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September 2016 starters

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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

Member

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

Member

Re: September 2016 starters

Enjoy the hol. I will get to Stonehenge some day.
I knew you were younger!!!!!
A
Member

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.

Member

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