I have been re- reading the posts and feel such a wimp to feel so sorry for myself when I see what some of you are experiencing is so much worse. I have had my arm measured and although there is swelling it is hoped to be post operative and with the daily exercises hopefully it will get better. I went to a macmillan coffee morning today that a friend of mine was holding and it was astonishing to see in the room there were more women (all friends or associates that live locally) that either have or had cancer of various kinds than women free of it. What is happending in our environments that is creating this epidemic? it can be said that cancers are now picked up earlier (thank god) but when I think back on my mum’s generation the marjority of them got through to old age before they experienced problems or maybe I was just lucky not to be aware of it. Maybe we all have weaker immune systems today.
Anyway thinking of all of you and sending healing thoughts to you all.
Hi,
splat splat splat - bounce has gone, no more dex to spring me along but no sign of sleep either. Not such an exciting combination. The blurry eyes are coming in fast and had to be within 2 feet to read the Sky headings tonight so driving temporarily banned! They are also watering all down my face. Dry mouth and watery eyes someone is playing games with my water supplies! Got my hubby to test the replacement saliva and he survived it ok so might be brave and have a go. He put me off by saying it tasted like plastic and not ready to add plastic to my horrid tastes.
Angie hope the ulcers go soon. I might regret saying this but I have not had one ulcer throughout, strange as I had so many other mouth problems. Things affect us all so differently. Hope you are working your way back to top form gradually. Joanne how is the latest dose going? Sorry to hear about all the broken stuff though. Kirsty so glad to hear that you got this dose in and hoping it will be the best so far- which with your terrible luck won’t be too hard. good luck. Nicky hope the chief stabber was in and got you first go and that the results are very worth all the trouble to keep cheering you along with the rest of the treatment. How did the drink go? Bevy no more wimpy than me. You moan all you like and so glad to hear that if it is post op, they think you can still expect a lot of further improvement. Hope it comes real soon for you.
I was very surprised to receive a rads planning letter today to go on 24 Oct which means I would still have 2 more chemo visits to go after that. Do you think that seems early? It was also 3 days after the next dose so asked for it to be delayed a little to a better week as quite a journey and my eyes go so mad I can’t drive that far. How long did anyone wait after chemo to start theirs if anyone except Lisa has? Also I was told my port has to come out after chemo, which I took to mean before rads. The cardio guy put it on the cancer side and within 3 inches of the tumour site. Not sure if they will fry the port too or need it out but then would they fry me with recent surgery? Will be making a few calls next week to ask for some advice in case I need surgery booked ready. Also got a letter to say my stat sick pay stops soon and will have to go on incapacity benefit, made me feel quite sad, like an old wreck. So took the bull by the horns and wrote to my boss to invite him to consider paying me in full while I am still having hospital treatment. Will keep you posted but won’t be holding my breath.
Hugs all round. Who has anything on treatment or appointment wise in the next week as wanted to wish you well
Lily x
hello lily and all you other brave hearts.
I,m Lee and careing for my princess(oh).
She soon to have cemo and not in to good away ay mo. Can read my forums under friends and relatives but they prob not going to cheer you up. Glad to hear your hubby with you. I,m trying my best with jill but at times real hard to hold it together. Got an appointment next wed. so treatment will start soon after. We dont know much about it apart from obvious but the best of luck to you all and i wish i could share some of the pain, though not to much…i am a man after all.
Lee
Lily - the water drink was much better than the ‘smoothie’ - at least it tasted like it said! Well the ‘good’ hand and arm were no good and yikes they had to use my bad arm! This hasn’t seen a needle for nearly 5 years so quite a surprise. They were very good with lots of flushing (with saline, not me!) and knew what they were on about so hope there’s no repercussions, I had 5 nodes removed at primary dx so still got a bunch of them up there that I hope are doing their work. Hope you get over all the ‘water’ problems and they rebalance themselves soon. Plastic - nice! Also I assume you’ll know soon if the shingles got you, I’m sure they didn’t but fingers crossed anyway. Good luck with the pay request.
Kirsty - I had stomach injections for 5 days to help with neuts. They really were a doddle and my lovely layer of fat must have totally absorbed any pain and kept the needle away from any nerves. The needle is as fine as you could want and I really didn’t feel a thing. The only ‘problem’ was mixing it all up in the 1st place and making sure you got the right needle on the syringe at the right time - the mixing one is quite a bit bigger than the administering one! Hope you do OK with them and they do the job and keep you infection free with no delays as it’s a drag. Yep - I guess you will be rattling, it’s amazing how many pills we have to pop along the way! It’s nice to get off them when you’re feeling better but they’re a bit of a double edged sword as the create their own side effects!
Angie - hope the old mouth clears up soon, will check out your complementary medicines post. At least you know that’s it for now and they won’t be happening again in 3 weeks like they have been.
Bev - keep up the exercises - I’m sure they’ll make a difference. I think when we have to deal with lots of other ‘stuff’ like chemo we forget about the operation and post op exercises so things can change if we don’t do them. Hope you are keeping well apart from this though.
Joanne - oops, best break a match or something small in case things really do come in 3’s! Take care and hope you are well.
Hi to Chris and Lee - hope all goes well with either yourself or OH - chemo is the pits but as you will have read on here (surprised you had the time!) it is do-able.
To everyone else, Lorraine, Julia, Lisa (sorry if my brain has missed anyone) Have a good weekend enjoy the sun once the fog clears (that’s outside fog not brain fog - cause that ain’t gonna happen anytime soon is it?), take care
Hi,
well done Nicky right on time the sun has popped out as you said. The outer fog that is, the inner fog will be around me for the weekend but apart from that ok so won’t moan too much. So glad you got the watery version and that you approved of the taste,never trust a hospital treatment described as a smoothie, too good to possibly be true! Regarding the veins, I think when you think about people like Angie who have both sides on the go, it makes you wonder just how careful we actually need to be, unless we have had full clearance of course. Angie you have used both arms haven’t you? I am just using my right arm normally now apart from needles where possible as I only had one node out so there are at least 19 still in there. Shingles D day was today! When do you hear back about the scan results? Fingers and everything crossed for continued super shrinkage heading towards obliteration!
Siggi I read your post and so sorry this cr.p has fallen on your lovely family and wish you all well. The shock is the tough bit, the surgery is brutal and then it starts to settle a little bit as you get on with the treatment. Just keep looking at the cancer is out now and moving on to moping up the tiny bits that can’t be seen. She has had major surgery and will take some time to pick up from that. Don’t start thinking beyond that too quickly as she will need to recover before chemo and it may make her feel worse thinking it is a long journey. Us ladies are best to work these things out ourselves or the messenger gets you know what! Look on the surgery threads for useful tips too. Good luck
Work and home have sort of crossed over here and my hubby is now having business meetings with my oncologist. Hope they can both devote enough attention to me and my treatment or I shall be moanning if my appointments get eroded. At least I will get to see him a lot more I guess, well maybe both of them.! LOL. I have the house to myself, an unusual thing at the weekend so might go and look for a job I put off to do when I had time. Naaarh that can wait.
Take care
Lily x
Nicky… don’t fret over them using the bad arm. The chemo nurses told me that they only say that because of risk of infection, ie if soething doesn’t heal well then you may have lymphodeoma problems but if everythings properly sterile it really isn’t a problem. Both my arms are bad and they’ve each taken at least 3 chemos and 6 bloods so it really isn’t a problem… but I did only have a sampling like you. I do wonder how many nodes are left actually.
I take it you don’t have results yet?
Lily. Hope the splats and bounces are evening out for you now. I just had a huge bowl of porridge with maple syrup for brekkie, seems to really help when feeling low and doesn’t aggravate ulcers.
Anyway back later. Hope you all enjoy the sun today.
Lee, sorry you are going through this but I think its great that you are coming on here for support means you are a very nice person.
Lily talk to your employers, after sticking in at work as much as can as worried about loosing sick pay my emplyers (not after working most of my sick time) have said even if were off over 6 mn=onths they have a cancer at work policy an would consider paying me full time after my 6 months.
Love to all, god x factor on saturday night is my savour. Still sulking after having to have photo took for driving licence, so obvious I dont have lashes and had to take glasses off and put ratty behind ears, sulk sulk!!!
Rads are okay, trail and dont appreciate whappin what Ive got left out in front of young bloke but hopefully he’s seen worse! its wierd when the run owta the room and the door bleeps to say its safe to start but dont feel a thing. My planning was a week after last chemo but glad its going ahead - the wierdest thing is I just realised today its the first time since March Im not bound to tablets which is great - down side is been reading about ovaries removal and getting scared as seems menoposal symptons start straight away and really bad the younger you are, but still want it done asap so I can get on tablets as worrying!!!
Have read your rads thread as well - hope all goes well for you during them and I bet you’re glad you’re off all tablets. I had to travel about 40 mins each way for my rads when 1st dx and I didn’t ever feel it was the driving that got to me. Although it was mainly motorway it passed through this beautiful wooded part that was full of bluebells at the time of the year when I finished and it really cheered me up. Bet there were loads of protesters when that section of m’way was planned! Also I used to meet the same set of rads patients each time so we got to know each other. There were a couple of older men in for prostate rads and they were lovely to talk to so overall the 6 weeks that I had wizzed by. It did put a stack of mileage on my new car though! I did get tired towards the end and just realised I couldn’t do ‘extra’ things during the day over and above what I’d normally do. I think it all passed very quickly once finished though. If you think of the rads zapping healthy cells as well as BC ones and your body has to work overtime to replace them it’s no wonder you get tired. I got away with wearing either crop top type underwear at home or soft, non wired bras from M & S if I was out and about. I did get sore towards the end but nothing too bad - I hope you’ll be the same and no worse. Oh and it didn’t stop me having a drink - no way!
As to the ovaries - well! I had Zoladex after 1st dx which again puts you straight into menopause and it is tough there’s no doubt about it. When you have a natural menopause your body gradually winds down oestrogen production but an opp or injection starts it straight away. The main thing will be hot flushes but you do get to cope with them and have to wear clothes that help (and don’t show the sweat if I’m honest). It did get better over time and there’s no reason why it shouldn’t as after the natural menopause women don’t have the symptoms forever. Do ask me if you want any other info. I’m not looking forward to my 2nd menopause which is due to start next week if I’m given Zoladex or a bit after that if I also have an oomphorectomy, here hoping the chemo did it’s work and shut down my ovaries but I seriously doubt it as I know I haven’t got any menopausal symptoms.
Take care, enjoy the weekends away from rads and hope everything goes well next week with them.
thanks for all the good wishes re the arm I just find it all so confusing that each of us are having chemotherapy which means there was node involvement and yet we have all had different levels of nodes removed. I know we have differing numbers but it seems really odd that I have had 25 nodes removed with one node involvement and yet some of you have only had a few? I guess that is maybe why I am experiencing the problems with my arm (which I am praying is only post operative probs)
Anyway on another matter I has chatting to a couple of girls the other day who have both had breast cancer and they told me to look at the Haven Trust website they were recommended to by the Marsden Hospital. It looks fantastic but not everyone would be able to get there but they have some really useful information on the website so you may all like to check it out. Sorry I should have done a cut and paste here but not sure if I minimise this page I may lose my entry but it is easy enough to just google.
I didn’t have nodes involved bev. they just like to torture those of us under 40 who had high grade tumours for fun
Been reading up on rads. Did you rads doesn’t destroy healthy cells like chemo does… in fact the DNA in healthy cells recovers within 8 hours of treatment but the cancerous cells DNA is so f***ed that they can’t so they die like they ought to. The tiredness seems to be from the energy it takes for the healthy cells to recover.
Been reading the coping with radiotherapy book that’s the sister to coping with chemo that served me so well.
Turns out Rads only works if there’s plenty of oxygen in the blood stream to so if you’re aneamic (and my red count is pretty low) they give you a blood transfusion before starting… guess who’s loading up on the spa tone, and beef burgers are in big times… yum
These haven places and Maggies all sound brilliant but are just completely way too far away for any of us who are rural. But I won’t complain because I’ve got lovely landscapes instead but those of us in north england are just not catered for as far as I know. The haven DVD on lymphoedema exercises is really great and explains a lot about it too.
Nicky… maybe you’ll get *lucky* and not have to do menopause symptoms this time… there can’t be that muche recorded data on women who do it twice can there, maybe your body will have adapted the first time round… we can hope.
I’m dreading going through menopause at 34. My Mum seriously pi**ed me of when we were talking about it the other day and I won’t be talking to her about it again as she doesn’t want me to do the hormone therapy (netiher do I) but if the onc does convince me I will do it and her comments about how my lovely personality will be heavily affected will be met with my not so lovely personality… it’s not like I’d be doing it for fun… Jeeesh, sometimes you could scream right.
On a happier note the sore mouth is starting to recover which is just as well as I am SO sick of mash and soft foods now
Lots of love to you all and hope you’ve got some of this fine fine sunshine.
Hi
Angie don’t talk to me about food, I might cry!
I had a really over sensitive tummy on Friday so onlychanced plain sandwiches all Saturday with no extra nice things at all. Thought that would do the trick and started today with weak coffee and toast but just a weak cup of tea sent me running with sharp pains so now can’t even chance a hot drink. For dinner all I had was a little pile of potato. Everyone was round and I had cooked a really big roast and all the trimmings and choice of puddings, so sat there trying to not be miserable. Feeling very hungry and just not sure what I can chance. I have had this on CMF before after the second week. I am starting to think I will be permanently left with digestive troubles as it just doesn’t get a break, worse things to have I guess! The kind of day you just go to bed on and hope it looks better tomorrow. Yaay new carpet arriving, which will be so nice after the dire thing the previous owners left.
Angie, I have Mother trouble too at times. The lack of insight of the big picture brings out the worstin me too, although the only way she would understand better was if she had it, which of course I would never wish on anyone. The big one was, when I was upset about losing my hair if I needed chemo. Well think what it was like to be me, born when curly hair was fashionable and I did it all and then it rained and dropped out!!! I have to say I do swear a lot more these days! Another classic was , referring to going back for the 4th epi and feeling pants already, well think of it like the dentist!! Some days I feel the DNA link is not there at all. Still like yours she also does really brilliant things for me, beyond the call of duty and would give me her last penny, kidney or anything else I needed so I guesswe grin and bear it as the pluses outweigh the totally idiotic occasional comments and most of all we love them!
Speaking of menopause, I am 48 so I thought chemo would have pushed me over but no side effects and no periods for 10 months now. They have no idea what I am doing and no-one seems to care, have not even mentioned it. Angie you have to make your own decision but I think I would be guided by the very best decision for your long term health, even if people have to be careful not to annoy you too much. LOL GO tiger! Extinct species handle with care.
Bevy I have no node involvement either, they only took one out, the sentinel node but it was clear. I am not totally sure why I am on the torture trail as not young, although onc says I am,grade 2cancer. He just gives to everyone under 50. I think I am having more chemo than many other people, just have to believe his calculations and guidance but I am on a research trial which makesa difference too. You sound a lot brighter keep chuggoing along. My friend is a physio and says doing the exercises gently more times throughout the day brings better results than a few times done more roughly. Nicky and Lisa I am taking in all the info on rads, ready for if I ever get to the final day on this bit! You will be all collecting your free bus passes by then. I read that rads are actually better than chemo at killing any cancer cells in the breast area as they can get round bits and edges of bones. How do they decide whether you get injections or have surgery or can you have a say in the matter? Totally cr.p that you all have that to deal with too. I am going to find out if I need surgery for the port to come out before rads, that is minor in comparison but still enough to make me worry. Nicky do you have more teast or your results this week/ Everything crossed for you. Lisa glad you have nicer bosses. I have not worked at all so probably been written off. I enjoyed the double day of X factor and it will light up Saturday for me too after a long run of not very entertaining progs. I like Cheryl Cole in it , do you, seems genuinely interested in the people? I was trying to follow your treatment you mentioned, are you ER+? Do you mean you can start tamoxifen ot the aromatase inhibitors, after you are definitely post menopausal/ I must find out more as totally blank on this. Can someone tell me what I should be expecting please?
Hugs to everyone else and keep us posted how it is going. I am going into 2 good weeks now and going to make the most of it before I hit the next 2 bombs.
Lily x
Morning ladies
its 5 am and i have been sleeping bit better. Just thought i,d log on and see how you all doing.
Bev, i,m like you about the nodes, a bit confused but don’t know if i want to know to much. My princess(o/h) has had loads removed both sides after a bilateral masectomy and its absolutely floored her. Cant move arms so loads of implications,physically and mentaly. I,m just praying, as the saying goes, time is a great healer. Good job she is strong but she is only human.
Whats this Haven trust about?
Take care girls and talk soon
Lee
gotta be quick today… tomorrow is the start of the so called good week, not quite feeling as recovered as usual yet but got get some work done before the every day trip to carlisle for rads starts which I’m sure Lisa is sick to death of by now already.
Lee: I’ve left a message on your other thread about Haven for you. it’s a great site… and time really does heal I promise… but it does take about 2 months longer than anyone wants so expect her to get pi**ed off with it if she’s anything like me and impatient but it does get easier honest.
Lily: Want some mash (ducks ;). seriously had the same thing when family came up, made a lovely roast chicken but couldn’t eat much of it at all. Here’s a couple of my soft foods in case you’re craving flavour. Add cheese and sauted onions to the mash. Or mushrooms fried in butter on top of jacket potatoes.
Right what was I saying… yes Lily have you tried the innocent smoothies, they’re not too acidic so they don’t stinkg, they taste good and are loaded count towards the 5 day and have plenty of fibre, got me through some of the tougher weeks this year… anything beats complan (yeuuurgh).
Anyway hope you’ve all got sunshine and hope it’s making you feel better, I jsut told a load of mates that I’ve finished chemo and the good week starts tomorrow and suddenly found myself with tears rolling down my face… where did that come from.
lots of love to you all, especially those fighting symptoms or waiting for results (again).
Hi Angie,
thanks for trying to help, I appreciate it but you are on completely the wrong tack for me this time - I can’t have a sip of fruit juice, tiniest piece of fruit or veg or even sauce without having to race to the loo A melt down rather than a sieze up of the bowels. No sore mouth just dryish but can’t tolerate any fruit or fibre, needing eggs and lots of them! I can’t even eat onion in crisps, tomato sauce, soup, nada.
If you think of anything good i could try let me know
You make sure you catch those good days when they appear before the rads start. I wish I was at that point too. I think I will be doing rads through the Christmas shoppers and it is an intown site with no parking. Great plan.
take care
Lily x
That link I just sent you mentions probiotics… don’t touch them right now. the cmf will be killing of your friendly bacteria but it’s possible that probiotics could over run you too right now… thrush is a symptom of your probiotics levels being down but it’s just not an option until a few weeks after chemo sadly. I looked into it when I was overrun with candida
Hang on Lily, you’ve got slight digestive problems and your shivering at night… you might need some antibiotics. Have you told the nurses about both these things… .I would as they’re both symptoms of possible infection. It’s obviously not a bad one if it is but best nip it now if it is.
Nurse Angie,
I am touched so much tlc coming my way, thank you. The onc unit doc did say a very low temo can be a sign of an serious infection that is just under covers, but decided to ignore that as it sounded serious! Anyway blood counts were really high, the whole lot were higher than my friend before she even started chemo. They were checkinh them in case of shingles. Think it is another side effect so going to hit the eggs, eggs, egg trail. The mayo again is a no no. A maple syrup pecan danish last week had me folded up, so no to maple. So annoying I love maple. I am on a strictly carbs , meat and eggs diet it seems. I think it got me in the second wek last time. Worst of all I am getting/now got chemo steroid flat face from the double doses so not very impressed. I really look particularly ill now compared to even a month ago. pooo.
Thanks Angie. Will look at that later as enjoying rich tea biscuits, my hero of the day. Hi everyone else.
lily x
Well, we got our weekend in Brighton after all. Lovely weather and sat on the beach yesterday and today, just got back and logged on to see how we all are.
Don’t mention the trots Lily! I have been really suffering since my last chemo which was followed by 7 days of anti biotics. Just when I thought I’d got over it all I started again this morning. I will mention it to my onc when I see her on Weds (for results and my bisphosphonate IV) but I have remembered I can now have probiotics so giving them a go, sorry you can’t have them Lily. I also get a bit shivery at night but don’t think there’s any infections/high temperatures, maybe it’s just to do with the lovely drugs cocktails. Did anyone read the story in the papers today about chemo drugs possibly polluting the water supplies. I had wondered about that as I peed red for England
With your restricted diet Lily maybe you’ll be a slim Jim when you’ve finished your trial - I guess it’s not called a trial for nothing! So sorry you’re feeling so rough and that you think you have the steroids look. All of this can really bring you down can’t it? But I hope you can persevere and see it through however bad it seems.
I’d heard from several sources about The Haven Trust - sounds wonderful but the one I know of is accessible to those in London but I’m sure I could manage a day out there if it is as good as everyone has said. Lovely treatments from therapists who know their stuff about BC.
Lily - I’ve had a blood test done to see if I’m post menopausal so what excitement I’ll have this week when I find out! My main onc (who treated me for my 1st dx) seems to want to got the injection route but they are nasty big b*ggers (the needles they use) and I really could do without having them done every 4 weeks - yet another Dr related trip. Her side kick did actually listen to me when I said I wanted my ovaries out so there’s hope yet. I’m convinced my 2ndaries developed/grew when I last finished Zoladex and my body was flooded with oestrogen which my BC loves of course. Can’t prove this but if I can remove as much oestrogen as possible I will and I think getting rid of my ovaries is the only guarantee that I’m post menopausal and my BC will be deprived of it’s ‘food’. Coupled with an AI (rather than Tamoxifen to which I became resilient to) it should be my best shot.
Angie - despite what you’ve heard about hormone therapies I honestly don’t think I had any major changes, especially not personality wise, when I was on Tamoxifen. The one thing it did do was send my blood pressure sky high so I was on BP tablets for the last 4 years or so. It’s now come down to normal but could go up again when I start the AI so I will be monitoring myself carefully. The plus side of not having periods (when I was on Zoladex) was of course there’s no PMT - something my OH and daughters were very glad about Having had a thorough talk by a leading onc last week at the 2ndaries event it was interesting to see and hear how the hormone therapies work, as well as Herceptin and Tykerb - nice diagrams too!
Anyway, take care all, will catch up soon, meant to be at work this week but the frequent loo visits my put paid to that!
