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.

Thank you for your kind words @InOtterNews, @KentishMama @Acinonyx2 and @MrsPnut. That’s why it’s therapeutic to come here and vent. My DH is helpful, bless him, but nobody who hasn’t gone through chemo can really know what I am talking about.

Ultrasound went fine. Sonofrapher hinted it was good news but will just have to wait and see until next Tuesday.

Thanks guys now I've calmed down and thought about it, it's probably about the adrenal glands. Neck guy said the results would go to Endocrine and just too quick a turn around to be that. Gyny already have scan and have apt with them.

@Shrillharridan bit disappointed with your GP - this isn't about cancer - it's about controlling extreme anxiety that is interfering with your daily functioning. Ask again if you are not satisfied.

@balkanscot hope you get some good news.

@Lubballoo The exact regime will depend on results of surgery and scan (I have so many abnormal nodes they couldn't specify the number...) but I am hoping it will be just Herceptin and it's cousin - although Herceptin is actually the drug I've had the most trouble with so far. When I had my spectacular reaction people suggested they would just swap the drug for something else - but as my fellow Her+ people will know - this isn't a drug you can just swap out, as it's a targetted monocolonol not a cytotxin. So I am committed to taking it but might complain a lot.

@InOtterNews how are you doing? Hope things have settled down a bit.

@Acinonyx2 I used to start heaving at the sight & smell of my chemo ward. Purely psychological but that’s how it made me feel. Good luck with your next session on 21 Dec. And forgive me for my ignorance, have they told you you are having more chemo after surgery in 2021? This is the bit I am dreading the most. I am a sensible & rational person (Virgo, what can I say?) but after my experience of chemo I completely understand people who refuse it and choose alternatives, even though alternatives don’t work. I mean, what the hell is happening to me when I start thinking like this??? I know I would still choose chemo over any other quack treatment but boy, it has been by far the most difficult thing I have ever had to go through.

@balkanscot They told me at my very first consult that I would be doing chemo again after surgery to next Xmas - at least. It's just a question of details to follow surgery. A week after my first chemo I cried on the phone to my nurse and said I understood the mindset of people who refuse treatment - I would never do that (I have dd at home) but I get the mindset. My mother had cancer for 10 years and refused all treatment - she didn't believe in western medicine generally and I nursed her at home at in her last weeks. It's not a POV I agree with but it has left its mark on me. I've been a bit unlucky with my drug reactions (uncommon - the dr said).

Gosh Acinonyx2 your chemo experience sounds horrendous. So sorry you have to face all that again.

I found our yesterday that my CT was clear - yay! So apart from my breast and lymph node everything else should be ok.

I met my oncologist for the first time today. He basically threw loads of statistics at me about survival rates with different treatments. It was overwhelming and exhausting. But basically we have decided on six cycles of EC chemo followed by radiotherapy followed by hormone treatment. He's not sure about Herceptin as, although I have a result logged on the system for HER2, they're not sure where it comes from as my sample has been lost. All a bit confusing! So, anyway, I'm glad to have a plan in place but also feeling very nervous. Got ECG, bloods and PICC line to be scheduled in, then should start in next couple of weeks.

@AlbertCampion Great news about the CT scan - I was my most nervous going to get that result. When that was clear it made everything else seem relatively benign. Lots of people seem to have had discussions about options - but I was just told - this is your treatment! As it happens I have a background in a sister field so able to judge for myself and see that the plan is sound. It is good to get the plan in place.

I'm getting a port (rather than PICC) put in next Tue then chemo Wed. Advantage of the PICC though is you can really do everything - whereas the port is only IVs not bloods or scan dye.

I don't want to scare anybody with my tale of chemo-woe - I do know people irl who have fairly sailed through chemo - it's so variable.

PS - drs are all quite different. My oncologist didn't mention any stats or survival rates - just said - you're more likely to survive than not. I've run all the stats and whatnot myself since and can see that that was a very sensible response.

Well, I've picked up the diazepam.
I'm going to try and spend more time out of the house tomorrow.
I'm also going to phone macmillan too.
Thank you for all the support when you are all going through so much.
I can't tell you how much it means to me.
I just keep going around in circles...how could 3 ophthalmologists miss a cancer?
My kids...my dh...God, I'm mess :(
Love to all x

@LarGoo

I had a double mastectomy without reconstruction 6 1/2 years ago and from what I can remember (it's a bit like childbirth, you forget the crappy bits!)

• woke up with 3 drains in - I'd also had lymph nodes in my left side removed too. Pain was managed really well and remember feeling sore rather than in actual pain. I was on the hard stuff for about 36 hours and them managed with paracetamol and ibuprofen. Can't remember how long I took it for but was surprised how pain free I was (my only previous experience was c-sections which are very debilitating but this time I could move and walk and bend etc, so didn't seem that bad).

The drains go into bottles which are in bags so you can carry them when you move around. They don't hurt but are annoying cos you can get them tangled up when you get up or go to the loo. I was worried I'd pull them out but nurse said that doesn't happen! They stay in until the output goes down to a certain level which for me was 4 days, don't know if that's average or not. I was also really worried they would hurt when they took them out but didn't feel it.
I staying in hospital until the drains were out but I know some people who went home with them.

I had a thin bandage covering all the way across my chest covered with a waterproof dressing so I could shower. I had really large boobs and the first time I saw myself flat it was really odd but tbh, I just felt relief that the cancer had gone. They took the dressings off a couple of weeks later.

Sorry, that was longer than I intended. Feel free to ask if there's anything else.

Sending hugs to anyone who needs them. These threads were a lifesaver for me when I needed them 7 years ago. I've namechanged since then but love seeing the names of fellow tamoxigang (as we were called then) members when I see them on threads across the boards

Hello everyone, I have been reading all your posts and you are all so brave.
I went to my surgery last Friday as I have felt a small lump in my breast a few weeks back and I could still feel it. I was expecting the nurse to say she cant feel anything but she could and has referred me under a 2 week appointment. Does anybody know is this I am seen within 2 weeks or i get an appointment letter within 2 weeks? I've not told anyone at the moment not even my husband as kind of thinking no need to if all is ok but i am scared that it could be bad news. My mum had ovarian cancer and passed away at 53.

Thanks @DuckyMcDuck - it’s really helpful to hear about someone else’s experiences of recovery - the pain, drains etc - as I don’t know what to expect. It seems everyone’s experiences are different. And I’m a bit of a wimp!

I’ve also received very inconsistent info. The surgeon said I’d be in overnight, but the letter said 4 nights. The Covid leaflet was particularly scary due to the massive mortality risk if I were to catch Covid in hospiital... Luckily NHS breast ops in my region are being done in a small private hospital, so hopefully the risk is lower there than being in a crowded ward.

I’ve got big boobs too and will be even more ‘bottom heavy’ after the op! I’m sure it will take some adjustment, but I’m most concerned about pain / complications given this is risk reducing surgery. Thanks again for taking the time to respond x

@Queenie24 you should be seen within 2 weeks. Do let us know how it goes.

@DuckyMcDuck Interesting - I've been mildly obsessed with the idea of 'drains'!

@Shrillharridan this cancer is not actually the thing that has had me the most anxious (although I have my moments - it comes and goes but I am more sanguine than those last posts probably suggest!). But I have made myself sick with anxiety about something quite different. I think many of us have certain things that hit a spot where we just lose control and the anxiety becomes relentless and escalating. In fact for me, cancer has taken away some of my other anxiety. But this is to say that stress, that is always our own creation, is a thing in itself, that needs addressing.

@Shrillharridan well done for taking action - let’s hope you get some respite from the fear for a while now. At least so you can eat and sleep a bit more. You are being so brave and hopefully now things are moving forward you will begin to get to grips with the situation. Any news of your appointment yet?

@Queenie24 welcome to the thread none of us want to be on. It’s nice here, really. You should be seen within 14 days of referral although Covid has messed things up a bit. That initial appointment will be very through and you should have a good idea whether you are in the clear or more tests are needed after you have had a mammogram and ultrasound scan. Even at the moment most of us have been able to take a partner to those early appointments for moral support. The staff are lovely and if it is bad news they will make sure you are okay.
I had a jolly outing today to get my festering ankle checked out. The lovely junior doctor understood my concerns about being at the nadir of the chemo cycle on day 14 and quadrupled my antibiotics. Now I am feeling sick but it is my own fault for asking! There was a poor lady there with a similar injury from yesterday and I was pleased to reassure her she would be much better soon. Afterwards we went home via the bakery for buns. I’m cheered by how much more mobile I am now and trying to be more useful. I’m watering the plants with a squeezy bottle as I can’t carry the jug.
Stay positive people. We are all moving along however slowly!
Top

Thank you.
I'm just on a cycle of catastrophising atm...keep looking at my kids and thinking "I'm about to ruin their lives.." :( but I have NOT googled!
Not sure whether to phone macmillan or not...they can't really help atm.
No sign of appt yet

@Shrillharridan I am in a similar position to you. 2 kids, months and no answers. I realised reading your posts that I'm struggling and I need to speak to my GP and get something to get me through. I usually deal well with anxiety but I am not getting through this. Thanks for your posts. I needed to read them. Hope you get somewhere. Massive virtual hugs from me.

Thank you seize
I'm not normally an anxious person at all so its hit me hard.
I'm just baffled as to why 3 othalmologists haven't referred me before? This had been going on for 11 months.
I've had lots of tests but just kept getting fobbed off.
It's just a horrible feeling.
Hope you get some help xxxx

The talk of anxiety has reminded me... I mentioned to my oncologist that I am having real trouble sleeping, expecting him to tell me that that would get better once I started chemo and knew what my treatment plan was. Instead, he told me that I should just have a couple of drinks before going to bed. 😳 Not sure if that is an ideal long-term strategy...

@Shrillharridan well done on phoning the GP and getting some tablets. I remember how nervous I was to admit that I was struggling with terrible anxiety and it sounds so simple just to ring when you're not suffering but I know it takes real courage. I have a weekly call from a Macmillan counsellor and I find it helps me. They can't change anything but they just listen without judgement and they understand. For me, the greatest benefit is that I don't have to consider their feelings whereas when I talk to friends I am always mindful of upsetting them and often end up reassuring them about me.

Hello all, I have been reading intermittently, sorry to see new posters here but a warm welcome to @LarGoo, @seizethecuttlefish and @Queenie24.
@Queenie24 I hope the breast clinic appointment brings good news, but as we are always saying here, knowing what you're dealing with is almost always better than waiting for info.
@LarGoo a double mastectomy is a big operation, but having it in a private hospital will certainly hugely reduce the covid risk. Wishing you very straightforward surgery and a good recovery.
@seizethecuttlefish do you have a date for your next appointment? Sending much sympathy in the meantime. Stick around here for a handhold.
@Acinonyx2 it is grim anticipating chemo for such a long time to come, not surprised you are tearful. Can't say anything helpful, but sending a big hug.
@balkanscot so sorry you have had hospital stays. How are you feeling physically after the last chemo? Very much hoping the ultrasound results are good as hinted!
@AlbertCampion congrats on clear scan! Do you feel OK about the treatment plan, was it what you were expecting?
@nixnjj you have the MRI today, right? Hope they can reassure you it's not because of anything sinister.
@TopOfTheCliff glad you had a nice doc at the fracture clinic and I hope the abs finally deal with your ankle infection.
@Lubballoo sounds v sensible to make one decision at a time re surgery. Maybe it's a bit like moving into a new home, don't do anything structural till you've lived there for a while!
@Shrillharridan it's good you've got the diazepam, hope you feel calmer very soon. I think it's really worth trying a phone call with Macmillan - I was really impressed by how calm and kind they were when I phoned them (although that was more about practical issues).

I am feeling pretty good really, still liable to sudden crashes when I run out of energy, but am eating well, and this morning I felt I could try a coffee, and then had a second one . .

Sending love and good wishes to everyone on the thread.

Thank you x
Not a good day.
The diazepam didn't work and Sheffield don't have my referral yet :(
I'm going out of my mind :(

@Shrillharridan did they say the diazepam would make a difference immediately? Who should have sent the referral to Sheffield? I am sorry (((()))

Waiting on phone call from GP. the past 48 hours have been agony. Bloods next Monday so at least a week till results which seems an eternity. If pain keeps increasing I shall be in A&E by the weekend. Stomach and pelvis is painful to touch, like being cut with a knife and have had heat patch on back all day. No temp though so not an infection

Sorry to hear that iamdone
I hope they can get you some pain relief.
bloodybridget apparently they are supposed to work within 1.5 - 2 hours?
I've downloaded a couple of audio books as I'm not sleeping.

Referral has been sent - by post!!!
Didn't realise they even did that anymore!