Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

@Greenelefant definitely don't push yourself with the work component - you had major surgery and anesthesia AND cancer, give yourself a break! Its ok to rest on the couch and frankly your body is going to need the rest time to recuperate and heal.

Hello @Greenelefant and welcome. In my experience the nerves that have been cut are either numb or prickling and hypersensitive. It felt like I had fallen in a patch of stinging nettles down my upper outer arm.
Taking painkillers regularly and even amitriptyline at night helps, as does a hot wheat bag or similar in your armpit. They will start to recover around 4 months after surgery but you will probably have a numb patch long term. Hope that helps.
I had a breakthrough today. I went out on an all-day club bike ride with 17 friends and not only kept up with them but came home without any pain. I am so thrilled to be getting back to normal pleasures again! I thought it would never happen.

Thank you. I don't know why I can't seem to be kind to myself!

I read something earlier about someone saying they had to avoid exercise like press-ups permanently after mastectomy. Is that true? I mean I hate press-ups so no loss there but I used to do a lot of yoga so wondering if I will be able to do things like downward dog etc in future? And if so how long is that likely to be?

@Greenelefant I had surgery at the beginning of April, full axial node clearance and double reconstruction and I’m able to do the sun salutation moves in yoga. I’m doing it as part of my being kind and getting fitter without doing too much.

Thanks, that's encouraging. How many weeks after surgery were you allowed to start doing that?

@HerbalRefreshment thanks for telling me about your situation. My nipple has popped back out again after my 3rd chemo cycle.
@AlbertCampion what was the pink wig you bought? Was it the one several on an earlier thread have recommended? I have one quite good wig, just like my old hair. But I’d like a spare.
@Acinonyx2 thanks for your reply re: hospitals. You mentioned the wait for the pathology results after surgery. Do you know if you get any initial verbal feedback on what they’ve seen straight after surgery, or do you have to wait for pathology?

@Lunificent I didn't get any feedback until pathology which I think is usual. I expect it's very difficult for the surgeons to see anything definite as the pathology is at the level of individual cells. The pathology is the final word - more than what can be seen even on an MRI.

@AlbertCampion what was that good cream for radiotherapy that your nurse didn't know about? PS - I seem to have put on a pound

@Greenelefant if you are keen on exercise you may be fitter than the doctors and nurses looking after you. I had chemo then lumpectomy and axillary clearance and radiotherapy. Every time I asked them about exercise they said ooh dont overdo it! Then they said trust your body and don’t push too hard.
All the way through I was on the exercise bike (until I broke my ankle which stopped me for a couple of weeks). After surgery I signed up for the SafeFit trial with Macmillan which allocates you a personal trainer on Zoom. That was brilliant. Then I got a private physio and a personal trainer and I have been doing weights and going to the gym and exercise classes and regular cycling for five months. I am now lighter than I was at diagnosis and much stronger. I can leg press 140kg and squat 50kg. I am 60 but I am probably fitter than I have been since my teens apart from the dodgy hip and ankle and the tight muscles in my armpit.
The nurses reel in shock at the idea of resistance training after axillary clearance but there is good evidence from the USA that patients do better with heavy weights than light ones and recover from chemo quicker and have less lymphoedema flares. Over there everybody gets a PT unlike here.
To sum up, it’s okay to push yourself gently and keep pushing. You will know when you overdo it (as I did) and have to rest up for a week or two. You can get back to your former level of fitness and usual activities whether that is a stroll round the local park and some gardening or marathon running.
Best wishes
Top

@Greenelefant I'm 8 weeks post surgery lumpectomy with reconstruction and sentinel node biopsy. I started running again after 4 weeks and have done some yoga and body pump and loads of walking. I think everyone is different and it will depend on your level of fitness before , if anything hurts stop, don't do anything silly and ease back in slowly.

Thanks so much for the helpful comments. I'm waiting for my first physio appointment so will be definitely be asking these questions. I certainly can't see myself running for a long time as any impact is still quite painful, even car journeys and walking, but I had mastectomy and implant reconstruction so I suppose that is to be expected.

I was very enthusiastic about doing the physio they gave me in hospital but then my incision isn't healing quite as they would like so I wonder if I stretched it too much doing the physio. It's hard to tell how much is too much when you're balancing stretching muscles/cording/incisions.

Waving to all the new posters and offering hand-holds and good wishes. I echo what so many others have said - the first few weeks are horrendous and confusing. Be kind to yourself - it takes a while to wrap your head around what's happening.

@Lunificent I just went for a v v cheap one, as I wasn't at all sure if I actually wanted it! As it is, I think I do like it - it's probably not great for hot summer days but I would wear it out in the evening. It had good reviews but, like I say, it's not top quality: HAIRCUBE 14 Inch Short Curly Pink... https://www.amazon.co.uk/dp/B07QRPZJ7X?ref=ppxpopmobapshare

@Acinonyx2 I have also had a blip over the weekend and put weight on. I am fine if I just sticking to our normal routine, but anything unusual and it all goes out of the window! The cream I was using is Biafine - although the QV lotion they prescribed does seem to be good as well. Here's the Biafine: Biafine Emulsion 93g https://www.amazon.co.uk/dp/B00L3RRXKY?ref=ppxpoppmobappshare

Both links are Amazon which makes me feel v guilty!

@AlbertCampion not only am I not fasting today I'm actually going out to dinner! This fasting is just not going well. Onc says the new drug causes weight loss (although no-one seems sure why/how (!)) - I may have to rely on that at this rate. Silver linings etc...

Got my tattoos. Wounds/skin still seeping in some spots but still 3 weeks to go - hope it will settle down. Everyone just looks so about the whole gluey business.

Mental fog has definitely lifted for now though so trying to pack in some writing before rads. How about you

@TopOfTheCliff glad to hear you up to your usual exhausting exploits. I did a 10 km walk in the pouring rain on Friday - and enjoyed it! I don't think I have any post-chemo fatigue at all and I really think it's all the walking throughout - like you I think I'm actually a lot fitter.

Thanks so much for all your kindness. I went for breast clinic today and had a mammogram, examination and ultrasound. It's just a cyst, in the skin rather than the breast, apparently. They aren't going to do anything with it and no follow up required.

Good evening everyone. I post here under a different name - I was recently diagnosed with stage 1a ovarian cancer.

One week ago I had my first 6 month check up and given that I’ve not been contacted by the hospital I’m assuming my results were good. I was told they’d only be in touch if they found anything. It’s such a relief.

I feel a bit of a fraud posting on the thread but I do keep up with all of you and I think of you often.

Xx

Great news @Lougle I'd be raising a glass of something in celebration.

@MaBroon21 No news is good news for you too, never feel like a fraud posting here. The feelings are the same no matter the outcomes.

Thanks @MrsPnut

Hello everyone, old and new posters alike. Handhold to all who needs one at the moment.

I'm struggling today with the wait for the pathology report from my lumpectomy and node biopsy. Some days I do OK and some days I spiral. The closer the 10th gets the more I spiral.

Just before I was diagnosed me and DH were TTC DC3. From what I understand even if I don't need chemo I will need Tamoxifen for 10 years!! So that rules out that. I am very thankful for the 2 DC I have. But struggling with knowing that cancer will dictate my life and my choices for a long time to come.

Hello all, I've been MIA for a bit since my bad news about chemo failing/new line of treatment.
I've been through the mill a bit with horrendous fatigue in my chemo nadir, and needed topping up with a couple of pints of blood. And then they took my temp at the blood clinic and it was too high, so despite finally feeling better, I found myself in A and E and admitted for three days being treated preemptively for neutropenic sepsis. We never got to the bottom of what was actually causing the temp and I was really gutted to miss out on half term with my kids.

I'm now facing up to the stem cell transplant. I've got a meeting with the stem cell nurse tomorrow, and I think will get my injections to stimulate stem cell growth. Then I have my stem cell harvest next mon/tues as an outpatient, then straight back into hospital as soon as they can fit me in for another 4 day inpatient cycle of chemo. I'm really really not looking forward to any of that and I'm just trying to take it all a day at a time and get that out of the way before I start facing up to the stem cell transplant itself, which will be a month at least in hospital with no visitors. Likely to happen over the summer holidays.

I'm cycling between feeling very seize-the-day because I actually feel almost completely normal at the moment for the first time in a long time, and sobbing on the sofa terrified that I'm going to die and leave the children motherless. It's all pretty exhausting.

My best mate drove 250 miles each way this weekend to see me for 24 hrs which was so bloody incredible; I haven't seen her in the flesh since I think September, before we left London.

Lunificient on that note in terms of regional hospitals, I'm in Cornwall and the main hospital here seems to do most things oncology-wise, although I'll have to go to Plymouth for my stem cell transplant.

Top bloody hell that is some seriously impressive lifting. I'm really resolved to improving my fitness and pushing myself properly once I'm able to. Currently I only get 10 or so days a month that I'm able to even walk the dog so it's just maintenance at the moment. How did you start weightlifting if you don't mind me asking?

@Littlestelephant You said it! I'm struggling with the wait, too. Spiralled big time this weekend: convinced myself the calcifications will be diseased, too many nodes still diseased, etc. and I'll have to go back for a mastectomy and AXD, which will set back radiation by six weeks...and after all that, maybe the cancer will still return a year from now and I'll have to start all over again. For me as well it's the fact that I've been through chemo and thought that this would be the easy bit, but the goalposts just seem to keep moving.

How long have you been waiting? It will have been three weeks for me on Wednesday. Meeting with surgeon on Thursday. Had hoped she'd call early but apparently they still don't have the pathology. Ugh. Sympathies!

@Littlestelephant Did anyone on your care team ask about your childbearing wishes? You should speak up and ask about having another child and any potential concerns- you dont have to take the anti-hormonals if that is your choice, but best to understand risk (and that includes the risks from tamoxifen as well!)

@backformore I'm sorry you are struggling too. The waiting and the unknown is like torture. It will be 2.5 weeks for me between surgery and results. I think we are cycling through very similar thoughts. My DH keeps trying to get me to focus on Thursday afternoon. It's only 3 days away and by then we will know more, and even if it's not what we want to hear at least we will know and can make plans.

@HerbalRefreshment Thanks, I have mentioned it to a nurse, but got the distinct impression I should take the medicine, get a copper coil fitted and be grateful for what I have.

@Littlestelephant I’ll keep everything crossed for you on Thursday, too. Here’s hoping it’s a day for good news!

@Babamamananarama challenging summer ahead for you there. I really have to work at 'reframing' the treatment experiences, ie they are not meant to be (just..) a form of torture - they are trying to save my life! It's surprising difficult sometimes. Hard to see past that to the outcome.

It's going to be pretty crap - but it (the particularly grim bit - rather than long-term meds) will end (this I also say to myself).

They are obsessed with raised temps - it's the one trigger that really sets people in motion!

Keeping seizing the day when you can and hang in there - and keep posting.

@Littlestelephant and @backformore it is indeed tough waiting for the pathology - hoping you both get some good news.

Morning all
Just read through nearly a week's worth of posts, so greetings and sympathy to @barkydog - hope your surgery goes well - @Pandoraslastchance, I'm so sorry about the metastases, I hope the lung drain helps with breathlessness. It all sounds very grim.
@user1471424310 you are also @Timmythetumourgotne, right? Again very sorry you have metastases. Hope you have good support IRL at this very tough time.
@KevinTheGoat horrible shock for you, having thought the nasal polyp was a tiny issue. Wishing you all the best for treatment.
@newdiagnosis you are obviously feeling very distressed, understandably. I hope you'll feel able to talk more here - so many of us have found it a lifeline in dark times.
@Greenelefant I don't have experience of BC but hope the pain and bloating subside. You know you can always contact a Cancer Nurse Specialist about any persistent issues, do you have an "assigned" one?
@MaBroon21 it does seem like a positive sign that you haven't heard anything since your checkup. What treatment did you have? I don't know if surgery and chemo is standard OC diagnosed at stage 1. If you have had both, or even just surgery, I would assume they will just be monitoring for quite a while, is that the plan?

@Lougle I'm so pleased it's just a cyst, brilliant news!
@HauntedDishcloth I know your post about feeling sad re mastectomy was a while ago, just wanted to say I reckon it's definitely "normal" to mourn the changes to our bodies - maybe especially losing a breast. Sending warm wishes.
@Babamamananarama looking ahead to the transplant must be so hard. I hope you have excellent care every step of the way. Is "no visitors" standard for all transplant patients, because if it's only because of covid, it might be relaxed by summer holidays? Though I guess they will still be super careful while you are so vulnerable.

On Friday I announced triumphantly to several dozen people (by group email) that I had so far experienced no ill-effects from the new drug. Of course the next day I woke distinctly nauseous, and that's persisted - I'm taking Domperidone regularly . . Am feeling apprehensive that it will ramp up. And I can't stand the heat (skin hypersensitive to sunlight) so I have hardly been out. Bah.

Waving at everyone here and sending very good wishes.