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)

@FizzyOrange ugh, sympathies on the stressful phone messages! I had the same last week with a random order to report for an MRI after the doctors' panel. So stressful. I'm not sure how things work where you are but sounds as if Aci may have put your mind at east!

@Acinonyx2 a friend told me she eventually found it easier to do the shot than DH. Hard to imagine I'll ever get there! Think we're both psyching ourselves up for it now...

Cannula wasn't uncomfortable yesterday, but yeah, I'm worried about it getting harder/more traumatic in time (I'm going to be getting treatments after chemo, so jabs for a year...plus blood tests, etc). And I'm so squeamish around needles anyway. It's a toss up between the one-off big stress of a surgery, and repeated smaller stresses for the next year with jabs...tough one.

@HumphreysCorner The breast MRI wasn't too bad, really! It's not especially elegant getting on and off the table, but it didn't take long for me. Worst bit (because I'm a big baby) was getting the contrast dye and having an IV trailing around I had to go back for another MRI on my leg this weekend, and that took waaaaay longer and actually became more uncomfortable and harder to stay still. You'll be great, don't worry.

@backformore I’m huge as I’ve tried so many times to lose my lockdown weight then broke my ankle. 😭

@HumphreysCorner You won't be alone with the lockdown weight, don't worry!! I'm sure it won't make a difference for the MRI. And if your treatment involves chemo, a little more weight is probably no bad thing...?

[quote Acinonyx2]@Lubballoo I've also found chin hairs persist while all others fall![/quote]
Nature loves its little jokes!

And hello everyone on this new thread. I’ve just finished 4 cycles of chemo for stage 3b bowel cancer (diagnosed and had an operation in the summer). A few days after my chemo finished, we went into full lockdown here in the Netherlands, at least until 19 January. I can’t say I’ve noticed any difference, having basically been shielding for months!

On the positive side: I’ve noticed a slight increase in energy, for example after dinner one night I had enough energy to bake cookies with the children. This has been out of the question in the evenings for at least the past year.

For the rest I just need to have patience, the hospital will call me in March and I’ll have a scan around May I think. After Christmas I’m getting in touch with the local cancer care centre for physio and a bit of support and encouragement with ‘healthy lifestyle’ stuff.

One day on from surgery and it’s not been too bad. DH made me breakfast then went for a forty mile bike ride! It’s hard to avoid using my right hand, my typing is very slow with the left and I forget. The breast surgery is invisible the wound is glued round the nipple and you can hardly tell anything has been done to it. The armpit is more troublesome and the drain is pumping lymphatic fluid generously. I can’t imagine where it will go when the drain is removed. I’ve never thought about it before. I’m worried about lymphoedema too but can only follow advice on exercises.
@HumphreysCorner you set a fashion for ankle breaking - mine has just about healed after eight weeks in the nick of time.
@Lucywarlowsrighthand congratulations getting through the treatment I’m six weeks post last treatment and feeling much more human
@backformore and @Acinonyx2 and anybody else who had chemo this week I hope you are feeling tolerably well for Christmas.
@MollyButton good luck for your operation on Thursday. I’m hoping my drain will come out then so I’m not stuck with it until after the holidays.
At least my Herceptin has been deferred from tomorrow. The team decided I would be better waiting a week after surgery. One less insult to my poor battered body!
Everybody else waiting for results or treatments plans best wishes
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Morning, chemo day today so have packed my bag for the long haul.

I have a severe pain in my pelvis, which I think is one of the lymph nodes they are radioing but it makes it impossible to get comfortable. I end up tossing and turning but no position is working.

Strength to the people having or about to have surgery.

Hi everyone. I've just turned 48 years old. Married with one teen DD. Diagnosed with stage 3 rectal cancer following Anterior Resection in November. Had been under investigation since May but Covid delayed some things. Also had full hysterectomy and shortening of vaginal wall due to severe endometriosis which was affecting surgery. Just commenced a 6 month chemo regime this morning. Capecitabine tablets. Nervous about potential side effects. Just want to wish everyone a peaceful Christmas and to thank you for the support provided to me during pre and post diagnosis. You are truly an amazing group of people. Lots of love. ❤️❤️❤️

Morning

Just had a call from my Cancer nurse and they are not waiting for the results from the CT and MRI, she said for survival the consultant wants to get straight on with planning chemo so hoping to start at the beginning of January instead of the end.

Big hugs to those recovering from ops, having ops and treatment.

@MrsPnut what do you take with you, I was thinking phone and book to read.

@HumphreysCorner I'd say other essentials for me are a bottle of water, a cosy scarf and big comfy socks, and headphones so I can listen to stuff on my phone. And I'm a knitter so now that i have a picc line and pretty much full use of my arms i take my knitting! When I was cold-capping I took paracetamol to take half an hour beforehand. I also try to have boiled sweets and chewing gum in my bag in case i feel like them, but usually i don't.

Glad to hear they're moving ahead swiftly with treatment plan. I felt much better psychologically once treatment had started. Having scans and waiting for results is the worst bit imo!

@HumphreysCorner I have book, phone, iPad, blanket, slippers, eye mask, coffee, squash, boiled sweets, cancer book, headphones.

My chemo takes all day so I like to be prepared.

Thank you for starting this new thread. I did post on the 76 support post.
I have been diagnosed with breast cancer ER + HER2-. It's a 5mm lump.
Next Tuesday 29th December I'm having a lumpectomy. I feel that I haven't been asking the correct questions.
I'm still in a daze and think it's happening to someone else. Only been told that they will discuss my care plan
after my operation. No MRI or CT scan offered. It's going to be a long weekend until Tuesday. My care nurse
is not in now until Monday.
Take care everyone and I hope you have as good a Christmas as you can.

Ladies, I bring you tidings of joy.

My transplant consultant just called with the news that I'm in complete remission. I should be good for a few years now.

She'll hand me back over to my local team for day to day stuff.

She told me to check myself and to stop setting unrealistic recovery goals. Basically I'm going to be knackered for a least another 6 months.

I do have a load of questions which is why I hate telephone consultations - I'll email my transplant nurse with them instead (they're all about returning to work, neuropathy and ongoing medications)

I wanted to share - to say thanks for all your lovely support and also to spread a little joy as I know people are having a hard time at the moment.

I'd crack open the champagne if I wasn't so bloody knackered.

InOtterNews that's brilliant news.

@InOtterNews that's absolutely brilliant to hear. You've been through a lot to get to this point and I'm so happy to hear you've had some good news.

What a wonderful Christmas present, Otter! I'm so glad for you.

@InOtterNews that is fantastic news! What a 2020 you've had. Here's to you being able to ease yourself into a gentle, recuperative and healthy 2021

@Noidea2114 I'm no expert but I think they only want to do a CT scan if they find breast cancer has already spread to a person's lymph nodes, so if there's no sign of any issues in yours that might be why. For me, I had three irregular lymph nodes visible at my initial ultrasound, so I was put on neoadjuvant chemotherapy and won't have any surgery until that's finished. But before I started treatment I had to have a CT scan because once it's in your lymph nodes it's possible for it so spread further, so they need to check. At least that's how I understand it. I know what you mean about not knowing what questions to ask. I find it really frustrating. I always have loads of questions but sometimes I don't even know enough to know what I don't know iyswim?!

Wonderful news @InOtterNews!

Lubballoo I don't want to Google to much in case I'm worrying about nothing.
But it is hard to get my head around something I know nothing about.
If that makes sense.
InOtterNews wonderful news for you and your family.

Am I too late to join you all? I didn't feel able to before. 47 (now), 2 kids 9 and 11.

Found a lump and diagnosed with invasive ductal carcinoma grade 3, hormone positive, HER2 negative, spread to 3 lymph nodes in April. Mastectomy and lymph node clearage (as they assumed more than 3) in June, 3 cycles of EC therapy followed by 9 weekly paclictaxels and 15 sessions of radiotherapy. Now on 4 weekly injections of zoladex for 18 months, daily anastrole tablets for 10 years. I have been VERY lucky with very few side effects, still did school runs etc.

If anyone has any questions please feel free to ask, I think it would help me to answer some fears for someone else. I don't think I've actually dealt with the psychological side myself yet.

For those of you having breast MRIs, I had to tape cod liver oil capsules to my nipples and the tumour area before I got on the bed and they furtled with my boobs under the bed to get them in the right position. I did check for hidden camera as I thought it was candid camera time! I wish someone had warned me that the MRI bed was a bit like a beauticians bed, with the hole at the top to rest your face on, then two more holes slightly lower down the bed...

@InOtterNews what brilliant news, I am so pleased for you!

I had my follow up appointment with the oncologist which was to tell me they are sending off my sample (again) to a specialist centre to find the sub division of cell. He said I will need genetic testing and that the proposed chemotherapy will remain the same for now. The blood test form that came with this appointment letter was supposed to be kept to one side to be done 5 days before my first chemo session (no-one had told me this obviously) but I had rushed off yesterday to get it done for today's appointment. I am finding a lot of miscommunication with these telephone appointments...

@InOtterNews Wonderful! I just did a little dance for you xx

@Noidea2114 I agree with @Lubballoo if your nodes are clear they don’t look any further but if you have a swollen lymph node you get a scan. I did and mine was fine. I had chemo first and just had my lumpectomy and lymph node clearance on Monday.

I am having fun and games here with the vacuum drain. Last night it came unplugged and leaked all over my bed. Now it’s reconnected but not draining anything. Either it’s blocked or done it’s job .

I’m trying to rest but the doorbell keeps ringing and I have to haul myself down to the front door for parcels flowers etc. Sigh.

Love to all. I hope the chemo has been okay
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Congratulations @InOtterNews!

I've got to be at the hospital at 7:15 tomorrow - my poor daughter, its 1 1/2 hours drive to get there.
I'm really hoping the beds are a fraction wider than the rest of the beds in that hospital, or I just won't be able to sleep. i've packed 3 books, one very light, one easyish and one incase I get bored. I remembered phone charger, and just need to get the toiletries. Oh and need to pack the heavy present before I go to bed.

@InOtterNews Brilliant news! So pleased for you.