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December 2016 Starters

Snail888
Member

Re: December 2016 Starters

Hi cookie puss. It seems the boosters are where they irradiate only the tumour bed. So concentrate on the margins in that area for 5 days.
Following on from Sara
I'm 44 will be 45 in October. I have 1 daughter who is 12 and 2 step children 22 and 21. Been with oh 21 years but only got round to marriage last November the day before chemo 1!
I live near Redditch in the Midlands and I'm a high school science/ chemistry teacher.
Xx
SALowery
Member

Re: December 2016 Starters

Hi ladies

Just thought as we share so much information on our cancer and treatments it might be nice to know a little more about you all....

I'll start and if you don't want to share that's fine

So my names Sara I'm 45 (just) birthday on the 13th 😬 I have 2 children 25 & 16 a wonderful husband married for 17 years, I work in a chemist as a pharmacist assistant which I love and I live in Upminster, Essex

I wonder if there's any of you lovely ladies near me?

Would love to hear a little about yourselves

Love Sara xx
Cookiepuss
Member

Re: December 2016 Starters

Morning again everyone

 

I had my appointment with the BC surgeon yesterday evening - surgery going ahead on 9 May so will be a mastectomy and levels 1 and 2 node clearance.  He examined me and said that it was very difficult to find the larger of the two tumours so he was confident that the chemo had done its stuff although until it had been removed and biopsied then he couldn't say for definite how well it had worked. 

 

However, given that I have two lumps and some "nodular involvement", eg dodgy tissue, in the same breast then it was agreed that a lumpectomy would not be the best option given my small boobs as the amount of margins that would need to be taken out to ensure the best outcome would not leave me with much left behind so the mastectomy was still the best route.  The caveat was that when biopsied it could show that the tumours were "dead" and the nodular involvement may have been wiped out therefore requiring smaller margins, but I didn't want to take any risks.

 

Evie - I did ask about the node clearance and the ONSA test that OldDawn linked to.  He said that they tend to only do the ONSA method if there has been no node involvement detected during the initial biopsy.  In those cases they test the sentinel node and if that comes back positive then they test each node as it is removed.  In my case (and I think you are the same) lymph node involvement was diagnosed at the intial biopsy and therefore it is standard to do an axillary clearance.  He said that they are currently trialling the ONSA method for patients who have affected nodes picked up at the start but there haven't been enough trials done yet to introduce this as standard practice.  Hope that makes sense and helps explain things a bit more?

 

Agarside - I hope your SE's start to wear off very soon as it does make you feel miserable.  I can certainly sympathise with the loss of taste.  Everything tasted like a woolly sock to me which put me off eating as I wasn't enjoying it.  This SE had disappeared but has come back again since I started the antibiotics - I finish them today so I am hoping my taste will come back again.

 

Snail - what are the boosters that you refer to?

 

I'm a bit disappointed that one of the SE's of radiotherapy is nausea - I was about to dispose of my spare anti-sickness meds but will hang onto them based on what you have said.

 

WMJ - pleased to hear your port was removed without any problems.  I bet it was a relief and hopefully it won't leave too much of a scar.

 

Evie - I love the quote that you put at the end of your post.  How true it is. 

 

Right I am off to get my pre-op info and they also need to take some bloods which I am dreading.  I just hope they can find a vein to use and I don't pass out!

 

 

 

 

Evie-S
Community Champion

Re: December 2016 Starters

Morning Everyone

 

Agarside - I really really hope the SEs start to go today. We are all with you and willing you better. Now I am going to test my chemo brain......I think you said that you have a Rads appointment on your 50th birthday so I'm going to wish you a very happy special birthday even if you don't feel like celebrating much today.

 

Snail - sending you hugs and strength to get to the end, like you say keep focussing on that fact. One day closer. There's a new challenge every day it seems.

 

WMJ - thank you for your kind wishes. Really good to hear that the port removal went well. I too will be glad to be rid of mine - just recently I keep knocking it which hurts. Hope your Rads appointment goes well today - will be interesting to hear when you get booked in. I have no idea how long after my op I will start rads. Can only see as far as Friday at the moment.

 

A friend sent me a quote yesterday "Strength, confidence, doesn't come from what we think we can do. It comes from overcoming things we thought we could not do". We have all overcome things we thought we couldn't do.

 

Evie xx

WMJ
Member

Re: December 2016 Starters

Morning all!

Good luck for Friday Evie....you are in my thoughts. 

Rooner999, hope you are a little brighter each day and can start to enjoy the wedding preps.

interesting reading about bra sizes. 🙈

sorry to hear you are struggling Argarside. Had my port removed yesterday, much easier than anticipated but at the hospital from 1-8.30. Glad to get rid of it as although couldn't have had chemo without it, it was always a little unsettled. Plus it takes me further down the line and one more thing to tick of my list. I am back today to meet the rads man. Looking forward to a hospital free week next week before I have my pre-op then op the week after. 

Take care & enjoy the bright weather, well it is bright in sunny Cheshire this morning. 🌞 XX

Snail888
Member

Re: December 2016 Starters

Sorry.you are feeling rough and down. This whole process can be so depressing! The end.is coming into to view though keep focused on that . I have a very sore arm pit and nipple. Had to stuff hankies all round my bra to stop rubbing. I have 3 normal and 5 boosters to go do hoping skin holds up. Sickness dreadful today so took some of my.left over chemo meds. I am also suffering shakes of i don't eat regularly. This may be due to me trying to improve my diet a little. I must put batteries in my glucose.monitor and see.
I hope everyone else is feeling as ok as can be. We must have something good.to focus on xx
Agarside
Member

Re: December 2016 Starters

Hi All,

So sorry that I can not reply individually today, I can keep up with posts but my brain is just frazzled to remember individual posts, it is so frustrating.  Feel sick one min, stomach problems (Tax trots), headaches, tiredness (by 7pm I am in bed!) then the pain....  Oh and added to this, the only thing that still tastes the same is water....  argh!

Meeting Cons tomorrow for Rads - crossing everything for only the lower 3 weeks....

 

Amanda

*feeling sorry for herself today*

Evie-S
Community Champion

Re: December 2016 Starters

Cookie - I too have tiny boobs so was very suprised to be measured a couple of years ago and told to try either 32C or 30D! I felt like I'd suddenly grown. However, my plastic surgeon was adamant that I was not a C cup so who knows. That was a very bizarre conversation.

 

Thanks for your kind wishes for Friday. I am manically doing stuff to distract myself and get those jobs done that I won't be able to do next week. When will you know your date?

 

Do let me know if you get any more info on node clearance........(my particular obsession at the moment).

 

I have found the counselling useful - but it's really important to get a good counsellor, one you feel comfortable with and who understands what you want from the sessions and understands you. I haven't really gone over stuff I have already been through (so no re-living), but have used it to help me get through the treatment, positive thinking and getting to grips with fears etc. But I have to say that I value this thread more than the counselling I think. Sometimes I just want to talk to someone and stop boring my poor family.

 

Evie xx

Cookiepuss
Member

Re: December 2016 Starters

Will give it a go but I don't understand as the 34B I've been wearing fit fine and feel comfortable- surely they wouldn't feel comfy if the wrong size?

Plus I've barely got much in that department so a DD seems a bit odd!
Snail888
Member

Re: December 2016 Starters

Totally with you fiddler crab. Bravissiomo saved my life. X
fiddlercrab
Member

Re: December 2016 Starters

Cookie - seriously, try on the 30DD. I got measured up at bravissimo years ago (for maternity bras, I think). I was wearing something like a 36D and she said "no love, try a 32F", brought me a selection and oh my goodness, the support, the shape, were sooooo much better, even in maternity bras! I have never looked back.

Cookiepuss
Member

Re: December 2016 Starters

Morning everyone

 

Hope we all managed a fairly good weekend - I cannot explain how lovely it felt to do some "normal" stuff and not have to worry about infections/people with coughs and colds and being able to go shopping/go for a coffee etc (in response to those asking if it was safe to go out my oncologist said that after 4 weeks it should be fine in terms of mingling and eating takeaways etc).

 

I'm a bit nervous about the radiotherapy but have pushed that to the back of my mind as I need to get surgery out of the way first. 

 

I have to say I am feeling very worried about the results of the biopsy once they have done the surgery - I just hope that the cancer hasn't spread further than the lymph nodes because if it has gone through them all and those bloody cells are floating around the rest of my body I really don't know how I am going to react to that sort of news.  I know I am being pessimistic here and imagining the worst but I just can't help it.

 

Jacqui - did you manage to test your prize mixer and make a cake?  Honestly, cake making is really easy so I hope that you had a successful trial run.

 

Evie - very good luck for Friday; I'll be thinking of you.

 

OldDawn - thanks for the link to the OSNA information.  I find it very frustrating that each team has a different approach to treatment particularly with the node clearance.  I have an appointment with the surgeon this evening and I'm going to quiz him a bit more on this.  It doesn't seem that the OSNA procedure is very widespread in the UK so maybe it is not something they want to take a risk on until more trials have been done.  Obviously I don't want to take any risks and I am already scared that the cancer has not been caught by the lymph nodes.

 

Rooner - you are definitely not alone in how you are feeling and Fiddlercrab is so right in saying that it's about managing expectations; our lives have been turned upside down in the last 6 months and will never be the same again and it is difficult to come to terms with everything.

 

Evie - did you find the counselling useful?  Like Rooner I am not one for this as I don't want to keep re-living things but am open to suggestions as to whether you would recommend it.

 

I'm not sure if there were any particular side effects from the Herceptin injection - my thighs and legs did ache but that could have been the 5 mile walk on Saturday and the exceptionally good job I did of cleaning the car on Sunday.

 

I have been looking for some post-surgery underwear - went to M&S but there was noone there to measure me up, so I just tried on my normal size but it was miles too big.  I then tried on a few different sizes in the hope I would hit lucky but that didn't work.  I then looked up how to measure myself and it came up with some ridiculous result - I do not believe that I have gone from 34B to 30DD!!  It can't be possible.  I will have to try and get back to M&S in the week and see what they come up with.  More blooming hassle!

 

 

 

 

 

 

 

 

Evie-S
Community Champion

Re: December 2016 Starters

Rooner - I really hope you start to enjoy the run up to your wedding and your special day. You have done so well with the weight loss already. xx

Rooner999
Member

Re: December 2016 Starters

Thank you Fiddlercrab. Reassuring that it's normal xx
Evie-S
Community Champion

Re: December 2016 Starters

Fiddlercrab - that was a great message. I know it was for Rooner - but also good for me, about managing expectations and realising that chemo etc will continue to affect us longer than we think. Still impressed at your step count - right time to get out of my chair and go for a walk! xx

fiddlercrab
Member

Re: December 2016 Starters

Hi Rooner. To echo the others, I am pretty sure what you are feeling is normal. It is hard to accept everything that has happened and there is a kind of expectation that we will ping back to being normal pretty fast once everything is finished. But I have heard from others that it can take 6 months to recover fully from chemo, and if you're on Herceptin or tamoxifen then the hits continue. Someone told me that they thought they were back to normal, but then when the Herceptin came to an end, they pinged back even more. That really helped to reset my expectations for myself, so now, when my hips are aching because I have hit 10,000 steps for 5 days  in a row, I realise that my goodness, the chemo is still affecting me, and that I do still need to take it easy. I used to manage my 10,000 nearly every day, AND go to the gym three times a week.

 

Going back to work cannot be helping, because there you are expected and expecting to be normal again. Even though it helps distract you, I would imagine that when you're feeling exhausted or down, the fact that you are not normal is all the more clear to you. I am still working from home, i keep thinking that I could go in, but on the odd day when I have had a meeting, I have been so exhausted that the next day has been about sofas and box sets.

 

Do speak to someone about how you are feeling, you deserve to enjoy the run up to your wedding and really look forward to it, not feel that it is just something that is going to happen in the future. It may be time to stop pulling on your big girl pants and accept that you need just that little bit of help, whether that is in talking form or additional medication. 

 

Fingers crossed for you

Lx

Rooner999
Member

Re: December 2016 Starters

Thanks guys.  I did go to one sessionb with the clinical psychologist after chemo 5 but then felt better so cancelled further sessions.  I am not a great talker, I am more of a 'man up and get on with it' kind of girl but even that attitude isnt working at the moment.

 

I think I will give my onco nurse a call as I am desperate to enjoy the next few weeks and the build up to the wedding; I don't want this horrible disease to take all of that away from me.  I am in Salisbury so will look at that in Winchester, thanks Snail and will see if there is a moving on course, thanks Evie.

 

I am back at work full time too which does help in taking my mind off things, but I do find it hard to focus fully and have to duck out early each day for rads.  Maybe when thats over I will feel a bit better. I have started to lose weight, thanks to Slim and Save (not sure I should be doing a diet of this kind but its helping) and 8lb gone already - that does make me feel slightly more in control than I did. 

Evie-S
Community Champion

Re: December 2016 Starters

Morning All

 

Jacquie - good to hear that you are feeling better for the break. Hope all goes smoothly today. Thanks for explaining about radiotherapy - it's all a mystery to me at the moment, so kind of you to help demystify.

 

WMJ - what a really lovely post yesterday. Great to hear that your consultant is happy with the results and hope your port removal is easy and pain free today.

I had a similar story to your hairdryer as I was planning what to pack - I had found a list on one site which included dry shampoo. I was just about to ask my OH to pick some up for me while he was out - when I realised that I really didn't need it!!

 

OldDawn63 - I hope the fatigue etc lifts for you asap. Thanks for your suggestion to sort out my hospital bag in advance, good idea - I have enough to panic about without my bag to add to it! Interesting to read about the OSNA test - don't think it would help me even if available in my area, but I will give it one last shot and ask about it.

 

Agarside - how are things today? Thinking of you as you might have hit the c**p days, but really hope they aren't so bad this time round.

 

Best wishes to all of you. As I said in my reply to Rooner this morning - this thread really has been a life saver for me. Thank you all for such amazing support.

Evie xx

Snail888
Member

Re: December 2016 Starters

Rooner you are not alone in feeling like this. I have become so fat and unattractive im.struggling to get out the house. I.still have 9nrads to go and have started work again which is exhausting. I think a counsellor is a good idea and also this forum is so good for making me feel I'm not alone. If you are close to the haven Winchester you can get counselling from them.too xx
Evie-S
Community Champion

Re: December 2016 Starters

Hi Rooner - really sorry to hear that you are feeling all over the place mentally. I think it is very normal to feel different to how you were prior to diagnosis and to have up and down days, but it might well help you to talk to a counsellor or someone given what you describe. I know I am all over the place too and have spoken to a counsellor (happy to chat on PM if you feel more comfortable) which has really helped me - although I have to say for me this thread has been my life saver. There are also various moving on courses which could be good too? Most importantly you must know that you are not alone.

Evie xx

Rooner999
Member

Re: December 2016 Starters

Hi all.  Sorry for long break, I hope you are all doing ok. 

 

Chemo finished 5 weeks ago, rads started last Tuesday (4 down, 15 to go) - all of that seems ok apart from the travelling to Southampton everyday!!  Been toying with having a gap before taking Tamoxifen as I feel I need a breather but onco nurse said not to so I have just taken tablet no 1...heres hoping it will be ok!

 

I felt that as soon as chemo would finish everything would return to normal and I would be fighting fit and back to my normal self but not quite happening as I had hoped.  Mentally I am seriously all over the place struggling day to day to find anything of interest or be happy about things.  My wedding is in 13 weeks and I so desperatly want to be enjoying the run up to it but just can't seem to muster up any enthusiasm.  I just dont feel like I am me anymore, this whole experienced has changed me and  dont feel like I will ever be the same.  Not sure whether I should go to the doctors but I just want to snap out of this haze and get back the old me.  Hair is coming back nicely, but I still feel that I am looking in the mirror at a stranger! 

 

Anyone else feeling like this?  Is this normal?    xx

Jacquie48
Member

Re: December 2016 Starters

Hi ladies, am feeling better for the treatment break. Hope you've all had good weekends so far. Just a quick one as I've realised I didn't reply to Evie's question about X-ray day. I don't know if it's the same for everyone but on my first three radiotherapy treatments they took X-rays before the treatment then did the treatment. They also did X-rays on day 7 and then Friday was day 12. They then do the treatment so it's not either or, it's both. As I understand it the X-rays are to check that I'm in the right position and that my breath holding is adequately shielding my heart. The aim is that the picture on day 1 is the same as during planning, and that they continue to look the same. Sorry, that's not very scientific but that's what I understood from them. I don't know if everyone gets X-rays throughout or if it's only those being treated on the left, heart side. I asked about the extra radiation from constant X-rays and they said the dose was so small I wasn't to worry...

Love Jacquie xx
WMJ
Member

Re: December 2016 Starters

Morning all.

Thanks for asking OldDawn & yes got my results. No change to hot spot after the chemo, so consultant happy. Any change would have indicated the chemo had worked on it and most likely something 'nasty'. A relief, although kept it out of my mind until the scan was done and then began to stew about it. The journey continues to be a rollercoaster of emotions. I Am having my port removed tomorrow, Wednesday I meet the radiotherapist. Thankfully I have an appointment free week the following week before my pre op and node clearance on 18th May.

Sorry to hear about the nightmare you had Jacquie.

I was very moved reading some of the posts yesterday, The fatigue we all feel, which I can relate too and the journey many of us are still on. Particularly those of you who have more intense surgery to come plus reconstruction. Then there is the added issue of things going wrong, such as machinery breaking down, never mind us! Carrying on with work inspite of the exhaustion and some of you have children at home to care for. I just want to say how much I was inspired by your strength and my thoughts and very best wishes are with you.

Take care and be kind to yourselves. XX

Snail888
Member

Re: December 2016 Starters

Thank you for asking after me. Live unflavoured yoghurt has calmed the burnt sensation a bit and not surprisingly I don't feel sick today as no radio. I've had an itchy chin and neck all week another symptom that has gone. Our machines have been going along just fine until.their service on Wednesday then Thursday nothing seemed to be right. I'm glad I have 2 more days off xx
OldDawn63
Member

Re: December 2016 Starters

Fiddlercrab - sounds like you have a low Allred score, in which case Tamoxifen is of limited benefit and probably optional. SEs of Herceptin are usually mild. The main ones I have had are flushed red face for a day or so, runny nose and occasional trots. The effects settle down once you have had a few (Herceptins not drinks!).

 

Evie - glad you have a better understanding of the reasons for node clearance now and you have a date for your surgery. Although it is happening maybe sooner than you expected, you seem to be well organised already. If you get your hospital bag sorted out well in advance there will be no last minute panic and a lot less stress.

 

Jacquie48 - sorry you had such an awful experience with the radiotherapy yesterday and the tiredness. At least you have a long weekend to get some rest, and I hope this break will help you cope better next week. According to the leaflet, the Flamazine cream I have got can be used for sore fingertips as well as radiotherapy burns, so it might be worth asking about that.

 

Congratulations on your prize! A new mixer is a good excuse to start making cakes. Why not get some disposable food preparation gloves to protect your hands, and have a go? You never know, you might have a talent for it and perhaps we will see you on Bake Off one day!

 

Snail - hope you feel better today. My rash doesn't seem any better or any worse but the itching seems to have reduced. I might try the yoghourt if the Flamazine and antihistamines don't help. Any particular flavour?

 

SALowery - lashes are slower to come back than brows, but they will. You keep staring at yourself in the mirror wondering whether they will ever return, then one day you will see tiny black dots where the hairs are just starting to come through.

 

Seems that mine is not the only hospital where the radiotherapy machines keep on breaking down. You know it's a bad sign when you get there and the waiting area is rammed. Although I finished a fortnight ago, I feel pretty c**p at the moment because I now have a rash from it. It has flared up in the last couple of days, when I thought it was all over and I'd got through radiotherapy unscathed. I thought chemotherapy was the gift that kept on giving, but radiotherapy can also do the same.

 

Cookiepuss - I also have Herceptin. I had 9/18 on Monday so I'm halfway through already! Like you I had the first 3 Herceptins IV with the chemotherapy, then I went over to the injections every 3 weeks. They inject it into your thigh and it only takes 5 minutes. Fortunately they do them into your thigh so it doesn't​ do any more damage to your arms.

 

If I were you I think I would want to get the operation over with sooner rather than later if possible. It is good that you have now got a handle​ on the nodes situation. There are a few hospitals in this country where they test nodes during surgery​ (it's called the OSNA test - see: http://www.dailymail.co.uk/health/article-2343353/Me-operation-Quick-test-spares-woman-second-breast...). I don't know if it is an option to be referred to one of these hospitals, or what it would mean in terms of travelling and delays. If there's a chance it could save you from having to have full clearance, it may be worth enquiring​.

 

It is a very good idea to try and fit a holiday or a short break in between​ radiotherapy​ and surgery if you can, because it will do you good. It's best to book one at short notice once you have a start date for radiotherapy, provided you feel well enough. If you have to wait until after its over, you may have to put it off​ for a few more weeks, because you don't know how you will be by then. You can also have a delayed reaction after radiotherapy (don't I know it). You're​ right about the Surgery threads being difficult to negotiate, but there are monthly Radiotherapy threads that you can join when you have a start date. I have found them really helpful.

 

Agarside - well done for reaching Tax 2, it won't be long now. Hope the ice blocks work again. Don't blame you for taking advantage of the complimentary therapies either.

 

WMJ - did you get your results yesterday? If so I hope they were good. At least your trip last week (even with unnecessary hairdryers) seems to have done you good, and took your mind off​ it for a while.

 

Hope you all have a good Bank Holiday weekend and are able to do things that will take your minds off all this.

Evie-S
Community Champion

Re: December 2016 Starters

Hi Everyone - hope you are all enjoying the long weekend. Lots to read since I was last on.

 

Amanda - I really hope the SEs are easier this time and good for you with your ice blocks, I would definitely have used them if I had heard about such things before I had chemo. A very happy early birthday wish for next week - I'm not sure which is the actual day.

 

Cookiepuss - sounds like you have a good plan for your surgery. They won't take any risks with you but it will be good to get it out of the way if you can. To answer your question - yes I am still planning to go ahead with the recon at the same time but understand your reasons for not. My surgery is this Friday, 5th - needless to say I'm in a panic.

 

Cookiepuss/Fiddlercrab - I think Cookie has summarised my understanding of node clearance, at least that is what I am told is done in my area. However, I have done so much research that I can no longer see the wood for the trees! It seems that Fiddlercrab's team has a slightly different approach, but maybe it's because your situation is slightly different to Cookie's and mine? I had one node show up in my first ultrasound when I first went to the breast clinic so they took a biopsy and it was positive. However, it wasn't visible on the MRI the next day. After chemo it wasn't visible on the ultrasound at all (I haven't had another MRI) - but my team still insist that they need to do a clearance of "levels 1 and 2" at least. It sounds very much like your situation Fiddlercrab - which just makes me even more confused (and frustrated)!! Very hard to argue with the experts who have done this sort of thing many more times than I have.

 

SALowery - lovely to hear from you on here, but sorry that you are feeling tired etc. I do find I am much more tearful when I am tired and from what I have read it seems that radio can really knock you. Big hugs to you and make sure you take it as easy as you can. Do keep us posted on how you get on. Are you about half way now? Good advice to take things one step at a time (I can never be reminded too many times). I hope you get that fab feeling back asap.

 

Jacquie - I hope you are feeling better after some rest. What a nightmare you had yesterday but let's hope that was just a one off c**p day. I don't understand what happens in radio - what is an x-ray day versus a treatment day? Now more importantly - how is the new Kitchen Aid?!! Well done on that win and have you made a cake yet? 

 

Snail - good tip on the yoghurt, I have noted that for when I get there. Hope you too are feeling better today after some rest.

 

Fiddlercrab - to answer your question about food, I spoke to a chemo nurse the other day and she said that I can now eat anything, no restrictions. It is 4 weeks since my last chemo. 

 

Hugs to you all.

Love, Evie xx

 

 

fiddlercrab
Member

Re: December 2016 Starters

Cookie - yes, I am also in line for Herceptin, I have had 4 and the next one is due next week. Seems OK so far - I was a bit nervous about having it without the massive steroid dose that accompanied the T, but I hung around for an hour afterwards like a good girl and it seemed fine. Not sure about tamoxifen yet. I am 'weakly ER positive' and I don't know whether that means yes or no. I kind of hope not, but equally I kind of want to chuck everything at this, just in case.

 

What you say about the nodes is exactly what I thought, which is why I was very confused because I did have involvement (swollen node, biopsy said positive) but they want to do the sentinel node thing! But the surgeon's explanation that because the nodes had resolved, they were going to treat me as node negative does make sense. Clinically speaking, I appear to have no node involvement, but we will wait to see what the pathology says. I learnt the difference between 'clinical' and 'pathological' while trying to work this out (clinical is what they can see in scans and by feeling, pathological is what they can see when they look at the cells)!

 

Does anyone know how long we should keep doing the chemo-related infection avoidance? Things like the avoiding Brie and dodgy takeaways? Is the end of the last cycle enough or should be do it a bit longer? 

 

My immune system is getting back to normal. I can tell because it's started attacking my bl**dy joints again. One finger is swollen and another one doesn't work properly in the morning, although my knees and ankles are still OK.

 

I hit Matalan and Asda the other day and got myself a zip front sports bra, button up PJs, two sleeveless shirts and two vest tops that are big enough and stretchy enough to pull up from the bottom. Hopefully that will get me through. I am pleased that I don't need to make the trek to Primarni!

Jacquie48
Member

Re: December 2016 Starters

Snail please don't feel silly! I had a bad day, you've had more than one! I'll take today over constant nausea. Had enough of that during chemo. And I really relate to the sore boob. Mine feels so heavy as well. But I'm in bed now and am sure will feel better in the morning.

Tomorrow I'm going to my local Lakeland shop. I won a bright red Kitchen Aid mini mixer in the monthly draw! Given the value of it I'll be too scared to use it 😂 I've never baked a cake in my life but I'm going to have to try now!
Snail888
Member

Re: December 2016 Starters

Oh jacquie that's sounds awful and I feel a bit silly moaning about my nausea and sore boob. I resorted to my dad's old trick for sunburn and plastered my boob in yoghurt. It has taken some of the sting out of the nipple!. I've been exhausted today not sure my year 13s got much out of me being there. I hope the next dose is easier Jacquie. Seems so unfair after chemo doesn't it.xx
Jacquie48
Member

Re: December 2016 Starters

Hi all, sorry not to have replied for a while. I've been reading but am so exhausted I haven't typed! Thank you all for your kind comments about my friend. Much appreciated.
Amanda I'm glad you've got through number 5 and really hope all is well afterwards.

Cookiepuss you seem to have had a good chat. Hope you feel ok about it all. In your shoes I'd take 9 May I must say. My fingers hurt so much. Trouble with buttons and shoelaces, opening jars, squeezing anything etc. Four nails now gone and wish the others would just go as the pain would be less. One of the radiographers suggested B12 to help them back but to check with oncology before taking them. As my appt isn't till 23 May i won't try before then.

Sara and Snail today I had radiotherapy 12. I've a blister and some peeling and discomfort but worse is the emotions. I'm so so tired. I'm working half days and wish I could just take the whole time off. I asked yesterday if I could have today as medical leave and I'm so glad I did. My appointment today was 0940. I am being treated on the left so have to hold my breath during X-rays and treatment. Today was an X-ray day. I simply couldn't hold my breath deeply enough for them to get good pictures let alone do treatment. I've been fine 11 times!! After an hour they took me off the machine and sat me with coffee in the waiting room as I was getting upset, was freezing, and my bad arm was terribly sore from being above my head. After 30 minutes I went back in and it took another hour. Heaven knows what the issue was today. The lovely radiographers said I'm probably tired and that sometimes it just happens. I felt really bad as anyone after me would have had long delays. Why today when I was so looking forward to getting home by 11 and flopping for the rest of it!! My arm really aches now and I have felt really down. But having said all of that it's still better than chemo and I keep telling myself it was just a bad day. I've got three days break now so can rest and hopefully my breast will be less red and hot and uncomfortable by Tuesday. Three more to whole area then 5 boosts.

Can't believe I'm having a moan again, sorry all. I can't believe the exhaustion. I'm going to take leave the week after I finish as I've been warned that's when the fatigue often peaks. The radiotherapy thread is helpful too though I haven't posted there either recently! But I prefer to come back to all of you here as I want to know how you're all doing.

Hope you all have peaceful side effect free weekends.

Love Jacquie xx
SALowery
Member

Re: December 2016 Starters

Hi all

Sorry not been on for a while but I do read all posts still...

Well after being away and feeling fab and managing to now go out without my wig and a hat with the hair that has started to grow back even though very grey!!! My lashes aren't growing back as fast as I thought but will take time I suppose I've been usu g a lash serum but that's not doing much!!!

Well I've had 7 radiotherapies (would have been 8 today but that was cancelled due to machine break down, very frustrating) so far... I was feeling great last week and had lots of energy and stuff to do but today and yesterday I feel really tearful again and drained of energy and so tired!!!! My husband has said I must take it easy but I feel so disappointed that the feelings haven't lasted longer and am now feeling things are going backwards!!!! How do you other ladies feel, especially Rooner99 and Running girl who where at my stage too.....

I hope the rest of you as ok especially with the worries of surgery too.. but you need to take everything and every day a step at a time, sometimes I think I'm so lucky as I wasn't sick with chemo, I haven't had the lifting nails (I used bio gel on mine and they have been fine) and I haven't had to have any more surgery but this journey has definitely made a huge impact on my life....

I do think about you all and sending you all love and hugs on this journey

Love Sara xx
Cookiepuss
Member

Re: December 2016 Starters

Sorry, that was a bit of an epic post!  I've been back at work full time this week so was making up for lost time.

 

Amanda - hope you have very minimal side effects after T5 (or, better still, no SE's) and can enjoy the weekend.  I can't say I blame you for using the ice packs if it helps preserve your nails. 

 

My finger nails are very sore and I struggle to do up buttons etc.  I'm going to redo my nail varnish later to check what they are looking like underneath the Opi Black Cherry Chutney - hope they don't start falling off!

 

 

Cookiepuss
Member

Re: December 2016 Starters

Afternoon - hope everyone is on countdown for a long weekend despite the forecast being a bit rubbish.

 

OldDawn - thanks for the link to the arm exercises; I am booked in for a session with a physio but not until 15 May and I may have to reschedule if my surgery is in the next couple of weeks.

 

WMJ - had to laugh at the Dyson hairdryer comment; my OH always looks surprised when I put my wig on as generally he just sees me wearing a hat round the house.

 

Well I had an appointment with my oncologist yesterday - he confirmed that cycle 7 of the chemo would not go ahead as he felt that the benefits of having it are tiny given that I have had 6 cycles already anyway and only 2 of the 3 cycles of T were at a slightly reduced rate.  He said that he was concerned that a further infection/side effects would delay the rest of the treatment and outweight any benefit. 

 

I am also scheduled to have 15 lots of Herceptin; 3 were given with the T chemo cycles via IV and I had the 4th via an injection yesterday.  The remainder will be done by injections every 3 weeks.  Is anyone else having the Herceptin too (I assume this is only for those of us who have HER2+ diagnosis).

 

So the next stage is surgery where I plan to have a mastectomy but no reconstruction at this stage (I just want the quickest recovery solution so can have reconstruction further down the line) - I was hoping to have a couple of weeks clear of any treatment but my surgeon has come back to say he could do my mastectomy on 9 May which has sent me into a mild panic. 

 

However, having had time to consider I think the best thing is to get it out of the way as quickly as possible so that I can recover and then perhaps have a week's holiday before the radiotherapy starts.  The alternative is to wait until the end of May as the surgeon is due to go on holiday and that is the next available date but it just feels like I will be waiting around and I'm nervous that the cancer would start growing again and the chemo will have been for nothing. 

 

I'm a bit concerned that it is planned for so soon after coming out of hospital following the port infection as I don't want to end up back in that situation again with any infections after surgery; however, having discussed it with my BCN she has suggested that I meet with the surgeon early next week and we can have a chat and he can assess if I am fit enough to undergo the surgery on 9 May.  This seems like a sensible way forward to me. 

 

The node clearance issue is quite confusing; I have had it explained several times now and it's taken a while to get my head around it.  My understanding is that if node involvement is diagnosed then it is standard practice to do a full node clearance at the time of surgery.  If a patient has no signs of any node involvement then at the time of surgery a sentinel node biopsy is done.  If that comes back as positive then the patient will be recalled for a full node clearance.  I think that's it in simple terms!

 

In the US they have started to test nodes as they are removed during surgery so that they only take out the affected ones but that is not available here as far as I can tell - although some of you ladies may tell me differently.

 

So, next stage is surgery which will be followed by radiotherapy (3 weeks worth was mentioned but I will focus on that once the surgery is out of the way - one step at a time) and then onto Tamoxifen.  I think I have more drugs in my veins than I do blood!

 

Evie - have you got a date for your surgery yet and will you be having radiotherapy afterwards?  Are you having the reconstruction that you mentioned?

 

I have had a quick look at the various forums relating to surgery and radiotherapy but they take a bit of trawling through to find the information that specifically relates to personal queries/circumstances whereas this thread has been a huge source of information and support.

 

Has anyone got anything planned for the weekend?

 

 

 

 

Agarside
Member

Re: December 2016 Starters

Hi All,

 

Evie! Yes T5 yesterday.  all went OK, still never smooth running, and delays because of double checking my choices.  I am sure my Cons is getting peed off with these extra calls during his surgeries! 

Took my ice blocks in, and used out in the open, with a few raised eyebrows, but I have not experienced any hand and foot problems so why would I not do again! ??

 

Feeling good today, but know I will probably crash tomorrow, so trying to get as much done as I can work wise.  Would have loved to have gone to my van for the BH, but if I get ill, miles away from anywhere could be an issue.  Best feeling is less than 3 weeks to final cycle!!  Rads appointment next week - on my 50th!!

 

Hair is still hanging in there, just a small amout of shedding, but not growing as fast as before - so fingers crossed.

 

Hope everyone is doing well!!

Amanda

xx

 

This Trust offers complimentary therapies, so am taking up the Aromatherapy and reflexology for 5 weeks!

 

 

Evie-S
Community Champion

Re: December 2016 Starters

Amanda - if my very unreliable brain is right, I think you have second T today. Just wanted to wish you well. Hope the SEs are easier this time. xx

Evie-S
Community Champion

Re: December 2016 Starters

Oh WMJ - thank you for sharing the hairdryer story, how lovely that OH had forgotten that you don't have hair. All the best for the results tomorrow and thank you for your kind wishes for my appointment. xx

WMJ
Member

Re: December 2016 Starters

Yes Evie it was the break away with our son & his partner. 

When we arrived at the hotel my OH said for me to rest on the bed and he would unpack our bags. I was just relaxing when he says " OMG love they have a dyson hairdryer you are going to love that" . I just burst out laughing as he did,  neither of us have any hair! He then went on to say I just saw it & thought how often you complain about how bad hotel hairdryer are and completely forgot you had lost yours. TAlk about seeing things through rose tinted glasses!  😂😂

 

Thanks Old Dawn, MRI was fine just waiting on the results isn't great but I have an appointment with my ONC tomorrow so hoping she will reveal all, Funny thing is not even given it a second thought, even though I have known for a while it was happening but now it is done I am a bit concerned.

 

Hope your appointment goes well Evie and you get everything ironed out.

 

I have my port removed on Tuesday so thanks for the reassurance Cookiepuss.

Pleased to hear your positive news from the MRI & the best of  luck with your appointment on the 10th Fiddlercrab. I am having my node clearance on the 18th.

 

XX

Evie-S
Community Champion

Re: December 2016 Starters

Definitely - I'll make sure I understand it fully and let you know. xx

fiddlercrab
Member

Re: December 2016 Starters

No worries Evie. I'd like to hear what your surgeon says too!

Evie-S
Community Champion

Re: December 2016 Starters

Thanks so much Fiddlercrab for sharing what your surgeon explained to you, that's really helpful. It makes a lot of sense to me and I will ask my surgeon why I can't have the same. There may be a good reason, but I just need to understand it. xx

Snail888
Member

Re: December 2016 Starters

Find a Primark if you can. Great value stuff
fiddlercrab
Member

Re: December 2016 Starters

Hi All

 

i saw the surgeon again yesterday and now have a better grip on the node thing. Basically, they are offering to do a 4-node sample rather than a full clearance (despite known involvement) because the MRI indicated an 'excellent' response to chemo, and that the node(s) that were visible on the first MRI have 'resolved'. So they are treating it as no node involvement. I have a choice between the 4-node sample and full clearance. If I go for the 4-nodes and the pathology is positive, then they will go back in and do the full clearance. If I am still dubious, I can have the full clearance. They will discuss ratiotherapy at the MDT meeting once the full surgery pathology results are back. I am now much much clearer about they why and it does seem sensible, although I do still have lingering doubts because I know it WAS in the nodes. So I have said yes to the sample for the moment and we will see what the pathology says. I am booked in for the 10th.

 

So now for some shopping! I will check out the links to PJs but what I really want are some stretchy jersey shirts. I saw one in white stuff but I am not paying £30 for top for this! Going to check Asda and Matalan either this week or next.

 

Evie- hope that helps you, good that you have another meeting booked. 

 

 

Evie-S
Community Champion

Re: December 2016 Starters

Afternooon All - hope you are doing well.

 

OldDawn63 - thank you for the link to Sainsbury's PJs. I have bought these as well so now have a selection to choose from! Loved your description of your legs.......we have to see the humour in things where we can to keep us even half way sane. I feel like I will have to deal with my underarm hair before surgery!! 

 

Cookiepuss - thanks for the reassurance about removing the port, that's one less thing for me to worry about! I'm very glad to hear that you have managed to go back to work, great news. 

 

I'm meeting again with my surgeon to chat things through - I feel much happier having set this up.

 

Evie xx

 

 

Cookiepuss
Member

Re: December 2016 Starters

Just popping in quickly so will catch up again when I have a moment.  Have been back in work today and it felt SO good to be doing something normal.

 

For those asking about port removal I can give you the benefit of my experience.  As you know it was badly infected and very very sore by the time it came out.  They did it under local anaesthetic and to be honest the first needle with the lidocaine anaesthetic going in was the worst bit but once that started to work (within seconds) I didn't feel the next injection to numb the area.  It took no more than 15 minutes from start to finish - the only "uncomfortable" bit was when they were flushing/rinsing it out but it just felt like a bit of pressure in that area. 

 

Also bear in mind that mine wasn't sealed once it came out as they said they didn't want to risk any infection taking hold under the skin and causing an abscess so I have a rather large hole which is filled with "packing" with a dressing on top which is being changed twice a week.  Anyway even with the hole I have that will take time to heal it is not at all painful. 

 

I am guessing that as you haven't had any problems with your port that once it's out you will be stitched or glued up and it will be less sore than when you had it put in.

 

Hope that helps as a quick answer.

 

 

OldDawn63
Member

Re: December 2016 Starters

Jacquie - sorry to hear about your friend, but it's good that you have found some positive things to focus on. We all need them at times.

 

Snail - hope the nausea settles soon, and at least you have a possible explanation for it.

 

WMJ - glad you enjoyed your break and hope all goes well with you MRI scan and appointment this week. 

 

Evie - front opening nightshirts and PJ tops seem to be hard to find these days. I couldn't find any before my surgery, but managed with the baggy PJs and strappy cotton nighties I'd already got, which I could step in and out of. I found some on the Sainsbury's website when it was too late (https://tuclothing.sainsburys.co.uk/p/Blurred-Spot-PJ-Set/131168292-MultiColoured). You could try Asda (George) as well, I think they may have some. Hair growth seems to be unpredictable, but it should start growing properly once the chemotherapy is over. It is frustrating though when hairs come back on some parts of your body but continue falling out elsewhere. The hairs on my legs were the first to make a reappeareance and I haven't attempted to remove them during radiotherapy. I now look like a Hobbit (or maybe the Dawn of the Planet of the Apes, ;-)). I might have a go with some depilatory cream soon.

 

Amanda - no you didn't​ dream it about hair growing back while on Taxotere, because it does happen to some of us. It happened to me - I noticed the first sign of regrowth during my second T cycle. Eyebrows and eyelashes were slower to come back, and continued falling out after chemotherapy finished. By the time I had my surgery I had no eyelashes left and not many eyebrows. The eyebrows started to come back a couple of weeks later (at first it looked as though I had two huge bruises above my eyes!), then the eyelashes a week or two after that. Sharp pains are (I was told) from the nerves reconnecting during the healing process. They can start up again during radiotherapy. I haven't been badly affected by this though. It seems to have settled down now and I only had to resort to paracetamol once during radiotherapy.

 

I have found this which may be of help:

http://www.dailymail.co.uk/health/article-2669242/My-hair-journey-chemotherapy-Woman-23-makes-timela...

Someone posted something similar on another monthly thread but I can't find it, so I don't know if it is the same one. Anyway it gives you an idea what to expect in terms of the timescale for hair regrowth.

 

Update- found the link to the one posted previously on You Tube:

https://www.google.co.uk/url?sa=t&source=web&rct=j&url=%23&ved=0ahUKEwiRkNrsu73TAhVIkiwKHX8pDLoQwqsB...

If link does not work search on Google or You Tube under Hair Regrowth After Chemo.

Evie-S
Community Champion

Re: December 2016 Starters

Snail - good that you have found a semi solution to the nausea, I sympathise nausea is really pants. Also sympathise with feeling hot in the night - no idea what's causing that with me, prob more hormones flying around. 

 

WMJ - glad you had a lovely weekend, that was the one in London with your son, is that right? Re the port - I still have mine, it will be removed when I have surgery on 5 May. Mine was also sore when it was put in, so I am fully expecting not to be able to lift either arm for a while - but maybe getting the port out will be easier than going in, certainly have to hope. Yours will come out before mine so perhaps you can let me know? All the best for that and the other appointments. Glad you feel more settled - this journey is an emotional rollercoaster, but one that this thread has helped so much with.

 

Evie xx

WMJ
Member

Re: December 2016 Starters

Thanks Evie, I was away for the weekend and thoroughly enjoyed it, however I am really knackered today so just taking it easy.

I too have had a bit of pain around my lumpectomy scar, but think it may have been as I wore some normal bras whilst I was away at the weekend and they had a bone in them.

My emotions were a bit all over the place last week but seem more settled now. My mind is wandering a bit too much and I am overthinking things a bit too much at times. Need to reign that in a bit to be honest.

I am having my node clearance on 18th May, all being well. Tomorrow I have a MRI, wasn't concerned as expect all to be fine but I know once I have it done I will be concerned. I have appointment with my oncologist on Thursday so expect to get results then. A week tomorrow I am having my port removed and the next day I am meeting the radiotherapist.... so busy two weeks fo me. How painful is having the port removed? Mine was sore and very bruised for a couple of weeks when it was put in.

Jacquie sorry to hear about your friend, that is so sad....I agree we need to make the most of everyday and the dawn walk sounded amazing.

Sorry to hear many of you are having issues with your nails. 

So pleased to hear you have escaped  Cookiepuss 

XX

Snail888
Member

Re: December 2016 Starters

I had a 3 day week then bank holiday then 4 days last week. After the one radiologist said they could be hitting my stomach I had fridays session on an empty stomach and felt less sick. Boob hot and if I have a late session I'm so hot in the night I've had the windows open! Thabkfully another 4 day week this week and next the just 5 boosters x
Evie-S
Community Champion

Re: December 2016 Starters

Hi Amanda - your message crossed with mine, thanks so much for that link, exactly what I have been looking for. Think I will treat myself to a variety of new PJs etc to get through this. New stuff, even if it is scarves and sensible PJs, always gives me a boost!

 

Good to hear that you are happier today. Re bras - I read somewhere that ladies have managed to take the wire out of their nice bras so they can keep wearing them. I'm sure I would wreck the bra or my hands but could be worth a try.

 

Evie xx

Evie-S
Community Champion

Re: December 2016 Starters

Thanks so much Snail, just about to go online and order now. How are you doing with radio? xx