73.4K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

December 2016 Starters

Agarside
Member

Re: December 2016 Starters

Hi All,

 

More positive today.  Thank you for messages, I really shouldn't wallow as i am nearing the end, have had my surgery so with a few rads should be well on my way!  I never know if I should be worried about my diagnosis, as I "did" have cancer and just get on with it, as margins met and nodes clear (albeit was vascular).  I never know if I should be worried or not! I have no idea where my thinking, my hair would continue to grow - although slowly came from, I must have dreamt it!!  Hence why so devastated that it was coming out again...  But, on a positive it grows very fast, and coming though a dark brown.

 

Evie;  https://www.camille.co.uk/nightwear-c5/nightshirts-c39/womens-grey-checkered-fleece-button-front-nig...

Matalan and Tesco have been doing some nice brushed cotton shirts, that when healed a bit you can wear over thin vest tops = these helped me.  I still can not wear underwired bra's as the the end of the underwire digs into the end of my lumpectomy scar (sooo unlucky!). Think I will just need to put in a square of kitchen roll folded up at a later date.

 

I don't know if part of healing process, but have some really sharp pains in the scars, that take my breath away, I think to myself that it is the chemo killing off any stray cancer cells!

 

Jacqui, so sorry also about your friend, I was reading your last post on my phone and must have skimmed through this bit, a bit quick, I can not imagine how you feel.  Since being diagnoses, I have found a number of past colleagues have also been diagnosed and young as well.  

 

Take care

Amanda

x

 

Snail888
Member

Re: December 2016 Starters

Hi Evie I bought pyjamas with button up top from asda. Lovely soft material x
Evie-S
Community Champion

Re: December 2016 Starters

Ps - sorry, one more question. Can anyone suggest where to buy front opening nightshirts? Can't seem to find any. 

 

I've just ordered some "drain bags" from Drain Dollies that someone else recommended to me.

 

Evie xx

Evie-S
Community Champion

Re: December 2016 Starters

Amanda - really appreciate your understanding of what I am going through. But moving onto your issues - I'm in your club with regard to hair loss. I never shaved my hair off, instead I decided to keep what I had so that it would show under the scarves I wear. So I have a very very thin covering on my head but that just keeps falling out so it looks hideous really, but I just can't bring myself to shave it (don't even try to imagine what a state it looks!!). However - hair is coming back under my arm pits!!! What is that all about? I'll be 4 weeks post chemo this Friday - I'm wondering when hair loss stops and when growth starts. Keep going with your picnic ice packs, that sounds such a good idea. And hope the tummy issues settle. Is next T this Thursday - all the best and hope that the SEs are easier this time.

 

Fiddlercrab - all the best for your meeting today, will be interested to hear what your surgeon has to say. It does seem that UK surgeons are very conservative so if yours says a partial clearance is safe for you then it will be. Sorry to read about your nails - hope it's just the one. Chemo really is the gift that keeps giving......

 

OldDawn63 - really kind of you to attach links to node clearance, and I'm also grateful to you for your advice and understanding. You make a good point about the surgeons being cautious for a good reason - maybe I just have to accept that they really do know more than I do!! 

 

Jacquie - first of all, I'm so very sorry about the loss of your friend, sending you hugs. But love the positive outlook you have adopted, a good lesson to me as I indulge in self pity. I really really appreciate your reassurance about life post node clearance, thank you that was so helpful. Hope your nails grow back quickly and that your skin is ok now from the radiotherapy. Hope it is getting easier and each one done is a step closer to the end.

 

Cookiepuss - how are you doing today, when do you see the physio?

 

WMJ - how are you too? I'm hoping that as you are quiet that means you are out and about and enjoying yourself.

 

Evie xxx

Evie-S
Community Champion

Re: December 2016 Starters

Morning Lovely Ladies - an enormous thank you for all your wonderful messages, advice and support. You really are amazing to give me such support when you are all going through your own issues.

 

I feel very much calmer having read your messages and am going to speak again to both my surgeon and oncologist (and anyone else who will listen!) about the operation. I feel I need to understand fully why they have recommended this particular course and to find out more about the risks of lymphoedema and how to manage it before I sign that consent form.

 

My surgeon and oncologist are both highly regarded and I do like and trust them, but even the most brilliant Doctors can be bad at explaining things, and appointments are always so short. Or maybe it's just that I am frustrated that the nodes are positive and I can't safely have the op that I want.

 

My emotions are all over the place - I'm guessing a mixture of fear of the op and probably some hormones thrown in for good measure just to make sure I drive myself and anyone around totally nuts!

 

I really can't thank you enough for keeping me even half way sane through all this. I'm going to reply to you all in another message as this is long enough!

 

Love, Evie xx

Jacquie48
Member

Re: December 2016 Starters

Fiddlercrab, I'm glad you got away, and well done on the steps. I got a Fitbit for my birthday in January and started using it a few weeks ago. I've managed 10,000 about 4 of each 7 days, a lot of that by walking to and from the station when going to work. I'm determined to keep active as I'm quite worried about potential side effects of Letrozole when I start. I'm so sorry about your nails. Same time frame as me. Two of mine are now off, there's little nails underneath and whilst they're rather tender think it a bit less uncomfortable than before they came off. I have never had long nails (bit of a nail biter all my life) but didn't realise how much I use them! And because my fingers are tender opening packets etc is a slight challenge. Hopefully won't last too long. I hope you're not going to get anything else later on. I still can't believe the stuff I've experienced from just one T.

Cookiepuss hope you've enjoyed being at home and hope you've been spoilt.

Evie, sorry to hear about your consultation. I am six months past clearance and with four playful cats can reassure that being scratched hasn't affected my arm and nor has being attacked by a rose bush. I am careful and make sure I clean any cut or scratch promptly but I don't worry too much about it. Yes, I'll always have to be careful and there are days I'm fed up about it, but only one of my biopsy nodes was positive but after clearance 6 of 14 were and so I'm jolly glad they were removed. I am still doing my exercises (breast cancer care leaflet) and I have had full movement in my arm for some time. Yes, it aches a lot during radiotherapy treatments but it eases afterwards. As OldDawn says, you could ask for a second opinion. I do hope you can get the information you need to make a decision without feeling you've been pushed into it. It's so hard to be sure that you're not being given treatment you don't need. Would it be worth ringing Macmillan?

My positive for the weekend is that yesterday morning I got up at 3.45am to join a dawn chorus walk in a local wood. It was wonderful watching the day break and hearing the birds wake up, and walking in such a gorgeous spot in the fresh air yet still in London. I have been feeling sad as a dear friend died last weekend from secondary BC and I want to make sure I make the most of every day when I can. And getting lots of exercise can help prevent recurrence so that's an added bonus.

Hope you've all had decent weekends.

Love J xxx
OldDawn63
Member

Re: December 2016 Starters

Cookiepuss - glad you are home now. Unfortunately at the end of chemotherapy very few of us are raring to go, because the cumulative effects of the fatigue catch up on you. If you didn't sleep well in hospital either that won't have helped. It also takes time for your arms to recover from all the cannulations you had during chemotherapy. My arms are fine now, but it took about 2 months to get back to normal even with Hirudoid cream, and they can't have been anywhere near as bad as yours. I think the post surgery exercises helped (I have been doing the BCC ones - see: https://www.breastcancercare.org.uk/information-support/publication/exercises-after-breast-cancer-su...

I am reluctant to suggest anything that could do more harm than good, but the Basic ones would probably be alright if you can manage them. Otherwise, it is probably best to be guided by the physiotherapist.

 

Fiddlercrab - glad you enjoyed your week away. It's nice to be active again isn't it, even if you overdo it a bit. Good luck with tomorrow's appointment and hope you are able to have a constructive discussion about node clearance. It seems that the radiotherapy approach has not been widely taken up in this country, possibly because consultants are not 100% convinced where biopsies have shown some sentinel node involvement, on the basis of trial results to date. The most recent peer reviews are optimistic but also cautious, suggesting that more trials are needed to demonstrate that radiotherapy is as effective as full axillary node clearance (apologies if you have already seen them):

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4430736/

https://www.nature.com/articles/srep26304

I don't think there is anything more you can do to help your nails, but once you start to see new growth, they should stabilise. I managed to hang onto mine and the bad bits have almost grown out now, but they are still dry and flaky at the tips. I ran out of Onicolife drops in January but I am still applying oil several times a day.

 

Evie - sorry for your disappointment. I don't think specialists are very good at explaining the reasons they want you to have the treatments they recommend in terms the average person can understand. Their default position therefore seems to be to give the patient as little information as possible. That said, they may be cautious for a reason, because they are not convinced the trials done up to now are conclusive at demonstrating radiotherapy is as effective as full axillary node clearance. You are therefore left with a difficult choice, either to go ahead, or to ask for a second opinion. Even if you ask for a second opinion, you may still get the same response, although hopefully the other surgeon would at least explain more clearly. To get a fully independent view, based on the latest research, you may have to see a surgeon at a different hospital. Your GP should be able to set this up if you want to go down that route, but it could take a while and may delay your surgery, so the sooner you request it the better. If you can afford it, a private consultation could probably be organised more quickly. It's not a good place to be in, so I hope you are able to resolve things soon.

 

Agarside - hair loss is identified as a common side effect of T (http://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/chemotherapy/individual...) but it doesn't affect everyone.

 

Hope this helps and you had a better day than we did, waiting in most of the day for a Man. He was supposed to come this morning to look over a job he is doing for us next week, but he didn't turn up until late this afternoon.

fiddlercrab
Member

Re: December 2016 Starters

I spoke too soon about the nails. One is definitely lifting, big opaque patch in the centre. And it's almost 11 weeks since my first docetaxel, Jacquie, so goodness knows what will happen over the next few weeks.

fiddlercrab
Member

Re: December 2016 Starters

Agarside - My newly-regrowing fluff did a minor shed after each T, but nothing compared to the FEC shedding. Excitingly, it is now getting some colour back and is no longer pure white. Still fluff, though, rather than hair. I guess if you have had more regrowth due to the delay then the shedding might look more dramatic.

 

Cookie - awesome that you have escaped, hope you are enjoying your 'freedom' at least a little bit.

 

Evie - I am definitely going to quiz the surgeon and get more detail on the whys. I found a post on here from a few years back where ladies were discussing the same thing, so it could be something that is trickling in to practice but hasn't made it everywhere yet. These things do seem slow to be adopted, I guess because of the potential risks involved in reducing treatment (although there is pretty strong agreement that the current situation is over-treating, it takes a lot of brave women to accept less treatment as part of trials in order for it to become common practice). I am nervous about NOT having a full clearance with known positive nodes!

 

Jacquie - My fingernails are a nasty yellow colour and were really tender 2 weeks after my last T, but that seems to have gone now although they feel weird if I catch them on something. I have been rubbing onicolife drops in every evening and Vicks vaporub in the morning and during the day if I remember. The part that is attached to the nail bed seems to be retreating down my finger so the free white bit at the top is getting longer, but is hard to trim/file because the end of my finger gets in the way. I am really hoping they hang on. My toes are fine so far, but they never see the light of day in the winter!

 

I think some of the fatigue might be lifting... let's see what happens when normality kicks back in next week and I try to do some work!

 

Agarside
Member

Re: December 2016 Starters

Hi All

Cookiepuss!! Yay!! Escaped. I have no idea on what you can do about you veins 😞 I can have a little look at some research 😀

Evie, sometimes these Cons just don't want any discussions on treatments. They want to dish out the instructions and us patients do as we are told. I don't know what to say to you as you are clearly not happy. But you have every right to a second opinion and it is you who has to live with consequences not your Cons. You know how hard it has been for me, because I wanted treatment tailored to my needs and not theirs! But you could go and see your Gp and ask them the question or contact another Oncologist at another hospital.

Fiddler it is great to get away! I feel so much better but I still have this dicky tummy that just wont settle... but the biggest shock today, hair is falling out again! I am devastated to say the least... I was prepared for FEC, but it was growing back lovely after delay with T. I *thought* it would just slow down growth.. but it is similar to FEC.... the pain, now shedding.... My hubby keeps reminding me that by Thursday I will only have 3 weeks to do and all will grow back again... but today I dont feel positive. Everything else is fine, skin & nails....
Back home tomorrow....
Tonight a sunset planned on beach!
A
Xx
Evie-S
Community Champion

Re: December 2016 Starters

On a happier note.........

 

Cookiepuss - I am thrilled to hear that you are home. I'm sorry I can't suggest any exercises for your arms, but I'm sure your physio will help. In the meantime perhaps "warm" hot water bottles on the affected parts - that's what I was told to do after my veins reacted to the chemo? Can you try gentle stretching too? Again, after the port fitting I was told to keep stretching/moving gently - although I appreciate veins are quite different.

 

Fiddlercrab - what a lovely week and I'm impressed by your 10,000 steps, I've not managed that yet but you have inspired me to try!

 

Love and hugs to all.

Evie xx

Evie-S
Community Champion

Re: December 2016 Starters

Evening everyone

 

Sorry - about to have a long rant, if anyone has the patience to read it and can advise I would be so grateful.

 

I'm very disappointed (which is an understatement to say the least) following my appointment with my surgeon. I had taken along so many examples of people who have had positive nodes but not had a full clearance, but he was adamant that the only course of action he could recommend in my case is a full clearance. I still don't understand why but I think it is because the positive node was discovered at the same time as the breast lump, when I had various biopsies done. Though I just don't get why it makes a difference whether the lymph lump is discovered at diagnosis or during surgery - unless maybe it's the size of the lump?? Then he went on to explain that if he were to do a Sentinel Node biopsy, because the chemo has shrunk my lump the dye they use may somehow miss the affected node and give false information about which is the Sentinel node, meaning that they may remove a few nodes but miss the affected one. It makes no sense to me and I am so frustrated that I am having a clearance without understanding why. One of the reasons I want to avoid a full clearance is because we are told to make sure we avoid cracks/cuts to the skin after a lymph clearance but I suffer from eczema on my hands so won't be able to avoid cracks. Just feel so helpless.

 

Maybe Fiddlercrab's surgeon will be able to shed light on when full or partial clearances are recommended.

 

Thanks for reading! Evie xx

fiddlercrab
Member

Re: December 2016 Starters

Hello everyone

 

Hope you are all well 🙂

 

I have just got back from a week away and there are so many posts to catch up on! It was lovely to get away, although I did overdo it on a couple of occasions (in terms of general activity levels, not alcohol). I hit my 10,000 steps 5 times, haven't managed that for several months, although I did have a couple of days where I was exhausted and aching as a result. Got to have a cuddle or seven of my new twin nephews too. It's a long time since I wandered around with a baby zipped in my coat!

 

Back into the treatment mill on Monday with an appointment with the surgeon/MDT. Getting my next set of questions ready and hopefully this will be when I get a confirmed surgery date as well as answers to the node clearance/radiotherapy questions. Yikes!

Cookiepuss
Member

Re: December 2016 Starters

Afternoon everyone - it's a lovely sunny (bit chilly) day but I wouldn't care if it was pouring with rain as I'm at home hooray.

 

I finally got out of hospital on Thursday lunchtime and it is so nice to be back at home and sleeping in my own bed.  I'm on two lots of antibiotics for another fortnight - I made the mistake of reading the side effects on the leaflet and wished I hadn't bothered as I think these are some serious drugs! 

 

Both arms/hands are badly bruised and sore and I have now got cording in my left arm as well as my right which I think is a result of the IV antibiotics as most went through the left arm.  I am going to have a physiotherapy session to see if they can recommend some exercises to help.  I have read that in some cases they can "snap" the cords but it sounds horrible!  Has anyone got any recommendations/exercises that I could start doing now which might help ease things?

 

I thought that I would have bags of energy and be raring to go after two weeks of being cooped up but I have found that I am still very tired with very little energy.  I've been in bed by 8pm and fast asleep by 8.30pm since I came out.

 

SALowry - hope you are having a lovely time in Spain and you are getting some sunshine and warmth.

 

Agarside - enjoy your week in Talybont; it's nice to get away and do something normal.

 

Evie - how did your appointment go?

 

Jacqui  - my fingernails are very sore after 3 x T cycles and I am nearly four weeks after my last T cycle now.  It feels like they have been bashed with a hammer and I keep banging them against things which doesn't help.  I am hoping they stay put as I have used nail strengthener and dark nail varnish but a couple are incredibly sore so I wouldn't be surprised if they lifted.

 

How is everyone's hair doing?  My head hair is slowly coming back although the stuff on the top resembles the wispy bits on a baby elephant's head.

 

Eyelashes are non-existent and eyebrows are very sparse.  Has anyone found any products that help stimulate growth?

 

Right, I am going to hang some washing out and do a bit of housework which will probably mean I'm asleep by 6pm.

 

Hope everyone has the sunshine and enjoying the weekend.

 

XX

 

 

Jacquie48
Member

Re: December 2016 Starters

Amanda I really hope the ice blocks work for you. Cannot believe how brutal this treatment is. I only had one T. Dread to think if I'd had all 3. It hated me. I've been finished for 11 weeks and am so cross about the nails. My fingers are really uncomfortable.

Snail hope that whatever the cause the nausea stops. I thought they measured us so carefully to make sure the beam didn't touch anywhere it shouldn't apart from the immediate area such as lung which I can understand being clipped by rays.

The radiologist today was concerned how pink and hot the area is after only 6 and asked twice if I felt well. She said any sign of fever I had to tell them straight away. I'm worried about it now. I was marked for my boosts too today, after an almost two hour wait. I'm so tired. I'm working and wish I didn't have to. I am drinking lots of water to try to minimise any other effects. To be fair though I'm generally ok and for me chemo was far worse. Today I've been feeling a bit low but I'm sure will feel better tomorrow.

J xx
Snail888
Member

Re: December 2016 Starters

I feel a little better today. Different radiologist discussed my issue with others and said that due to it being right side some rays may be hitting my stomach and I am probably sensitive to that hence the nausea. Said drink water and rest x
OldDawn63
Member

Re: December 2016 Starters

Snail - hope the nausea is from the radiotherapy (or the coffee in the hospital cafe!), and not your liver. The radiotherapy must have something to do with it though, if it stopped over the weekend.

 

Evie - good luck with your appointment. Write the questions down on a piece of paper or in a notebook and take it with you. That's where I went wrong before the radiotherapy; forgot to do my homework and write the questions down (it isn't just you!). Thank you for asking about the radiotherapy, yes I finished last week and it was OK. The booster patch is still a bit red and itchy at times but otherwise no problems.

 

Cookiepuss - glad you are going home at last and will be able to celebrate your birthday. Hopefully your arm will now have time to rest and recover from the ordeal.

 

Agarside - good to see you are enjoying your break. I think it does you good to have a break if you can. The success with the cool blocks just goes to show that it's worth trying anything that might prevent SEs. As long as it is harmless, you have nothing to lose.

Snail888
Member

Re: December 2016 Starters

Great to hear people are getting out and about and feeling slightly more normal! I think the tamoxifen is also a factor in the nausea but 4 days off rads and it was gone but still taking the tamoxifen. I have a liver meeting next week so we will see if its that.
I think the ice blocks are a great idea. Could also try bags of peas?
Evie-S
Community Champion

Re: December 2016 Starters

Great to hear from you Amanda, that things are better and that you are having fun in Wales. Definitely a good idea to try the cold capping on hands and feet - but I'm sorry I did have a giggle at the image of you and your picnic ice blocks! I thought they used something "proper" like the cold cap. Some of my nails still feel like they have been hit with a hammer, so if yours don't hurt at all then in my very non medical opinion your picnic blocks may well have worked.

 

Thanks for your support - I have so many questions for today's appointment that I will be there all night! 

 

Enjoy your walk.

Evie xx

 

 

Agarside
Member

Re: December 2016 Starters

Hi All,

From, a nearly sunny day in Talybont!  SE's are now much lighter.  Still need an immodium every day - forgot yesterday and suffered stomach cramps all day.  Have been doing loads of walking, but I am so knackered, have lovely family and friends who keep it at my pace, but I feel so "unfit"!!  Welsh air is amazing at clearing out the cobwebs and getting a good nights sleep!!

I should have a nurse appt this afternoon, but have tried to cancel and reschedule for the last 3 weeks but they can not find me another appt - so am sure I will get a bollocking for not turning up later (have cancelled by phone). 

 

Jacqie, after the problems you had with your hands and feet (and Evie?), I used the cold capping technique on hands and feet - taking my picnic ice blocks in.  They told me on ward it wouldn't work - but so far day 15, no tingling, not numbness, not peeling, no discolouration of nails....  I am wondering/hoping it has worked!! 

 

Evie, thinking of you - I am sure all will be fine, keep asking the questions and asking for alternatives!

 

Cookiepuss, what a nightmare! Once home you can relax and look after yourself, hospitals are pants!

 

Snail, Oh no, sickness - I was sure that Rads couln't be worse than chemo, blah!!  I have my Rads consultant appt on 3rd May (my 50th) to see what he would like me to do (and what I will agree to!)  I am hoping for the 3 weeks, and not 5!

 

Take care everyone!

Off for a walk down to the beach and collect stones for my caravan garden!

Amanda

x

Evie-S
Community Champion

Re: December 2016 Starters

Morning All

 

Thank you Jacquie for your kind words too. Sorry to hear about your nails - from what I have heard the SEs from T can keep going for a while. I'm looking at my hands and hoping that the dry skin isn't going to start peeling like my feet. What can you do for your nails? My nurse said that there should be a new nail underneath if one lifts, hope that's right?

 

Cookiepuss - what a horrible time, but hope they let you out today.

 

Snail - that's awful to hear about the nausea with the rads. Have you got anything to take? I will keep hold of my stash of anti nausea drugs for when I get to rads. Hope they can sort you out or that the feeling passes.

 

Hugs to all.

Evie xx

Jacquie48
Member

Re: December 2016 Starters

Morning all. Cookiepuss glad you're going home and happy belated birthday. I'm so sorry about the cannula issues. You've really been through it.

Evie, good luck today. The node clearance is a scary prospect I know, but although my arm still feels numb in places and aches during radiotherapy I do have full movement in it. It's my left arm and I'm left handed.

Snail, number 5 for me today. I'm also being measured today for the boosts I'll have at the end. My arm and shoulder ache a bit, I'm pink and hot too. I don't feel nauseous thank goodness but am already very tired and my mouth feels constantly dry. That had eased after chemo but it's back now. I am working through it and think if I could rest more I wouldn't feel as tired. But overall I'm ok. I'm so sorry you're feeling ill and hope it passes. Do you have treatment reviews where you can talk to them about it? My first review is tomorrow. Wishing you better.

And 11 weeks after my one and only docetaxol my nails are lifting. Anyone else? It's not nice.

Love J xx
Cookiepuss
Member

Re: December 2016 Starters

Morning everyone- terrible afternoon yesterday. My latest cannula which was in the back of my hand had to come out as swollen where fluid leaking into tissue. There followed several attempts to get another one in including the sensitive place on the inside of the wrist. Anyway after 6 failed attempts, by which time I was in tears, felt sick and shaky, they had to call it a day.

I've now been switched to oral ABs for another two weeks and I should be discharged today. I cannot wait to get home and hoping that the 12 days of IV ones have done the trick and the tablets are just a precaution.

Thank you to everyone who has asked how I'm doing - I'll catch up on everyone when I'm home with my laptop and good connection xx
Snail888
Member

Re: December 2016 Starters

I bet you're ready to escape aren't you cookie puss? Rads number 5 today and felt more sick than ever with the chemo. Radiography say it's not a side effect yet there are lots of women feeling the same. Looking forward to 2 days off at the weekend. How are people getting in with rads? X
Evie-S
Community Champion

Re: December 2016 Starters

Cookiepuss - just checking on you to see how things are today? No need to reply, but just know we are all here pushing you to Friday and the end. xx

Evie-S
Community Champion

Re: December 2016 Starters

OldDawn63 - a huge thank you for all that information, advice and reassurances, I have made notes of all you say. It was really kind and helpful of you to send the link to the node clearance article, I have printed that to take to my appointment tomorrow. I hope all is going well for you - am I right that you have just finished radiotherapy (chemo brain means I forget so much, sorry)?

 

Evie xx

OldDawn63
Member

Re: December 2016 Starters

Hello again everyone and hope you all enjoyed the Easter holiday despite the SEs.

 

Agarside - glad you have come out the other side of the bad SE phase now. Hope you stomach settles, and that you manage to recharge your batteries while you are away.

 

Happy Birthday Cookiepuss (well as happy as possible under the circumstances). I didn't realise you'd had six already, no wonder your veins are suffering. Sorry you are feeling so down on your birthday of all days, and that the cannulas are giving you trouble again. It will soon be Friday though - you will get through this and there should be time to recover before the next stage. I hope your family are planning a proper 'official' birthday celebration for when you get home.

 

Evie-S - glad you have been reassured about surgery by others. Unfortunately I can't help on lymph node clearance as I didn't have it. I'm afraid I am more like you than WMJ and Swampy in thinking too far ahead and worrying too much about the 'what ifs.' I like to be prepared, but when you read about the possible side effects it can be unsettling. Before my surgery I managed to get myself wound up about the effects of the anaesthetic, but when I saw the anaesthetist just before the operation he was able to explain everything and put my mind at rest.

 

I looked into node clearance before I knew I wouldn't need it, and found that the only possible alternative is radiotherapy to the armpit (see: http://www.breastcancer.org/research-news/20131107-2 https://www.nature.com/articles/srep2630).

It would do no harm to enquire about it if you are interested, but your team may have already considered it and concluded that clearance is more appropriate for you.

 

Argymargy is right about the importance of following all the advice you are given on wound care and post surgery exercises. As well​ as helping get your mobility back as quickly as possible, the exercises help minimise the risk of lymphoedema, and help you prepare for and deal with the effects of radiotherapy if you are having that afterwards. I am still doing them 4 times a day, and will continue until 6 weeks post radiotherapy, as advised. They are becoming a bit of a chore now, but I am carrying on because I don't want my mobility affected by any delayed effects from the radiotherapy.

 

I don't know when your surgery is happening, but it may be quite soon, because they like to do it as quickly as possible after chemotherapy. There was not quite 3 weeks between the 'official' end of my chemotherapy on 1 January (21 days from final infusion on 13 December) and the surgery on 19 January, but it was just about enough time for me to recover. You will also have a pre-op appointment a few days before the surgery, when a nurse will do all the basic checks and brief you about the operation.

 

I hope this helps.

Evie-S
Community Champion

Re: December 2016 Starters

Hi Swampy

Thank you for that very helpful advice. I like your suggestion of how to tackle these things that are thrown at us and I like your humorous approach too. Good to hear that you are through your treatment and I wish you all the best for your return to work. It's kind of you to drop into this thread to share your experiences.

Evie xx

swampy1901
Member

Re: December 2016 Starters

Hi Evie-S

It's natural to be concerned about any operation but try not to overthink it - past experience has often shown me that the reality of a situation is often far less worse than my mind had made it out to be. Not easy to do I know - but that mindset has got me through an awful lot of the stuff that I thought I would never be able to cope with. Chemo was my one horror in all the treatment that I have had to face - but in reality sat there with a drip going into my PICC line was really quite an anti-climax and I thought to myself - silly mare!! 

 

I'm at the end of my treatment now and am just building up my strength and stamina for a phased return to work in a few weeks so all is well - a minor operation or two still to do in the future but we'll deal with that then!! But if my experience of the nodes helps you in any way albeit to ask a few more questions of the surgeon then good!! They (the surgeons) need to take account of what they say to people - not just fling out alternatives of treatment without discussing things!! 

 

Swampy

Evie-S
Community Champion

Re: December 2016 Starters

WMJ, Cookiepuss and Argymargy - thank you all so very much for your advice and reassuring words, I am enormously grateful and your kindness has made me cry. The support on this thread is incredible.

 

WMJ - I have quoted you on many occasions with the "take one day at a time" advice, you told me that when I was having chemo issues and you are so so right. In the middle of my current panic I needed reminding, thank you. I'm sending you a hug right back to help you too when you have your low moments. 

 

Cookiepuss - happy birthday for today and for when you actually celebrate it. So sorry you are having such problems with the cannulas, that's awful, together with the other issues. You have said you have lovely nurses - they will get you through this and home again and we are here to try to help you too. Thank you for supporting me when you are going through such a c**p time yourself, that's so kind. You are right, we can and will get through surgery - and you will get through this AB time too. Big hugs.

 

Argymargy - thank you so much for taking the time to share your experience and to give me such valuable and positive advice. That is really interesting about the lymph node transplant. I am going to make a note of all you say - as clearly it has worked well for you. I don't know where you are at with your chemo, but hope it isn't too awful for you - I wish you all the best. I'm sure you are on a different monthly chemo thread but if there's any advice I can offer I am more than happy to chat. Hugs to you too.

 

Evie xx

 

 

WMJ
Member

Re: December 2016 Starters

Happy Birthday Cookiepuss....💐

Sorry you are feeling low and having to spend it in hospital.

XX 

Argymargy
Member

Re: December 2016 Starters

Hi Evie-S,

 

I've had single mastectomy and lymph node clearance.  I'm 10 weeks post surgery and I have all shoulder/arm movement back and the scars are settling.  I know exactly how you feel; it's very easy to get worried about surgery because the clinicians have to explain all the things that can happen, some of which are pretty scary.  However many/most of these complications are rare and the great thing is that nowadays there is almost always something they can do about it, if it happens.  With lymph node clearance the most dramatic risk is lymphoedema, but now they can transplant lymph nodes from elsewhere in your body to help manage lymphoedema if you are unlucky enough to get it.  I know someone who had this done.

 

I believe the most important thing you can do to help yourself is to be very, very strict with yourself in following all the advice you are given around exercise, massage, healthy eating etc.  In particular, the sooner you start to do the exercises, 3-4 times a day, the quicker you will get movement back, which is really important for recovery and avoiding lymphoedema.  I know it can be difficult as I'm going through chemo and some days I really don't want to do anything, let alone exercises!

 

Best of luck with your treatment and wishing you a full recovery.

Cookiepuss
Member

Re: December 2016 Starters

Evie - I'm sure I'll be joining you in the panic room myself. Having been in hospital for two weeks now the thought of another stay is sending my normally low blood pressure sky high. I've yet to get a date for surgery but we can get through it.

I'm feeling low today - after a few good days I've been having problems with the cannula for the IV. The first few lasted 3/4days before having to be changed but in the last 3 days I've had 4 cannulas put in as my veins are just not coping with the IV. I'm in tears every time they have to find a new vein to use and don't know how I'm going to get through until Friday.

I asked about moving to tablets but they are adamant that I need to have the 14 days via IV. I feel sick, have a permanent headache and can barely eat.

It's my birthday today but I've put it on hold until I get out of here.
WMJ
Member

Re: December 2016 Starters

Hi Evie, so sorry to hear you are getting worried about your surgery. I am having the lymph node surgery and if I think about it too much I get concerned. I have had a bit of a low mood weekend myself. I think the key, although certainly not easy is to try and enjoy the few pre surgery weeks, when we don't have chemo. Take each day as it comes and when your mind wanders back to the surgery think of something good for that day and try your best to concentrate on it. It is very difficult I know, as today I had a blip and a few tears telling my OH that I just want my old life back. I guess I was just feeling sorry for myself.... ooh self pity not good hey? Anyhow thankfully it didn't last & doesn't happen a lot these days. Remain positive, use diversion tactics, try enjoy pre op days as much as possible and take it one day at a time Evie.... I too need to do this! Take care. I sending you a hug and my very best wishes. XX

Evie-S
Community Champion

Re: December 2016 Starters

Hi Everyone

 

Hope you are all enjoying the long weekend. I am in a panic about my surgery in a few weeks time - I try not to think about it but I just can't stop myself. I'm frightened of the surgery (mastectomy) itself but also the node clearance that is planned with the limitations and risks afterwards. I'm seeing my surgeon again this week to discuss but if anyone can help calm me down I would really appreciate that. I have tried looking on the various other threads but I decided that this thread would be the best one to offload onto. Sorry to ask but thanks for any reasssurances anyone can give.

 

Swampy 1901 - thanks for sharing your nodes experience, I will use that when I see the surgeon this week. I'm not sure what stage you are at, but hope all is going well for you.

 

Agarside - good to hear that you are feeling better, and hope the stomach settles soon. I'm sure the week in your caravan will do you the world of good. Have a lovely break.

 

Cookiepuss - is it this Friday (21st) when they set you free again? We'll be counting down the days with you. So glad you are being looked after so well.

 

OldDawn63 - congratulations on completing the radiotherapy. Always to good to read a post from someone through the other side.

 

SALowery - and another lovely postive post, thanks for sharing and for reminding us/me that things will get better. Great that you found everyone so positive when you went for the bald look. I've been using scarves most of the time but this weekend have been trying my wig again. Just can't get used to seeing myself with hair again!

 

Jacquie - I hope your skin settles/that you find a cream to help. Great that your hair is coming back so well.

 

Very best wishes to you all.

Evie xx

 

 

 

WMJ
Member

Re: December 2016 Starters

Agarsid(e)!!
WMJ
Member

Have a lovely week at the caravan Agarsid. The weather lo...

Have a lovely week at the caravan Agarsid. The weather looks not too bad for the week and the fresh air will be so good for you. Some school's are back this week as well so hopefully it will be quieter. 

R&R for you so enjoy. X

EggG
Member

Re: December 2016 Starters

 
Agarside
Member

Re: December 2016 Starters

Hi All!

I thought I would pop on and see how you all are and it seems my post from Friday is not here... 😞

Anyway, I did improve, felt so much better Friday but I seem t have this perpetual "dicky" stomach.  Some things I eat, drink - I just don't know what, seems to set me off.  I am not ill, just feel like I need to evacacuate, either up or down!  A rennie helps and I havent actually "evacuated" but it makes me uneasy to wander too far or stay out too long. 😞

I am still so tired, which again is pants!  But on a positive, hands and feet are doing great, only one mouth ulcer.  But what was a bit of a shock, I did a private Full Blood count, and my neutrophils came back as 0.6 so that was a bit of a shock!

 

Cookie, so glad to hear you can get out, it makes it just that bit easier to deal with.

OldDawn, it is so great to hear that there is life on the other side!  Just seems so far away atm.

SALowery sooo jealous!  But i am off to my caravan in Talybont for the week, going tomorrow (after the Easter rush) to get some fresh air and do some walking! 

 

Wishing everyone a great Easter and a little bit of chocolate!!

Amanda

x

 

WMJ
Member

Re: December 2016 Starters

Dead jealous of you SALowery! But pleased to hear you are enjoying yourself. Safe journey home and all the best for Wednesday. X
WMJ
Member

Re: December 2016 Starters

Glad to hear you are keeping your spirits up Cookiepuss and the nurses are treating you well. I,  like us all have everything crossed for you to be able to get the cannula out and go home on Friday. 

 

Thank you OldDawn for your congrats and words of encouragement. I am struggling with fatigue, it is not extreme but I certainly have to watch I don't overdo things, by overdo, I am really not doing much at all in the scheme of things. 

 

Thank you Evie for asking about my energy levels &  yes it still a bit of a struggle. I think it will take time to regain them. However still nice not to have to go each week for chemo. I am awaiting confirmation of a date for my node clearance and to have my port removed. Hoping you are getting out of the fog from your last treatment.

 

All the best to you all ladies.

Take care. XX

Cookiepuss
Member

Re: December 2016 Starters

Happy Easter 🐣 everyone

Well obviously I'm still in hospital but the nurses here are fab and trying to get my IVs done on time every day so that I can escape and go home for a few hours. I can't wait for next Friday to come round when (fingers crossed) I'll be allowed home. I know it sounds mad but the thing I'm most looking forward to is not having a permanent cannula somewhere in my arm which is the case at the moment. Normally for long term,frequent IV administering of ABs they would put in PICC line but given the infection caused by the port they are not keen to introduce another potential source of infection. The downside is that the cannulas clog up after a couple of days so need to be moved around which means I look like a pin cushion.

OldDawn I've actually had six cycles of chemo. I had 3 x FEC but the first full dose of T knocked me sideways with all the SEs so they reduced the dose for the next two and were planning on giving me a fourth although the oncologist did say it would depend on how I got on with cycles 2 and 3.

I don't think he wants to risk the 4th one now in case it puts me back further.

Well all being well I'm off to my brothers for lunch so I wish everyone an enjoyable day xx
OldDawn63
Member

Re: December 2016 Starters

Happy Easter everyone and sorry for not posting for a while - I lost the post I was going to send the other day unfortunately.

 

I finished my radiotherapy on Thursday, so the 'active' treatment is finally over for me. From now on its' just the 3 weekly Herceptin until October and the daily hormone tablets, which I started last Monday.

 

Chemotherapy seems a distant memory 4 months on, so your posts remind me just how awful it was at times, even for a few weeks afterwards. But it does get better.

 

Fiddlercrab and WMJ - congratulations on 'officially' finishing your chemotherapy. You will probably have to take it easy for the next two or three weeks, though. I'm afraid they are right about your energy levels continuing to drop afterwards. It was about 3 weeks after the end of the last cycle (a week before surgery) before I started to get some of my 'mojo' back. Gentle exercise helps, but only do a little at first, such as short walks, then gradually build up when you feel up to it.

 

Agarside - it must be awful finding that T is so vile and knowing you've still got two more of them to go, but you will probably find the next ones aren't quite as bad. Evie was lucky that the SEs subsided so soon - mine lasted just over a week each cycle. I didn't have any serious pain or constipation (quite the opposite!), and I hope you managed to get something for it. With any luck you should have turned the corner properly by now.

 

Cookiepuss - I'm glad you have found a way of managing the enforced hospital stay, so that you can get home for at least part of the day while you are not being treated. Hope this makes the Easter holidays more bearable. Regarding stopping the next treatment, five cycles may have been enough, especially with targeted therapy. The MRI scan taken just after my fifth showed that my 50mm lump had shrunk to barely visible.

 

Jacquie48 - check out the latest posts on Radiotherapy April 2016. If you need something to slap on immediately after radiotherapy, you can probably use aqueous cream, though check with the radiographers first. That was all I ever used throughout. It comes in jumbo sized containers, so to take some to the hospital you will have to decant it into a screw top jar or travel cosmetic pot. This is extremely messy. It's best to put it in a plastic bag as well, and take plenty of paper hankies to clean the pot and your hands afterwards, because it goes everywhere. It's not easy to rub in either but it will eventually.

 

SALowery - very sensible taking a break before rads, I did the same (was a bit less sunny in Somerset though). Hope you're having a great time. When you come back you can join the other ladies being zapped on the April 2017 Radiotherapy thread.

Jacquie48
Member

Re: December 2016 Starters

Hi ladies, hope you're all doing ok. Cookiepuss are you getting home and back ok? Agarside I do hope you're feeling better.

On nodes I can't really comment as I was told straight away they needed to do a clearance as the biopsy was positive and I never questioned it. As it happens 6 of 14 were affected so it was the right thing for me.

Snail, after two radiotherapy sessions I am pink and hot too and a bit worried about it. Also have 18 to go. I'm using my R creams and gel and crossing everything that my skin holds up. The R1 is for use as soon as possible after treatment and I'm not getting it on for over an hour afterwards. That's because it has to be left on for at least 20 minutes then you wipe off the excess so I can't do it at the hospital. I was considering using something else straight afterwards but worried that might affect how well the R1 works. The hospital hasn't been able to advise. I'll search the radiotherapy threads again to see if there's anything.

Thinking of all of you still not feeling great. 10 weeks on and whilst I'm mostly ok I still get very tired, feet still peeling and nails peeling and lifting. On the plus side my hair is coming back nicely.

Love and hugs to you all. So glad you're here.
Jacquie xx
SALowery
Member

Re: December 2016 Starters

Hi ladies

I just popped on from sunny Spain to let you all know it does get better, we have to walk up this really steep hill to our little house, yesterday my chest was so tight and thought I was not going to make it but I did it slowly and made it hoping this will help with my fitness levels a little.... we are back Tuesday and start my radiotherapy on weds...

Agarside you will get through this on days I felt exactly the same especially on T cycles big hugs to you

I know a lot of you are struggling but take each day as it comes and it's another day nearer to feeling better...

I've decided to go for the bald look on holiday I got quite a big stare from a little girl in the restaurant last night but everybody else has been so positive but I'm still so self conscious...

Wishing everyone well and hopefully a comfortable weekend sending love and hugs

Sara xxxxx
swampy1901
Member

Re: December 2016 Starters

Hi Fiddlercrab

 

I had a positive cancer result from one of the two sentinel nodes that was removed. However ultrasound of the axilla 'looked' normal so my MDT decided that chemo would sort what (if anything) was in the nodes as it's a whole body treatment. Then radiotherapy to the boob and the axilla should reinforce it. I was informed that it is still possible to have lymphoedema even after radiotherapy.

Research results have shown that there is little difference in the outcome whichever route you opt for which I'm alright with. I really didn't want another operation 'cos no matter what anti-emetics they give me I can still technicolour yawn for britain after an anaesthetic!!

 

Swampy

Evie-S
Community Champion

Re: December 2016 Starters

Agarside - sorry you are having such a rough time. I'm feeling guilty for giving you false hope that things would start to turn by now, I'm so sorry. Maybe things are tougher as you had T second - as you know I found FEC awful. Never apologise for moaning, this is exactly what this thread is for.  Have you spoken to the nurses/helpline to get some advice on what you are suffering? I think lots of us had weird aches and pains that we weren't warned about. Moan away or ask questions if we can help. The acupuncture and reflexology sound good. Sending you get well hugs.

 

Snail - hope the boob settles down, have you been given this R1 and 2 cream? I'm not sure what it is yet but I know everyone rates it.

 

Fiddlercrab - glad the Herceptin went ok yesterday and the focus group. I remember passing on my daughter's baby clothes to my sister. It was emotional - but at the same time I loved the fact that they were going to my sister so I could see them being used again.

 

Cookiepuss - glad to hear that you sound much happier today, that you had a lovely day and have your dad to stay. It's a pain, but you have made it a manageable one.

 

WMJ - how are your energy levels today? I started to worry about my surgery but then reminded myself of the advice you gave me ages ago to take one day at a time. I'm making myself go for a walk every day, some days are easier than others - possibly depends on whether the sun is out or not!

 

All the best to everyone for the long Easter weekend.

Evie xx

Cookiepuss
Member

Re: December 2016 Starters

The node clearance seems to be a bit of a grey area in the UK. I've mentioned this a couple of times to my surgeon and although he was aware of the US stance on it he said that it was standard procedure in the UK to do a full clearance. As Evie has said I don't want to take any risks and I'm having a mastectomy to ensure that nothing is left behind but it does seem a bit drastic to do the lot rather than remove and test individually.

Well I got home twice yesterday- once for the afternoon and then I went back to the hospital for my 6pm dose and then went home again for the evening and back for 11pm for my overnight.

I have to say it seems ridiculous that I am blocking a bed in this way. I asked if a community nurse could do the IV at home - apparently if it was just twice a day they could but as I'm on 4 a day they don't have the capacity.

Anyway I had a lovely day and even managed to do a bit of work from home.

My Dad has come up to stay for a couple of weeks and is helping my OH with ferrying me to and fro.
Cookiepuss
Member

Re: December 2016 Starters

Agarside - don't worry about having a moan as I've done my fair share in the last few weeks.

What sort of pain - is it in a specific area? I found I really ached all over and I had to take painkillers. At night I found my knees were really painful so usually took some paracetamol and codeine which also helped me sleep.

I also had the trots with T1 but went the other way with T2/T3 hence the Movicol.

If it's any help I usually found myself feeling better at around day 9 or 10 - that's when my aches wore off, nosebleeds tailed off and I started to get my taste back again.
fiddlercrab
Member

Re: December 2016 Starters

Agarside - Sorry to hear about the side effects. Best thing I found was to pre-dose and then keep dosing with alternate paracetamol and ibuprofen. I also took one-a-day loratidine which I think helped (at least, the evening I forgot it, the pain was so much worse the next day. I also had the tax-trots during T1 and T3 but only not T2.

 

Evie - I read somewhere that the US has already completed the equivalent of the POSNOC trial and found positive results, in that not doing a complete clearance for one or two positive nodes has similar outcomes to the full clearance. I've not explored it further, it was something someone mentioned on a forum. 

 

Provided my feedback to the "younger ladies focus group" yesterday, hopefully they will act on some of the suggestions they got. Everyone had ideas for how they could improve their offerings without too much effort/investment. I had to run out before the end to get my Herceptin, first one without chemo & steroids, but seemed fine.

 

Sorting out FiddlerKid's old baby clothes today to pass on to my sister. Might get a bit emotional...