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September 2016 starters

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Re: September 2016 starters

Aine - maybe you'd be better off visiting Newgrange instead! You may have already been but if not, check it out: http://www.newgrange.com

it's nearer to you, and is more impressive than Stonehenge. And it's older!

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Re: September 2016 starters

Omg Oldawn.....I will never be able to think of Stonehenge without picturing your wig story!!!!! Brilliant!!!

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Re: September 2016 starters

Hello again everyone!

 

We got back from our holiday on Saturday. The weather was a lot better than the forecast suggested it would be. My wig only came off a couple of times, the first time​ when I was wearing a wide brimmed hat which blew off in the wind and took the wig off with it, and the second time at Stonehenge when my woolly hat got caught on a twig sticking out of the doorway of one of the reconstructed Neolithic houses, also taking my wig off with it! I had to dash back inside where some very kind ladies helped me put the wig back on straight. But at least I was able to get back into the habit of walking. We didn't do very long walks, only one or two miles at most (e.g. around Stourhead landscape gardens, and along the Kennet and Avon Canal from Bradford-on-Avon to Avoncliffe Viaduct and back), but it's a start. It is back to the treatment treadmill now, though. I had my first radiotherapy treatment yesterday morning (at last!), plus Herceptin 7/18 in the afternoon.

 

Aine - thanks for the advice. Having thought about it, I now realise that you and the OH doctor are right about not being ready to go back to work yet. 23 radiotherapies will be a lot to cope with. I didn't start to worry about the effects of the radiotherapy until just before I had the OH interview. After looking into the SEs, I was seriously considering not going ahead with it so I asked for the OH report to cover that scenario. I only confirmed I would have the radiotherapy last Friday, while on holiday​. I'm still not 100% committed to having the boosters and will see how I get on with the standard 15 first. The slow hair growth must be so frustrating, but you will probably find it starts growing faster soon. I must admit there are times when I am a bit impatient with it. I will be glad when I can say goodbye to the wig, even though​ it would have been difficult to face the world without it. I had a similar comment about my wig not long after I started wearing it, and took it as a sign that the wig was OK!

 

Auntienanna - congratulations on finishing your radiotherapy - I've only just started mine! Sorry to hear you are still suffering with nausea and vomiting so long after your chemotherapy ended. It could be the hormone tablets rather than the chemotherapy because they can also cause sickness. I don't think it is normal to be still getting this SE from chemotherapy so long after finishing it, so I would definitely seek further help if I were you. The zombifying anti-sickness tablet (Cyclizine) worked for me, and you only have a 3 day course of it, but you wouldn't be able to work while you are taking it. I can't remember whether they have tried you with Akynzeo before, but if not, it would be worth a try - you have nothing to lose by asking. They should be prepared to give you something new if nothing you have had up to now is helping. You are already having to cope with fatigue while working on busy wards and studying, so you shouldn't have to put up with this any more. Hope you get some help with this soon.

 

Lisad - it's good to see you are settlng back into some normality after your active treatment, hope you enjoy the musical and holiday. My hair is growing back fast as well, it is now about 1cm long but still a bit thin in places and there are more grey hairs than there used to be before chemotherapy, so I am not brave enough to dump the wig just yet. I also have eyebrows and eyelashes (hooray!) and hairy legs (boo!). I am just using E45 shampoo though and will let my hair grow in its own time - I don't think it needs a lot of help anyway. I can't advise on your shoulder problem I'm afraid. You may be right about the Letrozole causing it but it could be completely unrelated. As it has persisted for 3 weeks, it is probably best to get it checked out.

 

Truey - you are ahead of me with the radiotherapy, despite starting and finishing your chemotherapy after me. They were very slow organising it after the oncologist said it should start 4 weeks after the operation, which was on 19 January. If this had happened I would have nearly finished it by now instead of only just starting, and I wouldn't have had time to worry about it and have second thoughts. At least it is now underway, and unless there are any unforeseen delays it will be finished by Easter.

 

 

 

 

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Re: September 2016 starters

Auntienanna

Im sorry you are still getting nausea at this stage.  Could you not go on some tablets to lessen it?  I was offered several choices when I had nausea - mind you they either didnt work or zombified me!

 

And as for SEs Im still getting sore fingertips, nails and hands.  I had another Herceptin on Thursday and they have got worse since then.  Also numb toes which is strange!  Im just going to be patient and hope they will gradually lessen over the next 3 weeks.  My nails are disgusting looking - black and rising off my fingers.  Painted them plum which looks great so at least thats a success.

 

Im soo fed up with my bald hair....the wig is ok and I have fluff now.  My friend tells me that when I have some hair the wig will become more and more uncomfortable so that the next problem to deal with.  I had my first comments about my hair from a woman I havent seen for a while.  She said my hair was looking great and had I just been to the hairdressers.  Yuk!!!  I just changed the subject but I hope other people arent thinking the same thing or they will eventually figure out its a wig.

 

Im getting soo bored - you are lucky Auntienanna that you are studying - it keeps you busy.  You are fantastic to have kept going throughout all of this - I just dont know how you did it.  Im a teacher and am starting to miss the pupils and staff.  But my energy levels are all over the place and no way could I go back to school wearing a wig anyway.  Ah well as the weather improves I have to enjoy being outside again.

 

How is everyone else doing?  I hope you are all getting over RT and all our lovely SEs.  I am waiting for my next appt with my consultant in April to see how I move forward from here.  Patience. Patience

A x

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Re: September 2016 starters

Hello all, I hope you're all doing well. I'm having a fed up day today as I had another bout of sickness this morning. I've had them on and off since chemo ended, much to my annoyance!

Does anybody know how long such SEs last? I can cope with the fatigue and taking it easy but this vomiting is beating me and me no likey!
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Re: September 2016 starters

Thanks Rosie & Sue for your replies.

 

Sue it's weird about the shoulder pain, i shall monitor and see if it settles down now rads have finsished.  Although I do have bone pain in my hands and wrists so not sure if that's from taking Letrozole.

 

I felt quite emotional today, not sure why as it means no more on going to hospital apts for a while just check ups.

 

It will be inetresting to see how the next couple of weeks go as nurses did advise today that the area could get more sore and may also feel more tiredWoman Sad

 

Thanks Rosie for the recommendation of "Beautiful" looking forward to it..

 

Perhaps July time we can sort out about meeting up in September as we will need a central location which is best for all of us.  I will keep it posted on this thread, as I am getting lost on the forum with so many threads running.

 

Lisa x     

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Re: September 2016 starters

Thank you all for your kind comments- I feel very lucky to have supportive friends and this forum has been great for sharing and hearing others experiences.
Lisad - I've seen Beautiful twice! Took my daughter recently and she loved it too. Wasn't bored for a second and the music is fabulous. Hope you enjoy it. I'd be up for meeting in September with whoever can make it. Thanks for offering to organise. X
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Re: September 2016 starters

Hi Lisa,

 

I started chemo in the last few days of September so am only just now starting rads. I've had 3 sessions so far. I thought I would just mention that I have noticed and ache in the shoulder and upper arm of my mx side since starting rads; like you I haven't had this before. Hopefully this means it is a result of the rads and not the range of awful things our minds leap to!

 

I'm having 15 rads with both chest wall and clavicle area done every time. I think the ache might be fromthe clavicle because I can feel it most when I turn my head.

 

Congratulations in advance for finishing rads tomorrrow. Hope it goes OK - I turmed up this morning for number 4 only to be told the system was down and they would have to add an extra one onto the end. Good job I hadn't already set up a celebration for the end!

 

Regarding hair, I'm using Plantur 38 caffeine shampoo and my hair is growing at a fantastic rate Woman Happy

 

Take care.

 

Sue O

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Re: September 2016 starters

Hi Ladies,
 
it's good to hear all your updates, and pleased that most of us are finally at the end of our hospital tretament.  It's been a long 9 months. I finish my rads on Tuesday Woman Very Happy
 
So far no side effects, except for the usual redding of the skin, but other than that all Ok.  I have had a nagging pain in my shoulder joint on the side I had my mx and never had pain there before and 3 weeks in it is still there and now quite painful.  Having to my your arms in the strurips everyday hasn't help so I am hoping that the pain will settle down, of course your mind goes in to over drive wondering if the pain is something else going on!
 
Like Auntieanna, I am surprised how quickly my hair is coming back through, although I think the dark grey and white hair is a very popular colourWoman Wink  Hopefully in about 3 months I will be able to colour it again.
 
I was talking to a lady at one of my apts and surprised how much hair growth she had and she said that she had been using  http://www.viviscal.co.uk/viviscal-gorgeous-growth-densifying-elixir  so I bought some at Holland & Barrett and also bought the shampoo as it has get one buy one and get one half price Woman Happy  I am using twice a day to speed up the process Woman Very Happy She also had quite long eyelashes and she said that she had also been putting it on her eyelashes. 
 
I wish you all the very best going forward.  My friend who has been so supportive throughout my chemo and my rad tretament has treated me to see "Beautful'" The Carole King story http://www.lovetheatre.com/tickets/3990/Beautiful-The-Carole-King-Musical?nst=0&utm_source=bing&utm_... in April and then I am going away with a friend over the Easter break to Majorica to hopefully put some colour back in my checks"
 
Wishing one and all a happy rest of the year and hope all goes well with you.  If anyone still wishes to meet up around September time, I happy to organise this, so just let me know.
 
Take Care
 
Lisa x  
 
 

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Re: September 2016 starters

It is wonderful to see so many people reaching the end of their treatment, one less thing to worry about!! My radiotherapy finished on 28th Feb and apart from reddened and itchy skin I don't seem to have suffered too many SEs from it. I am sure the tiredness has played it's part too but working on placement helps me not to notice it too much. I have had a "study week" this week, but I buckled down and made myself work hard for a couple of days so that I could finish everything and have most of the week to rest. The nausea and occasional vomiting from chemo are still lingering, but I was wondering if the RT was preventing that from clearing up as quickly as it might have done? At least it isn't permanent nausea any more, so much easier to deal with mentally.

 

Aine, I agree about people thinking that once the treatment is over people expect you to bounce back overnight. The only ones who don't are those who have had family members go through cancer treatment, and a couple of my uni tutors who used to be cancer nurses. Having said that it is nice to be told that you are looking so much brighter and better than a few weeks ago. Definitely ego boosting! I do like your sign idea, and I do hope that at least some of your children do remember you and your attitude once they have grown up and left school. I find that my attitude has changed that way too. Life is too unpredictable to not grab opportunities when you are presented with them. I find it has even improved my nursing skills and attitude. Yes, I am going to make mistakes but whilst a student I am shielded from the worst to a degree, so I need to grab life with both hands and just go for it!

 

SeeSee, it is a wonderful feeling knowing you have completed treatment but still be gentle with yourself. I was told after my final RT that sometimes the SEs can get a little worse in the following 2-3 weeks before they get better. Obviously that isn't the same for everybody but they told me to be prepared for that. That is why they leave a follow up for 6 weeks. I agree with Aine about exercise, although at the moment I don't do a vast amount when I'm not at work but I make up for it spending a 9 hour shift on my feet. I must do at least 20,000 steps a day then!!!!

 

Rosie, I am sorry that you have had to put up with such a lot during your time on chemo. It must have made a difficult time a hundred times worse. You are such a wonderfully strong person to have come out the other side fighting, as you have done.

 

Dawn, I am sorry that your return to work has been so botched. I hope that it is all sorted by the time you come off holiday and that you enjoy the extra time off. I completely understand you wanting "normal" back as soon as possible, I am the same, but sometimes these hiccups work out for the best. I used my extra time off as a period of reflection and picking up some of the dropped threads from my non-working life before plunging into work again.

 

Onwards and upwards, ladies, we have come this far, we can do it!! I am enjoying having eyebrows again - they grew back quite quickly and it was a lovely feeling going to have them threaded once more. In fact I think they need doing again! My hair is also growing back well - I look rather like Sinead O'Connor at the moment. I used to be strawberry blonde but it is coming through a mixture of dark and white. Maybe I'll end up looking like Cruella De Vil??? Sadly the leg hair is also growing. I could have enjoyed never having to shave my legs ever again but it appears not.

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Re: September 2016 starters

Hi ladies!

It is great to hear an update from you all...

Rosie Ro - I am so sorry to hear your family problems.  You really have had a terrible time over the past 9 months.  I don't know how I would have coped with all of that on top of having chemo.  You must be so strong mentally to have come through it all and be positive about the future.  You are right of course to aim to make the most of the situation.  My motto is carpe diem and I got my daughter to paint me a sign with that on it.  I put it up above the kitchen sink and look at it every day.  I also got my pupils to make me one and have it up in my classroom to remind them all of the need to make the most of every day of their lives.  When they are older I hope they will remember me and the sign!

 

See See - congratulations on completing treatment.  What a milestone in your life.  I was so delighted when I finished chemo although it took quite a while to adjust to not having that routine dominating my whole life.  You will feel a bit better every day from now on.  I still have SEs but I can hardly believe how good I feel now 5 weeks post chemo.  Dont underestimate how the fatigue will still hit you hard sometimes and get plenty of exercise.  I think that forcing myself to exercise every day has helped speed up the recovery.  Also I am a bit annoyed sometimes that the family just think its all over and we need never mention it again.  It will still be in your everyday thoughts and its taking me a long while to try to accept that I am no longer a sick person!  Im hoping to get evened up too!  Im hoping to get a tattoo as well.  I wish that part was over.  Im still waiting for my next appt to talk about it.

 

Dawn - thats a bummer about returning to work.  Maybe you should try to enjoy the rest of your time off - it will be over very soon!  I have decided not to return to school for another few months but Im thinking about it a lot now and even went to a course this week!  I met a few people I know and nobody seemed to notice the wig.  Im very self conscious about it although it does look ok.  I didnt like sitting in front of people in case they noticed.  It also reminded me of my huge workload and thats a bit scary.  You have to be fighting fit before returning to teaching,  Im definately nowhere ready to cope with that.  So just a word of caution - make sure you are ready for it!!

 

Even though I didnt do radiotherapy I feel for all you ladies who did.  I hope you are all dealing with it and gettin near the end of treatment without too much discomfort.  Its hard to believe that for most of us treatment is nearly over.   I have found this to be very therapeutic and have really enjoyed reading all your posts.

A x

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Re: September 2016 starters

RosieRo - thank you. Congratulations to you and See See on the completion of your radiotherapy, and sorry for rant yesterday!

 

You must be so relieved the active treatment is now over, even though you are still suffering the side effects of the chemotherapy and radiotherapy, and still have other treatment ongoing. I hope the side effects will soon improve and that within a few weeks you will start to feel more normal again.

 

It really has been a journey for both of you, particularly for you Rosie, with your husband and daughter's problems. You both deserve a rest and lots of TLC (predictive text strikes again - I just mistyped 'rest' and it put in 'rat,' lol. You certainly don't deserve that!). BC diagnosis and treatment has been such a dominant thing in my life these last 8 months, I sometimes forget that life goes on around me and other people have problems of their own. I hope you have plenty of support from other family and friends as well as from all the ladies on here. See See - I wish you well with your return to work in April - unfortunately my announcement of return to work was premature! You hair and nails will probably grow back quicker than you think, once the drugs have worked their way out of your system. 

 

I know I hould be grateful that I have had a relatively easy time since the chemotherapy finished, and that apart from my skin problems I have recovered well. I expect the radiotherapy will soon put a stop to that though! The OH doctor I saw this morning certainly thought so, and wouldn't sign me off as fit to go back to work until the radiotherapy is finished. However, she did agree that I would be fit to go back in a week's time (phased return) if the radiotherapy doesn't go ahead for any reason. The OH report she has sent to my manager covers both scenarios.

 

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Re: September 2016 starters

Oh Dawn that's so frustrating when you gear yourself up for stating back with your new/old life and a first hurdle is immediately thrown in front of you. As if all the massive hurdles you've already leapt across weren't enough! I hope they've sorted it out for you today. Have a great holiday. Xx

See see - congratulations on completing the radiotherapy treatment! I finished mine on 22nd Feb and the side effects, red sensitive skin and sharp stabs have become worse this last week but are not a problem as I was advised this would be the case for another couple of weeks anyway. Then I hope to be able to wear a bra again and not these flimsy sports tops.

It's been one hell of a nine months for all of us and I can only imagine what others have been dealing with along with cancer. Personally I found the other events in my life sometimes more difficult to deal with, a daughter with new baby and broken heart as her husband decided he didn't love her any more and my own husband already dealing with early onset of Parkinson's diagnosed with deteriorating lower spine. It was always difficult to tell him I was feeling bad as he always has pain so I told close friends instead. I went to all my treatments on my own as I preferred it that way and I'm stubbornly independent! Now we're about to move house and leave London - a nice distraction to have the house on the market during chemo! And I'm looking forward to the new project. Best of luck to everyone going forward - we will all have to live faster and enjoy what we have. Xx
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Re: September 2016 starters

Well, I should have gone back to work today, but I haven't been able to because of an administrative c**k up. I had been told by my manager that I could return on 1 March subject to getting confirmation in writing from a doctor that I was well enough. I got a 'fit' note from my GP last week and rang him to confirm I'd got it, only to be told that it has to be agreed with an Occupational Health doctor! I have now got an appointment to see one tomorrow morning, which was the earliest I could get. I'm really annoyed about this because I emailed my manager weeks ago suggesting a return date of 21 February, and asked him to confirm the requirements, and heard nothing for ages. I had to chase it last week, when it was agreed I could return today. I don't know when I will be returning to work now, except that it can't be next week because I'm on holiday!
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Re: September 2016 starters

Hi. Ladies,

I completed my radiotherapy today so that's my hospital based treatment pretty much done. YIPPEE 😀🎉.

My nails are still falling off; my fingers and feet are numb and I have little head hair, (though I do have some lower eyelash 😀and leg hair 😏 again); my breast is red and sore and my right arm is swollen from a blood clot ..... but apart from that ..... and being tired ..... I'm beginning to feel well / human again.

I was diagnosed on 3rd May; had a mastectomy and reconstruction for a 115mm lobular, oestrogen receptive tumour on 30th June followed by aspiration and then further surgery to remedy infections; chemo from 25th August to 4th January and radiotherapy from 25th January till today.

I just have 5 zoledronate injections left at 6 monthly intervals and hormone therapy (anastrozole) for 5 years. Oh and daily clexane injections till my PICC line induced blood clot dissolves. The plastic surgeon also has designs on my body for further minor surgery at the end of the year to 'even me up,' give me a nipple and tidy up my abdominal scar, but I think I'll just have a tattoo 😧.

They say my prognosis is over 80% that the cancer won't come back 😀.

I really can't fault any of the fantastic treatment I have received, nor the positive and caring attitude of the staff.

I'm planning to return to work on 3rd April on a half time basis for the first few weeks till my concentration and stamina have built up.

Thank you ever so much for your support. I certainly wouldn't have got through chemo without your support.

Hope others are doing as well xx

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Re: September 2016 starters

Enjoy the hol. I will get to Stonehenge some day.
I knew you were younger!!!!!
A
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Re: September 2016 starters

Sorry Aine, misunderstood! We are going to stay in a cottage in Somerset, near the boundary with Wiltshire, which is within easy reach of lots of places of interest. I've booked tickets for Stonehenge on the Tuesday (so that's the day it will tip down with rain!) because we've not had chance to see the new visitor centre yet. P.S. I'm 53 not 63 - 63 is my DOB not my age! I am Old Dawn, not The New Dawn, which is a pale pink climbing rose (https://www.rhs.org.uk/Plants/96212/Rosa-New-Dawn-(Cl)/Details). We used to have one of these growing against the back wall of the house where we used to live. It grew very well, and was enormous by the time we left, so we got another one when we moved to our present house. Unfortunately it didn't thrive where we put it (was badly affected by mildew and black spot), so we got rid of it. But the Old Dawn isn't doing too badly at the moment.

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Re: September 2016 starters

Dawn .... I meant where are you going on holiday haha!!!!

Your job sound verrrry serious....I thought you were 63.... you call yourself old after all!!!

AWoman Tongue

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Re: September 2016 starters

Hi Aine - I'm going back to Walsall  Council's planning section. After six months off work I have half forgotten the stress of trying to respond to this week's policy change from the government or consultation on proposed changes, comment on planning applications at short notice, and pull together the ridiculous amount of evidence needed to justify the emerging local plan policies (Brexit might mean Brexit, but in the meantime all relevant European Directives still apply!). But I will soon be reminded...

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Re: September 2016 starters

Ha Ha I had to hold onto my wig too!!!

Lucky you .....firstly going on holiday and secondly going back to work!!!  Where are you going?

I am a teacher so cant go back to work until I am fit to stand all day and wallop brats all dayWoman LOL

I really miss the social interaction, the gossip and the laughs.  My kids are soo funny.  I miss their wee faces.  Obviously I have forgotten the stress, the admin and the working till 11pm most nights!!

 

I went back to my Zumba class today (after 9 months!) and omg I really felt like the old me after it - so I am more convinced than ever that exercise is the key to recovery ladies....yes it is!!!!

 

Yours in fitness

Aine

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Re: September 2016 starters

I would if I had the time - I don't know where it goes. Seems everyone else on this thread is busy as well, with radiotherapy, work, etc. I will have even less time when I go back to work next week. I start back on 1 March, and will only be doing 2 days a week (pro rata) at first. I won't start radiotherapy until 13 March, and as I am having 23 rads in total it won't be finished until just before Easter. We have therefore booked a weeks' holiday before radiotherapy starts (the week after I go back to work!), as otherwise we won't get a chance until May, because of hospital appointments. Had radiotherapy planning meeting today. Storm Doris has been pretty bad round here - had to hang onto the wig!

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Re: September 2016 starters

Start yoga! you would love it!
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Re: September 2016 starters

Yes the treatment just keeps on giving doesnt it!

Thats going to be a tough few weeks for you - just like being at work all day with all the travelling back and forth.

Just tell yourself its like doing a days work - and try to fit in a nice lunch or a coffee stop or something pleasant to look forward to.

 

I tried to meet a friend (from the yoga class at the hospital) after my Herceptin injection last Friday.  She had her rads at the same time next door but she was gone by the time I got out - so you might be in and out very quickly.

 

Did I say they provide overnight accommodation at our hospital for radiotherapy patients.  Its like student halls and they all go out for dinner and have great crack.  Sound great.  Maybe your hospital provides something similar - or free transport there and back - you should check it out.  I think I mentioned this before?

 

 

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Re: September 2016 starters

Thanks Aine!

 

I have been thinking of joining local yoga or Tai Chi classes, but haven't got round to it yet (excuses!).

 

On Wednesday morning I went to see the oncologist at the hospital where I will be having the radiotherapy (a different oncologist to the one I usually see). It took ages to get there because the traffic was awful - not looking forward to that journey every day.

 

I'm having to do the arm exercises more often from now on, because the oncologist wants me to increase them to 4 or 5 times a day, to make sure there is sufficient flexibility in the arm to keep it above my head when I am on the CT scanner and radiotherapy machine. I have also been advised to carry on doing them for up to 6 weeks after the radiotherapy finishes.

 

The oncologist also said he was happy for me to defer taking the hormone tablets until after the radiotherapy, and to discuss the likely prognosis with/ without them after the radiotherapy is finished. I'm glad about that because it's one less thing to cope with.

 

The radiotherapy is going to be a longer ordeal than expected, as there will be 23 of them not 20 (there will be 8 'boosters' to the tumour area at lower doses). The whole course will therefore last four and a half weeks, and will be a lot later than I'd been told before. Yesterday the hospital telephoned with the dates for the planning meeting (not the sort of planning meeting I'm used to, lol!), when I will have the CT scan and tattoos (23 February), the briefing meeting before the radiotherapy starts (3 March), and the provisional start date for the radiotherapy itself (13 March). So it won't be finished until just before Easter. 

 

We are making progress I suppose, but sometimes the treatment seems to go on forever.

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Re: September 2016 starters

Well done Dawn!

Keep up the exercising - it will be doing you a lot of good.  It helps with your mental and physical health and you must be seeing an improvement if you are exercising twice a day. 

I really feel the benefits of it now and over the past week I feel I am eventually starting to get some strength back.  You should try yoga and pilates as well.  Im going to classes in the Macmillan centre at my hospital and they are so enjoyable.  Also I walk the dog.  I used to be an aerobics teacher so I know how good I felt when I was fit in another life.

Im not on hormone tablets so cant say anything about that.  But listen to the advice from your medical team.  Theyve been through it all so many times they must be giving you the best help.

 

On advice from Blueash I am back on the clarityn tablets once per day to see if it helps with the itching.

A

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Re: September 2016 starters

I agree it is frustrating not knowing what is causing these effects, but it may be too early to tell for sure that the Herceptin is responsible or whether it is the T or the hormone tablets. I haven't started taking them, but if you have, it is another possible cause of your problems if you are on AIs. I was told the main SE of Herceptin is flu like symptoms, which could include aches and pains as well as shivering, runny nose etc, so it could be either. I have had a runny nose now and again, but some of this could be because of the cold weather lately. It's easy to blame the drugs for every symptom you get but it may not always be them. I also have a few aches and pains from time to time, but if I'm honest, it is no worse than what I had before the treatment started. I am not getting any younger and I am also not very fit! I don't want it to get any worse though, or to get any more unpleasant SEs, which is why I am hesitating about taking the hormone tablets. My fitness has not been helped by lack of exercise at the end of the chemotherapy and immediately afterwards, when the fatigue was at its worst. I have now started exercising daily like you (at home not at a gym). I do about 15 minutes gentle aerobics twice a day, plus the post-surgery arm exercises three times a day. I only started the aerobics the week before the operation, so I've been doing it for about a month now. This is too early to expect any significant benefits, but I think it has helped with the fatigue and with the recovery from the surgery.

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Re: September 2016 starters

I see itchy is the word of the week  haha!!!

 

Went to hospital doc for a review of herceptin today.  Wont reduce my dose to  80%.  Says it would defeat the point of taking it.  Not much sympathy for my aching muscles complaining.  Says it could be from the chemo (Last one 2/1/17).  I dont believe this but will just give in and get the 5th injection on Friday and see how it goes.  Hopefully it might be a bit less than this dose.

I went to the gym this evening (took it very easy) and my boobs were Sooo itchy!!!  Couldnt scratch them without making an eejit of myself!!

Ive decided to exercise every day in spite of the aching legs - dont think it will make any difference.

 

Be good to yourselves September Ladies - just think how far we have come and how we are improving bit by bit.  Now when Im shopping and I see something I like - I buy it!  Bought myself a fancy pumice stone yesterday!

A

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Re: September 2016 starters

Same here, itchy head, occasional diarrhoea and manky fingernails despite the care and attention I have given them (though not as bad as See See, they're a bit discoloured and dry but still there)!😣 It must be the T still in our system (the gift that keeps on giving, lol). My face isn't as dry and sensitive as it was, and I've stopped taking the antihistamines because I don't think they were helping much. Since yesterday I have been limiting what I use on my face to Simple soap and a very small amount of E45 as moisturiser, and so far it has been OK, but if it flares up again I will have to go to the doctors. I still don't know whether it is caused by T or Herceptin, and will see what happens after the next Herceptin injection in a week's time. In the meantime, the Letrozole are staying in the cupboard! I have an appointment with a consultant at another hospital this Wednesday about radiotherapy, and will hopefully get confirmation of the dates and times for this. BCN suggested talking to the other consultant about the benefits of hormone therapy for me, and whether it is best to start taking it before or after radiotherapy, so I'll let you know what he says about that.

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Re: September 2016 starters

Hello all,
Another itchy head here because my hair is also growing back. The terrible cradle cap is clearing up thanks to almond oil and a flannel and my side effects are diminishing. I still have issues with mucus but not as bad as it was, and random nausea rears its ugly head now and again - mainly when I'm very tired.

I am feeling so much better and crossing everything that the RT fatigue doesn't hit me as everybody tells me it does. I didn't realise how ill I felt during chemo until I started feeling better!

I still haven't started on Tamoxifen, I am reluctant to add in another drug during RT and don't really want to be on it at all! I really must bite the bullet and get my GP to write the script but it's the thought of the SEs that are putting me off. Does anybody else feel like this?
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Re: September 2016 starters

Hi all, 

 

My head is itchy as my hair is very slowly starting to come back. Other than that my arms still get numb and I can't feel my finger tips or toes. I've had four nails come off but no more look ready to drop. I'm achy, especially my legs, probably because of the anastrozole and the diarrhoea is bad so I'm getting stool samples examined and a blood test in case it's my Crohns flaring up. I suspect it's just SE from the meds. Still having daily injections for the blood clot as my arm is still swollen. 

 

HOWEVER it's still better than chemo. Twelve more rads to go. There was a round of applause on Friday when someone rang the bell for the end of treatment. Not sure yet whether I want to ring it as although it will be the end of hospital based treatment, I'll still be taking drugs and having injections.

 

Hugs to you all

 

Cathy

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Re: September 2016 starters

Hi I hope everyone is recovering well and being good to yourselves!

 

I am having a lot if itchiness lately I think as a SE of Herceptin.  Itchy armpits! Hope its not bubonic plague.

And random itchiness all over. 

Is anyone else?

 

And of course achy weary legs still - 2 weeks after injection.

Im going to see the hospital doc tomorrow and ask for it to go down to 80%.

I cant stick this for a year.

 

Just for your info - my hands have gone back to normal.  Nails are deteriorating still. Think some will break off soon.  Other SEs have more or less gone now.  I NEVER thought I would be able to say I have kicked the nausea but I have.  Only rare flare ups when Im driving for some reason. 

Anyone else feel this?

 

Hope all you ladies on RT are getting through it with less discomfort than chemo.  We have been through so much.

A

 

 

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Re: September 2016 starters

Thanks RosieRo and SeeSee. Sorry to hear you are both having some discomfort with your radiotherapy. I've got to have 20 of them (oncologist didn't say why but I suspect it is because the tumour was close to the chest wall) and I'm not looking forward to it. I don't think I deserve any congratulations at the moment because I haven't returned to work yet! I don't think I have a lot of stamina, but I am trying to get a bit fitter by eating less and doing moderate exercises at home, including the arm exercises I have to do following surgery. I bought three post-surgery bras before the operation and have been wearing these and a couple of my existing padded T shirt bras most of the time, because they are comfortable. Before I bought them I got myself measured in M&S to make sure I had the correct size. As well as these, I got a couple of zip front sports bras which I have been wearing for hospital appointments, and a couple of padded crop tops (from Sainsbury's) for wearing in bed. I never did get any button up pyjama tops, but I haven't needed them, because I have been able to wear some of my existing pyjamas which have loose, baggy tops, and some old strappy cotton nighties which I can step into and pull up. I don't think there's much difference in size at the moment, but once the swelling has gone and the radiotherapy has shrunk the BC one, it will probably be smaller than the normal one, so some padding may be needed to even things up. So far the antihistamines seem to be helping with the skin problems, but it's still early days. At the moment lack of motivation is my biggest problem, having been stuck indoors a lot of the time, so I am hoping that returning to work will give me an incentive to get out and about again. Hope everyone is feeling better day by day now that the chemo is behind us.

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Re: September 2016 starters

Hi everyone,

I haven't posted much as things have been pretty uneventful and I don't feel I've achieved much. I'm not thinking of returning to work till April (last rads is 28th Feb and then I hope to use my outstanding leave).

 

I've had 8 rads with 17 left. The hospital I attend got 'outstanding' this week.  No particular side effects I've noticed yet but I did ask for one of the male students not to be in the room in future as he makes me feel uncomfortable. I think it's just that he's concentrating on the treatment so much he forgets there's a person on the table. They were very good about it.

 

Saw the radiologist midweek and that made me feel better, as though a clinician was still in charge of my trematment. I've been referred for physio on my non-treatment arm as I still have a lot of swelling from the blood clot caused by my first PICC line and was only managing the exercises with the treated arm.

 

Also found another cancer support centre this week where they are doing Pilates for people who've had breast surgery. There were people under 60 there which was reassuring. The centre where I had my counselling had generally older people and just did craft and knitting. There's rambling, aqua and free therapies at this one which is between the hospital and home so I may get more involved.

 

Hope everyone else is doing ok

 

Hugs Cathy x

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Re: September 2016 starters

Hello all - well done to Aine, Auntienanna and Dawn for their various achievements of working amazing hours (respect) wig wearing and surgery survival. You are all so impressive. I'm pleased if I can walk my previously normal fast speed for longer than 10 mins. How are those of you having radiotherapy getting on? I've had 3 so far and it hasn't been as easy peasy as I'd hoped. Despite having full range of movement in both arms I've found the position very uncomfortable. The second time wasn't good as I had painful neck and shoulder and got a tiny tremor in my arms which they mentioned but apparently was "within tolerance parameters". I've now got extra pads for my neck and shoulder to take to the next session and I'll take pain killers too. Doesn't it take ages too by the time you travel, wait, have treatment and get home again! On the plus side it will all be over soon. I'm so looking forward to having eyebrows and eyelashes as I look like an alien with no features. Not that worried about the hair on my head as it's beginning to show signs of movement and I love my wig which I have worn 14 hours a day every day! I did get some really nice soft bra type tops via Amazon which give some support as I'm not very large but didn't fancy going bra less as it emphasises the size difference too much. Good luck to everyone. Rosie xx
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Re: September 2016 starters

Still here as well - hello everyone! Well done Aine for overcoming your fears about wearing the wig in public! I don't know how you are managing 9 hour shifts so soon after chemo Auntienanna, you are putting me to shame. I've got stubble on my head now rather than the baby owl fluff I had at first. It is growing faster now but still thin and patchy, and I've also lost nearly all my eyelashes! I am planning to return to work in a couple of weeks' time though it will be staged return, probably 2 days a week at first. The concerns about infection no longer apply, the wound is healing well and no further surgery is required, and I am also feeling a lot better, so I can't justify being off sick any longer. I am waiting for my manager to fix a date for a meeting to discuss arrangements for return and agree a start date. Last week I had confirmation that the biopsy results from the operation were all clear, so no need for a second operation, which is a relief. The wound has more-or-less healed now, although there is some swelling due to build up of fluid. Surgeon and nurse had a look at it yesterday, confirmed it is OK and there is no infection. Nurse drew off some of the fluid as it was a bit uncomfortable and was told the rest will go away on its own eventually. I still have skin problems which have persisted since the last chemo cycle. It seems to be some sort of allergic reaction. From time to time my face goes all red and hypersensitive and a few blister-like spots appear on my nose and cheeks, and more recently they have also appeared on my chest and arms. It is sometimes accompanied by menopausal symptoms (hot flushes). Has anyone else had anything similar? These symptoms flare up at random, usually at least once a day, and tend to last about an hour or so before they subside. Sometimes the redness and blistering is triggered by applying moisturiser or cleanser, but not always. I thought the problems might be caused by Herceptin. I've had two injections so far, the first one on 9 January, and the second on 30 January following echocardiogram confirming my heart is OK. I've therefore been on some of the Targeted Therapy threads to see if other ladies having Herceptin have reported anything similar. It seems others have had skin problems, including some much worse than mine. Vintage started her Herceptin only injections about the same time as me and has also had a facial rash. Her oncologist thinks it is caused by the lingering effects of the T chemotherapy and not the Herceptin, and so does mine. She has been given some antihistamines and senistive skin moisturisers by her GP. I have been advised by BCN to try over the counter antihistamines in the first instance (e.g. Loratadine or Cetirizine) so I am trying Loratadine to see if it helps. I have also been advised to use perfume free soap so I have got some Simple soap. Hope you and everyone else on this thread are recovering well. XXX

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Re: September 2016 starters

You must be exhausted after 9 hours on your feet!  You are doing really well to be able to get back so quickly.

I love the baby owl fluff description!  I have that too!!

Im dying for my hair to grow but it is sooo slow.  At least I have got used to my wig and Im told it looks just like my own hair so that has given me confidence.

Its hard to shake off the SEs - but I see an improvement every day.

A

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Re: September 2016 starters

I'm here! Funnily enough I was going to post here once I was in my pjs.

I've just completed day 2 of rads, it's okay but I sense I'm going to be fed up of it by the end lol. My breast feels a little achy tonight but it looks fine. I'm putting Aveeno on it twice a day until they tell me otherwise. I suspect they would be cross at my not taking on enough fluids but I'm back on placement and though I try to nip into the staff room for quick sips I'm often too busy to do it as often as I like.

I'm only doing 9 hour shifts, probably for the rest of the academic year but I'm hoping I won't be too fatigued so I can start building up to 12 hrs before then. I'm on a busy surgical ward so I don't have chance to feel tired until I stop but when I'm on my way home I definitely feel it! I am loving it though, everybody is wonderfully supportive and it feels great to be back into the swing of things again.

If only the lingering effects of chemo would do one....nausea and excess mucus I'm looking at you.

Oh and I have eyebrow stubble and baby owl fluff 😀
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Re: September 2016 starters

Hellllooooooo!!!!!!

Where is everyone from the September thread?????Man Happy

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Re: September 2016 starters

Rosie Ro and everyone

 

I just found out that there are free massage/reflexology/reiki, etc at our local Macmillan centre.

You should all ask about them at your next appt

A

Member

Re: September 2016 starters

Hi Dawn! 

And for information of others in the same boat!!.....

I bravely wore my wig all day yesterday - my yoga class in the Maccmillan centre which was easy as among friends - and called into the local shop to get milk.  Thats a big step forward for me. 

So I contacted some friends and said I was ready to meet for dinner - havent seen them since last June!!  Havent been out after dark since September!

I paid £180 for the wig and £40 for the shampoo etc package that goes with it.

The wig is very lightweight and feels odd after months wearing bobble hats. 

I am entitled to a second free wig 6 months after the first one (which I hated) so thats April.

My wig has a parting where you can see your scalp a bit and the front has an uneven edge so it looks very real.

 

My sense of taste has come back after months of eating cardboard...BUT I have eaten chocolate non-stop since.  Just cleared all of it out of the house so no more....my tongue and gums had been numb. 

 

Nose and eyes streaming badly when out in the cold.  Does anyone know how long this lasts please?  It only started 2 weeks ago.  (Last chemo Jan 2nd)

 

Lastly....is anyone else thinking about getting the other breast 'lifted' to match the new one???

I dont know anything about this yet and havent got my review appt yet.

 

I am getting my 4th Herceptin injection tomorrow.  I have had no SE's so far though I couldnt tell during chemo.  I am hoping I will be ok.  The nurses said I should be ok.

 

Be good to yourselves.  I am starting to.

A

 

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Re: September 2016 starters

Aine - forgot to say, glad you are happy with your wig now, and that you are also starting to see signs of hair growth! With any luck you will have reasonable hair cover by summer and will be able to get rid of the wig. My hair is really starting to grow now, but it is still thin and sparse, because some hairs are growing faster than others. Let us know how well the hair growth is progressing.

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Re: September 2016 starters

Hi everyone, hope you are all well post chemotherapy, and thanks for all your support and good wishes following my operation. Sorry for not posting for ages.

 

I am starting to feel a bit better now, though it is still early days after the operation, so I am trying not to overdo things. I haven't taken advantage of the free complementary therapies offered by my hospital, because they're at at a place which isn't that easy for me to get to on public transport from where I live. But when I feel better I am thinking of going to yoga or Tai Chi classes at the local community centre, which is within walking distance.

 

Proposed meet up sounds great, although I'm not sure I would be up to it at the moment. There's also the uncertainty about when my radiotherapy will happen. It might not be easy to meet up in the middle of it. Birmingham is very convenient for me (it's just a bus ride away from home), but I'm aware it is much less so for most of you, so I am open to alternative suggestions.

 

Aine - yes I've also got streaming nose and eyes, though not all the time. It may be because I've lost nearly all my eyelashes and nasal hair, rather than a SE as such. I can't do eyeliner on the top eyebrow without making a mess (I keep blinking), so at least I haven't got to deal with runny makeup. My face also goes dry and sensitive from time to time, sometimes just randomly and on other occasions when I apply moisturiser (but not every time, suggesting it is not necessarily an allergic reaction). I also have occasional hot flushes, which can't be down to steroids because I haven't taken any since before Christmas. These things must either be an allergic reaction to something or SEs of Herceptin, which is the only medication I am on now.

 

See See - my nails are dry as well, and have ridges marking each chemo cycle like tree rings. They are also are a bit discoloured despite the Onicolife drops and the oiling (which I've continued post chemo), but I don't think they're going to drop off. They're still growing and I've been clipping them, so I think that eventually the grotty bits will be replaced by new growth.

 

I don't have a start date for my radiotherapy yet, because it depends on whether a second operation is needed. I should find out about this next week. If not, I would expect to start towards the end of February provided the other hospital can fit me in, as the oncologist said it should be about 4 weeks after the operation. So I'll be a bit behind the rest of you.

 

Re: hormone therapy, I totally agree that they can't wait to start you on it. My oncologist wanted to start me on AIs (don't know which one) before Christmas, but I said no, I want a break from medication, so it was left there. He will probably be itching to start me on it again when I next see him on Monday, but if so, he is in for further disappointment! I had only just started to recover from the chemotherapy when I started the 3-weekly Herceptin only injections and had the operation, and I still have the radiotherapy to come. I want more time to recover from what I've already had and am about to have - and I also want to have a few more Herceptin injections to establish whether the occasional hot flushes and red/ sensitive face are SEs of that - before starting on anything new.

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Re: September 2016 starters

Hi Aine

 

I have had a guess that some one would be based in NI, what a shame you would not be able to join us if the meet up goes ahead.  Yes you right about physicall hugs rather than the virual ones - but still nice that someone cares Woman Very Happy

 

We are all getting there slowly.

 

I think when my last rad due on the 7th March I can finally feel that the worst is definately over and we can all move forward with our lives without being restricted by hopsital visits.

 

Let's hopw it's a good Spring and Sumer and that we can all enjoy it which we could not do last year.

 

Take Care xx  

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Re: September 2016 starters

Hi Rosie,
Yes I had 6 sessions. I found reflexology was great to start with as I had few bits of my body that could be touched after surgery. Then I graduated to Indian head massage when my hair fell out and then massage when I was comfortable enuf to lie on my tummy. They had a new massage bed which meant you didn't put pressure on your chest area which really helped cos I'd had my reconstruction and want allowed to lie on my front.
Enjoy. There's little else that's nice about the treatment so it's good to new spoiled x
Member

Re: September 2016 starters

Hi - yes - streaming eyes and nose so need constant supply of tissues and spare eyeliner pencil for emergency repairs to eyebrows and eyes. My finger ends are so dry and but also strangely smooth. I think I could rob a bank and not leave any fingerprints!
I've just had the first of four complimentary treatments - a lovely massage - which I just found out I was entitled to via the cancer centre in my hospital. Pity I didn't know about it before as I can't have another massage until 6 weeks after finishing radiotherapy. I will try Reiki instead during treatment Did anyone else know about this or I am just lucky living in London? Rosie x
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Re: September 2016 starters

Glad it is a normal SE then!

 

Today is the first day of the rest of my life ladies!!!!

This is my first day out of chemo!

I am thrilled!

Dont feel over it yet of course but I am going to say positive things to myself all day!!

A

 

Member

Re: September 2016 starters

Hi Aine, 

Yes I've had a streaming nose for a while now. I have to keep remembering to take hankies out with me when I walk the dog. Since  my chemo ended my eyes have started to run too!

Member

Re: September 2016 starters

Hi Aine, 

Yes I've had a streaming nose for a while now. I have to keep remembering to take hankies out with me when I walk the dog. Since  my chemo ended my eyes have started to run too 😟

Member

Re: September 2016 starters

Hi Lisad

Thats a great idea to meet up - however I live in Northern Ireland so unfortunately will not be able to join you!

It will do you all good to have a chance to meet like minded ladies and give each other a REAL hug instead of all those virtual ones!

 

I am very aware of my fingernails too and am steeling myself for them falling off - some feel a bit strange.

 

Has anyone else got streaming eyes and dripping nose when they are out in the cold air?  Im finding it very uncomfortable.

I wonder how long these SE's last after chemo is finished?

 

I dont have to do radiotherapy but I am hoping you all have fewer side effects and get through it with fewer problems than chemo presented.

 

A

 

 

Member

Re: September 2016 starters

Hi Rosie

 

Like you I was high risk on the Predict testing.  Is there any reason why we have to start taking Letrozole straight away?  If we delayed it for a few more months would it matter?? I have picked them up but have not started taking them yet maybe start when I start my rad treatment middle of February.

 

Ladies - meeting up - I can get a train to Birmingham if turns out to be the most central place for a meet up later in the year.

 

X