Cancer Support thread #78 - Newbies welcome

[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

Had my first Maggie’s session today. I kept bawling my eyes out for 95% of the time. I go back on 23rd April. It wasn’t particularly revelationary but I am sure it’ll get better.

All the good work this morning was soon wiped out by the letter announcing the date of my bone scan: 28th April. I went into a complete tailspin afterwards. Somehow managed to crawl back up, enough not to hyperventilate at the thought. At the moment I feel as though I am living my life through a thin plastic filter which filters everything slightly hazy. By the start of May I will know. I am SO scared.

Maggie’s building is fab though, very lovely, with relaxing gardens. Really impressive.

@Liz, @Acinonyx2 and @thereisonlyoneofme thank you so much for your reassuring words.

@JeanLannes I wouldn't think they are 'preparing you for the worst' at all. Doctors are very upfront and just say it as it is, no sugar coating in my experience so I would think this is just their bedside manner. At the start of all of this I would second guess everything and it proved fruitless but you are bound to be like this, you've had a horrible shock.

Hello! Just popping in to add to the general words of reassurance about surgery. I had never had a GA before my two ops in the autumn, and I was terrified - I wrote letters to my DS and DH to be opened on the event of my death, I drew up a living will - I definitely catastrophised! But it was actually ok, and although having a drain afterwards was a bit unpleasant, I surprised myself at how quickly I acclimatised to it. You don't really see that much as the entry point is covered in dressings, which helps with the squeamishness factor.

The biggest thing I found was that I was absolutely knocked out by the GA - I was knackered for a good week afterwards. But pain management was fine - they load you up with drugs and tell you to just keep taking them as long as you need. Wishing you the very best of luck, @Acinonyx2 and @FizzyOrange.

I was also really interested in what you were saying about writing, Acinonyx. I write for a living and am very nervous about returning to work - I have found that my ability to write anything other than my blog has just vanished. How did your writing go yesterday? Did you find it easy to get back into the flow of things?

Hi, I'm a bit lost and hope you guys can help me as my BC nurse is not sooo helpful....
I had a masectomy and rebuild 5 weeks ago, and very happy, recovery great, all good. I had my sample come back from America to suggest that my grade 2, 22mm lump had a ror score of 4. Is there a way I can find out the overall benifit of tamoxifen for me? I did not have rads or chemo. Interested as I have heard people mentioning the overall benifit of tamoxifen as a personal percentage. Hope this makes sense! X

@balkanscot chances are the scan is just a precaution but it's rubbish having to wait so long as the scanxiety is bound to snowball. I can see how this will be a general issue going forward - always waiting for the other shoe to drop.

@FizzyOrange I'm getting calmer and more resigned - I think because there are no ifs and buts - I know what and when the surgery is and for sure it is going to happen and that's that.

I've had several GAs for minor things so that doesn't concern me - but I've never had 'proper' surgery'.

@AlbertCampion well it did not go to plan at all and I wrote not a word. I have a different tiny writing job - and I did manage a couple of pages for that end March but found it really taxing. Now I have an academic piece I'm reworking/updating and I am reeeaally struggling. It's a very complex issue that you really need to get properly immersed in - you can't just dip in and out now and then. The weird thing is - I wrote the original myself and now I struggle to understand it which is quite scary!! I said I'd get a draft done before surgery well no- way that's going to happen! I have another bigger writing project stuck behind that one in the queue and I feel they are looming over me - yet I usually like doing this.

I actually taught a couple of classes online (in my sensible wig) at the weekend which was good actually. I also have a small business plan which I can't decide if this is a thing to put time and energy into (when I have any) in my situation or not.

My mind just pings around all over the place trying to think how best to use my time - which things to pick up and which to drop. I don't know what this new chemo will be like. I've searched other forums and it's a really mixed bag - some people OK some really poorly - same old same old. By June I'll have done a couple of cycles and have a clearer idea. I've told my main employer I'll go back in June - then I have to think about my collection of smaller jobs/projects.

dh lost his main income due to the pandamic and should pick up replacement contracts this year but currently they are in the bush rather than the hand so I really need to get back to work.

dd15 is just starting her year 11 assessments this month and I want to try and do something to support her as she's a bit complacent about the whole thing and I fear she might be in for a fall. I've just been so out of it.

rrf - hope someone can help - I'm not ER positive myself.

@JeanLannes good luck this morning and let us know how it goes. Big day for you.

Morning everyone. I'm still lurking on this thread and I have a phone appointment with the oncologist next Monday. After a week of not having to worry, I'm starting to stress about what may come next.

@rrf I have a similar cancer to yours. A 1.2mm lump also removed around 5 weeks ago. I had a lumpectomy. There was no sentinel node involvement and a sample was sent off to the America. My "score" came back at 16 and the consultant was able to tell me in percentage terms what the chance of recurrence was with and without chemotherapy vs radiotherapy. I am also on Tamoxifen although they are checking my menopause status (I'm 54) so that may change.

I'm not sure who you can talk to but perhaps you should try your original consultant/surgeon?

Oh gosh, @Acinonyx2 what you're describing is exactly where I am at the moment. I can concentrate for a twenty minute stretch but then I just lose the thread completely. I am so worried about returning to work because I miss it like mad and think it would be good for me, but at the same time I am desperately worried that I'll make lots of stupid mistakes and just won't be able to do it. I'm also supposed to be writing a novel as a sideline and my agent has been very understanding so far but I am really worried she will let me go if I don't produce something (am already waaaayyyy behind deadline) which would devastate me. But I just have no creativity in me at the moment - writing fiction seems impossible.

I don't know - I think the doubly-postponed final
chemo has sent me into a real tailspin. I know that I need to prepare for joining the real world but I just can't face it all. I am scared that I have lost the ability to do my job at all.

@rrf I've not heard of ror scores before - what does that measure? Sorry I can't be more helpful!

Blimey I’ve just typed a long post and lost it somehow. Not very used to mumsnet.

@rrf - sorry not to be of any help. Hope you get some answers soon.

@balkanscot - keep going with Maggie’s they will be helpful in the long run and good luck for the bone scan.

@Acinonyx2 - thank you. Today really does feel like the start and I suspect I will spend most of the appointment in tears. Luckily DH is here to come with me. He works abroad a lot so now sure how we are going to deal with that.

I have pains in my legs. Normally I would just brush it off as I like walking but a diagnosis of cancer seems to have put a different spin on everything in my life now. I keep telling myself if I had a car accident or Heart attack I wouldn’t have the ability to plan anything or get affairs straightened out. It seems bizarre that I wandered into a clinic a week ago today thinking it would be nothing too serious.

Good luck to everyone chasing appointments or sorting things out today. I will update later. The sun is shining though which strangely does help.

As an aside - how do you all keep your friends irl kept up to date? A friend has offered to set up a small WhatsApp group. I don’t mind certain people knowing but I’m really struggling with dialogue at the moment.

@JeanLannes I started a blog to keep friends and family informed, which works in some ways, but also doesn't stop people checking in, tbh. I also find dialogue difficult, mostly just because it is so wearing to say the same thing over and over!

We also have an immediate family WhatsApp group, where I post updates.

Best of luck today - great that you can have DH with you.

Thank you. I met the oncologist today. He confirmed why I expected. They can’t tell me what it actually is until the scans but he should have all the results next week. Within lymph nodes it can be cured, outside it can be treated. I would say I’m expecting the worst but hoping for the best. I wish I hadn’t had the pain in my legs for the past few weeks. He also said he would refer me for some counselling to help with the shock and the self blame. @Acinonyx2 like the surgeon he asked that both DH and I have the vaccine ahead of chemo so I hope you managed to get some success in that area. DH now away until the weekend and I feel in equal parts angry/ terrified/ helpless but can’t face talking about it with anyone other than DH. He has broad shoulders but is also shocked. This waiting time is just the worst...

@JeanLannes I've asked previously and my dr has no opinion on timing of the vaccine! In fact I only actually met my oncologist a couple of weeks ago - after chemo. I've just had a string of different people before that. It's not been ideal but I guess they were overloaded.

I expect you will be on the same chemo I had (if you are UK NHS?) - the only variation is which way around the 4 and 3 cycles are. Do you know what you're starting with?

I told a few key people early on - it's tedious otherwise to have to fill in the backstory. But there are a lot of people not local who still don't know. It's not a secret though. There are a small number of people I talk to regularly - my walking buddies especially. I'm happy for them to pass info as and when rather than me doing it. There aren't really people getting regular updates as such though - just now and then.

People (including family - but my family is pretty odd...) do sometimes come out with some annoying comments although I try to keep in mind that they usually mean well. I'm often astonished at the way people tell me stuff about my cancer without actually knowing anything much about it - as though all cancers were the same with the same treatment and outcome - like their aunty so-and so for example . I often wonder what it is I want from these conversations - I'm still not sure.

I had some other symptoms/pain that were so indicative of metastases - I could see by the drs face even she though I was a gonner - but in fact the CT was otherwise clear. Try not to catastrophise every ache and pain - we all do it though!

@AlbertCampion not getting done with chemo is quite enough to send anyone bananas. Some of this is mental chemo fog - but a lot I think - since I'm recovering now, is just plain mental stress - feel like I have a strong form of ADHD and can't focus - yet become obsessed, temporarily with various plans, issues or schemes.

Writing requires a certain focus and feeling of 'flow' which is hard to achieve just now. I think you're asking a lot to think you can get to that place right now but it will come back. I'm sure your agent will understand but I feel your pain there. The chapter I need to do right now is for a multi-author book so deadline is immovable.

As for the bigger project . I try to motivate myself by thinking it would be nice to get it to press before I die rather like idly wondering whether I will outlive my cats.....

@Acinonyx2 oh yes, I am with you on people telling me about my cancer and I try to remind myself that they mean well and until all this happened to me I thought all cancers were the same, just in a different place. I can understand you worrying about outliving your cats, I don't have any pets but was putting my shopping away the other day and seriously wondered if I would outlive the sell-by date on my teabags...

@Liz, @Bridget and @thereisonlyoneofme for your abdominal surgery, how limited were you in terms of activity when you first got home and how much pain were you in? One of the ladies on my FB group is still taking regular painkillers 3 weeks after her surgery and now I am very worried. I have been told to not lift more than half a kettle in weight but for example, can you get out of bed and off the sofa relatively easily? I find I have a particular consuming worry each day and this is my focus today.

Just read through the last few pages, I haven't got the oomph to catch up properly atm but just to answer your question, @FizzyOrange, I don't remember having much pain at all after I got home - but I was in hospital for 9 nights and had a morphine driver for the first few days.
Greetings to everyone else, I'll come back soon but am extremely fatigued, sleeping lots

I've PMd you @FizzyOrange x

fizzy I am not taking any painkillers at the moment, I took paracetamol four times a day for the last two weeks, although I dont think it would have mattered ifId cut it down. I found getting out of bed ok, I rolled over to my side then put feet on the floor. The Occy Health lady in the hospital told me about a sort of hoop thing you can get with a lever that helps you get out of bed, didnt actually get one myself, but you could ask. My sofa is quite hard so its been OK getting off it. With regard to lifting a lady on another site was given an NHS abdominal hysterectomy leaflet that said after 3/4 weeks you can lift 1.5kg each hand ? Do dusting, and cooking. If you live on your own Im like me Im afraid the not lifting more than half a kettle full is not practical at all .I did buy a travel kettle, but things like a bag of sugar weigh as much if not more I think.

Thank you ladies xxx

@thereisonlyoneofme I did think that half a kettle was a bit unrealistic too and have been 'judging' the weight of various everyday items and many seem heavier than that. You've all given me a lot of hope so thank you.

Will the hospital discharge me with a giant box of paracetamol? I am thinking 2 tablets 4 times a day will mean I get through a box in 2 days.

@FizzyOrange They definitely do not prescribe paracetamol now on discharge. I’d stock up as much as you can in advance.

Morning (just about), I have my final night of trying to sleep with drains in tonight. I cannot wait to be rid of them and be able to shower.
My hairdresser washed and dried my hair yesterday which was wonderful but I need to have more than a strip wash. I still have pen on me from the surgeon marking up before the operation.

@MrsPnut it will be the nicest feeling when you can finally have a shower. Before Christmas, I had 5 nights in hospital having ascitic drains done and could only have a stand up wash too and I felt revolting. At least you have lovely clean hair, that was unwashed for me too!

Just bobbing up to say that I saw my oncologist today and have been told that all cancer was removed at surgery & the lymph nodes they took are clear too. I’ll be having radiotherapy and will be on Kadcyla for 14 cycles to hopefully prevent it coming back. Kadcyla rather than just Herceptin as there was still some cancer left after chemo and Kadcyla apparently has better long term effectiveness in preventing recurrence for patients in those circumstances.

Best wishes to all of you facing surgery. I don’t have anything to add that will really help, because I know it doesn’t! But, my own experience was that the anticipation and my imagination of what was going to happen was far, far worse than the reality and I sincerely hope it is the case for you. And definitely stock up on the paracetamol for home as you don’t get given any on discharge.

So, thank you very much for the calm, sage advice I’ve received from people here. I’ll go back to lurking around now - seeing as I’m no longer a person with cancer. I’m just someone with one boob and shit hair

@merlotbythefire - I'm going onto Kadcyla too so perhaps we can occasionally exchange wrt our experience on that in future.

@MrsPnut did you have the double reduction surgery? I'm dithering about it and asking to talk to some more about it. How have you found it - e.g. having the surgery on both breasts? How much is the reduction expected to be?

@Acinonyx2 I did have a double reduction because otherwise I would have been seriously mismatched. I have gone from a JJ cup to about a DD/E The size won't be known for a while but they are very small indeed compared to before. The surgeon also lifted them with the reduction so I can no longer tuck them in my waistband.

As I said before, the only bit that has hurt is the lymph node removal site and I would have had that anyway.
The other side reduction hasn't really hurt after the immediate operation and I have only had one drain in on that side. I had morphine for a couple of days and co codamol for a day or so more. No painkillers since Sunday and not really needed them.