Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

Enjoy the tapas weegie. Sorry it's cancer or pre cancer though at least it sounds caught very early when the stats are really good for BC. The surgery is just day surgery and it's not too bad at all.

@AGreatUsername

I was so sorry to read your extremely distressing news. It just must be so totally devastating to have been told that.

You're so young and with your youngest only being 6, it is unbearable.

Are you the person who lives in Wales and was looking to get a 2nd opinion from the Marsden? How is your treatment going, how are the hospital behaving - do you feel the care is good?

As others here have said, I know from people I have met in person that there are constantly new and effective treatments being developed and available. Some seem effective even for people with metasteses in multiple sites. I know two people who are stage IV and now have no evidence of disease. One had triple positive breast ca, with tumours in her bones, lung and liver. The other bowel ca with a tumour in her liver. I know it's not as simple as that, and that phenotypes, cancer types and subtypes vary so much I wonder if any two people are ever the same. But I am really hoping for you that there is a treatment out there that you get that is effective against your cancer.

Thinking of you. Please do keep us updated, if it's what you feel like doing.

xxx

@lucysmam

You have a truly great talent for arts and crafts. I think you must be the most fun and creative TA in the country, I really mean that.

It's lovely to hear you can go back to work soon because you've said various times how much you enjoy your job.

I enjoy reading about what you've been making and about the various things you've been doing with your DDs.

@Silkiebunny

Floof is the most wonderful, beautiful and characterful cat I've ever seen.

I 💖Floof!

Thanks, yes, it is so draining to constantly have to fight for the treatment (they had prescribed themselves on my plan).

The latest fight is the end of treatment summary. Full of errors, what a surprise (not). Radiotherapy is down as 5 days instead of 15, and one area instead of the 5 areas they zapped. Then no mention of any lymph node involvement on diagnosis despite confirmed multiple cancerous nodes. And loads more errors. I am so fed up with them. I wish I had private insurance; I'd switch hospitals at the speed of light.

At least there's a great CNS who's very conscientious and intelligent. I like her so much. She's got me the appt I needed for next week.

Struggling this evening, which is crazy. I've got the best lump diagnosis that isn't a cyst or fatty lump. Nothing has spread. The doctor really thoroughly checked my lymph nodes and there's no spread. I need a very simple operation that can be done as a day case and probably some radiotherapy to be safe.

I'm just so flat tonight. Off the rollercoaster for a wee while and just hoping for the best. This is normal, isn't it?

@weegiemum I think so, yes. (Hopefully) uncomplicated diagnosis and treatment, or not, you still need time to process what's going on. I hope it is as straightforward as it sounds to be. Can you do something to distract yourself a bit? I've been merrily crafting & listing on Vinted while I'm clearing out the house.

@SummerCycling that's one of the nicest things anyone's said to me, thank you 😊

There was much excitement today when I popped into school for half an hour, and told my EY colleagues I can go back after half term. And, several craft requests 🙈 One of our KS1 TA's has asked me to make peg dolls of her ds's Sunday League football team - I'm going to practise over the weekend.

Well, probably Sunday - my favourite colleague is taking me for a celebratory walk & cuppa tomorrow. Might be a seriously slow walk; my thighs are still feeling Weds night 🤣 Was worth it though!

@weegiemum this stage of not knowing is the worst, honestly. I didn't believe people when they told that but the agony of uncertainty is far harder to cope with than the mundane plodding through treatment once you know what is going to happen. You will find yourself up and down, flat and miserable or anxious and panicky. It's all part of the nightmare that settles once you have the results and know exactly what they have planned for you. Be kind to yourself, maybe use the Calm app? Or listen to music or whatever helps you. I like to get my hands dirty on my allotment when my mind is buzzing.

I had a lovely message from the allotment manager to let me know they were having a tea party this afternoon for Macmillan to support cancer patients. I went along and met so many kind sympathetic people who offered me help and support with my weedy disgrace of a plot! I brought home leeks and beetroot and some Swiss chard and am filled with hope that I will get that plot sorted before Christmas. It was a wholesome lovely occasion with nice cake and a tombola where I won a teddy bear. People can be lovely sometimes.

I am a bit numb about my worries at the moment. It is easier to just file them under pending and forget about them. Que sera sera!

Happy weekending to you all
Top x

It's this weird thought that there's something potentially very nasty growing inside of me and I've got to wait 2 weeks because of clinic times and days for MDT meetings and when the clinical nurse specialist is available. 2 more weeks then a few more while I wait for surgery. I'm really feeling the strain today, dh is away until tomorrow 8pm and at least I have one of my best friends coming for tea tonight.

My other solution is to knit! I do a lot of knitting and I find it helps to keep my brain relaxed!! So if I can't sleep tonight I can knit another square for the blanket I've been knitting forever as there are no fancy patterns to follow for that!

@TopOfTheCliff that sounds like a wonderful afternoon 😊 People are lovely sometimes.

@weegiemum I'm working on a crochet blanket, very slowly. I've been too hot to even think about getting it out lately! Can we see yours?

I've had a lovely afternoon too - it wasn't a walk & cuppa with my favourite colleague. It was surprise afternoon tea at a lovely local cafe with 9 colleagues and friends. 2 couldn't make it because of prior committments. They made me a banner, decorated the table & had number 18 that you fill with balloons to mark the 18 weeks of chemo. And there were flowers for me too which are currently in the kitchen where I tend to be the most. I'm feeling very loved and lucky right now 🥰

@AGreatUsername I’m so sorry to read your news. My children are a similar age to your youngest and I can’t imagine what you must be going through. My thoughts are with you and your family.

@weegiemum just to add to what others have said, the uncertainty is particularly hard. And, as you said, before treatment starts, you cannot help but feel like things are getting worse and worse and that these delays could alter the outcome. Once you start treatment, both of those worries stop. You know what the plan is the disease process is being reversed, so you can feel a sense of calm. The next point of fear (though there will be ups and downs along the way) is likely to be when treatment stops.

@weegiemum knitting is my indoor hobby along with my house plants and bad accordion playing. I’m currently trying to design a knitted highland cow hat as I had success last year with polar bears and brown bears. Think horns and long fringe! Bad weather tomorrow so I may make some progress.

I have a question for you lovely people who have been going through all this and know what it's like.

The question is - to what extent do I need to make sure I have someone there with me at an appointment to hear difficult news?

It would take far too long to explain all the detail of why I have to ask. Ultra-short version: I have autism and am crap at articulating my thoughts and feelings at the best of times. I have a husband who for various reasons I don't really want to have with me for this. That's a whole separate thread I don't have the resilience to compose.

I had a CT scan on Wednesday for the purpose of staging (and checking for others elsewhere throughout my torso) following a tumor being found in a colonoscopy the week before. I had a text message through saying I need to come into the hospital for an appointment on Tuesday morning. I assume this is to tell ne what the CT found. Of course it could be good news - it may be that the CT has found that it's not too bad.

I don't have very many friends. For those friends I do have, I know I am not among their very closest friends. I generally do my best not to be too needy because I won't be among their own priorities. These are friendships on the level of meeting up for some drinks and a chat once every 2 or 3 months. All family live at least 2 hours away.

Shall I just pull up my big-girl-pants and go to this appointment alone, or shall I try to ask one of these friends to take a morning off work to come with me? Or do I need to ignore all the reasons I don't want my husband there and take him along anyway? Or do I ask one of my sisters to drop everything and travel here for the day? I need to decide now as if I have to ask someone I should do so this morning.

Thank you.

@HohiyiKozbevi There’s no right or wrong. I went to my initial results appointment alone, because I was utterly convinced it was all going to be a false alarm. The first thing the consultant said was ‘are you on your own?’ Which was when I knew it was bad news. The nurses asked if I was going to be ok to drive home and I was left with the distinct impression it was ‘expected’ to have someone with you. So I took my husband to my post surgery results appointment. But tbh, I don’t know whether it made things better. If someone’s with you, you end up thinking about their reactions and managing your own accordingly (or I did). I was in a state for that one though, and it might not have been wise to drive. But logistics permitting, do what feels right for you, not what others expect.

@HohiyiKozbevi forgetting about the distance away your sister is or how close your friends are, what would you actually like to happen?

I'm normally a very self-contained and self-sufficient kind of person, I knew I wasn't going to go to pieces at my bad news appointments but I wanted my husband with me at them so he could hear first hand what was wrong with me and what was going to happen and do he could ask any questions he had.

It's also helpful to have someone with you as you are likely to forget some of what is said. However, you should find that in addition to the consultant there will be a colorectal cancer nurse in the room who is taking notes and who will have a separate chat with you afterwards. You should then be given her number and you will be able to contact her by phone if you have further questions.

So really, you should what feels right for you. If you want the support of your sister or a friend, don't be afraid to ask them, but equally, if you think you'd prefer to go by yourself then don't feel you have to take someone with you.

@HohiyiKozbevi I am an independent soul with a DH who hates hospitals. For the first appointment I cycled in cheerily with no idea I was going to have biopsies and serious conversations. The radiologist made me phone DH to come and fetch me and my bike. They like you to have a companion for the good news/ bad news but it wouldn’t be compulsory. I find I go along alert and capable and get flustered by trying to take in details. I think recording the conversation on your phone would be a huge help and wish I had done that in the past. The specialist nurses are great and I have had to phone them afterwards to ask them to go over things I only took in superficially and processed later on. They also give you lots of helpful leaflets in my experience. That helps flesh out the details.
There is no right answer so just do what feels right for you at this time. And remember you have an invisible army behind you that is this very special thread and its followers. We have your back!

@HohiyiKozbevi just to echo everyone else really - do what feels right for you. I like a second set of ears with me, don't mind who it is - I've taken my dad, and the girls dad, and dd1 came to one appointment with me.

I also take a teeny notebook and pen - if anything's mentioned that I want to go back to, I write it down (just enough to jog my memory) then go back to it.

@HohiyiKozbevi There's no right or wrong way to do this. Everyone is different. For me, I would find it stressful taking someone with me, so don't. I go alone, and always record the conversation. I take a notebook and pen too. That way, I can jot things down, and if I have questions afterwards, and I always do, I can leave a message for my BCN (breast cancer nurse) who phones back and we then discuss. You should be given details of a similar nurse for your particular cancer.

Additionally, after each appointment, you will receive a letter from your consultant with a summary of what was said, and also the next steps/plan. This can be useful for following up with questions too. Personally, I prefer to listen while the consultants talk and then ask questions at a later point. That said, once I knew I needed both radiotherapy and chemo, I was able to formulate a list of questions in advance of the initial oncology appointment and ask face-to-face.

Ultimately, do what feels right for you. This might remain the same all the way through or your needs might change.

@AGreatUsername Oh gosh, am so sorry to read your news. Sending lots of love and all good wishes ❤

My DH comes with me. He’s not in the least medical and has no clue about health

The reason it’s been useful is that he now realises how serious the situation is - the oncologist was very clear last time that this cancer will come back. (Personally I think he could try being a bit more positive).

I don’t think my DH would have taken that info in so much if I had tried to communicate it myself. Our friends and family assume this is a once off battle - and we know it isn’t.

So I find it helpful for someone else to hear the info first hand and share the burden.

I went to most appointments alone, for me I don’t think it made much difference. My daughter did come with me for the first oncologist appointment and I was glad she did. But really, I think it depends if you have anyone who can go with you at that point. Hope it works out well for you.

I was given my diagnosis, when I was alone, as I’d actually gone in to just have polyps removed, because nobody expected my biopsy to come back with cancer, and they prepped me for the procedure and then told me that I wasn’t going to have it and I found cancer. My friend was coming to pick me up but not for another hour, so I had to sit by myself in the waiting room.

I have taken friends since then, though close friends. I also have an app on my phone called Otter that I do pay for because I use it for work, but it records and transcribes at the same time, which is really useful, because then you don’t have to go through and listen to it, you can just read it, it’s not perfect but it’s good enough to find a bit in the text that you might want to listen to again. There is a free version, which, if you’re only using it for medical appointments should be fine, it’s really useful.

Sometimes it’s felt a bit pointless having somebody with me, but probably when you’re not quite sure what the news is going to be having someone with you even the waiting bit is good. When I had an oncologist get angry with me for questioning her and basically throwing me out of the room it was so important to have somebody else experience that who could also go WTF, no, it wasn’t you!

I think if you get really bad news, you can kind of go into shock and your brain is protecting you to begin with. When I was told by the Royal Marsden that my hospital of missed things on my initial scan and got my diagnosis wrong, I don’t think I could speak all the way back home from London to the Midlands, but having somebody with me, just there was reassuring. I’m single though, and I have been times when my two close friends haven’t been able to go, and I have wondered whether I should take somebody else, but I have decided that it would be better to go on my own than to be with someone who I might not feel that supported by.

Thinking about it some more, now you've said about taking friends Sierra, I have also taken my closest friend too, right back in the days when I was clueless as to wtf was going on. & she is chief hand holder and moan listener now, 6 months down the line!

@SierraSapphire Thats awful - how the oncologist treated you. I’m sorry - bit struck dumb. Don’t know what to say.

I've gone to diagnosis consultation with dd3 but left her in waiting room, it was just lovely to have someone who could sit with me and not be overly chatty! My brother came another time, and again he be sat outside and let me absorb and process before asking any detail.
There is no right answer, though it depends on how you feel, and if you don't know at the moment I'd err on the side of caution and take whoever you have available and who will stress you least.
CNSs have been fab and always available for questions after as it's a lot...such a lot.

Jesus ..hmm that sounds awful.