Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

@ClashCityRocker @AGreatUsername

Also early menopause here at 42, I think the sudden shock of a chemically induced one gives you no build up.

@ClashCityRocker I had a sort of period about two weeks in to radiation, then that was it. I didn't feel there was any support at all for the menopause symptoms or the fact that it's an early one, but I'm seeing the oncology menopause doctor in July.

Ooh how have you found it? I've been trying to put it into the back of my mind and focus on getting through treatment but it is another worry.

My mum went through it (oddly enough due to a RH for cervical cancer) and I remember at the time I thought she'd lost the plot - I was a hormonal angry teenager at the time so possibly not the best combination! I think she struggled a lot with it, although I'd hope things have moved on a bit in the last two decades.

Hi all and welcome to anyone new, sending everyone hope and positivity.
I got my date for surgery on Friday, it’s 3 July. The date works pretty well but I still don’t know what the surgeon is actually planning on doing considering my MRI suggests I’m cancer free.
Any top tips for surgery and beyond, particularly considering I’m going to be alone with the kids? I am really really hoping dd1 passes her driving test next month because that would be a huge help

@ClashCityRocker I am not sure if you were asking me or JIL but I’ll tell you my experience just in case!

I have found menopause mostly okay. I started having hot flushes within days, and my memory was initially terrible. I’d use the wrong words etc. But, it mostly settled down after a few months. I still get hot flushes daily which I deeply dislike and they wake me up a few times a night. I can’t take HRT so have just been prescribed Sertraline to hopefully reduce them. Only 40% of people find they help so jury is out on that!

Otherwise it’s been ok for me. I have also had no support from any direction though and we do not have an oncology menopause doctor here in south wales. I have asked to be added to the list for a DEXA scan for bone density due to the osteoporosis risk.

@ClashCityRocker to be honest I'm not sure what has been the menopause and what has been the after effects of chemo and radiation.

I've not had many/any mood swings and have not been acting irrationally (that I'm aware). I had a fair bit of hair thinning but that could have been the chemo. I had my really long hair chopped and that seems to have sorted it, am definitely more grey.

Brain fog, but again, is that chemo.

I have the skin of a 14 year old boy and a pretty bad outbreak of rosacea but I got some treatment for that and it's fine now.

The hot flushes at night have been crap and I've had really bad insomnia but that could also just be down to worry.

Ii'm managing alright though.

Does your treatment start next week? It's all a bit overwhelming but once you get into the swing of it, it's okay (well apart from having to give yourself an enema daily, that will never be okay)

@AAGreatUsername @JJlL2013 I'm happy with all the info I can get at the minute! Thank you for sharing.

Yep, treatment starts next week. I will be glad to get going with it all and fingers crossed that any side effects won't be too bad. Yup the enema is definitely not fun, but I must admit I found the full bladder worse during the planning scan.

@ClashCityRocker all the best with it, will be thinking of you x

Good to have the date, so you can plan stuff knowing what's going on. At the risk of being boring (having said this before), please take it easy after the op, nomatter how well you feel.

I felt great and pretty much carried on with my life, which (my theory) caused me to develop a hematoma. We went ahead with the RT within the 12 week window which massively impacted the wound healing (or not!), and now 7 months later I still have an open wound. Possibly looking at another op.

So - get lots of books, a list of programmes you want to catch up on and - if possible - a servant! I'm sure it will go well, and be good to get it over. Good luck for when the time comes.

Make a list of comedies you havent seen. Schitts Creek, the American version of The Office, Only Fools and Horses whatever floats your boat😃 Honestly you need to laugh I avoid anything too gritty apart from Succession which tips me over the edge every week my blood pressure must go through the roof! I cant concentrate on books but Audible has come into its own. Play music. Try to eat well. Not easy Im starving all the time and crave bread and jam. My consultant said lots of dark chocolate. Aldis mint is the best.

good luck.

im having a very lazy morning. Today I feel so much better. Just missing that one chemo a month makes the world of difference.

Glad you're feeling better @EachandEveryone - and taking it steady!

Good luck with the op @bringonyourwreckingball and glad you're feeling better @EachandEveryone

Nothing compared to what some of you are going through, but I've started getting pain in my pelvis near the hip. They did warn me about this as one of the lymph nodes is swollen and pressing on a nerve. The pain itself is manageable - I've had worse after overdoing it at the gym - but it's playing with my head a bit, like a constant reminder.

Going to cut the lawn as I'm getting disapproving glares from the neighbours and hope it distracts me a bit.

Take it easy @ClashCityRocker you need to get to the starting line in good shape for this marathon.

I got home from my mini sailing adventure absolutely shattered but happy. I also took my last dose of round One oral chemotherapy Cape last night and oddly got lots of side effects. Nausea, hot hands and feet and aching joints. Maybe it was dehydration or the broccoli I ate for supper. I’m a bit better this morning. I now have nine days off before round two so am hoping for a bit of respite. Today will be a recovery day.

@Top I'm on oral chemo Niraparib which I take every day. I was told to drink loads when I started but this was to keep UTIs away as that's a common side effect. I do find that when I haven't drunk as much as usual then I get terrible joint pains. Hope you feel better soon.

Had an MRI recently and the results appt on the 4th confirmed IDC 26mm. It did also show however two areas of "stringy bits" which I'm now waiting for another ultrasound appt for. The consultant said they didn't know what it was but from my own research its looking likely that these two "string bits" are likely to be lobular cancer. I've read that lobular cancer grows in lines/sheets rather than lumps like ductal cancer which could be what she is referring to when she says "stringy bits". One string is coming from the ductal cancer to the nipple, the other is in a different area but reaching the nipple also. Has anyone with lobular cancer seen their MRI and know what it looks like? I may be catastrophising here...

Yes I had 2 lobular breast cancers and does grow as a spiders web at first but having 2 didn't make any difference to the treatment as was in the same breast. They also said for survival etc they only count the biggest rather than add them though she did say bit of a grey area. But basically if its in the same breast it may not make much difference.

Though both mine they said 100% certain cancer when they looked at so stringy bits might be more hopeful. They did miss the one at first.

@TopOfTheCliff look into the role of folate/folic acid/B6 on hand/foot syndrome and Xeloda. Ive known of more than a few ladies who have managed this side effect by watching their folate intake (which sucks because its tasty things like greens and beans!). Supposedly its mentioned deep in the drug notes and warnings, but do a bit of research. I imagine the cooked broccoli delivered a bit of folate sledgehammer right when you achieved full drug levels in the bloodstream!

@Scandimandy I can’t offer any wisdom on the stringy things but understand the tendency to catastrophise. Try not to go down that hole and Don’t Google!
@Fantasea it’s frustrating that the chemotherapy nurse I saw didn’t know anything about folate with Cape. My diet is almost all folate rich foods: nuts seeds fruit green veg beans pulses etc. I decided not to go to a low folate diet unless I have to. Think white bread and ham sandwiches. My oncologist is calling today so I will ask her. Things are better happily.

Who watched the Eurovision semifinals? I loved it
Top

Radio 11 of 19 today. Nice early appointment, so out of the house at 6.45 and home by 9.30, and a good drive on a beautiful sunny morning. But can I have a small rant about something trivial? My pass for free parking hasn't worked in the car park for the last two days, so I had to buzz security to be let out. What do they think might be wrong? Ah, it's probably expired. Can they extend it? No - I need to get another sodding form from the RT department to say my treatment is still ongoing, fill it out with a pen and take it by hand to their office which is a trek away on the other side of the (massive) hospital site. For me, it's just annoying as I'm young and fit. But most of the people I see waiting in the RT department are frail looking older people. Why do they make something so basic so hard?? I assume this happens all the time. Can no one send an email?? Rant over - as you were.

Thank you @Silkierabbit , @TopOfTheCliff .

Well, my surgeon randomly called yesterday. I was at work, (and despite being a lazy, phone mad teacher😀) I did not answer. She then called my home number and my DD answered, she left her name, said she would try again, and not to worry.
No call today though, I can’t phone back on number stored in my phone as hospital numbers have a blocker on them. Sure I could phone her secretary tomorrow, but she probably would just say she’d call me back so really no further forward.
been two weeks since I saw her when she told me biopsy was fine. Cannot imagine what she might want?
And lovely as she is, and she is, of course I am now worried!

I feel your pain @Podgedodge Missing calls with no way to phone back is so frustrating. Gah.

Ah nowt worse than a missed call with no way of getting back!

It seems the calls from the hospital im under all come up as the same number regardless of who's ringing so then it's a ring round the harem of medical staff I have acquired to find out who wants me and why. They don't seem to leave messages either - and the response is usually 'dont know but I'm sure they'll ring you back!'

A similar thing happened to me today. Instead of my consultant phone appointment it was, I suspect, the nurse who previously rang me and left no message or phone number and my chemo session got cancelled and I got the blame for it. Well she never said her name this time. My cycle in june needs adjusting as Im at Glasto and she suggested moving the whole thing by three weeks so it starts end of June. I was very greatful but as soon as I put the phone down I realised it starts the day I get back from Glasto which I cant do as need to take bloods. These with held numbers are the worse. I called the nurses bleep number and I was mortified when an oncologist consultant Id never heard of picked up😮 as if they arebt busy enough! Bless him he really tried to help me and I was like no, honestly its only Glastobury I will call back another time.

BTW does it seem abit much moving the whole cycle by three weeks? I really only wanted to move one treatment by afew days.

i had my covid vaccine today. Iv had terrible heartburn since.

@EachandEveryone , sometimes the systems just make it seem like wading through treacle! Hope you can get appointments for bloods sorted and that you enjoy Glastonbury, and really really hope weather is kind to you!
@dotty2 , @ClashCityRocker , it just adds another layer to the stress, even though I know it’s necessary, surgeons/consultants cannot just be taking phone calls at all hours of the day, but it just is another way of feeling helpless I suppose which maybe why it’s hard to shrug off?