Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

@JeanLannes its so nice to hear how well you are doing and thank you for your concern. This thread really is such a lovely supportive place.
Thanks too @Thymeout and I think my ear may well be side effects of chemo manifesting late.
@AGreatUsername Glad you coped with the drug reaction. I had that twice and it's scary at first but the nurses are quick to deal with it thankfully. I just had my infusion really slowly and it was fine.
I had a really lovely trip to the BCN team today. I went via the supermarket and took in a bag of cold fruit drinks for them and they were amazed and all came out to thank me. Then I made them work for it so they have ruled out lymphoedema, (I just have post surgical swelling apparently) and booked me in to the triple assessment clinic on Monday to have my other boob checked out. Then as that clashed with my hip xray they sent me down to get it done immediately. They also promised to alert my oncologist about my deaf ear and speed up all the brain scan/tests. They really are so lovely and I feel so safe and well looked after. If there is something serious going on they will be on it like a rash!
Meanwhile wedding plans are marching onward, and I haven't ruined my lovely nails yet!

Stay cool and calm people.
Top x (a bit hyper on all the steroids!!)

@JeanLannes thanks for the info. I wanted to ice my hands and feet but as I have 3 hours pax and 1 carboplatin I couldn't work out the logistics of keeping things cold long enough.

I am on day 3 after first infusion and no real side effects yet other than a bit of nausea on the first night. I haven't taken any of the steroids or anti sickness tablets and haven't needed them, but thinking day 4 tomorrow might be bad (or later today maybe). Just off out for breakfast with DD soon, making the most of the last month before she heads off to her first year at uni.

@SierraSapphire , I bought little socks with cold gel on the soles which really helps the neuropathy in my feet when it is burning. Now it mainly feels cold so I pad about in night socks most of the time. I am also on gabapentin which has helped massively and does not give me the spacey side effects it did during chemo, but does affect my digestion so I also take omeprazole as a pp said, which helps massively. I am nearly 4 months from chemo and 1 from radio so looking forward to symptoms improving soon and being able to reduce meds. Hope it gets better soon and that chemo is over soon too.

@AGreatUsername This happened to a lady while I was having chemotherapy and the nurses were fab. Glad you were ok. X

I am 4 days post radiotherapy now and not much side effects from that, just slight sickness during it and very slight redness. Still a lot of neuropathy from chemotherapy, had no idea could worsen after chemo, it seems to be stable before suddenly worsened.

Lovely day today, went swimming in the lido by here and swam 1 mile - 18 lengths of a 91 metre pool. Earlier than supposed to go but no skin issues atm and chlorine was fine, had a bath at home and out more Aveeno on. Cheered me up a lot.

Hope wedding went well yesterday Top

I used to take a coolbox Sierra to keep things cool to chemo though I did found where I used ice or frozen peas worked a lot better than the gel things. I used to take ice lollies as well and never got any change of taste plus chemo unit was sweltering so was lovely to have. Hope you and Great are feeling OK.

Glad you could get a private scan Thereisonlyoneofme hope it goes OK.

Hope you are OK Mowly Floof is being amazing. Photo of half the pool and the river by it and Floof of course.

The swimming looks amazing @Silkierabbit - I swam twice a week in an outdoor pool before my diagnosis and hysterectomy, I really miss it.

I seem to have been okay since the chemo, though the timing of the heatwave means I've not slept well since, though last night was a bit better. I've felt a bit nauseous but have eaten and carried on with things as normal. It's a bit weird not knowing what to expect though. It feels like it's going to be a long slog though.

The lido looks beautiful Silkie! I’ve missed gentle exercise too, I’ve become so meh and static since diagnosis.

I’m doing okay thank you, I’ve had a fair few side effects mildly in the last day, mostly just horrible aches. My back, my jaw, my elbows, everything just aches. I’ve also had what I assume is some neuropathy, my fingers and toes feel slightly tingly and my legs feel like they don’t 100% belong to me. I am hoping I’m on the way back up now.

I bought a cheap exercise bike from Argos as I knew I wouldn't get to the gym as much, and do 30 mins in front of the telly most days. It doesn't really get me out of breath but it raises my heart rate so it's something.

The static bike kept me sane during chemo and I borrowed an e-bike to ride to chemotherapy. I am sure that gentle exercise and working at fitness after treatment is really important. There are studies showing that with 150 minutes a week of moderate effort the rate of recurrence of cancer drops by around 50 percent.
DDs wedding was wonderful and I rocked MOB with the biggest hat in town! We had such a fun day with a paddleboarding race between bridesmaids and groomsmen and all my favourite people there celebrating with us.
Not so good is my week of hospital tests. It is looking like I might have a new cancer in my opposite breast. Today I had scans and biopsies.Tomorrow is ear and brain day and I am quite expecting to hear it is all bad news. Quite honestly I am so fed up with going to the hospital I just want them to do their job and I won't give it any headspace. I go back next week for results and apart from DH I don't think I am going to tell anybody else at present. Let them enjoy their week of post wedding fun. The nurses all kept saying how unfair it is. Yes it bloody is!
I am thinking of paying for a genetic test if I really have had breast cancer twice in two years. Chunter chunter chunter.
It looks like you are stuck with me on this thread for a bit longer. I just hope that I can get away with a lumpectomy and radiotherapy this time and not another 18 months of chemotherapy. Fuckety fuck I am cross!
Love to all. May everybody else get good results this week to make up for mine.
Top x

PS Charity fundraising now up to £10000+

@ Topofthecliff Thinking of our during your trying week you get to be as cross as you like,fuck cancer xx

@TopOfTheCliff i am so sorry to hear your news. I have everything crossed you don’t need the chemotherapy again. Also, your daughters wedding sounds like a dream! How cool is the idea of paddle board racing on a hot summers day?!

So sorry to hear you have cancer in the other breast Top Hope it is just surgery and radio for that and the rest of tests are clear. Glad your DD had a lovely day.

Sorry to hear your update @TopOfTheCliff - it's just rubbish. Hope results come though quickly and am keeping my fingers crossed for some good news. I didn't tell anyone irl about the latest biopsies. I couldn't face explaining myself or indeed cope with their reaction. The wedding sounds a blast and I'm glad you had fun.

Oh @TopOfTheCliff, big hug. It really is unfair.

HC
X

I’m so sorry @TopOfTheCliff that’s so hard. So glad you all had such a fantastic time at the wedding. Everything crossed for you.

@Top so sorry to hear your update, so unfair. Sending you love and praying you don't need chemo Xxx

@TopOfTheCliff that is seriously shit news and I just hope the biopsies are clear. Do please post as soon as you have any results. I would definitely get genetic testing if it's confirmed. I know you must be so fed up - it is very disappointing.

@JeanLannes nice to hear from you too.

@TopOfTheCliff please get genetic testing done if you are confirmed positive. It could be information that could save a family member. In the meantime, hang in there!

I’m sorry, Top.
cancer is a despicable thing.

@TopOfTheCliff nothing I can add to other’s posts. So sorry.

I went back to work yesterday, phased return.
Its brutal! Do not know what to do with myself, am all over the place.
However, maybe raise a wry smile, a colleague said to me, you’re so brave to get your hair cut so short, I’d never have the nerve…erm, that’ll be the chemo luv…( no, I didn’t say it, I’m not that mean🙂) If it had been me, that’s the sort of thing that would have me waking up at night cringing for years to come.

@TopOfTheCliff What a complete arsebadger turn of events. Glad the wedding went well but cancer can fuck the fuck off now.

@Podgedodge it is a shock to the system. I was recalling looking forward to returning to work but now I wish I’d had another 6 months off. I’m compensating by using my masses of annual leave to have time off to recover.

I saw the lymphoedema lady yesterday for the first time and I left feeling much lighter than I have for a while.

Is it normal to develop nausea days after chemo? I’m on day 6 after first cycle and I’ve felt sick as a dog all day. I’ve taken an ondanestron (or whatever) this afternoon but it’s made no odds. Combined with menopausal hot flushes and some constipation it’s been a rubbish day and I feel horrible. Yesterday I was pretty much back to feeling normal. Is this usual?

I’ve checked my temp and it’s fine, so don’t think I need the chemo line.

Great
everyone’s normal is different. Keep copious notes about how you feel each day and you’ll see a pattern. If ondansetron doesn’t work against the nausea, get into the phone and get them to try something else.
you’ll find something that helps and then next cycle start treatment preventatively ( be it for pain or nausea). You’ll be an unwilling expert in your responses very soon:(

Great On my first cycle I took the 6 ondansetron they gave and got loads of side effects from those including constipation, bleeding, chest pain from indigestion and also felt sick by end of week from it. I was much better following week when I just took 2 ondansetron for the whole week.

I don't know if what you have is similar, its a case of keeping a diary of symptoms, telling chemo and adjusting meds until you get what's right for you. I also had to sometimes avoid anything creamy to eat though generally I had minimal nausea and sickness.

I am 7 days post radio and no symptoms from it yet and had call today and went fine.

Hi, ladies, need some support. So, the Predict tool has resulted in me being borderline for chemo-an added benefit of 3.2% over ten years. Oncologist has said it’s my decision! I asked her what she’d do in my shoes and she said she’d have it, but then she’s risk averse (as am I). The trust won’t do the Oncotype dx test, as I had one node involvement-ridic if you are in the grey area. They’ve offered me 4 x three weekly sessions of TC. My husband feels it’s s big risk for a tiny benefit but I want to throw everything at it. Has anyone had the onco test and had node involvement? Has anyone been in a similar position? Many thanks.