December Angels 2013

[SJB]

I haven't been to the hospital for 15 days now - since my pre-op assessment. Probably the longest time since my treatment started!

[Petal88]

I'll think of you tomorrow SJB as I am having my op too. Today I'm having a wire inserted. It will be interesting to compare notes afterwards re drains etc. Good luck. Everyone says the hardest part is over now we have had the chemo.

Jules and Wyn, I hope you are making good progress.

Best wishes to all Angels.

[SJB]

Hi Jules. Hope you c an update us at some point.

How long were you in hospital for? How long was your drain in for?

My op is tomorrow now, and I'm feeling increasingly anxious. Trying very hard to stay calm, but too much stuff is going round and round in my head. I'm taking a book with me but I have no idea if I'll be able to read while I wait for the op, or if lots of people will be talking to me and prepping me etc. 

[RacingJules]

Thank you everyone for your good wishes. 

I feel much better today - my surgery was ok and not as bad as I thought. I see my consultant on Friday evening so not too long to wait. 

Best wishes to everyone who is having their op this week - it is another hurdle that is great to cross. 

Best wishes and (gentle) hugs,

Jules xx

[wyn]

great news Jules, another hurdle over, take care of yourself and rest when you can,

Petal and SJB good luck with your upcoming ops this week and also anyone else I may have missed.

I am currently waiting on planning appt for rads, oncologist told me I will be having 15 plus 4 boosters.

Take care angels we will soon be able to put this rollercoaster of a journey behind us.

Sending hugs

Wyn x

[Petal88]

Excellent news Jules. Look after yourself and rest as much as you can Definitely on the home straight now! Petal x

[SJB]

Good to hear from you Jules. I was just about to send you a private message asking how you were feeling.

So glad it's all over for you. I was quite disappointed when my op was delayed, but at least it'll all be over by this time next week for me.

Take care of yourself. Don't feel tempted to do too much. x

[RacingJules]

Hi Ladies

Just to let you know I had my op on Thursday afternoon - mastectomy plus node clearance. Back home yesterday afternoon and so pleased it's over. I feel good - was really well looked after in the hospital and just taking things easy now. 

Love and (gentle) hugs to you all,

Jules xx

[Petal88]

Hi again everyone. I just wanted to say that I registered with a research study yesterday at a lymphoedema clinic that is in my area. My surgeon had given me the details last week. I had to fill in questionnaires and have various measurements taken one of which was the level of fluid in my arm. I will have checkups after the operation, one at one month and then at 3, 6, 9 and 12 months then half yearly and eventually yearly until 5 years, to look out for increasing fluid and the risk of lymphoedema. I figured it may help their research but it will also be good to keep a close check on me.

When I was there I was able to buy a mediband alert bracelet (like a wide rubber band) that is for the node clearance arm and marked to say not to have blood pressure or needles on that arm. I know I won't need it for the operation as it will be obvious which arm, but may be useful in the future. When I was neutropenic and in hospital I had a sign near my bed not to use my right arm but several nurses didn't take any notice and I kept having to stop them. If anyone is interested, I think they can be ordered online and mine cost £3.

[Petal88]

Thank you. It is a hard time for my family as we can't even visit my sister in hospital as they have norovirus there!

[Lilyboo]

What a difficult time for you.  If it was me I would rather know, I find it easier to deal with what is, than what might be.  Im sure you will find the strength to supprt your sister but you will only find that if you put yourself in a positive frame of mind for yourself and your treatment. I wish you so many positive vibes, GOOD LUCK xx

[Petal88]

Thanks so much for the encouragement Lilyboo. I am so pleased to hear your story.

We are indeed lucky that our cancer is more survivable than some and I am very grateful to have the Herceptin.

My sister, with her carcinoid cancer, has been lucky to survive 3 years with it and IF she survives her heart operation (now going to be next Thursday, the day before mine) she has a chance of more cancer treatment and a possible further 2 to 5 years. I really am trying to be positive but I just don't know how to cope with the thought she may not survive on Thursday and then will I be in a fit state for my op on Friday? Do I ask not to be told anything? It is such a dilemma.

[Lilyboo]

Hi Petal, I havnt been on here for ages but was just having a catch up and saw your post about HER2 positive.  I am HER2 also, in fact triple positive, but thanks to the wonder drug Herceptin, it gives us the same chance as every one else, in fact I feel so lucky as 5 or so years ago because of the cost it was a post code lottery as to whether you got it or not. So stay positive. 

Today is the last day of my rads, I had my op before chemo, its a breeze after chemo, I did during week 2 have a very tired, exhausted time but bounced back week 3 and this is week 4.  I have used aloe vero gel from Holland and Barret, and I was also advised to try drinking the aloe vero juice by a friend and I have had no se's at all apart from this last few sessions which where boosters where the skin has gone slightly red, but no soreness at all, so not really worth mentioning.  So good luck and stay positive the end is in sight.  My life is returning to normal, and it feels so good 🙂

[SJB]

I've got a v-shaped cushion too. Fingers crossed that it gives us some comfort.

Best not to worry about what might happen in the future. Concentrate on getting better now and live each day as it comes.

I don't know about all of you, but I'm absolutely sick of all the publicity about cancer research now. The last few days, every time I turn on the TV or computer, I seem to be faced with cancer mortality statistics. I don't want to hear it. I just want to live!

[Petal88]

Well done Setareh! I hope you make good progress and all the best for the results next week. Let us know, won't you?

SJB - I saw the breast care nurse yesterday to find out what will happen in my op and afterwards. I now have a little v-shaped cushion to place in my armpit to be more comfortable and also to stop me rolling on my right side in bed while the drain is in. I normally sleep on that side too! I also have a nice little bag with a long handle that I can drape across me to hold the drain. Really not looking forward to that bit.

I have a whole mixture of emotions. On the one hand they are very pleased with me getting through 6 cycles of TCH and it has made a huge difference to my cancer but on the other hand there is more risk of it returning in future because I am HER2+. I can't bear the thought of having to go through chemo again but I suppose if it happens in the future I'll deal with it then. It is hard to stay positive sometimes and it isn't always all about the cancer but at least we can take comfort and hopefully strength from each other and know we are not alone in this unexpected, unwanted and difficult part of our lives.

[setareh]

Hi ladies, I had my op on Mon, everything is ok. I'm taking painkiller and haven't felt any pain. Next week I get the test result!

Thinking of you all and hope you're all doing well
Much love

[SJB]

To be honest, I've been pretty down the past couple of days, but I try very hard to find things to be positive about. Trying very hard not to get depressed. Got far too many problems apart from my health, which I really don't need.

I've had another filling drop out this week and once again have constant toothache. I will be so relieved when I can finally have some dental treatment! Because of all this, I still can't eat anything hard or chewy.

So chocolate is a distant memory, whether it tastes nice or not. i can't bite it and I can't chew it.

[Petal88]

Two days ago I found I could eat cheese again. It's great isn't it? My tongue feels more normal and food isn't slimy any more. Perhaps I'll like chocolate again soon though maybe that isn't such a good thing!! It is so nice to have some positives.

I had my first Herceptin jab yesterday. It is given over two and a half minutes and stings a bit but it's still better than having it over one and a half hours by drip.

So pleased you sound happier again SJB. Only a week and a bit to our ops.

[SJB]

Something to celebrate - I like tea again!!!

I kept trying it but it always tasted bitter. Then yesterday I made some and really enjoyed it. Whoopee!

[Petal88]

SJB - When I had my pre chemo yesterday I said I had been told to make sure all the blood tests would be done as it should mean I don't have to have another blood test when I go for pre admission. The nurse, however, said that as my pre admission isn't until next Wednesday and that would be 9 days away I would probably have to have another blood test for "group and save and crossmatch" but she wasn't sure.

I was pleased to hear about the hair regrowth as what little I have is growing straight up!

I hope you are feeling better each day like me. Stay strong!

Jules good luck for this week.

[SJB]

It's odd how several of you mention your pre-admission checks are the day before the op, but my hospital did it 8 days before I was due to have my op, so now it has been delayed that will be 16 days before the op! I wonder if they'll do it again to check I'm still ok. Bet they don't!

In answer to your question about hair growth, Petal, yes my hair is growing. It's less than a centimetre long, but I can now pinch it between 2 fingers.

The Facebook girls have all got some hair regrowth too, varying from an itchy scalp with stubble to hair that is long enough to lie down on the head instead of sticking straight up (that's just one girl - we're all quite jealous!)

[RacingJules]

SJB - Oh no - really sorry to hear that. At least you will feel stronger and through the side effects of chemo - fingers crossed for you. 

Petal - I hope the Herceptin injection goes well tomorrow. I'll be interested as to how you get on. I had my 4th dose today intravenously - 14 more to go! I hope things go well for you this week - it must be really tough with your sister and you are dong so well. 

I am due to have my pre admission check either tomorrow or Wednesday and then my op on Thursday afternoon. 

Sending best wishes to everyone, Jules xx

[Petal88]

I know how you feel, SJB, as I was disappointed, too, when mine was delayed but each day now I am feeling a little stronger so I'm sure it will be for the best. We'll be on the same day, too.

I went to pre chemo today and will have my first Herceptin by injection tomorrow. I am to see the breast care nurse on Wednesday, then have my pre admission check on Wednesday next week, wire inserted on the Thursday and operation in the Friday. With so many appointments it should all come round quickly.

I am very stressed at the moment about my sister who has carcinoid cancer which has given her leaky heart valves. She is to have open heart surgery this week before they can zap her cancer any more. It makes me realise I am lucky that mine is more treatable.

I know it's hard to be positive sometimes but we will beat this! By the way,is your hair growing back yet? Mine is fluffy and my head is a bit itchy so I hope that is a sign it will be back soon. I miss my eyebrows and just want to look and feel normal again. What about your nails, did you lose any? Mine are reasonable so I am still using the dark varnish and will do so until my operation just to try and make sure they stay put.

[wyn]

Petal and SJB sorry to hear your ops have been postponed for another week but you will both be stronger from se's of chemo by next week,best wishes.

Ro21 great to hear you have almost finished rads it must be a great feeling coming to the end of this very dark tunnel.

Well done to everyone who has finished chemo and good luck to anyone still to finish.

Onwards and upwards ladies

hugs

Wyn x

[SJB]

Deep sigh. I've had a call from the hospital this morning, delaying my op. My surgeon won't be available this Thursday now, so I have been put off until Friday 9th May.

Having got myself totally organised and psyched up for it this week, i'm feeling a little lost now.

[Ro21]

Love & best wishes to all you guys having op's soon. I had my mastectomy and ANC back in October & then chemo & radio the last of which us next Wednesday. I'm fortunate in that I can not only see the end of the tunnel but I've nearly reached it. I think the chemo was definitely the most difficult stage although the drains were a nuicence (sorry can't spell) keep strong ladies you'll soon be through it x

[Petal88]

Hi Everyone. I had my appointment with the surgeon today and have had my operation date postponed for a week as my chemo finished a week late after having the blood transfusion earlier. This means it won't be until 9th May but it will give me a bit longer to get over these wretched side effects. I am making progress but still have tingly nerves in my feet and feel very weak in my legs and am very tired and often emotional.

I will have the lymph node clearance too and will be in hospital for one night.
The consultant was very pleased with the results after chemo but did say I had been given chemo before surgery because it was grade three cancer and the HER2+ meant it was more likely to spread. I am to start Herceptin as injections rather than drip from now on and that will start next Tuesday.

Good news Wyn. I hope to say the same in another few weeks and then I'll also know if I am to have radiotherapy but it does sound likely. Keep us posted on how it all goes.

Petal x

[RacingJules]

SJB - yes, I have been told I will go home on Friday afternoon, all being well. All the lymph nodes are going to be taken out too, so it sounds as though we are having pretty much the same procedure. 

No decision yet on timing of rads - all the BCN said this morning was that it would be 4-6 weeks post surgery.

It has come quickly but in some ways I am glad as less time to worry about things. The surgeon and BCN said this should be much easier than the chemo I've been through so that's encouraging. 

I hope your energy levels pick up - I am not too bad but can't do as much as I would like. 

Jules xx

[SJB]

Jules, your mastectomy is the same day as mine. Are you having all your lymph nodes out as well, like I am? I've been told I'm going home again on Friday - have you? Seems too fast in my mind.

Also been told my rads will start first week of June.

It all seems to happen very fast. I still feel really worn out from the chemo.

[RacingJules]

Wyn - that's great news and reassuring for those of us approaching surgery.  I hope you get your appointment through for rads soon - I will have to have that too even though I am having a mastectomy. 

I hope you continue to recover well - we will soon be out the other side of all this. 

Love and hugs, Jules xx

[wyn]

hi ladies,

for all of you waiting for upcoming surgery i thought I would share a bit of positive news and hopefully will ease your minds.

I am Just back from seeing surgeon for results of op. My tumour had shrunk from 27mm to 8mm and op was successful as remaining tumour removed and clear margins acheived.YAAAAY.

Next step is waiting for radiotherapy to commence.

So keep chin up ladies and it wont be long until you have surgery behind you

sending hugs to everyone

Wyn x

[RacingJules]

Hi Everyone

Just back from seeing my surgeon - my op is next Thursday, 1st May. I'm scared but did get a lot of confidence from the surgeon so just need to get on with things, 

It all seems to move very quickly once chemo is done. 

Hope everyone is coping well. 

Jules xx

[setareh]

Hi everyone, finally I got a date for my surgery! I'm having my operation on 28th April. The plan is to remove the lump and have a clear margin. Still I feel exhausted from last chemo and not knowing what's happening next.
Hope you all are doing well
Lots of love

[kim-53]

hi sjb yes my chemo would have been tomorrow also but i too still feel wiped out by my last dose 3 weeks ago! i start radiotherapy on the 29th april so not long to go i hope i get some energy back by then, my legs feel like they have lead pipes in them! anyway good luck with yr op i hope all goes well x

[SJB]

All those that had their ops first have pretty much now started their radiotherapy.

One lady commented that after 8 days of radio, she had suddenly run out of energy. She was not expecting it to wear her down that quickly. That was last week, and she hasn't updated us since. 

Things seem to move along very fast after the chemo, don't they.

This is now day 21 post chemo - if I'd been having another dose, it would be tomorrow. But still I'm totally without energy and walking like an old lady, with slow awkward legs. Feet throb all the time and nails are very tender. at least 4 feel like they might come off soon. 😞

[RacingJules]

Thanks for the update Kaz. 

SJB - sounds like I am having the same as you - full mastectomy plus node clearance. I have just come home from an ultrasound which shows the tumour has collapsed and broken up into small pieces - apparently a good response to the chemo given the size of it when I was first diagnosed. I meet my surgeon on Thursday to discuss so just hoping I get a date for the op then too. 

Petal - I hope you are feeling better - it took me ages to get over the s/e's of the last chemo and I still have the nosebleeds in week 3 - so not quite done yet. 

Wyn - glad to hear all went well and I hope you are recovering now. 

Good luck to everyone and sending hugs, 

Jules xx

[Petal88]

Sounds like you are doing well Kaz and thanks for the tip about the drain. That is the bit I am dreading the most.

What is it with this last chemo? The lack of energy was to be expected, though maybe not quite the total lack, but we all have heavy legs and lots of tingling. Everything is still an effort but I guess I am only on day 15 and I used to only really pick up again just before the next chemo was due.

SJB how are the others doing who used to post on here but migrated to Facebook?

Hope everyone has a good week.

[Kaz16]

Hello Everyone
Survived the last chemo and now on day 7 hands and feet haven't been too bad but the legs feel like lead and no energy.
Good luck to SJB and Petal as you get nearer your ops and hope you are recovering well Wyn, I had my lumpectomy and nodes out last November , I did all the exercises so I do have full movement in my arm but my biggest regret was that even though the drains are a nuisance make sure they are draining properly as I rushed to get them out and have been left with an impacted seroma which I can't shift.
I start radiotherapy on 7th May and will be returning to work phased return then so I am hoping that my energy levels have picked up. Love to all the Angels ,nearly there but not quite !

[Petal88]

Thanks so much for your replies Wyn and SJB. Once more it helps a lot to know how others feel, not that I want any of us to be struggling so much at this stage. I really don't remember my legs feeling so wobbly before or not being able to do the simplest tasks yet but maybe I'm trying to get back to normal quicker this time just because I know there's no more chemo to come (thank goodness).

I am keeping my dark nail varnish on my finger nails until it has to come off before the operation. There are dark ridges and funny marks on them and the cancer nurse likened them to tree rings with one line appearing after each chemo dose every three weeks. I haven't painted my toenails since after the first cycle but I have made sure I have worn socks and kept them hidden as much as possible from uv daylight. Just as well it has been winter/spring as it would not be so easy in summer.

I shall try and relax and accept the exhaustion for the moment and will possibly phone the ward on Tuesday or wait till I see the surgeon on Thursday and ask if I can have a blood test sooner rather than later to see if I am still anaemic. My post chemo appointment isn't until the following week and that's too near the operation date for my liking.

Chin up Angels, we really are making progress even if it feels like we're going backwards sometimes.

[SJB]

Petal, I don't know when I get the results.

I am going in for my pre-op checks/assessment next wednesday, and then the op is Thursday 1st May. At the moment, I don't have any other appointments.

Although I'm over most of the SE's from chemo now, my feet still throb intensely and my legs are slow and heavy. Knees keep failing to lock so I feel like I'm going to fall over.

Finger nails are very yellow and ridged and a few feel like they are lifting. Toe nails are similar. I wonder how long it'll be before one comes off. Something i'm not looking forward to.

I'm also feeling quite down at the moment. My op is in less than 2 weeks and I still feel worn out all the time. I just wish I could have a break of some sort. It seems relentless.

[wyn]

Hi Petal -

I am doing well thanks I was sore for a day or two but feeling much better now.

I totally get what you mean with final se's and I also hit a brick wall even so that I was scared even on day of op that I wasn't strong enough to go through with it and paranoia set in, however they did blood tests,heart trace etc beforehand and everything went well.

I am still very tired and legs still sore from se's of last chemo but hopefully this will soon fade.

I am sure you will be fine by the time your op is due and if you have any concerns just let them know.

Hope everyone is getting over se's as best they can.

sending hugs

Wyn x

[Petal88]

How are you getting on after your op Wyn?

Is everybody struggling with SEs this time? I am very low just now, dissolving in tears with weakness all the time and feeling I am not picking up like before. Perhaps I am just being impatient. I do know I was a bit anaemic but I am worried I won't be in a fit state for my op on 2nd May. Now I know what a brick wall of tiredness feels like.

SJB when do you get the scan results?

Happy Easter Angels.

[SJB]

That's great news, Wyn.

I'm back home from my scans. Before I started chemo, my tumour was 50mm and several lymph nodes were very swollen. At the halfway point, the tumour was still about the same size but had collapsed and was pliable like jelly. Today it is only 20mm and all my lymph nodes are back to normal size.

Having said that, I'm still having a full mastectomy and lymph node clearance, but I'm happy with that. I've had the operation procedure explained to me now, and it was the first time they have said I'm losing my nipple, so I guess I'll be having one tattooed on after the reconstruction next year. Weird thought!

Anyway, today has been extremely positive, but I feel very tired. Should sleep well tonight. Roll on Friday, when I have my CT scan to check the other lymph nodes in my body. Doesn't sound like there will be anything to worry about though. 

Oh, I was told that you are not allowed to drive for 2 weeks after the operation, according to the restrictions of insurance policies, but after that, it is down to your own common sense depending on how much motion you have back in the arm affected by the op. It's the left side for me, so I need to be able to comfortably change gear and use the handbrake.

[wyn]

Petal - hope you are feeling much better now, BCN told me yesterday it is approx 4-6 weeks from op to rads.

Kaz16 - good luck with final chemo today, its been 4 weeks since last chemo and my nails are also discoloured but havent lost any. I mentioned before about a chemo patient in our clinic who used vicks vapour rub on her nails and they were beautiful so i told my sister who also had breast cancer last year but her nails were still discoloured, she started using vicks two weeks ago and showed me her nails the other day and discolouration has almost gone so I am going to try it.

 SJB - I had ultrasound yesterday to insert wire to clip prior to lumpectomy and radiologist was amazed as she could see no tumour left - chemo has blasted it into oblivion. I was so happy I could have kissed her.lol,

anyway ladies the lumpectomy went well and got home late last night. still feeling a little sore today but at least thats another hurdle over, get results next thurs and if everything is good will have an appt to discuss rads.

Hope everyone is getting over se's and take care

sending hugs

Wyn x

[SJB]

Good luck Kaz. It's now 2 weeks since my final dose of taxotere. Body aches are slowly easing but last week was a killer! My nails are yellow and ridged but no signs of lifting yet. I keep them painted. Feet are so sore, they throb all the time, and legs are very heavy and slow.

I have 2 hospital appointments one after the other today. The first is at 1pm with my breast care nurse. She is going to give me my soft prosthesis and talk me through what i need to buy and do to recover from my impending mastactomy and lymph node clearance op (1st May). Then after seeing her, I'm round the the X-Ray department for a mammogram and ultrasound scan to see how my tumour looks now.

Should be home by 4pm at latest depending on delays. Why are there always so many delays?

[Kaz16]

Awake early must be my steroids running around my body (I call them my Dexy midnight runners ) I have Radiotherapy planning meeting today followed by Chemo at 13.30 so it will be a long day. It is my last chemo today so feeling very happy about that even though I know it will be a tough one. No eyebrows, eye lashes and brown nails , feel exhausted but so glad I will slowly be getting my health back. Disappointed about the nails I followed advice about dark nail polish etc but I think my first T was so strong for me that the damage was done then as they haven't actually got worse but expect to loose them.
Love to all will let you know how I get on
Kaz 16

[Petal88]

Having dreadful day, very lightheaded and not on the planet, but made it to scans at the hospital. Just have to wait and see the surgeon next week and hope not to be neutropenic in the meantime.
Good luck to us all!

[Petal88]

Oh of course it does, forgive the chemo brain! I've already had that and know I need mine out.

[SJB]

Petal, SNB stands for sentinel node biopsy.

I'm also hoping Wyn's lumpectomy goes well on Tuesday.

[RacingJules]

Hi All

Just a week since my final Tax and starting to feel a bit more human - although the nosebleeds that I've had right the way through chemo are pretty bad. 

Really hoping everyone is feeling better now we are nearing the end of chemo - it's such a good feeling. 

Wyn - really wanted to wish you well for Tuesday. Will be thinking of you and hoping all goes well. 

With love and hugs, Jules xx