Hello and sorry for silence, I’ve not had a chance to go on my iPad as have had kids off school and a friend staying (she braved 5.5 hours public transport through the snow to get here- dedication indeed).
My results were delayed which has been hard. We have done a lot of floor pacing, I won’t bore you all with the details and frustrations but got them on Friday whilst sledging, so couldn’t hear too well. I think my surgeon said that the multiple lung nodules look unchanged which suggests unlikely to be secondaries which is good news. But for some reason I now need a spinal MRI to check out the abnormalities in my spine and hips. I had a PET scan last summer when diagnosed to check out those bone issues and the PET seemed to suggests the anomalies were not cancer so I wasn’t worried. My surgeon said this next scan was for reassurance. She asked if I had back pain which I didn’t but I do now- the power of the mind ! I hope!
Everyone here is delighted re the lungs. I don’t think they understand that there is still uncertainty over my bones, but guess no need for others to be worried. All of us here are going to have to get used to living with uncertainty but I suppose at times some of us have a bit more of it.
Im hoping this latest scan though will at least enable me to get the iv Zometa that others in the UK are getting rather than an oral bisphosphonate called ibandronate with less evidence of effectiveness. I’m seeing oncologist on Tuesday so hoping it isn’t too much of a negotiation!
Our snow is turning to slush now and sledging is muddy. Glad your car is ok Fairydust and that you can get to the radiotherapy. Sorry to hear your hip painful, and yes agree needs checking out if not getting better. The radiation from XRs and scans appears not to be an issue once you already have cancer, it is all relative!
and Cathy I hope you are having a wonderful weekend. It must be hard celebrating a major and emotive birthday in the midst of all of this. And Mrs Meow it is good that your energy levels are returning. I’ve also been a lot better in the past 3 days although sleep is a bit erratic. I have got some melatonin Cathy- I had it for jet lag after India last year but not tried it this time.
i get my next zoladex tomorrow and start the letrazole too. My ovaries and tubes are being surgically removed on 14 April. I’m slightly anxious about the Pulmonary Embolus issue. I’m due to finish my daily injected anticoagulants in 2 weeks but looks like I’ll go back on them after the op. I have got used to self injecting although can’t say it is fun.
I’m v pleased we still have an NHS even if it is a bit decimated! Im certainly getting my money’s worth!
Dog is on my clean white duvet. She’s is a lovely companion but a bit grubby! I wonder how Merlot and CK are?
Wow Cathysid, have a great journey and weekend...relax and enjoy the cold crisp fresh air in your lungs..bliss!
MrsMeow, I was thinking of you when I was getting to hospital the other day, I wondered how difficult it would have been for you if you rads appointments hadn't already completed, good timing for you..Good job! Glad you're ok, and don't worry about having given in to fatigue, it's the only thing you could have done..Well done in your recovery, hope it continues for you...:-)
Jow, also thinking of you. Really hope you're ok.
And yes, last week was a tough one for me. My first week of rads, but my amazing friends and family got me there on all days bar one day when we had the worst snow ever, and I took a taxi. Fortunately, somehow taxis were still operational, and only had to wait 25 minutes for it to arrive for the return journey..I did give a tip on both journeys..
However, my car is now out of the garage, and cost less than I expected, so all good. Turns out did not need a new alternator as the AA thought, just a new fan belt and new earth wire. So I'm mobile again and may be able to drive myself to rads next week. I do feel a throb in my affected area on the left, but nothing major yet..they recommend paracetamol or ibuprofen if it gets bad. But they say to use any lotion to cream myself and to bathe and shower as normal..which I know hasn't been the case for other ladies, but my routine for bathing hasn't had to change which is a blessing as I love a bubble bath..
I do have a sore hip which might be a chemo after effect..really hurts when I get up and do anything strenuous. My rads consultant says to see how it goes and an xray will be organized if it's still sore at end of rads, so I'm limping now which makes me look worse than I actually feel. I feel fatigued but ok so far .. Hope not to feel any worse than this but we'll see... Just really really glad chemo is over..!!!
Have a Lovely day today all!
Hi Jow, best of luck with your ct results, when are they due?
Perhaps have a drink of pinot grigio as cathysid suggests..Great to hear that Cathy!!great research..I will avoid the jackfruit though Jow!!
Hope you're all coping with the snow..I've had 3 treatments so far..number 4 today..hoping I can get to the hospital..Will be booking a taxi to take me..don't want friends or family struggling to take me, and my car is in the garage! I feel a bit of throbbing already from radiotherapy, so must apply some cream or something I guess more regularly.
Still, nice and cozy at home for the time being..at least I don't have to try to get to work or anything..Hope you aren't so tearful now Cathy, but I do understand your feelings. A weekend away would be fantastic but do be careful if you do travel..
Talking of exercise Jow, there is a centre where I live where cancer rehabilitation exercises are held for free..I may join this. Will be good to meet other cancer patients face to face.
Sorry you’re not so great Cathy. Not surprising really- it’s been a long time of not feeling well. One day we will hopefully all feel a lot better and this phase will be a distant memory.....
Not much snow here yet but gather it is coming. We have friends due from Brighton and Nottingham this weekend so hope they can still make it. Husband is dusting off the toboggan bought 4 years ago and not used due to lack of snow.
Hoping Fairy that you and the other radiotherapy girls are doing ok? My skin was fine throughout although it was sore when I tried wearing a bra and prosthesis for the first time yesterday. I sslept most of the afternoon and evening yesterday- the fatigue is considerable at times, but I am def a lot brighter today, 2 weeks post radiotherapy.
Glad to hear your exercise programme is free Cathy. We have to pay, not loads (£10 induction plus £3 per session) for our gym based Post cancer programme, but enough that some people would need to think twice about it. I’ve joined and luckily there was one person I’d met from the younger women’s weekend I went on, as otherwise it would have been a bit isolating being so much younger. I spent today at Penny Brohn doing jewellery making and yoga.
The jackfruit didn’t quite fool me into believing it was pulled pork. I’m now just sampling some alcohol free wine (again not convincing) whilst baking our sweet potatoes.
Need to distract myself tonight as CT results day is looming. Think it is easier this time. Perhaps these things do make you stronger or more able to deal with uncertainty.
Brrrr!! Freezing!!!!! Thanks MrsMeow, my car is out of battery still. My brother will sort it today..but a lovely friend is battling the weather today to drive me to rads...blessed am I.
My appt is at 10.20 so getting ready to go soon. We get given a blue thick cotton top to take home and wear each time. With zips for them to allow easy access when I'm on the table or whatever you call it. My tattoos are so small I struggle to find them, so I hope they can see them.
I have aqueous cream and another cream I've forgotten the name of just now.
Good luck to all this week's rads ladies!!
OMG..Just realised my rads starts Monday not Wednesday..better get the AA out today after all.
Don't know what's the date....
Thanks MrsMeow, very comforting words. 🙂
In terms of rugby, I'm torn between which team to win. I like them both, but I'm born in England so should really cheer them on more than Scotland..which my friend supports...but he's not here..
Anyway, enjoy the sports, it's also GB women going for bronze in the curling sometime today..I've become a curling fan, as I do every winter Olympics. Learned the rules and everything..It's so tactical..
My car isn't working and I have rads next week starting Wednesday..I'll call the AA on Monday as can't be bothered today..So lethargic.. 😞
Oh MrsMeow, your OH sounds lovely, and I'm absolutely sure you would be just as great looking after him as he is of you. You sound like a lovely warm person. 🙂
But I'm sorry you have pain. Not what you need. Again Epsom salt baths really help me, but then I Have lots of codeine phosphate tablets from my gp which I am eternally grateful for if I have too much pain. I recommend them.
I'm glad you got out and about planting Apple trees. I actually bought some artificial trees for my front garden as too impatient to watch trees grow, but I do love real Apple blossom. Will they bloom this year?
Cathysid, glad you're having a lovely weekend in the sunny side of the UK! You must be relaxing well. I hope so anyway..The grass is always greener isn't it? Sometimes what you have appeals to me, a blissful house full of children's laughter and a lovely OH who adores me and is always there. What's not to like? Except the early mornings, the school runs and the constant attention seeking...but you clearly handle it so well...not so sure I could though..:-)
I am in awe of all parents .. they're amazing..should be paid to be a parent. It's such an important role in society..
I have let at least 3 people down this week by being a grump, if they would just leave me be it would have been so much easier, but all their fussing made me pull away and just want to hide..I do think they just want to feel better by helping me, but I don't always need or desire their help, so it goes unappreciated..It's so frustrating for me. I tried telling them to leave me be for a while but fell on deaf ears...what to do.. except just say no. And thus cause upset..(sigh)
Thanks for the herbal and vitamin advice Cathy, they're new to me except for vit D. Will take a look as don't take much herbal stuff except Kalms for anxiety.
So, night night all.
Hi Jow, you can be as much of a martyr as you need, it does no harm. You need to put you first. I was told this and its good advice, although I sometimes forget and have to rein myself in. Once a people pleaser always a people pleaser I guess.
Hope the rehabilitation goes well. It sounds like they're going to do right by you. I know what you mean though, a quick sudden death as opposed to otherwise...makes you think, but best not to think I guess.
On matters of the heart, I watched Emmerdale tonight, beautiful love story of Robert and Aaron, at the end I was in tears, I love a good love story...waterproof eyeliner would have been needed I was wearing make up..
Hope middle child stopped being scared, and you had a great dinner party. Night night.
i was complaining to my radiotherapy oncologist today that I was still so tired. She reckoned chemo side effects last up to a year. Great! Apparently I should start to feel a bit better next week from the radio side of things.
ive not been sleeping so well, so had to resort to sleeping tab at 2am. Not sure if it’s due to my induced menopause or whether I’m worrying about my CT scan resultts. I need to wait til next Thurs for those.
On a more positive note, today I bought a waterproof eye liner and a Maybelline tattoo eyebrow kit thing. You draw on the eyebrows then peel off and they apparently last 3 days. I also have started Replens- a vaginal moisturiser which you apply every 3 days. Both ends covered then! I think I look better than I did thankfully despite only a bit of head fluff and no eyelashes.
I also had my induction at the gym for a cancer rehab programme and was delighted to be told that although I’m still heavier than I was, my percentage of visceral (internal) fat was the lowest the instructor had ever seen! Looks like I’m less likely to die of a heart attack then, although that may be preferable ......
We have friends around in a minute for supper but middle child says he is scared so I’m sitting outside their bedroom. Having recovered from my vegan feast cooking last weekend, I have today bought a can of jackfruit. Apparently it is just like pulled pork. We have our new book group supper here on Sat night so they will get the real meat, although I am tempted to try the pulled jackfruit on them.
Im still spending a fair bit of time resting too and Mrs M I am still watching a bit of TV in bed. I am definitely coming round to the idea that we need to look after ourselves. No good to anyone if we don’t give ourselves the time and space to recuperate. I think I do subconsciously like to be a bit of a martyr at times. Not that easy to change a habit of a lifetime though.
Hi Cathy, Ohh, really jealous of your holiday cottage, where will you be?
Sure it will be relaxing!
I've got leg ache too, but didn't think it was the chemo after effects, but it must be. Maybe exercise will help, but lacking motivation or energy to do much. Am sure one day this will come back, but too cold to go out and walk or I'm just too tired all the time. But have a list of things I would like to do, one of which is to finally learn to ride a bike, but best buy one first! Perhaps in summer when it's warmer.
I've found I'm avoiding crowds of people still, don't want to go into the town or anywhere very busy, cinema, restaurants. Just staying home, but am happy enough. I do like my own company, and family and friends visit me at home but only when they let me know they're coming. Don't appreciate surprise visits as don't always want to talk, hold a conversation. That's hard sometimes, to talk.
Anyway, hope everyone is having a lovely day.
Hi MrsMeow, wow, well done on end of rads!! How you did those journeys is incredible!! I do hope your side effects are not too bad for you as some people say that they are worse a few weeks post rads treatments, so still take it easy. I know there are years of tablets for you, and wow, 4 calcium tablets a day..that's a lot too. The things we have to do ey?
It's clearly been quite a journey for you, and you've helped us through our journeys along the way, for which I for one am very appreciative.
Good luck with your job search too. All the adversity you've had, such very bad timing. 😞
Hi Ali. How are you now you're home? Hope you're being looked after? Rest up and sleep lots!
I'm putting off doing the vacuuming, but will have to get onto it sooner or later. Am distracted by the bobsleigh on TV ...but if it wasn't that am sure it would be something else...:-)
Hi MrsMeow, oh how terrible it is for you. Joint pain is deeply painful and hard to massage away. Epsom salt baths help me, or essential oils in a bath like lavender. I recommend the live better with cancer website for the purchase of products that can support you. I have a microwave able heat body wrap with lavender from here. I do hope you find products that help you too.
All best. Hope your day is going well in the meanwhile.
All the best for today Ali!
And Happy Birthday Cathy- not sure exactly what day it is but hope you had a lovely time celebrating at the weekend.
Wishing you all the best for your surgery tomorrow. Surgeons are amazing. You'll be well looked after. Hope you are sleeping now, resting well beforehand.
Let us know when you're out of recovery and in your ward bed.
All the very best for your op tomorrow, will be thinking about you.
Sending loads of huggles