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Cancer support thread #77 - newbies welcome

999 replies

InOtterNews · 21/12/2020 10:01

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)

OP posts:
Thread gallery
7
Acinonyx2 · 22/02/2021 22:04

@BitOfFun Wow that's not just an allotment that's a whole kingdom! What are you favourite plants?

MrsPnut · 22/02/2021 22:19

I too love the allotment chat, we had one when we lived in Harrogate but I found it was just a bit too far from our house for ease. It was fine when I didn’t work but once I did the time wasn’t there.

I’m so worried about InOtterNews, I’ve even done some advanced search stalking and tried to find her real name. I sent her a private message a while ago and I think she lived alone so no-one to realise we are concerned.
I have told DH that if something happens to me, he needs to post in the cancer thread on here and in the Bad Mother’s group on Facebook. The kids will have to help him becaus he’s useless with technology despite being a software developer.

BitOfFun · 23/02/2021 00:04

I love anything I can eat, @Acinonyx2! The most satisfying thing is to eat a whole meal you have grown yourself. I think the most surprising hit has been beetroot, probably because my mum put it in the most spectacularly moist and delicious Red Velvet Cake.

@MrsPnut- it's dreadful, but I share your concern. The last time I saw her post was to say that she had contracted Covid Sad. I'm hoping that she's just been too ill to post, rather than the alternative.

TopOfTheCliff · 23/02/2021 10:47

The lovely thing about allotments for me is the culture of the whole men (and women) in sheds thing. When my babies were tiny I had a shared plot with friends and we put the babies in a sandpit in the middle and grew organic non phallic vegetables. Our pink fir apple potatoes got disqualified from the village show for not being oval or round! But the chairman bought them for his tea. We were always having arguments with the Round Up spraying chemical gardeners nearby. Now I have a plot where chemicals are banned and my neighbour is the chief apiarist at a famous honey producing monastery nearby. They have been lovely during my whole cancer and broken ankle saga and I know that if I asked they would help me dig over my beds but I'm stubborn and anyway I like the No Dig approach.
It's been my happy place through all this time of lockdown. There are birds and frogs and slow worms and lovely views of the moors. I like pottering about making my own lovage cordial and coming home with handfuls of artichokes and kale for tea. @BitOfFun I have serious shed envy there. For my birthday last summer the DC mended my shed and painted it but it isn't in your league.
As for @InOtterNews what can we say or do? I hope she will come back and tell us a desperate tale of illness and recovery. I mock the shielding letters but it makes me take it more seriously.
Love to all

Toofaroutallmylife · 23/02/2021 11:31

I’ve emailed Mumsnet about InOtterNews, but all they can do is email the address they have for her, and hope.

thereisonlyoneofme · 23/02/2021 12:42

Just had a phone call making me an appointment with the surgeon, and possible op date of 15th March! Ive been worrying about this for a fortnight and trying to imagine how i would cope,and now its nearly here I feel sick and terrified because I may have to make a decision about having op or not. ALso worried about catching Covid in hospital as that seems to be a hot bed still (pun sorry)

HumphreysCorner · 23/02/2021 12:52

@thereisonlyoneofme stay strong 💪 not too long to wait.

I thought about messaging Mumsnet as I did a few years ago and the lady got the message and came back. Sadly, I fear the worst for @InOtterNews. We will be starting a new thread soon and it's sad as she started this one.

HC x

Thymeout · 23/02/2021 13:16

Yes. I've been thinking about @InOtterNews so much since her last post.

I must live quite close to her. We are both patients at the cancer unit of our local hospital, now overseen by King's. My dd has lots of local connections. Coincidentally, she has a friend following the same lymphoma path as Otter in the same unit. Sadly, he's just been told that he no longer qualifies for a transplant because his tumours haven't responded sufficiently to chemo. She also knows someone who works at King's.

Our borough has been hit v hard by the Kent variant. As an example, around the time Ottter went into A&E at the local hospital, another family we know, mother, father, two grandparents, over 90, who lived next door, were all struck down. The paramedics were so over-stretched that at first they didn't want to take the oldies and suggested they should stay at home in the care of their 16 yr old granddaughter. Shock In the end, they were admitted, grandfather has now been discharged, but granny died. Father also now at home, but mother has been in an induced coma ever since. Gradually being brought back to consciousness but they think she might have had a stroke. It does sound as if they're right about the new variant being super-infectious. I'm sure Otter, with her history, would have been taking extra care.

It's all so difficult with Covid. Normally, Otter's friends would have been able to visit and check her phone, but now it's just as likely that it's in a drawer somewhere on the ward, out of charge. However tempting, it doesn't feel right to use dd's connections and super-sleuth in the community. It puts everyone in a v difficult and unethical position.

I agree with Top. I think all we can do is tie a yellow ribbon and hope for the best.

Thymeout · 23/02/2021 13:47

@thereisonlyoneofme

Did you ever phone the nurse on Ovacome? They have so much experience with patients in your predicament. I used to read the posts on the board and last time I looked there were so many trying to get appointments with a woman surgeon at, I think, St Mary's, who was prepared to take on selected patients whose tumours had been classified inoperable. So you're v much going against the grain.

On the other hand...I do see where you're coming from. It's a v personal decision, and you do see things differently at our age, without a partner or dependents. (My dc are all grown-up now.) For me, it would be not just how much longer I might live, but what the consequences might be of leaving the tumours in place in terms of pain going forward. The op itself involves short-term pain, easily managed and yes, you will need to rest, but you won't actually feel ill. When you've recovered from the op, is there a chance you will actually feel better than now? I certainly did after my TAH.

But I'm not a medic and know nothing about your proposed surgery. I think you'd feel a lot better if you could talk to someone knowledgeable but unconnected. Or have you really made up your mind already and don't want to have to justify it to people who are only looking at it from a medical point of view?

thereisonlyoneofme · 23/02/2021 14:00

Thymeout
No havent made a decision yet. At the moment I feel really well
but you are right about the tumours causing pain and increasing as things go on,. I think this is one of the reasons the consultant decided to talk to the surgeon again. It will depend on if he will operate, or what difference it will make, as was originally told no benefit from op! Disease has progressed si nce then. But my friend said today he wouldnt waste time talking to me if he was going to say the same thing, unless he thinks hes got to shut me up from asking !
Pondering today that Im sitting here with my teeth aching and am
total wimp when it comes to the making myself go to the dentist, and this is so much bigger. Well roll on 3rd March, decided Im not bothering to diet now as if I do go for the op I doubt I will be eating much for a while.

Anne1958 · 23/02/2021 16:11

@mrspnut

the Bad Mother’s group on Facebook

I was a BM but I’m not on the FB group.

MrsPnut · 23/02/2021 16:24

[quote Anne1958]@mrspnut

the Bad Mother’s group on Facebook

I was a BM but I’m not on the FB group.[/quote]
@Anne1958 it’s a hidden group, you need to be invited to it. Do you have any bad mother’s as friends on FB

loubieloo4 · 23/02/2021 20:31

Been at the breast clinic today finally, looks like the news isn't great. I had a mammogram, then a ct of the breast followed by an ultrasound. They found the lump in my breast and a enlarged lymph node so have taken biopsies of both. Saw the consultant after who said it doesn't look good but didn't want to give a definite answer. So now we wait for the results of the biopsies.
The biopsy of the breast lump was fine but the lymph node one was a bit more painful as they had to dig around a fair bit.

Acinonyx2 · 23/02/2021 21:53

@loubieloo4 So sorry to hear that especially when you already have so much on your plate. Sad Quite a few of us with BC here - I had breast and lymph involvement. Let us know your biopsy results - when will you get those (generally it's week)?

Also sad for Otternews.

loubieloo4 · 23/02/2021 22:01

I'm not sure how long for results, they said there could be some delay due to covid.

Acinonyx2 · 23/02/2021 22:04

This must be hitting you hard Loubie. And I so hate when you don't get a proper date for results.

loubieloo4 · 23/02/2021 22:07

It's very frustrating, we are also waiting for the results of DH's scan.

Is there a certain type of bc that more typical with lymph involvement? They did ask me if I was willing to take part in a study, then I noticed a sign on the wall for DICS looking for participants for research 🧐 maybe a coincidence 🤷🏼‍♀️

Acinonyx2 · 23/02/2021 22:35

No - any invasive BC will spread to the lymph nodes. You may yet find the lymph node biopsy is clear though- unless they already saw a lump there (mine was like a small egg already!). It's just a matter of time. I actually don't know which of those types I have - the most useful info is which receptors your cancer cells have as that will determine treatment. Whatever combination you have though - there is a treatment plan.

Bloodybridget · 24/02/2021 08:13

Morning all.
@Percivalthebabyspider sorry you find yourself here, that's a lot of surgery you're facing. Hope you get very good and effective treatment and that you get good support IRL that doesn't feel intrusive.
@FizzyOrange great that you are getting ESA; taxi fares certainly do add up. My transport costs are minimal as we can use our own car, and congestion charge is refunded by Transport for London via the hospital, but I've realised that if I keep on with weekly counselling indefinitely, it's going to really eat into my savings.
@MrsPnut sorry the brachtherapy treatments are so painful, you'll be glad to get past the last one.
@Lizdeflores interesting that you have been put on Bevacizumab, I looked it up and sounds like I could have been offered it too, but it's never been mentioned. Good to know you haven't had too much in the way of side effects.
@TopOfTheCliff glad to hear your wound has finally healed and that you're doing well with exercise etc.
@Noidea2114 re cyst on spine, sorry to hear this, hope you get scan soon and it turns out not to be concerning.
@loubieloo4 of course you will be worried about the lump but I hope it turns out to be very treatable - so many experienced women living with breast cancer here to help with practical advice, I can just send good wishes and a handhold.
@HauntedDishcloth that's pretty crap about getting chemo on the wrong side and getting phlebitis. So unnecessary. Hope different meds are effective for next chemo.
@HumphreysCorner hope the ABs clear up any infection, your PICC site does look nasty.
Congrats on getting home to @Trumpton, wishing you really good spring as you recover from the surgery.

Well, I should have had chemo #4 on Monday, but neutrophils were too low for the third time Sad. I had to go in early for repeat bloods in the morning to see if they'd miraculously improved since Saturday, which I knew was highly unlikely, spent four hours hanging around before being sent away for another week with filgrastim injections. I can't help thinking it would make more sense for them to prescribe the injections each time to be used in the week before I have bloods, rather than waiting till there's a delay. Came home feeling cross and frustrated, but at least it gives me another week to enjoy food and take advantage of nicer weather.

Love the allotment and veg chat! We don't have room to grow food really, although we got a good crop of tomatoes and salad leaves last year.

Like other so worried about Otter, still hoping for good news there. Thanks to whoever it was who contacted MNHQ.

Good wishes to all.

Lizdeflores · 24/02/2021 10:01

That sounds very frustrating @Bloodybridget hopefully the neutrophils will start to behave or the organisation will be better for you.
I'm also taken heart from the improved weather and the news that schools are going back on the 8th has really improved my mood. I had a lovely evening ordering seeds last night. I'm going to try cucamelons this year.

Acinonyx2 · 24/02/2021 10:44

@Bloodybridget can you ask to get the injections routinely? I always have them after chemo and even so - my neutrophils were borderline for the first time this last cycle.

@Lizdeflores yes I'm feeling a bit more inspired and hopeful about gardening and thinking a about a few seeds - just not the hundreds like last year. Always so impatient to plant out - so long before true risk of frost passes I always go a week or two too early.

Percivalthebabyspider · 24/02/2021 12:00

Thank you BloodyBridget

Well the initial biopsy has come back clear and I am so relieved. I did have a second scan today though and will find out results over the next week, so fingers crossed.

May I ask if anyone who has had mastectomy has chosen not to have reconstruction? Some of the surgeons I’ve spoken to seem dead against going flat but I am sure it is the right decision for me, but I don’t hear many stories from people who have.

Acinonyx2 · 24/02/2021 12:26

@Percivalthebabyspider definitely a few flats on here. My final surgery type is yet to be decided - but if it's a mastectomy I am definitely not having reconstruction.

thereisonlyoneofme · 24/02/2021 15:55

What makes you all keep going through all the treatments.
Is it your family, is it because you have an interesting life and dont want it to end, or just sheer bloody mindedness !

BitOfFun · 24/02/2021 16:13

Necessity, I'd say. Nothing more than that!

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