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

@mowly77 Thank you. I am sorry you had a return

I work in private healthcare so I think I'll ask one of the well respected oncologists there for his advice. He said it's because it was under 1 cm.

I just want to be sure it is the right thing to do - if it is then I am delighted it's 'only' four sessions!

Sorry you have been sick again Mowly I wandered about covid as there is so much of it around at the moment and I only had it once and my symptoms were quite gastric. Having said that I ended up in hospital from gastric symptoms and they said it was covid but a month later I was told I had also tested positive for campylobacter at the same time and may need antibiotics, by that time it had gone. The campylobacter is an odd one as first time it was something I had ate 10 days before, there can be quite a delay before symptoms start but I remembered some chicken that was raw from 10 days before DH had cooked me on kebabs. A GP / hospital can do a stool sample (lovely) for any food poisoning etc but think the cause can be up to 2 weeks prior to first symptoms. Though could just be a sick bug. Also are you on any medication that has just started, check the side effects. I know one person where the anti-sickness made them sick, they were a nurse so they worked it out and stopped taking it and chemo line switched them to another anti-sickness and fine. It can even be anxiety sometimes. Hope they can solve it so you can start on time or fairly near that. I got a uti just as treatment was about to start after being free for a couple of years, typical, though mine could still start on time, just put on antibiotics and it also resolved that day, phew.

Re breast cancer chemo I have been put on a 3 month rather than 18 week regime and mine is equivalent of 4 x doc. but is 12 x weekly Pax. I was given option of 18 week regime if I really, really wanted it but they felt as I was a borderline case (6% benefit on Predict, lobular, 4.6cm and 1.7cm tumours, 1 lymph node, HER2 neg, ER positive) that the 3 month one was enough, they said the success rate was marginally lower but the risks and risks that someone serious could go wrong are lower and it balances out. I was the opposite like would 1 weekly work then but sadly nope. They said 11 is pretty much same as 12 but 1, 2 or 3 weeklies almost no benefit and it accumulates each week percentage wise. I also got the Prosigna score in but that was as I was undecided on chemo and so were the team. The oncologist said they are moving to reduce chemo being offered and now trialling not offering to Prosigna scores of 60, high risk starts at 40. Mine was 44. I was a bit by that as its the high risk, chemo will benefit category and think some of it is staffing / funding pressures rather than what is optimal for patient. I do think for borderline cases then the 3 month regime makes sense but good to have it checked privately and see they are happy with it.

Just woken up.

@MissSmiley

The GIST was 18mms, in my proximal jejunum and the mitotic rate was 1.
But please don’t bother to look it up. I’m sure you’ve got more than enough on your plate sorting yourself out. Hope you’ve not had the pain again and all’s well with your scan.

@Thymeout risk of progressive disease according to that chart is 0% under 2cm and less than 5 mitotic rate

Thanks! No wonder Alpha Doc said it was a BOGOF. He'd throw it in for free.

Good morning everyone. I was diagnosed with breast cancer on Monday. I had a panic yesterday as I thought my diagnosis was ductal carcinoma in situ but it actually invasive. I got myself all worked up. I couldn’t get hold of my breast care nurse so I ended up phoning the Samaritans who were wonderful and stopped my spiralling thoughts. Feel calmer today. This is a roller coster ride isn’t it ? I’m learning to take one day at a time. Love to you all on here

Hi Mycat I was diagnosed on the same day as you of endometrial cancer. I joined a couple of FB groups and lots of people say that this first bit when you don't know what's going to happen and you're just getting to grips with all the terminology and options is really hard. I'm going from just getting on with work normally to having complete panics and feeling unable to do anything. I think it's odd too because I don't actually feel unwell, which is at odds with what is happening. What's your next step? I have an MRI today.

Its a complete rollercoaster Mycat and I have needed to call Samaritans twice, seem to be the only people you can get hold of in a crisis but even when they don't know what to say its nice to know that someone cares enough to give up their time to help you and that made a big difference to me. Macmillan can set up counselling via BUPA, I got 6 sessions, its a bit of a faff to do assessment first but worth doing though they were trying to screen out people with pre-existing anxiety being treated rather than cancer anxiety but as long as explain its cancer anxiety its fine to have pre-existing. I have session 2 on Thursday, first one I missed most of due to a massive chemo nosebleed lasting 30 mins but lady is lovely and you can change if not. I asked to change first one as she was strange and cancelled on me 1 minute before saying previous person was suicidal and needed to cancel all that day. Mine is invasive lobular breast cancer and was surgery first, then a second surgery, now chemo then radio and then hormone tablets and maybe 2 more surgeries but some people have much less just surgery and a weeks radio and its all over and done quickly. The surgery was not that bad.

Good luck with MRI Sierra Yes the waiting for results is horrible for anxiety, there are lots of waits for results unfortunately so it is a rollercoaster but at least when you start treatment you feel the cancer is being attacked and each day is a day closer to the end.

I am just after 3rd weekly chemo, 9 to go. Having lots of neuropathy issues which hope won't be permanent but could be but they are monitoring it. Steroid day today so a bit of energy. DD off to Paris today for the week. We are hopefully off to a hotel a cancer charity donated for a night next Thursday health permitting.

Am wandering what Top wrote that MNHQ needs to review Can't imagine Top writing anything that needs reviewing.

It’s a link to my big adventure and it’s fundraising for Macmillan. I expect they don’t allow begging or something

They don’t allow links to fundraising @TopOfTheCliff but you can tell us what platform it is on and some description so we can find it ourselves which is allowed.

Well just had a phone consult with new Consultant, Consultant No.6)
obviously hadnt read my notes, I had to walk her through my last lot of treatment,, scans etc. Last Consultant was really on the ball and I felt that I wasnt just another faceless patient to get through. Its really dispiriting to not have continuity. Bloods results were good though so still stable

@thereisonlyoneofme

I think it's a good sign, health wise. They're demoting you down the pecking order to leave space at the top for the patients they're most worried about. I'm down to research fellows now. Haven't seen alpha consultant since post-surgery checkup. Chemo have signed me off and it's just surgical minions doing monitoring.

Agree it's disconcerting. And a bit Chinese whispery. I go through the GP letter and check v carefully. Had to correct error that had crept in over previous ovarian surgery.

Glad your bloods are OK. That deserves a glass of something nice.

@Thymeout Hadnt thought of it that way! Ive also had to correct letters to GP several times. We have to be very proactive dont we, not so good for people that arent. If you are down to Research fellows, hope the next step; isnt down to the Porters!

@thereisonlyoneofme

Hi all!
I have had a day of highs and lows but mostly lows.
I went to the chemo unit today for my blood test and PCR but my promised letter of a treatment plan was not there which was entirely predictable really and none of the admin staff wanted to go and look for it so I just left. I then had a pre-chemo talk from some nurses and left early because I had to go to work but do have two bloody thick booklets that I'm supposed to read by tomorrow. The nurses did seem shocked when I told them that I had no idea what was happening and most of the other people at the talk are starting chemo next week or the week after. It would seem that the nurses were so concerned that they have contacted the chemo unit because the unit have been trying to call me all afternoon. They finally got hold of me when I got home at 6pm and they are now panicking because someone has realised that I haven't seen my dedicated nurse for a pre chemo assessment and I've actually been given the wrong appointment times and the scheduling is wrong.
So now I will have Herceptin tomorrow followed by TC on Friday and they've also said that I should have been given steroids to take in advance. I do at least now know who my consultant oncologist is and a miracle has happened in that they mentioned discounted parking!!! I will see what tomorrow brings but I'm still pessimistic that things won't change in the morning because they reckon that they're going to call me at 9am to firm up details ready for my mid day appointment - there goes any lie in I had planned.

Anyway on the day's highs I have passed my probation at work and have been granted a pay rise. At least now I will qualify for employer sick pay rather than the lower rate SSP I was getting. The main reason I went back to work so soon after surgery was so that I could pass my probationary period and have a decent amount of time off during chemo rather than just one week after each cycle so I'm happy.

I'm so sorry that @mowly77 & @Silkierabbit are really going through the mill at the moment - my thoughts are with you xx

Quick post to @MothralovesGojira you don't need steroids for Herceptin - but try to pick them up tomorrow before TC. They take the edge off the first couple of days. And make sure you get some take home anti-nausea pills just in case.

Going forward I would try getting all your chemo done in one session.

Terrible organisation at that place though

Hey thank you for good cheer fellow MN cancer-havers and huge commiserations to @Silkierabbit & anyone suffering anxiety and waiting too.

I’ve been in A&E for almost 36 hours now!! I’ve had a blood transfusion two bags today and still need two more bags tomorrow WTAF. but they don’t know why … could just be being so dehydrated from puking; could be a liver acting up in the mix; could be bleeding they don’t know where from. So doing me in. So not feeling super great as two bags did not change my bad numbers still something ? is 57… My fuck up of being here so long started because they didn’t assign me a named oncology consultant on admission and also this A&E is rammed and very spicy. psychiatric patients huge police presence the works …

… I was so sick and dehydrated went from not being able to keep any food then ANY liquid or meds down whatsoever over the last five days & an infection spiking my temp so they needed to IV me antibiotics; pain meds; fluids; the pain meds were out of my system so my state was terrible and literally pain 11 plus ! Ha. (note to self - please can I get stabilised; not die from lack of treatment; and see if my DD wants to try Kent test in 6.5 years!) came here in my pjs & dressing gown & too sick to understand what was going on. They let DP stay yesterday all day because I was so ill but they wouldn’t today because I think they consider me more stable. But I had IVs both arms all over yesterday and then veins all collapsed today so they had to redo one with a specialist phlebotomist and a machine that looks for the veins. And they want to take so much more blood from me tomorrow they running everything but not explaining anything; just nurses doing what was told initially and not knowing how to get me a dr to speak to.

So I was supposed to start treatment today so I am gutted. So there are no ward beds. They think I am “ok” because I look young and cancer not visible and I’m not screaming and shouting. The IV morphine just kicked in so ooh that’s nice took the edge off. That was the first time they ever brought it without me begging.

They had acute oncology guys come talk to us when admitted first of all but so delirious couldn’t take it in. Have not seen a sniff of an oncologist since so I am gutted. I won’t be able to stay in here overnight for a third time as not a second of sleep is possible. It will outweigh the ‘benefits’ of getting the IV stuff. I literally had to ring round the switch board of the hospital I am sitting in this afternoon to try to find an oncology nurse to speak too. They wouldn’t put me through but one did call back eventually. TLDR : nooooo. I just want to start treatment but I cannot as my entire system is collapsing?

Oh Mowly your poor thing that sounds totally horrific. I hope they can find out what is causing it. I was in A&E in October and it was hell on earth, thankfully mine was just 8 hours and out but they was only one doctor running round like crazy buzzer going off constantly told me nothing wrong with me and then tests found cancer, covid and campylobacter. I think you have to scream in there atm to get help or collapse dramatically or both. Probably why so many psychiatrists are needed there. Really hope they can solve it and you can get treatment started.

DD is off to Paris today by herself to stay with MIL for a week. I have not been bad today and yesterday thanks to steroid power. Video appointment with oncology tomorrow and counselling though am quite calm atm. Just worried about permanent neuropathy / eye / dental issues but kind of resigned to it and leaving it to oncology to decide. Lovely bruise has appeared on my veins so not sure how long they will hold out though may recover by Monday if I am lucky. Phoned new ESA today and they have got my claim and will write to me to say if accepting it, said with chemo I may go into support group. DH made me a lovely steak in red wine sauce with asparagus for dinner, so lucky to have him, he cooks all my meals and made me a lovely smoked salmon salad for lunch though had to have a steroid with it and got the full taste, yuck.

Well done MothralovesGojira on the promotion and better sick pay, sorry the chemo is such a shambles and hope it resolves.

Ooh @Silkierabbit your food sounds quite lovely so something must be working for me as I don’t even eat meat. That’s also exciting for your DD but I am sorry about all the downs in your life … esp the ESA admin! and totally understand your concerns about permanent damage and the calmness at same time … isn’t it a rollercoaster …Yes HELL here and hot as but I will have to wait for these bloods to go in now and they take 6 hours! Plan to leave tomorrow. Just had brainwave and emailed whole sorry saga to the secretary for my actual oncologist even though she works in another hospital. And I only got to see her once in an introductory meeting! They might have a ward bed there even though they don’t have an A&E and maybe they could try help me sort it out. Whatever the weird it is.

Hope you can escape today Mowly and get some answers. Our chemo place has its own assessment unit you can get in via the emergency chemo line. Its only a day unit which closes at 8pm but looks so much nicer than the hell that is A&E atm. Though they still suggest A&E but I have managed to avoid it so far. When I went in October in covid A&E it was so hellish in there I told DH if ever I get seriously ill I am leaving this country. Though the cancer treatment once it gets started and you argue against the delays has been very good. You can see they are very short staffed and underfunded though and feel for the staff as well. Our emergency chemo line number is online and you may be able to find yours with a google search, its answered 24/7 in theory, ours is after 5 minutes or so. Also explain to them in A&E if you haven't you are stage 4 cancer and that may help, say worried about covid and see if they can get you shifted. There was one poor cancer patient doing chemo in covid A&E with me and the doctor got her moved, took a day and about 4 covid tests and would not be amazed if she got covid whilst there, poor thing only had a cough from asthma.

Oncology video and counselling today by video. Just had confirmation that my sick note made it to ESA HQ, very glad as would not upload online despite being digital and our post is dire here and half goes missing. Just awaiting a letter to see if they accept the claim. The doctor did a 6 month sick note to mid June which was good and says can backdate 3 months. Just hope there is no issue with me being self-employed before but fairly certain I paid the class 2 NIs which seem to count.

@mowly77 I hope you can get home soon and start to feel better

I spent Tuesday night on the surgical triage unit, my surgeon was concerned about my pain levels so they did a CT and bloods and everything came back ok so they said it's still early days for the internal healing (nearly 8 weeks post op) and it's probably to do with that and constipation

My sister and niece and coming for a few days so hopefully she'll do some cooking and tidying up

Glad your results came back OK MissSmiley and hope pain eases and you get some TLC from your relatives.