Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

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)

@BitOfFun I'm furious that your CNS said that to you! Have you got anything distracting planned for the weekend? (I'm confined to the house now until my surgery and have a pretty unachievable amount of knitting and sewing in mind here). Thinking of you and sending much love x

I'm so glad this space is here for us all 24/7.

Well I've just done a stupid thing. I was wondering if the fact I've had a lung metastasis means my cancer stage has changed, was 2 at original diagnosis. So I Googled and it seems like it could be stage 4, according to CRUK. But the lung tumour was tiny! I have a phone oncology appointment on 17th but would love reassurance before that. Wonder if it's worth calling the CNS.

OK have calmed myself down a bit - I can see it doesn't really make any difference, my consultant said a while ago that I could have years and that is still the case.

sorry for panicky post!

That panicky feeling is totally understandable @Bloodybridget! I think you've already reached the right conclusion though, that "stage" is not the main thing regardless. My oncologist got a bit frustrated with my early obsession with stage and got me to think about prognosis as related but different. I got in a bit of a panicky state myself last week about an appointment (I wasn't sure what it was for and noticed, at about midnight, that the letter said I could bring someone with me I immediately jumped to worrying it was bad news). I am not sure i will ever reach the stage of being able to avoid the panic of these things xx

@wheresmymillionaire can you message your GP?

@BitOfFun am shocked at your phone call, I didn't think they were allowed to do that.

@Bloodybridget try not to google like me. I asked my nurse yesterday for my stage but when she looked at my histology it nev

Posted too soon, silly cánula.

it never has been given a stage.

Big wave 👋

HC x

I went for the results after my 2nd operation this morning.
Good news I'm cancer free. They had removed all together 30 lymph nodes, cancer was only in 4.
Lump in breast is gone. No more operations thank goodness.
Bad news I'm being referred to Christies Manchester for chemo and other treatments.
Will be first of all have a CT scan.
Then Bisphosphonate followed by chemo.

Hi all,

A friend sent this and it resonated - hope you can view:

www.instagram.com/tv/CK4vo0GMcil/?igshid=nl6b5kcut6f3

First outing that isn’t a hospital in ages! A run in the car round some picturesque farm buildings, with a stop for a flask of hot chocolate. Met these little fellas on the way!

@Noidea2114 fantastic news. Good luck with future appointments.

HC x

Oh great photo @Bitoffun, you glamourpuss! I do like alpacas.
@Noidea2114 that is v good news re lymph nodes and breast, of course it's hard that you have to go through chemo.
Thanks to @Humphreyscorner and @Lubballoo for kind messages. I really am ok now.

@backformore yes, I liked what she was saying.

@BitOfFun omg I want a chocolate one in my garden, I would call him Clarence. Looks like you had fun 🤩

HC x

@HumphreysCorner and @BitOfFun Swit swoop you two. Looking great ladies. xx

@Noidea2114 Great news.

@Bloodybridget and @Lubballoo Just have some hugs anyway.

I’ve had a week of appointments this week, saw the breast surgeon on Wednesday and I need a new mammogram and ultra sound but the plan is to do a lumpectomy in my left breast and remove the lymph nodes but also reduce my right breast to match at the same time. We had a conversation about nipple preservation but I’m not bothered either way. I said I was happy to have it tattooed on later if needed. It’s a little tricky as my tumour is very high in my breast so some tissue movement will be needed.

I’m happy to have them reduced as I am a J cup and I hate how heavy and in the way they are.

Yesterday I saw the oncologist and brachytherapy radio therapist for a planning meeting, it was my first internal since my treatment and I nearly hit the roof. It was so painful and I’ve had two babies with no pain relief. The speculum was the smallest size and still hurt too. Apparently the tumour has turned to scar tissue and it is still sore and tight, inserting the brachytherapy applicator was also not a pleasant experience, I did tell them that I gave it 0/10 and wouldn’t recommend it as a day out.

I felt nauseous all the way home and was so exhausted when I got back, couldn’t eat any dinner and had a glass of wine watching drag race with DD2 before heading to bed.
I did think seriously this morning about telling them I didn’t want to proceed with the treatment. It is going to cause more scarring to the back half of my vagina and I’m not sure I can deal with it.

I'm wincing just reading about it- you poor darling . I think you should definitely speak to someone on your team that you feel comfortable with about it. They might be able to reassure you or suggest alternative ways forward?

@MrsPnut what a horrible day you had yesterday, you poor thing. I think serious pain is just the final straw when you feel so rough

@MrsPnut what an awful day for you, I am sorry. Do hope there is some treatment option that is l?ess damaging and painful.

Hello!

Bloodybridget, Humphrey and Lubballoo ** I had exactly the same thing with my cancer - in fact, the consultant and nurse point blank refused to tell me the stage. I wonder if this is a policy thing now? I get that it is unhelpful to fixate on it, but also I think sometimes I cope better when I can name things. Does anyone know if there is a way to work out your stage? Bridget, I hope you're feeling a bit better about things and I have everything crossed for 17th for you.
*
Noidea* that is great news that the cancer is gone! It sounds like you have had similar results to me - I had two ops, a lumpectomy, 36 nodes removed of which only the sentinel was bad. I'm
now halfway through chemo, to be followed by radiotherapy and hormone therapy. Did they get your HER2 result after the second op?

BitofFun I am in love with that alpaca! I love camels and alpacas and goats - anything that looks permanently grumpy!

MrsPnut I am sending you lots of sympathy tonight - that experience sound truly horrific. Surely they can offer more pain relief in these circumstances? It seems awful to make you suffer like that.

I don't suppose anyone has any inkling about Otter? I wish there was a way we could make sure messages of support are getting to her.

I'm back to feeling great after my vaccine bump in the road! But today is a week til cycle four, so I am already feeling nerves.

Morning lovelies

Well, I feel so much better than I did after my last double dose on day one. Doubling up the sickness meds must be working.

Went and read through the thread from the beginning and it's only been a couple of weeks since @InOtterNews caught Covid so along with everything else I sure she's trying her best to come through it and will be back to chat soon.

Big wave 👋

HC x

I also never found out about my staging until I saw it in a letter from my GP. The oncologist obviously used it in a letter for my notes but had not discussed it with me. The GP was quite justified in assuming that if this was used in a letter about me it would of been discussed with me.
The CNS did apologise that this was the way I found out about my staging but then seemed to minimise the importance of staging. I was told that staging referred to how far out of the pelvis(in my case)the disease had spread.

MrsPnut That treatment sounds horrific and I haven't been able to uncross my legs since reading it.I'm not surprised you had a glass of wine in the evening I hope it was a large one. Could they give you some pain relief next time or at the very least Diazepam.My friend used to be given diazepam before a smear test which helped her relax.

I have my Covid Jab next week which is positive I'm finding the continued isolation so difficult, I want some life back.

I’ve just been for my Covid vaccine and what an impressive set up it was! DH dropped me off and it was only five minutes before I was back at the car jabbed up and ready to go home. I’m okay so far, just developing a mild headache.
@MrsPnut could you maybe get some Instillagel which is a local anaesthetic gel used for things like catheter insertion? It sounds excruciating and I would be reluctant in your circumstances too.
I’ve been charging ahead like a bull at a gate doing physio and exercises classes and cycling and digging. I’m going to take it easy today for a change. I have so much muscle pain I can barely walk.
Next Wednesday I get Herceptin no 7 and start radiotherapy so things are moving on again.
@Bloodybridget I was never given a stage at diagnosis. I think in the UK it has gone a bit out of favour. They tailor your treatment individually instead. Glad you are feeling better.
@BitOfFun your day out looks great. I am so thrilled by the smallest treats these days. Even going to have the vaccine was exciting seeing all the new buildings going up since I was last there in September 2020. I am becoming a recluse!
Have a nice weekend all
Top

I was given the stage as well as grade after I'd had surgery, it was the first appointment I had with an oncologist, when I was told about the chemo plan. It's also on every letter that goes to my GP, but as "diagnosis May 2019". I feel I do want to know. The Cancer Research UK website has quite a bit of detail about staging.

@AlbertCampion I was given the results of the HER2 before my first op. Negative.
Over the 2 operations they removed 30 nodes and 4 of these showed cancer.
I do know I'm grade 2. Is stage and grade different? As I haven't been told my stage.

@Noi**@Noidea2114; @TopOfTheCliff & @bloodybridget think it must be an international thing now re staging as I have never been told (DH pushed the oncologist without success but DH considers he has read enough on google to confidently say it’s 2B - or perhaps not 2B!). All I have been told is grade 2.

Looking forward to my first vaccine too - been told will be before end of February!

Oh sorry @Noidea2114