to have to phone back tomorrow as I got confused with how often I'll have chemo. I thought the Dr said once a week for 9 weeks then chemo and radiotherapy for 5 weeks, my partner thought it was once every 3 weeks for 9 weeks, then onto the 5 week chemo and radiotherapy.
Just wondered if anyone had any idea which it will be.
I know everyone is different and we all react differently but a rough idea would help. I'll definitely phone in the morning, but I could do without another sleepless night!

@MissSmiley I do hope the doctors find an agreeable solution. I actually loved having my own room after double mastectomy/DIEP reconstruction. The only drawback was that it was right next to the nurses’ station, so I was able to hear every conversation/phone call, some of which were pretty disturbing since I was still recovering and I could hear conversations along the “Call the consultant NOW, the patient is crashing” lines. Your children won’t mind all the tubes/wiring, they’ll be glad to see their mum. But I know what you mean.

Waves at @Fantasea (FizzyOrange).

@PaddingtonStareBare Excellent news!!!!

@Silkierabbit not long until next week now.

@TopOfTheCliff could be but my last chemo session was in Nov. 2020, so a while ago. However, it is getting better. I phoned the breast clinic this morning, got passed on to the surgeon’s secretary to find out about the CT scan results - she said that they results are in but haven’t been passed on to the surgeon yet. And that he will either phone me or write me a letter. I kind of interpreted this as good-ish news (surely they wouldn’t dilly-dally so much if it was bad). Still on tenterhooks, though. Glad you are taking it easy for a while.

Today was my first session of the moving forward course at Maggie’s with 8 other ladies in a very similar boat. 2 1/2 hours just flew by - mainly taken up by everyone telling their stories as a way of introduction. Looking forward to the next one (6 in total). I did feel very un-burdened when I left but when I got back home it hit me like a ton of bricks - I couldn’t stop crying.

@catzrulz Did they tell you what drugs they were giving you?
There is a carbol/taxol/avestin cocktail sometimes given every 3 weeks, then the 5 weeks of chemo rads will be cisplatin chemo and radiotherapy at the same time.

I do recommend joining this group if you are on Facebook www.facebook.com/groups/275836379587444

@balkanscot that actually sounds a really positive session you went to. Nothing wrong with a good cry it lets out the bad energy as my lovely yoga teacher would say. I feel for you waiting for the CT results it seems endless!
I’ve been moping today because I had a bust up with DB on Tuesday over DMs financial affairs and he lost his temper and was horrible to me. He has been soldiering on all through my illness and DSis and other DB don’t help much but I have been really helping and useful. He’s shot himself in the foot because I am withdrawing for a while to let him stew. We are a very conflict avoiding family so arguments are a big deal. I realised I was festering and being grumpy with DH so I demanded an apology from DB and got one. I’m going to get up tomorrow and be a ray of sunshine!
Regards to all
Top

@SewingBees that's a big brave step (((hugs)))

@catzrulz sorry about your diagnosis

@balkanscot it's rubbish when they have the results but can't tell you. I'm waiting for mine, they should be in but no one has mentioned them, we should like we've had similar days, I had a huge meltdown this evening in my bloody private room. I want to be at home with the kids, it's nearly three weeks and I'm not getting better. I'm very fed up of the nasal tubes, they hurt and make crying even more unpleasant.

Feeling pretty depressed this evening but grateful to have you lot too talk to.

So sorry you are still stuck in hospital and things aren't improving MissSmiley Hope they can do something effective and quickly. Sending you love and hugs.

I am awaiting chemo prosigna results, pushed back another week to 7th but somewhat ominously an appointment with chemo appeared today on 28th but no-one is telling me anything. I suspect no-one wants to be the bearer of the bad news. I do not want to be the receiver either or wait another 3 weeks, argh. Plus will mean no Easter or summer holidays. Well they said could do a few days close to another hospital in UK but a hospital tour of the UK A&E departments was not what I had in mind. Having said that Orkney hospital looks impressive. I wanted to see puffins but puffins do not come with hospitals. Actually Orkney has puffins but small issue of the 15 hour trip to get there. Had covid vaccine booster yesterday, still on normal list.

Top Hope argument resolves.

Catz So sorry about your diagnosis. I am breast cancer so sorry I do not know about cervical chemo but hope you get answers tomorrow. Ours can be 3 weekly or weekly but normally 3 weekly.

Balkan glad you had some counselling.

Podge Well done on getting through that.

Love to everyone else.

Hi all
Ladies who have had a sentinel node biopsy....
I had this along with a lumpectomy 10 days ago and today I have noticed that at the very top of the node scar I have a firm large ball which feels bruised if I touch it. When I went to have my dressings removed on Monday, the nurse did say there was some swelling there and to keep an eye but I've just felt for the first time and it's quite an alarmingly sized hard ball! I think my arm is a bit achy too, but I have typed all day at work today.
I will ring them tomorrow but, in the meantime, I wondered if anyone can reassure me please?

Just I had a SNB, not exactly sure what the big lump is, I know they aren't cancer, not sure if they are fluid build up / seroma but best to get checked. If its fluid it can be drained. Arm exercises can also help but best to get properly checked. Would call tomorrow but things like this are fairly common. I had some lumps after mine in breast which when they did further surgery they took out and one time fluid was drained. Often its just draining these things, they numb it, stick a needle in, suck it out in 2 mins, done.

Thank you Silkie, I have been doing my exercises, it just felt more bruised tonight so I felt and it feels like a really swollen gland, but it may not be of course!
I'm actually going to the rapid access clinic tomorrow with my friend who has found a lump, so I might see if they can see me while I am there.
It just shocked me when I found it tonight.
I only had the diagnosis 3.5 weeks so everything is still sending me into a panic!

I think things like that are very common and they are normally easily resolved but just best to have someone look at it who is trained. I only had surgery for some of mine as they were doing a second surgery anyway otherwise think they would have left those lumps. Normally you just get drained if its fluid and its painless and a few minutes.

@Justalittlebit10, just to second others, I had a lump after surgery too, showed it to surgeon on follow up appointment, drained painlessly and although I hadn’t noticed discomfort before, felt better after if that makes sense. The whole area is so tender, I think it’s hard to know what’s what early on.

@MissSmiley I’m so sorry to read that things are still so hard for you. Crying with nasal tubes in sounds bloody awful 😞 I really hope they get you sorted soon, I’m sending you lots of love.

@Silkierabbit urgh, the waiting!! Scanxiety 😩😩 I hope someone gets in touch with you soon, awful when you’re kept waiting, it’s so hard emotionally.

Had the second round of EC yesterday, reduced by 20 %, and I have just the one follow up injection this time, currently waiting for me in the fridge. Praying I don’t feel as terrible as 3 weeks ago. The previous 12 weeks of carbo/taxel seem a breeze now, looking back! Have started to lose lots of hair; have been v v lucky with the cold cap since I started in November, but my oncologist warned me the EC is a more gruelling regime all round so it’s to be expected, I’ll carry on with the cold cap anyway, see how I go.

Oncology appointment prior to chemo yesterday, she said my surgery is still on for mid-May, and because the tumour has responded well, will likely be the surgeons original prediction of lumpectomy and reduction - does anyone have any experience of that, please? Then depending on path results, possible radiotherapy and/or 6 months of oral chemo. Discussed the ongoing checks etc, and lots of other stuff which I can’t remember right now, all written in my trusty diary and my sister accompanies me too, so she remembers what I don’t. Chemo brain.

Lying in bed waiting to get up, make a pot of tea and and see what side effects kick in!

Sending you all love, as always xx

@Justalittlebit10 It's likely to just be your bodies response to the surgery, I had quite a large lump in my breast after surgery and it was just where tissues had been moved. It did settle down eventually,

@TwoBigNoisyBoys I had a lumpectomy with double therapeutic mammoplasty and full axial node clearance.

My surgeon removed my tumour and I got a boob reduction and uplift thrown in for free. The surgeons at my hospital are oncoplastic breast surgeons so they can do mastectomy with implant reconstruction and also mammoplasty but not diep, tug or lateral dorsi so he does a lot of double mammoplasty work to reduce waiting for plastic surgeons.

@TopOfTheCliff Glad you got an apology from your DB and hope today is better.

@MissSmiley nasal cannulas are the worst! Post mastectomy they had me on one to increase oxygen in the blood and the flow rate was so high it caused my sinuses to close up so it was like blasting air at a wall. They couldn't turn it down until I got my sats up above 96%, so I spent that night focusing on breathing through a stuffed up nose. Every time I moved my head the cannula would shift and I would have to put it back.

I know you are feeling low and at that treatment point where you've gotten started but is the healing part and the body just isn't playing ball and it seems like so much longer to go. Hang in there and just focus on getting through hour by hour.

@Justalittlebit10 it could also be scar tissue forming over an internal stitch. I had one develop about four weeks post surgery and in the same vicinity as my original tumor. Cancer cant form into a palpable lump THAT quickly, so logically it had to have been something else.

Almost done with breast rads and then a week off before starting olaparib. Its been fantastic to have energy and feel like a normal person for a little bit, but I wish I didn't have to go back on treatment and could get off this ride.

@MrsPnut thank you so much for that. My oncologist was raving about my ‘perfectionist’ surgeon yesterday and said she only does breast surgery, and also confirmed I will be having both boobs done, (even though the tumour is in one boob only) which I had wondered about! I wasn’t sure if I’d be matched up. I was also told my surgeon is meticulous about appearance, which again was reassuring.

Can I ask what your recovery was like, please?

@HerbalRefreshment I hear you about just starting to feel a little bit more human then having to get back on the ride. The rollercoaster no-one wants to be on! 😕

@HerbalRefreshment they are NJ and NG tubes to feed me and empty my stomach, I did have oxygen ones on top while I was in HDU.

Thanks everyone, don't know scat today will bring but just have to get through it

@TwoBigNoisyBoys My recovery was really good. I was up and about from the day after surgery.

I couldn't shower for 2 weeks but managed with a wash and had my hair washed by the kids and my hairdresser. (I had surgery before chemo for my breast cancer). I walked to my hairdressers in the village less than a week after surgery carrying my drains and pico pumps in a bag. I had dissolvable stitches and within 3 weeks they had pretty much gone.

Thanks all, I'm popping in now for them to have a look. It's just suddenly quite painful after being ok for a week. You have all made me feel better though x

@MrsPnut thank you so much for taking the time to reply, that’s really reassuring. I’m a wuss at the best of times so it’s grat to hear about your experience. I’m glad you made a quick recovery xx

The rate my hat is falling out on this new chemo, I’m anticipating that hair washes won’t be an issue 😩 but it’s not important in the grand scheme of things I guess.

@TopOfTheCliff family fall outs, argh! I am glad it’s been sorted out, though. There is nothing worse than festering. I hope you are one with the ☀️ this morning.

@MissSmiley I really feel for you, I only had the oxygen tube in once (during my 24 hours stay in HDU) and it was bad enough with just this one. It will get sorted out, your insides will start behaving and the doctors will make sure that’s the case (even though one of them may caused some of it inadvertently ).

@TwoBigNoisyBoys EC trumps it for me as you could literally feel it in your body (I could) as soon as they would start injecting the dreaded red liquid. Side effects afterwards - I literally thought I was dying after my 1st session. After the subsequent 3 ones at least I knew how I would feel so I could mentally prepare myself. Then I thought I would breeze through the docetaxel/carboplatin combo. Didn’t have that dying EC feeling but it completely destroyed my digestive system & made my skin/nails split. With added neuropathy. Grim. You will get through it, you will.

All the stories I heard from the fellow attendees yesterday hit me hard last night. On the other hand, we were on the same wavelength - towards the end of the session we all sat together over some lovely snacks prepared just for us by one of Maggie’s nutritionists, and it was so… liberating? Empowering? To hear that as soon as you mention EC everyone around the table knows exactly what you are on about. Oh, god, I am about to cry again…

@balkanscot yes!! You can almost feel it draining you as soon as they start injecting! I was the same, absolutely dreadful after my first dose, had to have blood transfusions etc. So when I went in yesterday I was told quite sternly if I experience any like last time I’m to contact them STRAIGHTAWAY and not leave it a few days like last time. It’s hard to gauge though isn’t it - you think well I’m on chemotherapy, I’m bound to feel bloody awful!! Hopefully have a ‘benchmark’ now though. I’ve already had 12 weeks of carbo/taxel so I m in the last leg now…EC again in 24th March and 14th April, then a month off before surgery.

I hear you about the tears…I’m about 5 seconds away from full blown crying pretty much constantly. Sending you love and xxx

I've been seen and it's a seroma but apparently that's normal and they don't want to drain it at the moment in case it makes it worse, so I'm there again next Thursday.

@twobignoisyboys how are you finding the cold cap? I'm seriously considering giving it a go when I start chemo. Any tips would be greatly appreciated!

I'm currently on a 4 week wait to see surgeon after op, for results. Burying my head in the sand about it all to be honest. I wasn't good emotionally for the 13 days between diagnosis and surgery, but for some reason I've felt better since surgery and just been trying to get on at normally as I can.

Hi @Justalittlebit10. I have found it time to be honest, but there does seem to be a correlation between if you suffer from brain freeze and being able to tolerate it…I don’t, and it’s been fine. I’ve had 14 doses of chemo now (12 carbo/taxel and 2 x EC) and have had it throughout; you can’t stop and start it. You need to have it on for 30 mins before chemo is administered, and between an hour and two hours afterwards, so it lengthens the time you’re there for. It’s uncomfortable, but not intolerable, well I didn’t find it so anyway. One lady I shared the machine with could only keep it on for her first 20 mins and couldn’t bear it any longer. It really does vary for person to person, but you can’t pick it up as and when…if you miss a week you can’t pick it up the following week, it’s too late. So it’s every week or nothing!

Down sides are that you should only wash your hair once a week, using cool water and a very gentle shampoo, and should ideally let it air-dry, no heat from dryers, straighteners etc which I found hard because I have greasy hair, but it does get a bit better as it self-regulates after a few weeks. Advised to use a wide toothed comb just once a day to de tangle. Hard if like me you’re used to doing g list with your hair! But..It’s worked brilliantly for me, barely any loss at all up until I changed to the EC chemo, and unfortunately I’ve started to lose it. Had a good few handfuls fallen out now. But the loss varies, some people don’t lose any any all, some can lose up to 60%. I’ve been incredibly fortunate so far, but I have now made an appointment for a wig fitting next week, to have on standby in case.

Hope that’s helped…If you have any other questions please don’t hesitate to ask 😊 happy to answer xx

*found it fine, that should say!! Why is there no edit button 😩🙈