Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

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@AGreatUsername oh dear I'm so sorry to read your update, it's not what you want at all and now you have to face the awful wait which we all know is so difficult. Am I right in thinking your CA125 normally runs high and no cause has been found? I do hope the same conclusion is drawn this time around Xxx

Yes, it has risen steadily through chemo, last one in December was 620 and this one is 733. I had a clear scan in March. The nurse said she has never known this happen before, funnily enough being a medical freak doesn’t make me feel any better. I have sarcoidosis, picked up by calcified chest nodes on CT and currently inactive according to thorassics so I am wondering is some sort of autoimmune issue is causing the inflammation.

I learnt something new today, I learnt that an ECG is not an acronym for an Echcardiogram, the two are very different, the former does heart rhythm, the latter is an ultrasound of the heart and shows the structure 😁 is the requirement for an echocardiogram before 1st appt with oncology a common one??

I've read that the CA125 picks up any inflammation, nothing to do with OC. One forum I was reading had a lady with gallstones as the cause of hers running so high. A friend of mine has an autoimmune condition which causes awful inflammation in her joints and spine, for which she's had a recent MRI. I've just had to look up what sarcoidosis is and it certainly does sound like a logical explanation for your rise.

@AGreatUsername hopefully the waiting will pass quickly for you!

I went allll the way to my appointment today, and then waited almost 2.5 hours to have a perfectly pleasant check in with a pharmacist, which could have been done via telephone. I even got eye rolled when I asked, after 2 hours, if it would be much longer, because I was hoping to get back to a school staff event at 3pm.

He did talk through what happens when I go back, wrt being 1-1, which was useful. & poo-pooed the idea of supplements for hair growth. He did mention that it's unlikely to fall out again though, but likely to grow veeeery slowly for now.

Not impressed with today tbh after being railroaded into taking the appointment. I get why strikes are necessary & do very much appreciate the speed & efficiency with which my situation has been dealt with, but, it was really a waste of my time and theirs today, as well as bus fares x2, since it coulr have been done much more efficiently.

Anyway...moan over. I did make it back to work & had a lovely chat (and small pimms) with my colleagues, and held the new baby 😊 . One of the dc has given me a card and gift, via another TA, and then I saw him on the park so had a cuddle. Very much looking forward to going back! They've loaded me up with craft supplies to keep my brain from melting too 🤣 one teacher forgot her peg people though, & mine don't have hats, so I don't think I'll be doing what she wanted 🤷‍♀️

@AGreatUsername - I'm sorry, that's a long wait and really crap.

@lucysmam - - what a frustrating appointment! But glad you made it to your event in the end.

@Scandimandy - that was news to me too, when I had my echo. it was probably explained to me but there was such a lot to take in it had passed me by. I can't remember what your treatment is, but for me it was because the chemo drugs I was on can cause heart damage, so they do an echo as a baseline before you start, and then check again when you finish, and then again a year later. It took a while but wasn't unpleasant.

@Scandimandy i had to have the echo too, can’t remember if it was because of the chemo the immuno or both.

I’ve recently had a mastectomy and have an appt on 2nd august to see oncology to decide whether chemo required and they requested the echo so assume it’s for a baseline then even though they’ve not decided if chemo is a go or not yet!

@Scandimandy my echocardiogram was mainly to check there was no fluid around my heart after the ascitic fluid had been drained, and also to try and determine whether the irregular rhythm was anything of concern...I'm guessing not because cardiology have never followed it up 🤷‍♀️

I had regular echo scans all through FEC-T/Herceptin treatment and happily they were stable and normal. When I was facing more EC I had a routine scan before starting to make sure my heart was okay. None since but I am well so no need.

I'm so bored! Ive got my feet up and am doing nothing except mucking about on the lap top. I wish the stupid blisters would heal!

Sending strength to all those who need it
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https://lucygossage.com/my-reasons-for-striking/

This is a heartbreaking read and we all recognise the world she is talking about. Lucy Gossage is the Oncologist who started the 5k your way movement too. What an amazing person!

@TopOfTheCliff thank you for sharing that - really heartbreaking. So sorry your feet are still so troublesome- but thank you for all the support and info you share on here. You are an inspiration- your journey around the uk last year kept me going in dark days of treatment.

Glad you're up and about after surgery @Whattodotomorrow

I had my MRI tonight and want to thank you all again for explaining it and making me laugh/relax about it. I feel daft for worrying now - as hospital appointments go it was easy, painless and not worth worrying about. I got capital extra to listen to, although I couldn't hear it most of the time. The noise was definitely techno-y!

Back onto the treadmill of waiting for results now. No idea how long that will take!

@TopOfTheCliff thats a really powerful read. I live in Australia and have a friend in the UK with stage 4 breast cancer. DH and I were so horrified when it took more than 8 weeks for her to receive the results from a scan to determine if her chemo was working. So she carried on with the treatment for that extra 2 months as nobody had the information they needed to make a decision. Fortunately they got the result they were hoping for, but with so much extra stress.

I wrote a long email to my hospital to complain about about my final chemo session and after reading this there’s part of me that thinks I she grateful for the system we have in Australia. But I purposely chose a specialist cancer hospital that promotes ‘patient centred care’ and I very much received doctor centred care which caused me so much unnecessary stress and upset for my final treatment.

It all stemmed from a locum because my lovely oncologist took a week of holiday. The locum was supposed to have a zoom appointment with me on Wednesday of last week to follow up on me after my hospitalisation the week before and check that all was ok. Then I was due to have my usual in person consultation with my oncologist on Wed morning this week followed by my final chemo infusion on Wed afternoon. Without consultation the locum moved her appointment to Friday last week so I had to cancel a lunch with friends that I was very much looking forward to. We had what I thought was just a checkup of my symptoms that put me in hospital- all good. She did mention my chemo tablet dose would be reduced and she said by a greater amount than my oncologist had indicated but I just made a note to discuss it with my oncologist who always goes through the pros and cons with me and it very much feels our decisions are made jointly.

It’s a pretty anxious time heading in for chemo after the last dose put you in hospital so I’m already much more stressed than I had been for any previous treatment. DH and I turn up for the oncologist appointment with a list of questions to be told I don’t have an appointment! The locum had unilaterally decided to cancel it because it wasn’t medically needed in her opinion. And nobody told me! So I’m there 3.5 hours before my chemo appointment and I don’t know what my tablet dose has been reduced to or what the consequences of that might be because nobody has discussed it with me. I’m sure my oncologist would have squeezed me in but the receptionist was just focused on being a gate keeper saying I didn’t need to see her and would be ‘wasting my money as they would have to charge me’. I think that’s my decision to make, not his. So naturally I burst into tears and informed him this was not patient centred care! DH wanted to stay and argue but I was so upset and there was a line of people forming which was embarrassing so we left. End up driving home - an extra hour round trip but more comfy than the hospital cafe. DH called to complain again and was prevented from speaking to my dr and I was told dismissively that the nurses could answer any questions. I don’t think nurses can explain the pros and cons of reducing your chemo dose!

Ironically I instantly felt better when I got into the chemo chair because the nurse could tell I wasn’t happy and just put down all the gear and pulled up a chair and got me to tell her everything. She was so empathetic and totally understood why I was so stressed. I showed her my toe which was looking infected (a new symptom that had popped up very recently) and she decided it needed a medical consult so she photographed it and we had some laughs about much she’d get for it on a foot fetish site. The dr on duty was super fast with the response and I was cleared to start treatment. I discovered that my tablets have been reduced to the lower amount by the locum where I’m sure my oncologist would have gone for the higher dose as she likes to go as hard as possible as long as the patient is on board (I am). So I’m really unhappy about that and it was the basis of my complaint, as well as the dismissal of my emotional health from a facility that claims to be holistic. I don’t know if anything will happen but hopefully the locum will get a bollocking for cancelling appointments without notice and making clinical decisions without including the patient.

Gosh sorry that is so long, obviously I am still processing! That’s definitely one for the rage room.

That is so horrible to read. I have been so so lucky that I live very close to an amazing cancer centre and my treatment has been exemplary- but I know it is not like that for everyone

@Remaker you have had a torrid time! I hope you feel better for getting it all down in black and white. A well worded complaint will make you feel you have a bit of agency. Feel free to use the Rage Room though.

@thesandwich I look back on that trip like a fabulous dream. If anybody wants diverting look up my blog at @ BBBBBB2022 on FB. I sailed solo round the UK from Devon via Orkney, Shetland and then Hebrides then down the Irish Sea to Wales and over to Devon and Cornwall and home. My husband cycled along the coast and met me every night. We raised £12000 for Macmillan Cancer Support and had a blast! It made me very happy but a month later I found cancer no 2.

Don’t forget it’s Friday Virtual Afternoon Tea tomorrow.
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@bringonyourwreckingball I’ve had fantastic care for 5 months, just so upsetting that one person brought it all undone right at the crucial last step because (IMO) she wanted to make herself feel important. With that kind of attitude towards patients she should find another speciality - oncologists need to be excellent communicators. If you want to do as you please with little input from the patient just become a surgeon and wield your scalpel on unconscious people! Actually that is doing my surgeon a disservice he has a lovely bedside manner and was heavily involved in my post op care, really encouraged me through the worst of it, talks to me as an equal and boosts my ego about how well I’m coping.

Oh gosh @Remaker that definitely sounds like a legitimate complaint. Don't let comparing to the UK stop you.

Is it afternoon tea? If so, I'll get some scones in the oven.

I had an awful experience on a number of occasions @Remaker but I decided in the end not to complain because of the emotional energy it would take, I didn't feel it would make a difference, and these were people of need to continue to see, but I guess it's a bit different if it's a locum you're complaining about rather than permanent staff. It's pretty sad though that so many people said to me that it might be a waste of my energy.

@SierraSapphire a good friend of mine works at the hospital and she encouraged me to complain as she’s seen a lot of issues caused by locums. And most people don’t want to make waves as they are concerned about their future care. The plan for me is to be handed back to my surgeon for ongoing monitoring so I’m in a good position to give feedback. And I’m not complaining about my oncologist anyway, though her staff could use some empathy training and their system needs looking at. Cancelling an appointment without informing the patient is very poor.

I nearly put in a formal complaint about a radiologist who made me cry last year. After discussion my BCN arranged a chat with another consultant who took me through all my mammograms and scans and listened to me. It was very helpful and I decided to let go of my grievance as it was more a cultural gap than a deliberate hurt. I’ve seen the first consultant since and she was kind to me. I think sometimes they are just having an off day and if it coincides with us feeling fragile then it all goes wrong. It’s a tough journey and no mistake!
Feet still up although I sneaked out to see the Church Flower Festival which was fabulous.

I'm just in from chemo 10/18, then lunch with dd1 again. I've downloaded the Mypathway app & am a bit baffled to see that I attended a radiology appointment on 18th July at 3am on there...I didn't 🤷‍♀️ I presume it's a glitch rather than something that's been booked & I haven't been told about, although booked & not discussed/told is a possibility.

My beads and glue have started arriving for the Eras bracelets...so far 10 book charms (Story of Us), and glue for Lover 💗 heart glasses 😊 I'm so impatient I went hunting for beads on the way through town but there's not much to be had 😢

I have my ginormous (or to use dd1's new word, hunormous 🤣) cake ready for with a brew later on. Well deserved treat!

Hope everyone else is having an alright day!

I am home! Finally got discharged at 9pm yesterday without my meds as they couldn't get them so waiting for them to call me and I have to, hopefully, go back to collect them.

I have a date for my next surgery, August the 2nd.

Does anyone have any advice on how to deal with drenching night sweats whilst in hospital? Every night I was in there I was soaked to the skin, wet hair, the lot, and it was very difficult to do anything about it other than try to lay on a dry bit of bed with no covers till I air dried.

Well done @MyNamesGaryAndImAddictedToChips and no I can’t think of any better plan than to lie in a draft until the sweat cools and dries.

I have had a nice frothy coffee made by DH with some lemon drizzle cake this afternoon and drank a toast to us all. May we live long and prosper!

@lucysmam i have no idea what you are talking about but it sounds very creative. I will attach a picture of our entry to the church flower festival done by my talented friend.

Feet up and resting now 😇

I love that ship. My DM was a church flower arranger, and I have happy memories of going to flower festivals with her.

I have been working this afternoon, so no cake here, but I have a pot of left over egg whites in the fridge and am going to attempt to make some pistachio friands tomorrow. Meanwhile, I have bought myself some non-alcoholic aperitivo and will raise a glass this evening to you all and your sorrows and joys, and Top's recovering feet.