Thanks Pauline - I too wish everyone a happy Christmas, with hopefully a day or two to put all the anxieties and fears away - if only because of the "opportunities" to keep busy..
I'm starting chemo early January, so not in any rush to see the end of Christmas this year!
Here's to new beginnings in 2016
My congratulations too JoJo - hope you are going to celebrate this great start to 2016! What I'm beginning to realise is that there are no short cuts to this wretched journey, every stage has to be got through systematically. I find it really uplifiting to read postings from those ahead of me.
So, on today's optimistic note, I've been researching what to do with my hair, having been told that chemo is recommended. It's v long - haven't had it cut for yrs, I just touch up a few grey roots & put it up every day. Think it will be more upsetting trying to preserve some of it with uncomfortable cold caps which may or may not work. So, think I will get it chopped off & donated toThe Little Princess Trust, at least a bit of good might come of all this!
Seeing oncologist next week re chemo so feel a bit in the dark until then..back to the waiting game.. but, getting over ANC surgery well, one seroma drainage (didn't hurt at all) which gave instant relief, & seems to be settling now, so time to get exercising..
Pauline - what a worying time, so glad grandson improving. Little ones get poorly really quickly & really worry us don't they? Re the drain - mine was absolutely fine, fastened securely with stitch & heavy duty waterproof tape, so OK to shower, & didn't feel anything when they removed it. You will be fine. 9 months of waiting is (well, I think anyway) is by far the hardest bit, & if you can do that, you can do anything! Take care
Hi jojo, Jan, and all, Jojo,fantastic news, I am so jealous, so happy it's all done! Now it's my turn, I am so dreading it. Hope you doing better Jan, it's really getting to me all this waiting, I am so anxious, how on earth will I cope. My grandson, he's just two, was admitted to hospital with pneumonia, what a shock for us all, he was really poorly. I started getting really bad headaches, too much to cope with I think, but he's on the mend now, so all sleeping again, we were up for 48hrs + horrendous. We are all trying to get back in some sort of a routine, what a year it's been. Hysterectomy, pneumonia, breast cancer, anything else? I had an appointment with an surgical nurse on Monday she was lovely,explained all the pros and cons, think some of them scared me, but hopefully most will not happen, I didn't much like the drain which she gave me to hold, but she said it's more uncomfortable than anything else. I'm just wondering how I will make it to the OR without fainting, I think the waiting your turn gets to you, seeing people coming and going and waiting! I know through talking to you all, you have told me it's all doable, but perhaps your all stronger than I am.......I waited 4 days for my hysterectomy, due to a cancellation, so no time to think - I have waited 9 months this time, and believe me everything possible that could go wrong I have imagined! My daughters are fab, but they say stop overthinking everything you are driving yourself crazy. Too late I think. I just hope I can come brought this as well as you have all done, thanks for your support, and Jojo, congratulations, I am so really chuffed for you......speak soon... Lots of Love Pauline xxx
Hi Pauline and all
Well, I've had an uneventful week sitting around waiting for wound from ANC to heal. OK until day 10, then swelling set in. Reading up, it sounds like a seroma. It hurts! Off to outpatients today anyway, so hoping they will drain it. Asked the breast care nurse if there was anything I could do that would help - or make it worse. Apparently not, once it happens, you just have to ride it out, it settles eventually. But, good news, had a call telling me ANC pathology clear, so won't be going to today's appointment wired to the national grid like I am normally. Think the discussion will be about chemo / not chemo. Not sure how I feel about that, havent' had much choice in treatment so far, but really don't want to be given choices - just tell me what to do to reduce risk of it all returning.
Hope stomach bug improving Pauline, it's unfair on top of all this waiting & anxiety.
First Xmas card I opened yesterday - written whilst on their Carribean pre-Xmas holiday - contained the annual missive about a friend's many family triumphs, ... I'm refraining from sending a vitriolic one in return! My cards are going to be short & succinct this year..
How are you? I finished my radio on Monday; I'm very tired now , but so glad it's done. I also saw my colonoscopy results, some dysplasia, but no malignancy. I still have to see GP to discuss them, but am very relieved! I'll have to have it done every three years, but that's a small price to pay.
So now I have no excuse re Christmas - I'll just have to knuckle down lol!
lots of love
Good thinking Jan.. always find a positive lol! 😄 Actually for 2 weeks hubby off work so he can keep me company so that will be nice and he says we can go out afterwards or just home a chill.
Oh Nicki, that's harsh. But - another step forward... & a New Year with hopefully most of your treatment completed might seem good when you get there.
An excuse for NY champagne unstead of awful Xmas sherry perhaps? 🙂 Jan
Hi girls. I had my lumpectomy the 5th Nov..had an infection which was really painful and seroma which leaked and had to be drained a couple of times. Now all healed nicely and off to oncologist tomorrow about my Rads.
I understand fully your worry about he results on your axillary nodes. I was terrible, back to the what if again, is it going to be chemo, removal etc. Luckily 3 taken, 3 clear so just rads and tamoxifen. The secertary at my sons school has had her lymp nodes removed and did get Lymphodemia but when I talk to her about it she is so positive. She says its fine, she lives with it and the alternative is so much worse, she can work and do most things, but it is such a worry!.
I am back to work which I think helps me cope with it all. Normality is a good thing and stops me thinking about it all. Hopefully I can work a bit through my treatment too.
I also know what you mean about Christmas. Not feeling it at all this year. Then again Michael Buble was on the radio tonight and I did have a very loud sing along and felt quite cheerful, maybe it might get me nearer the time!!!
Good luck to us all xxx
and welcome Jan, Nadine And Jilly. It's interesting that WLE is now frequently done as day surgery, I had mine done in 2007 and it wasn't an option. Mmuch nicer to go home I think, even with drains! I had my second round of brachytherapy today so I'm half way there. Rather tired though, so early night for me.
Pauline, have you discussed your worries with your GP? Maybe they could help with your anxiety, not necessarily pills if you don't want them, but possibly some coping strategies. Might be worth a try.
love and big virtual hug,
Hi again Pauline
I suppose I'm working the other way round, just can't wait to get through all this, so want to bring things a bit nearer. My next milestone is Dec 10th, when I'll find out if the lymph nodes were positive, which might mean chemo, if not, just radiotherapy & pills... I know I will be a wreck on the run up to that.
I didn't get offered a pre-med, just "allowed" to walk to theatre in my dressing gown & slippers! By the time I got to that point, I had stopped feeling really anxious, I find there's something vaguely reassuring about putting yourself & decisions about yourself in someone else's capable hands - akin to flying perhaps?
Drain out today, didn't hurt at all, so went home via Tescos. Big mistake! Slade belting out "So here it is, merry xmas everybody's having fun......" (you know the whole chorus I'm sure!). Left husband and trolley at the checkout, & strutted out uttering profanities about what I would do if I got hold of Noddy Holder! But - DIDN'T CRY...!
I'm finding it's better to get out every day, even if just for a walk alone. I'm trying to avoid long conversations with well meaning relatives & friends. Can't face their curiosity and daft questions - or full on avoidance that anything is wrong at all! They can't win either way I suppose. My 4 kids (all grown up) are desperatly trying to find something useful to do for me, although there isn't of course much they can do.
How about getting your son to take you to the pictures? I saw "The Lady in the Van" last week - it's funny & light, & took me out of myself for couple of hrs. Just a suggestion - I know it won't work for everyone.
I too am scared of lymphoedema, but my consultant reassured me that if it happens, it's treatable / managable. I think the odds of not getting it are improving too, so fingers crossed...Jan x
Hidip,how I can identify wih you...was so scared waiting for my first op,in 2000....a WLE....since then,have had16 further operations...all breast related,plus 2 hip replacements.
you are not given pre meds now.....It is an emotional roller coaster,but,you will get through it,it will pass.
You go to bed,wake up,thinking about it.Yes,best not to google.It is the unknown.You always get some bright spark giving you their gloomy stories as well.
But,you have to go through all this,no easy way out.Next time your son asks you out,make the effort,get dressed up....this gloomy weather doesn't help😂
Hi jojo, thank goodness, wondered what had happened! Glad your ok, do you have to go to your appointments on your own? My oncology appointment was last Monday, it was a long day, 3 hours we waited, I was a nervous wreck, still am! I don't know how you get through all this......she said the letrozole was slowing down now, time for the op! She was holding my hand all the time, made me worse I think. I don't think it's the lumpectomy that's bothering me (not much) it's the ALND I am frigworriehtened of. My daughter said she would have a talk to my oncologist about that, but she said that's what she recommends. I don't know if I can do this, (I only say it 100 times a day) but I know I have too.....help......my daughter says I can, and I will be ok, but I'm afraid I'm not behave at all, although I am going to mention the pac when I see the surgical nurse next week - I did ask for a pre med - but she said because it's day (or maybe just one night) I cannot have one. How on earth will I get to theatre, I'm already anxious. You must be very strong to do all you have, I feel ashamed of myself. My daughter nurses in a hospice, she says she's going to take me there one night, but I don't think it will make a difference I am too soft by far. It would make me worse. I am however glad your ok, and that you let me know, your nearly there......wish I was.......have a good rest, you deserve it! Pauline x
Sorry I haven't posted before now, I found having the colonoscopy followed immediately by the radiotherapy absolutely exhausting. I really needed a day in between. Colonoscopy was not too bad, slightly painful but didn't take too long. They removed 4 polyps and sent them for histology. So waiting for those results, can't quite remember what they told me about getting the results as I was still groggy from the sedation when the consultant was telling me, but next week I will get my Macmillan nurse onto it. My brachytherapy the next day was back at the Hammersmith, and of course my notes had not arrived from Charing Cross for my 10.30 appointment. what a surprise! Eventually they were faxed at 12.30 and the treatment was started. Not painful, thank goodness. I was very nervous as I hadn't had an internal since the surgery but it went Ok. By the time I got home I just went straight to bed. I live on my own and was too tired to even make a meal. Slept most of Friday too, and really only started to surface yesterday. Ah well, one down, three to go!
Do you feel any less anxious now you have your date for surgery? How do you feel about waiting till after Christmas?
All the best to you.
Hi jojo, are you okay? Please let me know how you are, getting worried. I hope everything went OK for you, you have come so far. Thanks for your suggestions so far for me, re pac etc. (Although I think I need hypnotising myself) I have been thinking of you over the last few days......Pauline x
Hi jojo, good luck and hugs for your procedure today, I will be here and thinking of you. Please let me know how it goes. I had my appointment on Monday, I arrived at 3 40pm and was seen at 5 30pm, talk about nervous wreck! I had an ultra sound and it has shrunk by 2mm, so it's really slowed down now, last time it was 33% - she said, well it's done its job, and even though the shrinkage is small, it's not growing or going anywhere else. She suggested either lumpectomy or mastectomy with auxillary nodes removed, the decision was mine. I choose a lumpectomy + radiation. I was shaking, and close to tears, she held my hand, and said, people usually get tears after not before. My date is January 13th (hope it's lucky for me!) I think I am more worried by the nodes being removed ....... She did say 1 in 5 will get Lymphodemia if that, quite reassuring. I am still worried about the pain, but she has made me an appointment with a surgical nurse in the next week or two for any question, it's an hour appointment, so will let you know. Although, I am sure you know as much already. I hope you are okay and let me know how you are........Pauline x
I remember lots of picnics in Werneth Park when I was little, we lived just off Manchester Rd, near where Chamber Rd joins it, but other side of the main road.
I have a suggestion about your surgery. You could discuss your worries re pain with your surgeon before the op and ask if you can have PCA, patient controlled analgesia. In case you have not had this before or seen it, it's a thing attached to your drip that allows you to press it whenever you need pain relief. You can't OD as they set a limit, but it means you don't have to ring for the nurse and wait whilst they fetch it. I had it when I had my mastectomy in 2012.
I think you will cope better than you imagine, it's all this waiting that magnifies your natural anxiety!
Lots of warm hugs,
Hi jojo, not sure if she will give me a date, like you said, the waiting is the worst......(I hope) I keep saying to my daughter, I can't do this (surgery) she says, yes you can! I am afraid I won't cope with ALND surgery, so, hopefully she can reassure me- I certainly hope so. I live in Hollinwood, just past Werneth Park. I can't imagine how you must be feeling, you have, at least, got your surgeries over with. I don't understand were this anxiousness has come from- I definitely wasn't this bad before my last surgery, no way as bad. Evwoneryone here is talking about Christmas, and mine might be spent in hospital - I Pam more worried about node removal and the drains, but if I can get my hands on oramorph - i will, my daughter keeps telling me I'm not soft, but beginning to wonder! I think it's more emotional this time for me. Anyway, back to you, I hope you are ok, I think you will sail through all this, your a lot stronger than I am, I will be thinking of you too......keep in touch Pauline x
I lived in Chadderton, went to Chadderton Grammar on Broadway. How about you?
I know what you mean about Christmas, I can't get interested, I've done nothing yet. I have got my date for colonoscopy now, it's on Wednesday, then radiotherapy starts the following day. Eek!
Do you think you will get a surgery date on Monday? I hope so. Waiting like this is very difficult. But it sounds as if you have a supportive daughter and that's good.
Do please let me know what happens on Monday, I'll think about you as I start my bowel prep (really looking forward to that!!)
How are you today?
I am originally from Manchester, well Oldham, but I have lived in London over 40 years. Almost a native!
I am supposed to start radiotherapy on Thursday next week, but have to have a colonoscopy first and time is running out! I have a reserve date of Dec 7th for the colonoscopy, but that means radio would have to be delayed and I would finish on Christmas Eve. So everything is up in the air! I'm finding that very difficult, can't plan anything, can't get interested in Christmas, feeling a bit sorry for myself.
Hi, thanks jojo, I suppose i have had 6 months to overthink all of this. My daughters are great......but some days I feel like running away. Thanks for putting my mind at ease, i thought you were just given paracetamol after for the pain. My daughter has said she will ask my oncologist to sign me up for oramorph for after (before and during,) I was told I would be having ALND but will ask why? I know after my one stop breast clinic (mammogram -ultra sound with needle aspiration - and breast biopsy) that it was grade 1 with two nodes involved, so not sure if they will take them all. I am glad your hysterectomy went well, we have both been there - opposite times. I have two sons at home, they are very good, but not great talkers. My daughters are married, and both work, in hospitals! Not got that from me......Let me know how you are with radiation etc, I wish we lived nearer, but we can chat here, thanks jojo, feeling a bit more at ease now........Love Pauline x
Its no use me telling you not to worry, that just insulting. But I will say l really don't think it will be as bad as you think. You will have morphine on the first day, and if you are in pain tell them and they will give you more. Don't suffer in silence. I was really worried about the drains, which sounded dreadful, but really more of a nuisance than any thing else.
love and warm virtual hugs
Hi, so glad your okay, please let me know how your going on....My appointment with my oncologist is next week and I am so very nervous. I am so anxious and scared of lumpectomy (hopefully after 6 months on letrozole) and node op. I had a total meltdown in M&S on Saturday, just watching people doing there Christmas shopping, my son hurried me back to the car, did not know how to console me at all. I came home and went to bed for an hour, felt a bit better. I am anxious about the lumpectomy and node op.....I am sure that I wasn't this bad before my hysterectomy. I did have a spinal so no pain at all. I keep thinking I will awaken to horrendous pain, more in my armpit than breast.....but I have read that people only need paracetomol and ibuprophen......I was thinking of asking for morphine!! I don't know why I am so anxious, my oncologist has said its a much smaller op and I will be fine,,(not working) think my mind is taking over....at least yours is now over, I live in Greater Manchester, so quite far away. At least we can keep in touch via this site....please let me know how you are......Love Pauline x
well I had the hysterectomy on October 8th, I had to be referred to the Hammersmith as it was a bigger op than my local hospital could. I unfortunately went into atrial fibrillation after the op so they kept me in a few days.
i feel fine now, much better than I expected to be! I'm seeing the oncologist next Monday as I will have to have radiotherapy.
How are you doing? Have you got a date yet? The waiting is harder than the treatment in my opinion!
I'm in west London, where are you?
Big hugs coming your way,
Hi Jojo, thanks for your reply. My hysterectomy was for a torsion that had twisted, no idea what it was at the time, the consultant said it was a cyst, but until I had my hysterectomy, he couldn't say if it was cancer or not, turned out it wasn't. The operation was fine, had a spinal, so no pain at all, just wanted to sleep all the time! When I got home, after 12 days, (because of pneumonia not op) I was just tired.....I managed ok, although I have two sons with me - one took a week of work, so he could help me out, but I was fine, and you will be too. I suppose if you live alone you might make some soups etc, but to be honest, apart from tiredness i coped just fine. I am much more worried about the lumpectomy it's just above the crease of my left breast, and two nodes are involved, so they may take some or all, don't know yet. I am worried about the pain, and the drains, but from what I have read on here it's not too big a deal. Just the waiting, won't know til end of November how much the letrozole has continued to shrink it. You seemed to cope ok, and lots of others have too. I think my mind is in overdrive , my son said, stop thinking about it so much, if only! Thanks for your reply, it helps knowing that others have coped. I think they might have to sedate me to get me there.........let me know how it all goes for you........you will be fine........xx
The lumpectomy surgery is not too difficult, are you having the nodes removed at the same time? I had more trouble with the incision site for the nodes than the actual breast. The only painkillers I had were paracetamol, and only for about two days, it was no where near as painful as I had expected. Try and walk about as soon as possible, and sit upright as much as you can, as this helps prevent pneumonia. I had my lumpectomy in 2007, then a mastectomy in 2012 due to a recurrence. Now I've just been diagnosed with endometrial cancer and my hysterectomy is next week. If you don't mind me asking, was your hysterectomy for cancer? Any tips on support needed afterwards, I live alone and I'm a bit worried about that.
I wish you all the best for your surgery.
Hi, was diagnosed with lobular breast cancer 3.3 cm in May 2015, but due to having total hysterectomy 3 weeks prior was put on letrozole for 3 months to await healing from my surgery. I returned to breast clinic on 18th August, and on having breast examination by consultant, was asked to go for a ultra sound scan - already had biopsy etc initially, I was told that it had reduced by a third, due to letrozole. The surgeon has suggested I remain on letrozole for a further 3 months, to reduce it further. I am 66years old and absolutely petrified! I asked the surgeon if a lumpectomy was possible and she is reviewing me in November, there are 2 nodes involved and I am diagnosed as Grade 1. - my question is, what is the lumpectomy surgery like? I contracted pneumonia after the hysterectomy and was very ill. Now I am petrified (to put it mildly) of another impending surgery. I have two wonderful supportive daughters, but still scared. Thanks to you all x
Hi 1981mum, I had my lumpectomy on Monday and apart being sore and a bit bruised I'm ok.
If you need any further info please ask, good luck with everything, Suzie x