Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

[WhatWouldLeslieKnopeDo]

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

My one "good" arm is blue with big lumps, The canulas were popping out the vein wall when they started to push the fluid in. God knows what the fluid is (saline ?). I've just started to come down off the terror ceiling !!!!

The foot arch is terrible. Don't ever let them do it to you without knocking you out first. Took ages to go unconscious as well, it must take longer to get up to your head. Know that it wasn't quick enough for me by that time.

Hi fresta. My affected boob is still different in size, fullness and skin tone from the other one and it has been 6 months since I completed my rads. There have been times when the breast seemed hard but it is less so nowadays. I was told it would take up to a year for the affected breast to resume some degree of its normal form. It does nother me at times and I did have issues with oedema in the early stages of my treatment and suspiscions of an infection which were then ruled out when they tested some of the fluid. i even had to have some of the fluid drained out( very uncomfortable i found it to be!)

Thanks for the new thread Leslie, particularly because you have created it and name checked people from your hospital bed. I hope you are home soon, and that the clots dissolve. Fragmin is a stingy injection, I have been on it and clexane a few times, and always reward my bravery with a chocolate button

Tutti I have never had a canula in my foot arch before. I have had blood taken from my feet though, and the staff doing it were always very apologetic because they knew it was a painful place. Unfortunately there was no way around it because I only have one good arm, and the blood had to be taken from a different limb to the drip which was going into my arm. I wouldn't say I'm needle phobic, but I never look during blood tests or cannulation. I think having a mastectomy if you don't get clear margins this time could be a good idea. You might need to fight for a double though, although I suspect you will rise to that challenge. Hopefully it won't come to that.

What I am sorry to hear that your mother has cancer. I'm afraid I do not know anything about her diagnosis, but please use here to let off steam.

Fresta hopefully it will be easier to remember to take your antibiotics at the weekend

I have completed my first week of uni, and I'm pretty tired even though I had Tuesday off, and I skipped all my lectures. I have listened to them at home instead. It feels good to be busy again though, not least because I have other things to occupy my mind and so I think less about cancer.

Congratulations on completing your first week mysillydog you must feel tired but that you've really accomplished something worthwhile.

Waves to all, just placemarking while herding feral children
You can probably hear them bickering, DH seems to have gone to the pub and I have my Not Amused face on!

Thanks Royal, it's good to hear it's normal, which is what I had read elsewhere online. However, we had a lyphoedema person talk to us at the conference last week and she suggested any swelling lasting more than 3 months is probably lymhoedema. I really don't believe this though. I don't in any way feel fully healed from rads ad surgery and it's 5 months since surgery.

Fresta, my breast was bigger a year after finishing rads. I thought it would end up smaller than its original size but was warned that getting bigger, at least in the short term was more normal

Nice to be on a fresh new thread!
I had my port fitted today so I'm resting in bed. It's sounds chaotic downstairs with kids so I'm staying put!
Tutti you gave me strength today - they were struggling like hell to find a vein in my hands and had 3 attempts using their finest premature baby needles Thinking of you toughened me up a bit. They got the ultrasound machine out of theatre in the end and found one .. and then I was quickly gone.

God I'm not tough Rocket. I was almost crying and freaking out; but thank you anyway. Glad it went well in the end.

Pepper throw them a packet of biscuits and a couple of Fruitshoots and then that will be the feral children fed... retire to another room with wine.

Fresta & Royal, my BCN said a sure sign that you've got lympodoema in the breast/chest are (even when you haven't got arm/hand swelling) is when there's a slight thickening towards the bottom and just behind the arm pit. Have either of you noticed this ?

Hope you've managed to get home leslie

Wow tutti that sounds awful , I thought they had trouble with me before my ops but your experience sounds so much worse
They had trouble finding a vein on my first chemo so they insisted I had a picc line put in .

Leslie I didn't find the injections too bad to start , had a few bruises though but soon got the hang of it . However 15 months of it and I had loads of 'hard' bits and if I went in near them then it really was painful . Hope you don't end up with them for long . Are you going to do them yourself ?

What sorry to hear you are going through this with your mum .

Thoughts with sleepy and her family

Hello, newbie here, found out today my sore breast lump is almost certainly cancer, and going back next week to determine the treatment plan.
My main thing is how do you tell your family?
I have 4 children, between 18 and 27, but 3 of them of them have just this month embarked on new ventures. My eldest is working in a remote Chinese city, and the youngest 2 are freshers, at opposite ends of the country'.
When they are all together,,they are like glue, and very close, but they are now apart, and yet to make supportive friends.
In an ideal world we could all be together and share hugs and reassure each other,
Not sure what else I want to say

Hi All, so glad I found this thread. I've found a lump in my left breast and when I went to the GP yesterday she could also feel one in my armpit. Also have a red rash on the left side, dry skin etc.

Got an appointment at the breast clinic on 13th but yesterday I was just in bits thinking the worst. I thought trying to conceive for 3 years and then splitting up form my husband was hard enough but this waiting is the most horrific thing ever.

OH Changing and Holly; sorry to see you here.
Changing. That's a tough one. I would be inclined to say nothing to the children until you have your treatment plan and know what you are facing, but there's no right way of doing this.
Holly. The waiting is one of the most awful things about this whole process. The 13th seems a long way off and I'd ring my GP on Monday and ask for a quicker referral. Prepare for the worst and hope for the best is the only tactic I think.

We're here to help you through it and let's hope that you just have a temporary bottom on our seats !!!
Morning Lacies, hope all well, have overslept by three hours again so gotta love those drugs

Hello all, just dipping in - haven't been on for ages. Sorry to see so many newbies but welcome to the group.

I read about Lilymaid a while ago and can't stop thinking about her. It feels surreal because I've never met her but felt as though I knew her; she was always so kind and helpful.

Holly and Changing, this is the worst bit- the not knowing. Once you know for sure then - even if it is cancer, it is highly treatable, and having avtreayment plan in place will make you feel loads better. Id second Tutti's advice and wait to tell your children once you know more.

I really struggle to keep up with everyone's stories so I'll recap mine. I'm 44 with two dc (13 and 10), I was diagnosed with grade 2 lobular breast cancer the end of August 2015. It is hormone positive but Her negative.

I'd had a slightly "pointing down" nipple for several months but could feel no lump, so stupidly left it, thinking it was just old age/ gravity. I also had really bad back ache and went to the drs about this and as an afterthought mentioned my nipple. Two weeks later and i was told it was cancer. My biggest worry was the back pain, as by now I was convinced that it was in my spine. I had an mri and they found a tumour at the base of my spine. I had lots of other scans but they were still unsure about the tumour so I had a biopsy and, fortunately, it turned out to be an unrelated, very rare tumour.

I then had a mastectomy without reconstruction. The sentinel lymph node turned out to be cancerous.

I them had chemo; 3 x EC, followed by 9x weekly taxol at the Christie. I found the EC was harder than the tax for me. But it was all do-able. The worst part was finding my bloody veins but i had a picc line fitted eventually.

I then had a choice of lymph node clearance or radiotherapy to my remaining lymphs and i opted for the radio. This finished at Easter. I'm now on tamoxifen which is giving me horrible hot flushes and disturbed sleep but I'm hoping that this will improve.

I didnt cold cap, so i lost my hair but it's now coming back à la Dolly the Sheep; thick, tight curls - it's incredible.

Now that the treatment is "over", I have to go for an annual mammogram and check up. This part now is quite hard as it's all just hitting me. I think whilst you're undergoing treatment, you're focussed and jumping over hurdles. I feel like I'm having a delayed reaction to the whole traumatic experience. Every little twinge or pain takes on a sinister meaning... I suppose this is the way things will be now...

Anna. I went out for the day on Wednesday with a lovely friend. Both her MIL and one of her other close friends had Breast/Cervical cancer. Both of them "went to pieces" in her words, when the treatment had finished.

I think this is a very common reaction and you're right, it's one thing after another when you're in treatment, and then all of a sudden, you are back in the big wide world, without all of that structure that has filled your life.

Again, I'm not there yet, so don't have any experience to bring, having had cancer, any twinge is going to be considered sinister. Hopefully with time this will start to ease off.

Hello Anna so good to hear from you again. You summed up what I felt like once treatment finished and I was in the "let's wait and see what happens next" phase which really is scary. Every little pain or ache or change is enough to trigger anxiety ten times worse than that you felt when you first found out you had cancer. My next follow up is in December and I have been asked to have a mammogram in February. Sometimes ( briefly) I actually forget I have cancer and I almost feel guilty for doing so! I intentionally remind myself of my cancer because of the fear of it returning along the way..it is like I do not want to be taken unawares again. Oh well!
To those who have just joined us, welcome and sorry you have have had to join us here but you have come to a safe, comforting and supportive place. You are now a valued member.

Lacies, please line up to give me a big slap and tell me to pull myself together.
After Thursday I'm struggling a bit and keep thinking about it and how I'm going to get through the rest of the treatment. I think I'm feeling somewhat violated and a bit precious.
When the supervisor anaesthetist went for the 2nd attempt on the foot, I said "Please God, No" and she just went ahead and did it and ignored me. I got the feeling that my veins were really irritating her.

I feel a real wimp. Form an orderly line. No pushing or shoving.

Morning all. I had a long lay in too as I was really tired yesterday. I am aiming to be a bit more active today.
changing I personally waited until I knew as much as I could about the treatment plan before telling ds as I knew he would ask a lot of questions.
Holly the waiting part is horrible but once you know what you're dealing with things move on quickly.
Anna Did your spine tumour clear up with chemo and rads? I have a lesion on my spine and it feels very daunting at the minute. I am apparently going to have 6-8 week follow ups when I first finish treatment so will have some kind of structure. It will no doubt feel odd having to go back to a new 'normal'.
Leslie hope you are out of hospital and relaxing at home
Hope everyone has a decent weekend.

Welcome Holly and changing I hope you get good news

changing I agree about not telling your children until you have been told it's definitely cancer (hopefully it will turn out not to be!) and have a treatment plan - are any of them still living at home?

Anna lovely to hear from you again. Lots of people struggle at the end of treatment. I hope things get easier soon good idea to do a quick summary, we used to do that at the start of every thread! Will do mine in a mo too.

Stila thanks for the warning :) I will keep an eye out for hard bits! Yes, I'm doing them myself. It's not too bad.

rocket great that you've got your port fitted :) especially as they had trouble finding a vein. Good that they got the ultrasound out quickly though. I hope you heal up quickly

pepper I hope the feral children calmed down!

Mysillydog chocolate buttons sound like a great idea well done on your first week of uni! that's brilliant

mrsrhod no secret spreadsheet, just too much time on my hands!

Fresta can you set a timer on your phone for the antibiotics? I hope they don't cause any side effects, especially if they're not actually needed! I take my tablets four times a day so I have an alarm on my Fitbit and my phone

royal sorry about the anxiety. I forget too and I'm in the middle of chemo the other day I was actually in the chair with the chemo going in, then looked up at the drip and wondered why I was there! I hope the anxiety wears off soon

chewing good luck with your next scan, and I hope your team can give you more answers soon

Whatabloodyidiot sorry about your mum's diagnosis and I hope that her treatment is going well

Waving to everyone else!

I'm home now. I did my first injection last night :)

Quick summary:

Diagnosed with stage III bowel cancer in October 2012; pan-proctocolectomy with ileoanal pouch anastomosis; six months of chemo. Routine CT in March this year showed lesions in both lungs; PET scan confirmed cancer; now having chemo - FOLFIRI and cetuximab; waiting for CT results to see how chemo is working; just out of hospital after a pulmonary embolism

Sorry I've been typing that for ages!

chewing I hope you enjoyed your sleep :)

Tutti have you considered a complaint to PALS? Either the team were breaking the usual guidelines about number of attempts, or your hospital needs to put some guidelines in place. I have never heard of anything like it and some of my friends have appalling veins! I am struggling to imagine 20+ locations to insert a cannula on an arm so no wonder you are bruised and battered. I hope your veins will recover quickly. I have been told previously by a nurse that they're not meant to attempt to cannulate the same vein in multiple locations because of the increased risk of damage, so again that may be a guideline that has been broken here. Anyway, making a complaint may help you to feel more in control

I hope everyone is having a good morning

leslie hurray for being back home ( every Lacie's castle!) and good on you for injecting yourself
Tutti I do not want to lecture you but feel free to shut me up if I seem to be because you have been doing brilliantly thus far. Of course you feel daunted by what happened. Who wouldn't?! We tend to question our ability to cope, only to find we do because we have to. What happened to you was very very unusual and perhaps the one lesson to learn from it is to say stop loud and clear when they are causing you unnecessary pain or anguish. You have the right. They should be professionals but this lot did not act very professionally I am afraid, especially when they failed to consider your feelings and state of mind. You do NOT have to put up with that kind of treatment again. We are here for you as you go ahead from this. May I suggest you treat yourself to something speshial cause you bloody well deserve it. You have a remarkable sense of humour Tutti and bring so much to the thread, elephants and all :)
Finally..it is OKAY to feel bad. That is what dealing with the damn cancer teaches us.

Cross posted with you leslie. I agree with leslie about considering a complaint Tutti ..

Husband has taken 'photos of my arm and wants to go and see my BCN on Monday.
I've been trying to "tott" up the vein useage. So I've had 3 pre-ops, 3 ops, 2 radoioactive in 7 weeks, which doesn't seem excessive compared to what all the lacies have managed. I am writing a formal letter to God to complain about my substandard veins.
As we didn't know about this latest op, DH had booked date night for tonight. I've decided to go.
Apart from the rather lovely Laura Ashley curtain material slop bag hanging from my neck, I have no idea what to wear. I need something that covers a battered arm, a really fat arm, one massive foot and odd tits.

I'm thinking of going with a giant Nana Mouskouiri kaftan type thing. I need a nice colour that will bring out the colours in my bacon streaked hair. I will be hard to resist.

Thank you lovely lacies xxx

Yes, tutti I would definitely put in a complaint. There may be a training issue or lack of knowledge that needs to be addressed. Others at the hospital may have experienced similar (hopefully not though).
Are you in the Midlands area? If so pm me the hospital so I can make sure I never get that treatment.
I am at your description of yourself. I'm sure you look lovelier than you think but I would definitely wear something long sleeved tonight if I were you. I thought Nana Mouskouri was dead but she's still going strong at 81-I must be confusing her with Demis Roussos. Enjoy your evening.

I've also booked a hair appointment for next week.
As it's Autumn I have decided I want to look like a conker.