I have not been able to post much recently because I am glad to say I have been feeling well enough to go to work, I apologise in advance if I miss our replying individually as this thread is so active.
Rosie what can I say lets hope this latest blood clot is the last of your setbacks and you can put it all behind you, I am pleased that your sleep has improved with the help of sleeping tablets. My sleep has also been better I was managing 4-5 hours a night with 1 tablet until last weekend when I had visitors, I forced myself to stay in bed because I did not want to disturb them, then hay presto I have been sleeping for 6-7 hours although still a bit disturbed, looking at the clock at regular intervals. but then going back to sleep again, its as though some wierd body clock has been switched.
Eam28 It's really nice to hear about your cake making and it brings back memories I have made flowers, teddy bears and football pitches and various other gateaux over the years, it is really nice to absorb yourself in something artistic and tasty at the same time.
Unfortunately I cannot grow anything as I live in a flat with no garden, it would be lovely though, I have had a go in the past in my parents garden with tomatoes and strawberries in grow bags it worked well, I don't think the soil in the garden in London was much good its too clay based.
Keep cool ladies, it was 31 degrees in my living roon the night before last and 29 last night, it feels just right at the moment at 26.
I am making her a mr tumble one lovewine! So far made little coloured moulds of cake to go into the middle of the actual cake that i will hopefully make tomorrow,then decorate in the eve - fatigue permitting! Auw catterpillar ones - they always look fun - im not surprised your 23 yr old wanted one!:) xxx
Good to hear from you rosie! Even though you have been through such a lot it sounds like progress being able to be out of bed & go to the toilet etc. Hope you have a good nights sleep & feel a lot brighter by monday. Yes homemade ice lollies in the freezer - my daughter keeps wanting them for breakfast! Perhaps i should put some of wildpurls garlic in them that would put her off! Take care xxxx
Jos i hope you managed to go to the cinema with your daughter & the street party despite your mouth feeling so uncomfortable! There are lots of things to worry about through this whole journey - they do one thing to help but often seems to bring on other problems aswell! I had my lumpectomy & some lymph nodes out back in feb this year (had two ops to get enough clearance). You will be very closely monitored for things like lyphoedema - i was measured before the op & have been to clinics since so they should keep a close eye on you & nip anything in the bud. Both scars have healed very well - i only got a bit of fluid build up which was normal apparently & was drained every week. You will get your head around it all. Will help to discuss it with your partner,sister & professionals when you can to put your mind at ease im sure.
Lovewine im glad so far so good for you. Like you say you know you will prob feel it tomorrow\mon so hopefully you have made the most of today. Sounds like you had the energy to walk your dogs so thats good! I got up at 7.30 & went back to bed at 11am for a few hours. Popped out for a drive,fresh air & ice cream with hubby & little one just before the big rain drops set in! And am knackered again now! I can never get over how tired i feel! Having a little lie down now so that when little one has gone to bed i will have the energy to make a start on her birthday cake - she is 2 on monday!:). Hope you have a nice eve & lets think to this time next week when we will prob enjoy a glass of wine & feel a little more fresh!
Thanks Lovewine. Yes, it's awful when things keep changing. I find the uncertainty really hard in between appointments. Today I feel a bit cross - I think they should have waited until the results were there before seeing me. I did flag this up at the time as I was in the room when the onc made the appointment but she just said they'd take the chance and go ahead anyway. Surely it would be easier all round if they had the full picture. Will it definitely be a mastectomy for you? What are their reasons? (sorry if you've explained this already - i missed so many posts last week I couldn't catch up properly). I was told that I may need a mastectomy in the future if this surgery doesn't work properly. Now that I can think a bit more clearly I need to write a long list of questions for next time!
I hope you've dodged the rain. I walked in to town and back to do all the things I couldn't do because of late running GP yesterday. It might be raining but it's still very warm and muggy out there. Arrived back home in a tired and sweaty heap but at least I've had an hour of walking before lunchtime!
Thanks EAM, Nellie and Wildpurl.
I have woken up still feeling upset about yesterday. These past few weeks have seemed much harder trying to deal with all this, a small child and running a house etc. I can't wait for my sister to arrive next Saturday.
I've been googling and thinking about the LICAP and am quite comfortable with it I think. There will be a large scar running round to my back but it should be well concealed and it seems there will be minimal scarring on the actual breast which will hopefully retain a good shape. I just hope she has enough "side fat" to work with! I am more concerned about the node clearance. The thought of lymphoedema has always been scary. We all have to learn to live with the fear of cancer coming back and having to worry about lymphoedema too just seems too much. When the onc said I would not necessarily need a clearance perhaps I got a bit too optimistic.
I'm getting so many well meaning comments from friends about chemo nearly being over and "you'll be back to your old self in no time". If only they realised that breast cancer doesn't just get "fixed" like that. There is still surgery, rads, 5 years of Tamoxifen with the possibility of a whole load of new side effects, possible early menopause, threat of lymphoedema, fear of cancer returning. I know they mean well but.....!!!!!
Anyway, whinge over for this morning. I have to get myself together for my daughter coming back from her dad's later. I think we'll have a quiet day and go to the cinema later on. Tomorrow is our annual street party so fingers crossed for a bit of sunshine.
I hope you all have good weekends - sounds as if you will be busy.
We must have been all typing at the same time wildpurl & nellie! You both sound well though and you are both making me feel very hungry! Hope you both enjoy all your plans for the weekend:) xxx
Morning jos,what a horrible day for you - i really feel for you! The thrush must feel awfull - the sore,dry,tasteless,food feeling like glass in your mouth is bad enough! I hope after all that waiting the doc gave you some really good stuff & advice. My friend used to be a dental nurse & suggested eating mousses last round which went down well so have got some in for this time. I also made up a fruit smoothie too. Was thinking id be liquidising my sandwiches next!
Iv not heard of that operation before jos. How soon do they want to do that after chemo? Its so hard to get your head around things when they have told you one thing at the start then change things! A few ladies going through this sort of thing on here at the moment - almost better if they dont say too much in advance if theyre not completely sure! I have found you do need to keep on top of them a bit - i have an on going note book as quite often go to appointments on my own - theres things in there like scans & genetic testing that they said they would do at the start & not heard them say since so i keep pestering them with my little book - bet they love me! Fingers crossed everything will be more clear for you soon & your s\e's start easing up,hugs to you.
Rosie with everything youve had back to back im not surprised you havnt been on. Hope you are getting all the rest,good care & advice you deserve.Thinking of youX
Hope everyone else doing well & manage to have a fairly normal weekend xxxx
Sounds as if lots of you have had an eventful past few days and I have a lot to catch up on so here goes!
Rosie I am sorry to hear you had to go back to theatre (and woke up in there) but it sounds almost fortuitous you went as they found and cleared the blood clot which could have caused problems down the line. I hope you are recovering well.
Lovewine I hope you are bearing up after chemo and not too down over the prospect of having more. I think you are being incredibly brave about it all - well done you.
Congrats to all those who have had their last chemo - Joan, Eam, Booksandwine, Wildpurl, let’s hope the side effects are less with the last one and you all sail through. I agree EAM it is a shame we only find out how to deal with the side effects as we go along and by the time we get it sussed it’s too late!
Jos I am sorry to hear about your low mood and tiredness and hope it has passed. Sometimes I think that is worse than pain and discomfort as it renders us so helpless, and is difficult for others to understand especially our nearest and dearest. What a palaver over the pharmacies - well done you for having the energy to traipse around locating the drugs which I hope do their job quickly. I know it was perhaps not what you were expecting but the LICAP procedure sounds positive (I just googled it as I didn’t know) as you will have a good cosmetic outcome. However it is unfortunate you have to have two ops - is one for the lump and the other for the nodes? I am sure your sister will understand and spoil you rotten during your recovery!
Jackie it is strange the chemo/injections seem to give you a temperature (as well as everything else!). Here in wales I get one big injection of a slightly different drug exactly 24 hours after chemo but have also had slight temperature issues the first week. Can we conclude therefore it’s the chemo causing it? Don’t suppose we’ll ever know but I hope your OH manages to chill a little - I think it’s very hard for them sometimes but equally important you do what is right for you.
Rolicarpit - you’re off at last! I hope you have a wonderful time Cornwall is such a lovely county. Definitely a glass of wine and possibly some Cornish crab for me! I have kept my holiday plans in the back of my mind as I didn’t want to tempt fate. However it is looking increasingly likely that I may actually manage to get to our friends house in Devon for week 3 after my last tax. It’s a big gathering of families so great fun for the girls and adults alike.
Well no gardening today as its chucking it down! Wildpurl you made a good decision to harvest your lovely veg yesterday! I finally got around to making blueberry icecream which has so far met with disappointment from my daughters as they say it tastes synthetic. I’m not sure why but maybe it was because I used a metal sieve and not a plastic one as advised by Delia? I hope some friends will pop in today on their way back from holiday for a chat which will make a nice change (maybe I can palm some icecream off on them!?)
We also have Sunday lunch out booked for tomorrow with the whole family including my sister in law from NZ who is staying with us for 3 weeks. It was difficult to explain to her that this was the only Sunday I would be able to go out as I have chemo next week. She arrived on my day 7 and so far has not really seen me do anything other than sleep a lot so I don’t think she understands how foul it can be.
I hope you all have a good day whatever life throws at you! At least no appointments during the weekend!
Well that was a day and a half. This morning sat in an already warm waiting room at GPs having hot flushes for an hour and a half. Yes, I have oral thrush. Also woke this morning with a cystitis-y feeling so have some antibiotics at hand. I then had to trudge around in 30 degrees having more hot flushes trying to find a pharmacy that actually had all the meds on the list - had to go to three in the end. I was exhausted when i got home.
My surgeon's appointment didn't go as well as I'd hoped. Last i'd heard from my onc was that, yes, lumpectomy and partial node clearance. However, surgeon has said she will do a LICAP procedure as the area she wants to take is quite large (in addition to the lump they found a few tiny patches further down). This is when they take tissue from your side just round from your breast and pop it in. Trouble is I'm quite slim so don't really have much to spare (I've kept to a "lean and healthy weight" as recommended and now it seems I don't have enough fat!) She wants to do it in two ops, two weeks apart which was the first I'd heard of it. I was disappointed as my sister (coming from NZ) has based her dates on one op only. She then said node clearance was standard and that's what she would advise (contrary to what the head of oncology told me). Most annoying of all was that she didn't even have the results of my MRI so there is still so much uncertainty and it looks like I shall be in limbo for the next three weeks. She can't say anything for sure until she's seen if anything is left and where the markers are in relation to each other. Sadly my partner couldn't make it at the last minute so I was on my own, got upset and now can't remember some of the details. Has anyone here had or will anyone be having a LICAP?
EAM and Wildpurl - hurray for your last chemo!
Lisa - have a fab holiday in Cornwall.
Jackie - no, you are not being selfish - you have to do what is right for you. I do my injections in the morning but I've luckily not had any side effects from them (unless I am mistaking them for chemo ones!).
Rosie - oh gosh, waking up in the theatre! Glad you have got it sorted though and out of the way.
Sleep well all and hope you have lovely weekends if you can.
What a productive afternoon wildpurl! Am hoping to get more green fingered but havnt got a clue! My sister said she will help me get some things established in our garden which will be nice. I managed to get out this afternoon after the nurse had been for injection & take my little girl to the park. Then cooked chicken & pineapple with new pots,rocket & watercress - didnt taste that great so maybe mouth is going already?! Shame as was hoping to fit a takeaway in before the s\e's kick in too! Xxx
Hello all,managed to keep going all day as normal - think the steroids definitely mask a lot! Glad hubby has just come home now though - getting 10mins whilst he takes little one round the block. Thank you for all your lovely last chemo posts:). Yes it feels great but not really sunk in yet - like a few of you have said - dont think it will feel like the last one untill all the s\e's are out of the way! Had a couple glasses of bubbly last night though!
Yay rosie good to hear from you! So good they caught that blood clot - could have been so serious later on down the line un noticed! Sounds like you must have been near the top of the list like you hoped. Hope they continue to look after you well in there & make the most of it wont you!xx
Wildpurl well done on your last one! I dont blame you getting emotional - you dont think this day is ever going to come do you?! Good luck for the next few days ahead.
Joan47 hope yours has gone well too? And you managed to get sense of your results at long last?! I had reflexology the other day too - lovely isnt it & very interesting! Thinking of looking up a course to do in it myself.
How are you doing lovewine? I know you struggle on tax:). Thinking of you x.
Dont you go thinking like that jackie! Of course not - like others have said - you have to do what feels right for you & when you have found ways around things that make you feel slightly better or in control its best to stick that way! My hubbys got a bit ratty at times - he still needs to get enough sleep to be able to go to work & run his business but not easy with life at home so un stable for the last 6 plus months. Agree with wildpurl & it must be so hard to know how to deal with us at times!
Have a great holiday rolicarpit! Sounds brilliant! Im counting down the weeks to mine now! And nice to hear about fewer s\e's for last one - we shall see!
So sorry to hear you felt so low again jos:(. It really does make you feel awfull & lost doesnt it?! Hope the doc has helped with youre mouth? I have been using difflam mouthvwash & just discovered 'gelclair' - its a really think gel to coat your mouth for a minute. I got a small free sample from their sight so showed chemo unit & doc & got a prescription for it. So can use it in abundance this time & see if it will work! Its a shame you dont always know about these things untill it is too late!
Hope everyone else is doing well xxx
Evening all,sorry not got the concentration to reply individually. Had last chemo today! Hasnt really sunk in yet. Will await date of ct scan & hickman removal in next few weeks.
Sorry to hear about all the confusion with you lovewine - how disapointing! Hopefully they will tell you soon what road they will take but like joan says - niether is much to look foreward to! Thinking of you hun xx
Oh rosie more for your poor body to go through:(. At least you havnt been sent home for possible problems to occur. Hopefully this time tomorrow you will be on the road to recovery. Sending strength to you - you have been through so much. Xx
Good luck to all the rest of you lovely ladies - chemos tomorrow etc.
Hoping to watch master chef now without nodding off!
Sorry not to have posted for so long - it's been a very up and down week.
I'm on day 11 of Tax 2. As I've mentioned before, the only consistent thing I've had with every cycle is a very low mood after coming off the Dex steroid. Last week I had the worst emotional crash yet. I was very down and teary all day and could barely string two sentences together. Telling myself it is only a side effect (I am usually very upbeat and positive) made no difference and it was all a bit scary really. Fortunately it was a short sharp shock as it didn't last as long as usual so by Friday I was feeling better. Then at the weekend an incredible tiredness and lethargy struck - more so than I've felt before through all this. I just stayed on the bed all day Saturday watching back to back episodes of Breaking Bad. At least the aches and pains were better this time but I have had trouble with my mouth. It usually goes a bit dry but this time I have a really horrible taste and all food and drink is just digusting. The chemo unit gave me some mouthwash but I am going to the GP tomorrow morning to see if it's oral thrush or something as it's not going away. It was my birthday on Tuesday and attempted the local "dessert parlour" with my daughter after school and then dinner out with my boyfriend and everything just tasted awful and I couldn't finish either.
Other than that have been busy with end of term school stuff - sports day, fair etc and medical appointments. Had an MRI on Tuesday and have my first surgeon's appointment tomorrow which I'm getting a bit nervous about.
I've had so many pages of posts to catch up on that I don't think I can reply to all individually (falling asleep here already!) but...
Rosie - I've read all your posts about your surgery. So sorry that you have more to contend with tomorrow and wishing you all the very best. It must just seem neverending for you.
Lovewine - how disappointing and frustrating. Thoughts with you. I think that's exactly why I am nervous about my appointment tomorrow - finding out things aren't what I'm hoping for at this stage.
Joan - sorry to hear about the confusing report. So frustrating for you and waiting for these things is always stressful and upsetting.
Cassie - so many ops, my goodness you have been through the mill.
Tlj - well done on the tennis. I play tennis too but have suspended my club membership and will have to wait to see what kind of op I'm getting and how quick the recovery is. It's great to hear of someone who has got back on the court - very encouraging.
A bit of an old discussion, but re dairy - I read a lot about this when diagnosed and have substantially cut down. I've got a reasonably healthy diet but I do eat a lot of vegetarian food (I do also eat fish and chicken) and have gone pretty heavy on the dairy in the past. I went quite hardline on it initially but have eased up a bit as I think it's more about an overall shift in habits rather than beating yourself up over individual indulgences.
Sorry not to reply individually to everyone else but hoping that you are all doing ok and wishing you lots of luck and positive vibes wherever you are with procedures/cycles.