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August 2019 Chemo Starters

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Re: August 2019 Chemo Starters

Hi Hollyleaf

 

I know it's so much easier said than done, but PLEASE try not to worry about the anaesthetic.  I was really concerned but, as you say, when you arrive and realise you're in a long conveyor belt of people queued up for surgery it most definitely 'normalises' it.  I did have rather a long wait to go in, both times, so by the time I was called to walk down to the theatre I was just relieved it was going to happen and couldn't wait to go.  As the day went on, my biggest worry was that they would run out of time and I wouldn't be able to have it done!

 

The anaesthetists are, as Wolvesgirl said, very used to patients being nervous - and the ones I saw made the experience almost pleasant with their jokes and messing around.  For example, the one who gave me the injection asked "so who's the best looking man in the room?" and demanded an answer... even though he was the ONLY man in the room.  Then, in the recovery room afterwards, I got accused (by the nurses) of flirting with him because I said he was the best looking man in there (again, the ONLY one!).  It's all in a day's work to them, and you quickly feel you're in safe hands.  And just think, once it's done, it's a further amazing step to getting better and seeing the end of all the hospital trips.  I was lucky in that I didn't have to stay over night, but I came home and went to bed more or less straight away - sleeping was not a problem in the next couple of days!  Good luck, and I'm sure you'll be absolutely fine.  As Wolvesgirl says, if you can do chemo - and you have - next Wednesday will be a breeze.  We'll all be thinking of you I'm sure.  (By the way, I think it's perfectly normal to have 'irrational' fear - but that's exactly what it is!).  Good luck, Julie x

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Re: August 2019 Chemo Starters

Dear Wolvesgirl,

 

Thank you so much for your reply. They do want me to spend the night in hospital, I think this is because of the drainage bag, but hopefully I will be out the morning after. I just have this fairly irrational fear of dying under the anaesthetic! I know it’s mad, they do these operations every day and the pre op did not show any heightened risks, so I have no idea why I am so worried. It’s very irrational! The good thing is that my family are coming too see me this weekend and so they will be able to look after the children whilst my husband and I are in hospital. It’s next Wednesday and I really hope to be able to report back to you as soon as I can.

 

 I am so grateful to be on this forum!

Hugs

Hollyleaf

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Re: August 2019 Chemo Starters

Dear Hollyleaf

 

Please don't think you are a wimp - it is a very common emotion for people even if they have had surgery before, as the idea of it all is an alien concept.  Remember you will be fast asleep and before you know it (literally) you will wake up and it will all be done.  The fact that this is done as day surgery is such a good thing so you can be back at home as soon as you have eaten and drunk and walked out to the loo.   Never does tea and toast taste so lovely!  

 

I had a lumpectomy and then had to go back for the lymph nodes to be removed as they were not expecting to find cancer, so like Julie I had two operations in a few weeks but without the added complication of having had chemo just before - I had surgery first.  I did not find it painful - over the two ops I think I had one lot of paracetamol as the lymph node surgery was a bit sore but that was certainly adequate.  Personally I find that I feel a bit tired two days after the surgery but thats just me.  Arm-wise, I just carried on doing my usual stuff and that made sure I didnt get stiff but it is important to do the exercises.

 

Surgery is much easier than chemo trust me!  Anaesthetics today are very sophisticated and people recover very quickly.  The staff are very used to people being nervous and will be able to explain everything to you as it happens.  Is there something particular that worries you?  What day next week is your surgery?  xxxxx

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Re: August 2019 Chemo Starters

Dear all,

 

 I just had my pre op today and I feel like a wimp, I am so scared for next week’s lumpectomy! I will have a larger scar but under the outline of the breast, so it won’t show too much. This is needed to take some fat from under my arm to fill where the lump was. I am fine with all of this, just afraid of the operation. For those of you who have had it, did you feel the same? Did something helped you on the day? I feel so silly!

 

Any tips/advice would be gratefully received. I am so glad you are all here!

 

Much love,

Hollyleaf

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Re: August 2019 Chemo Starters

Hello again everyone - thank you so much for your messages of support about my two surgeries!

 

The second one knocked me out a bit, but I think that was more the effect of x2 anaesthetics in 2 weeks (and quite soon after final chemo) than anything else.  I'm feeling absolutely fine now - 2 weeks after the second one.  Got my results on Wednesday - ALL the cancer is gone!  Nothing in the nodes or in the good tissue around the lump.  Such a relief!  I go back next Wednesday to see the oncologist to sort out the radiotherapy.  The scar I've been left with after the lumpectomy is almost invisible, as the surgeon cut around the bottom of the nipple in a perfect arc - once it's all healed I don't think I'll see it at all.  He opened the same wound for the second op.  It's still a bit lumpy but thinks it should settle down after radiotherapy.  I think the 'blue boob' (dye they put in to find the lymph nodes) will last for around a year... but it's a very small price to pay for getting well.

 

Excellent news re your lump reduction, Lisaloo.  Sounds like you should be able to have a similar operation to me (but just one, hopefully).  The surgery / healing itself was really easy.  I was certainly nervous about having the operation, but it really was absolutely fine and seemed to heal very quickly.  And, unlike the end of the chemo, made me feel as if this is all nearly over.  I have another 11 Herceptin injections to go at 3-weekly intervals (they've changed me from infusions, which I was having during chemo) and I've been having Zoledronic Acid (bisphosphonate) throughout as well and will continue with that for some time.  No particular side effects from that, although it's quite hard to tell when you're going through the Docetaxel at the same time.  Nothing can be as difficult as that though!

 

Thank you for your reassuring information about radiotherapy, Wolvesgirl.  Definitely sounds do-able, and great to know it doesn't take long (although I'm an hour's drive each way from the hospital, so those 3 weeks will be pretty much written off for other things depending on what times I'm given).  Life is slowly coming back to our house... we're out at a 60th birthday party this evening, and again tomorrow evening with other friends.  I couldn't have imagined doing that only a few weeks ago!  SO nice to start to feel normal again!

 

Best wishes to everyone, and hope you all have great weekends.

Thank you all for continuing to update on here - it's brilliant to see us all getting there in our own different ways.  lots of love, Julie x

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Re: August 2019 Chemo Starters

 

Blackcat!! Sorry it’s you that’s just had your surgery 😂 I blame chemo brain! Thank you to you also for your accounts of surgery and advise. 
It all helps so much to hear from people that are going through it with you.

 

Lisa xxx

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Re: August 2019 Chemo Starters


Morning ladies

 

Hope everyone’s ok. Hollyleaf good news on the reaction to chemo! And Wolvesgirl glad the radiotherapy hasn’t been too bad for you so far and hope that continues to be the case for you. 
I did indeed have my final chemo yesterday! Who hoo!! I don’t know about anyone else but I felt quite emotional. 
looking forward to having 3 to 4 weeks of no treatment before my surgery. Hollyleaf I’ll be right behind you on the surgery journey so I’m sure we can help each other through this part of it. Wolvesgirl you’ve been so helpful with your experience of surgery and really put my mind at ease about it. Iv an appointment with my surgeon on Tuesday so will have more to report back regarding that side of it after that. 

have a lovely weekend everyone.

Lisa xxx

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Re: August 2019 Chemo Starters

Dear Hollyleaf and everyone

 

How are you all on this cold Friday?  Hollyleaf, I am so very pleased that you have had a good response in terms of your lump size and that this means you can have a lumpectomy.  One step further on in this journey and as you say, we are all here beside you.  The pre op nurses will give you lots of information and assurance which you will find helpful I am sure and between us we have all experienced a range of treatments so there is always advice from the patient point of view too.    Lisaloo - by the time you read this you should have had your last chemo - well done!  I bet you thought this day would never come and now here you are.  As with Hollyleaf, next step now..... and last lot of steroids!  Hurrah.  Julie, hope the results from the additional surgery were positive and you can put this challenging period of surgery so soon after chemo behind you.

 

Blackcat and Spottycotty - radiotherapy update as you will both be going through this soon.  Blackcat, I would have made the same decision as you - take everything that is offered is my mantra!  So, I had number 7 today.  So far all good, no side effects, skin fine - slightly pink in some lights - but not sore and moisturising seems to help.  Treatments are easy to manage and generally the girls are running to time so it doesn't take too long.  Glad that we get free parking during this though!  My appointments have all been morning so far and will be next week too.  Today I was seen by the review radiographer who just wanted to check I was doing everything I should and not having any untoward effects.  He did say that side effects might start to manifest themselves about a week after the 15 sessions stop (I am having five booster sessions too) but I am hoping that this won't be too severe.   I have to say, radiotherapy is very impressive in their efficiency and friendliness.  I have continued to drink loads of water which must help too I think.  I saw the nurse this week about starting bisphosphonates.  I have decided to go with the infusions as I hate pills and the side effects of them can be significant.  I am now waiting for a call with a date to go in to have the first one.  You have to have bloods done beforehand like chemo and calcium supplements but it doesn't sound too challenging.

 

This week was my first zumba class since August.  I decided to go even with the wig on so made sure I stood under the air con!  It was so great - I had a lovely welcome back and actually felt quite emotional.  Another step back towards normality.  After I finish this I am going for a four mile walk as there is no rain forecast and I fancy some fresh air.  Talking of walking, I have signed up for one of the Breast Cancer Now walks in June - 10 miles in Derbyshire - as a pal I walk with now is moving up there so we thought it would be nice to do together.  We have both done the Moonwalk in the past but don't fancy that again!!  

Only other thing of note this week - have booked an hair appointment for when radiotherapy is finished!!  So excited.  My hair is a bit of a mess and I suspect needs cutting short in order to sort it out.  My hairdresser is fantastic and will be able to do something with it I am sure.  I do want to get rid of the wig now. 

 

Anyway, thinking of you all and hoping you are OK, with much love. xxxx

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Re: August 2019 Chemo Starters

So sorry Julie!

 

How could I forget you! How are you recovering, I am really sorry that you had to have 2 operations. My breast cancer nurse did say this would be a journey and a challenge and indeed it is. And yet I am so glad to have you all alongside me in this.

 

I hope you are better,

Hollyleaf

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Re: August 2019 Chemo Starters

Dear Wolvesgirl, Blackcat, Lisaloo and all,

 

I had my meeting with the surgeon on Monday and he seemed pleased of how the tumour has responded. It went from nearly 45mm to about 15mm although obviously they won’t know until the pathology is done on the tissue. That means I will be having a lumpectomy, which was my preferred outcome. I have to be honest with you all,  I don’t actually feel happy or relieved. I feel more that I want to get surgery over and done with and I can move onto the next stage.

 

I too will be having a drainage bag and I hope that will be ok. I have my pre op assessment next week and surgery the week after.

 

How is everyone getting on? Lisaloo, you should be having your last chemo tomorrow, I really hope all goes well. Blackcat, I hope your recovery is going well and Wolvesgirl, how are you getting on with radiotherapy (if you are having it)?

 

Much strength to you all,

Hollyleaf

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Re: August 2019 Chemo Starters

Hi Lisaloo and Blackcat (and everyone else)

 

Great to hear you have both had a good week - Lisaloo, I was thinking yesterday that it would be your penultimate chemo - this time next week it will all be done!  One step closer to finishing all treatment - in my head, chemo was the bit I needed to get done, the radiotherapy and bisphonates are just blips (could be proved wrong of course but so far so good).  In the six weeks since I finished I am beginning to feel more positive - during chemo I was convinced it was all a waste of time - but now I feel that I am getting my life back.  I hope that is the case.  I hope you enjoy your break before surgery.

 

Blackcat - so very pleased about the histology report - you must be delighted.  Made all those tricky days of chemo worth it.   It sounds like you are having a good recovery so well done you!

 

Hope everyone has a good weekend - bright sunshine here but very cold - better than all that rain we have had.  Much love xxxx

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Re: August 2019 Chemo Starters

 

Hi to all ladies.

 

lovely to have a read through and catch up on how everyone is doing. I hope everyone is feeling ok or as ok as they can be.

 

I had number 11 of 12 paclitaxel this morning... last one next Friday!! Whoop 

12 pax plus my 4 EC seemed like such a long hall, I can’t actually believe it’s coming to an end. I am looking forward to 3 to 4 weeks off no treatment before my surgery. 
I’m hoping to get back into the gym for some light exercise in that time plus carrying on with my walks with my little pooch. 

Im expecting a restless night tonight because of the steroids so Iv just has a nice soak in the bath to try and relax myself a bit! 

hope everyone has a nice weekend. 

lisa xxx

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Re: August 2019 Chemo Starters

Hi all,

 

It’s great to hear how everyone is doing, and to see that we are all progressing on to the next stages of treatment.  Spottycotty and Wolvesgirl - it’s good that you have started radiotherapy, which is so much shorter, and hopefully much easier, than the chemo.  Julie - I hope that all goes well with the results from your second surgery.  Hollyleaf - I hope that you are getting some relief from the side effects and also the dreaded hot flushes.

 

I had my post-op review with the surgeon yesterday, and got my dressings off, which was a relief as they were beginning to make my skin itchy.   All is healing well, the scar is long but very neat, and I have recovered pretty good mobility in my arm already due to the arm exercises.   I did have a little bit of fluid swelling (a seroma) under the arm where the drain had been, but the nurse syringed this off yesterday and the skin is now flat again.  I am wearing my ASDA post-surgery bras, which are proving to be really comfortable (although not the prettiest) and have a pocket for the softie prosthesis.  The surgeon also gave me my histology results from the surgery, which he said were the “best possible outcome” I could have.  The histology report confirmed what the post-chemo MRI had indicated - that the tumour and one affected node had a complete pathological response to the chemo,  with no cancer at all remaining.   There was also no evidence of cancer cells in any of the other lymph nodes, of which I apparently had the unusually high number of 39 (now reduced to none).  I felt sorry for the poor pathologist who had to identify and test all those nodes in the strip of tissue they removed from my underarm, as apparently it is quite a difficult task. 

 

My surgeon said that the multidisciplinary team have decided that because I have had a mastectomy/ANC and a complete pathological response to chemo, it will not be mandatory for me to have radiotherapy, but that I can choose to have it as a “belt and braces” approach if I wish (in addition to the 14 continuing treatments of herceptin/perjeta which have always been planned, and possibly bisphosphonates in due course).  I said that I would like to have the radiotherapy, as it seems sensible to take advantage of all the treatments on offer to help prevent recurrence.  I have an appointment with my oncologist next Thursday to discuss this, plus an appointment with the radiotherapy oncologist at the start of February.  Radiotherapy is not offered in my local hospital (York) and so I will have to travel to St James’ in Leeds, but luckily our local cancer charity offers a free minibus service to transport radiotherapy patients from York, for whom appointments are grouped together in the middle of the day at the Leeds end. 

 

I have been offered the chance by my BCN to take part in some “Return to Movement” group exercise sessions, which I have said I will attend.  Has anyone else been to these?  I’m not sure if they are a national initiative like the LGFB workshops.  I was also given lots of booklets about “Moving Forward” courses and events, but I think I still have some way to go on the treatment journey before signing up for those. 

 

I hope that everyone will have a good weekend - enjoy whatever you are doing!   Much love to all.

 

Blackcat xx

 

 

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Re: August 2019 Chemo Starters

Hi everyone

 

Well another week gone by - hope all are OK.  

 

Spottycotty - thank goodness you are getting sorted in the end and have had the CT scan.  As you know I started radiotherapy yesterday.  So, its pretty simple - not too dissimilar to the scan you had yesterday although a different machine.  I wear a vest top and a jumper (lucky that I don't need to wear a bra) so I don't have to worry about changing, I just roll the vest down when I get on the couch.  They seem to like that as its probably quicker for them too.  Then the next few minutes are spent with the two radiographers muttering numbers, measurements and various other things to each other and moving you around bit.  Once they are happy they disappear and you get told when to hold your breath through the microphone as you would have done yesterday and then its done - the actual procedure is probably about 5 minutes, the setting up and muttering about the same.  I think the worst (so far) that can be said is its a bit tedious but I am sure is worth it.  Sorry your appt times are not great - hope you can get childcare sorted out.  Do you have to travel far to the hospital?  So far I can't say I have experienced any side effects - time will tell.  I am slapping moisturiser on twice a day at the moment.  I also saw the dentist today which was routine and got the all clear for the biphosphonates.  I see the nurses about that on Thursday.  I will be glad to stop all these appointments!  As with everyone I have met so far, they have been great and very responsive.

 

Julie - sounds like you have had a really hard time with chemo and surgery so close together - be kind to yourself, its really hard to recover from all this.

 

Hollyleaf - my knees have been a bit painful too, just the way it is I guess.  

 

Hope everyone else is OK - Blackcat, you must have had the dressing off, I hope that was OK for you.  

 

Have a good weekend all - we have the panto this weekend (oh yes we do) so I will be on refreshment duty tomorrow night!  

 

Much love, xxxx

 

 

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Re: August 2019 Chemo Starters

Blimey Julie, you have been through the mill havent you!! Hope you feel better soon and get the results you need next week 🤞

 

wolvesgirl, how did your first radio session go?? Hope you’re ok and moisturising loads tonight!!

 

I had my initial consultation yesterday, he said I will get an appt in 10 days time for my tattoos and CT scan, I explained how long I’ve waited already, that my chemo finished In Nov, he rang through and they squeezed me in, so I’ve been back this morning at 9am, so I’m all done and raring to go, I start on 27th for 4 weeks, really bad appt times though, earliest is 3.30pm and latest is 4.50pm! Couldn’t be worse considering the children finish school at 3pm 😩 I’ll have to manage it though otherwise I’ll be waiting to start sometime in Feb!!

 

Hope everyone else is doing ok, can’t wait to read your updates xxx

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Re: August 2019 Chemo Starters

Dear Hollyleaf, and everyone else...

 

I do sympathise with the 6 x Docetaxel as that is what I had too.  I found the last one particularly hard too, and assume it's the cumulative effect (and I didn't have to endure two earlier ones that didn't appear to be working as you did!).  My fingernails, and toenails, didn't give me any problems throughout although I can see some small ridges on them now.  They feel strong though so I'm hoping I got away with that (I just made sure I moisturised my hands/nails often with Nivea Creme).

 

It's difficult for me to say when the effects got better for me, as I had a lumpectomy/sentinel nodes biopsy only 3 weeks + 2 days after my final Docetaxel - so I then didn't know whether I was trying to cope with the effects of the chemo or anaesthetic!  I was booked in for surgery after the 5th cycle and, although that was delayed by a week because of low platelets, they wanted to keep to the same surgery date - the surgeon said 4 weeks after the final chemo is the optimum date for surgery, so it was a bit early for me in the end.  Hopefully they will sort your dates out very soon.

 

I got the results back from the surgery a week and a half afterwards.  Very happy that they found NO cancer in the nodes (he only took 2 in the end) but unfortunately he hadn't taken enough healthy tissue from around the lump so I had to go back last Friday to have another 0.7mm taken.  I'll get the results from that next Wednesday, so fingers crossed again.  To be honest, recovery from last Friday's surgery hasn't been too easy - although I suppose 2 x general anaesthetics and 2 x surgeries within 2 weeks of each other was a bit much for my not-quite-better-from-the-chemo body to cope with.  The surgery itself was fine, and is healing well, but the effects on my brain were a different matter!

 

In answer to your question re scans, I was initially only sent for an ultrasound but the surgeon wasn't happy with the result so he sent me for another MRI which revealed my lump had shrunk from 3cm to 3mm (although that's now debatable, with the additional surgery required).  I think it depends on how dense your breast tissue is - mine's apparently very dense, so changes are not so easy to see on ultrasound only whereas MRI is much more detailed.  I was told, though, that because of the shrinkage my tumour had been re-categorised from a Stage 2 to a Stage 1.  I think we've all found all along that different hospitals approach all the treatments differently.

 

As I'm already 59, I'd already "done" the hot flushes once (no HRT for the same reason as you) but they seem to have come back recently as I'm still having 3-weekly Herceptin and I believe that causes them.  Not nice, and quite confusing with everything else going on!

 

So, very best of luck for your appointment next Monday.  Another step on the journey but it WILL all be worth it in the end!  I didn't feel the hoped-for euphoria at the end of the chemo, but as everyone has said it's so nice that it's over.

 

Julie xx

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Re: August 2019 Chemo Starters

Dear all on the thread,

 

You are all so lovely, to me reading your posts is like receiving a friend’s hug. So, I haven’t been writing because the last Docetaxel has taken a bit of a toll, but I am getting better every day that passes.

 

Thanks so much for the tips! I already use Evonail (although admittedly I only started just before Christmas) and I don’t think it will be a match strong enough for the Docetaxel. Anyhow, they’re only nails and they will grow back. The hot flushes are way more annoying. I too have kept my summer duvet (and use another blanket on top for my cold husband!). I really hope they will ease off as the effects of chemotherapy and steroids wear off. 

 

I am really glad to hear I am not the only one with painful legs and knees! I thought this might be chemo-related, I am quite fit and never had that pain before. I walk twice a day the dog and do as many chores at home as possible- just to exercise! I agree with those of you who have finished earlier that the recovery will be slow and gradual but we are all working towards it! 

 

Now onto the surgeon, he was non committal as he hasn’t seen the scans! He’s only sent me for an ultrasound and a mammogram, was that your experience too? Was it Wolvesgirl or SpottyCotty who were saying about your heart beat (sorry can’t check now while I am writing)? Many thanks for passing the information that yours has slowed down, it’s reassuring!

 

I will be in touch again as I have another appointment next Monday, I keep my fingers crossed for the outcome.

 

Much love to you all 

Hollyleaf

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Re: August 2019 Chemo Starters

Hi everyone

 

Good to hear how everyone is getting on - well done Hollyleaf for getting through eight cycles - thats a marathon, especially six Docetaxel.  I hope your appointment with the surgeon goes well.  Re your heart beat - I was concerned about mine too - I generally have a pretty slow and steady resting pulse and on Docetaxel it was galloping along - it has resolved now though so I am sure yours will.  The hot flushes sound a nightmare for you all that are experiencing them.  Sorry I can't add much to that debate.  Re nails - my finger nails are totally fine, I have one toenail with a tiny black area but no soreness so I count myself very lucky in that way.  

 

Lisaloo - glad the shopping was painless!  Just had a FaceTime with the bride to be in Australia - I need to up the savings I think!!  The dress sounds lovely though.

 

Spottycotty - I am so pleased you have got the initial appt for your radiotherapy journey.  With mine, I saw the doctor a few weeks later than planned (about 3) and then was seen for the planning scan within a week.  I believe that they then have to review the scan and finalise the doses etc so hopefully they will do this for you as a matter of urgency.   As you know I start the treatment on Thursday - am optimistically thinking I can go to that and then straight to the gym some days - will have to see if that works.  Gym-wise I am still taking it easy, I find I stiffen up more now but I am an old girl so maybe to be expected.  I have been moisturising my skin like mad ready for the radiotherapy so hopefully am as prepared as possible.  We can be radiotherapy buddies!  I am so interested in the hair integration - it sounds fab.  Does your own hair grow through the mesh then?  Presumably you wash and dry it as normal.  I don't mind my wig at all but am beginning to feel that I should think about ditching it.  I showed my stepdaughter my hair today as she was up staying and she reckons I need to get it all cut as its very wispy and rather out of control so hopefully it will not continue in that vein for long!   

 

Anyway, great to hear from everyone and I look forward to updates this week as we all continue along this road.  Much love xxxx

 

 

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Re: August 2019 Chemo Starters

Also, I had my Hair integration done last Friday, it’s amazing and I love it!!

Its very light and I can’t really feel it on like I could my wig, I had a bit of separation anxiety from my wig  in the morning! I know some people hate wearing wigs but I loved mine, it’s got me through a difficult period so I was a bit sad in a weird way to put it away!

Anyway, the best bit about my new hair is that I don’t have to take it off, so no horrible sweaty wig hair underneath in the evening!!!

ha ha, it’s the small things in life!!!

 

 

 

 

 

 

 

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Re: August 2019 Chemo Starters

Morning everyone,

This thread has been busy over the weekend! Lots for me to catch up on but it sounds like everyone is doing brilliantly!!

lisaloo, I’m really envious of how fast your appointments have come through, that’s really efficient from your hospital.
sounds like you are handling your chemo really well too.

 

Ive got my initial consultation regarding radiotherapy on Wednesday so I’m hoping to get a start date then, this wait for me has been the worst, I had my last chemo november 19th.

Wolvesgirl, I’ll be waiting to hear how you get on with your first appointment on Thursday!!

 

Regarding losing nails, mine have been so healthy all the way through chemo, I was using Sally Hanson’s nail oil, however, over the past 2 weeks they have got darker and it looks like I might lose one.

I swear my hands look like I’m dead!!

As you say Wolvesgirl, after the last chemo, I was expecting to just be better but it doesn’t seem to be working out that way!

I have been suffering with painful legs after my last docetaxol, it has eased slightly but I haven’t been able to get back in the gym just yet, very frustrating!

 

Anyway, keep well everyone xxxxxx

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Re: August 2019 Chemo Starters

 

Hi All

 

Thank you so much Blackcat, all very reassuring to hear! And also Wolvesgirl for your reassurance from your nursing background. I know that these operations are performed day in day out so it’s just all alien to us but not to all the staff. 

Hollyleaf so glad you’ve got your last chemo out of the way and I’m right behind you with another 2 weeks left. My last one is the 24th of jan. 

 

I actually got a letter through today with my appointment with my surgeon for the 28th of January. 

Hollyleaf Iv also been suffering with hot sweats too.. I was having my periods up until October, slight show in November but nothing since. I mentioned it at my last check up and he did say that they could refer me for acupuncture which is supposed to be good for hot sweats. Maybe worth asking about. 

my shopping trip wasn’t a long one today as being a typical man he knew exactly what he wanted so we were in and out each shop in minutes 😂 if it was with my daughter the shopping trip would of been a totally different one.  

take care everyone

Lisa xxx

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Re: August 2019 Chemo Starters

Hi Hollyleaf,

 

It’s great to hear that you have had your last chemo treatment - congratulations!  I hope that all goes well with your appointment with the surgeon on Monday.

 

I sympathise with you completely in relation to the hot flushes.  My periods had stopped about a year before I was diagnosed, and I was getting hot flushes which I was treating quite successfully by taking Menopace Plus.  I had been offered HRT by my GP, but - ironically - had preferred to try a natural treatment due to the increased breast cancer risk of HRT.  On diagnosis in July, my oncologist told me to stop taking any herbal supplements as I was due to start chemo imminently, so I had to stop the Menopace.  The result was that the hot flushes came back with a vengeance, particularly at night, and I had to try to find another way to reduce them. My solution, which is working quite well, has been to buy a very light duvet (one of the M&S washable ones with a printed cover, although I am using mine with a normal duvet cover), plus a tower fan with a remote control which I have right by my bed.  I keep the remote under my pillow, and when I am woken up by a hot flush, I immediately give myself and under the duvet a cold blast from the fan, which can also be set to a quiet, gentle setting for sleeping if need be.  This seems to reset my body thermostat, and I usually fall asleep again immediately.  I also keep a metal water bottle with iced water by the bed so I can have a drink if I wish.  

 

I found that both the steroids and the chemo made my hot flushes worse, and my oncologist said that unfortunately this was to be expected.  The flushes have definitely improved since I finished chemo, although it was not immediate (my last treatment was seven weeks ago, and they improved about two weeks ago).  Due to the surgery, I have not resumed the Menopace, but will probably do so once my BCN says it is OK. 

 

I hope that you find some relief from the flushes, which are horrible.  In relation to the fingernail problem, it might be worth trying Evonail or similar if you are not already doing so.  I have been using Evonail throughout and have kept all my fingernails in quite good condition, although they do have a few ridges due to the docetaxel.  Take care, and much love. 

 

Blackcat xx

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Re: August 2019 Chemo Starters

Dear all,

 

An update from me. I had my last (8th) chemotherapy, six of which were docetaxel, yesterday, so still feel flushed from steroids and not looking forward to the filgrastin for a week (starting tonight). However I am so pleased this was the last one. I have an appointment with the surgeon on Monday so I will update you after that.

 

Blackcat, thank you so much for your posts. Like Lisa (and probably others on the thread), I am anxious about surgery but sounds like yours went very well and you are recovering so well too. 

 

I have not not been sleeping well, with loads of hot flushes at night that keep waking me up. Has anyone managed to handle them better? I still had my period when I started chemotherapy so the oncologist said this might temporary or not. There’s no way to say until the effects of chemo wear out. 

 

I think I might lose a couple of fingernails and my finger tips are fairly tender, but in  the grand scheme of things, these are pretty minor side effects. I hope my heart rate will slow down as it’s been fairly accelerated recently (I have mentioned this to the nurses though).

 

Anyway, much love to you all, you are great comfort, thank you!

Hollyleaf

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Re: August 2019 Chemo Starters

Dear Lisaloo, Blackcat and other members of the forum

 

Lisaloo, I am so pleased to hear that plans are being made to get you onto the next phase of this journey - I thought Blackcat's post was excellent and I am sure has provided you with some reassurance.  I had WLE and then had to go back to theatre a few weeks later for the SNB.  I have had surgery before, nothing major, and have been a nurse all my working life so there were no surprises for me but I can endorse everything Blackcat has said.  The types of anaesthetics used these days are so much better than they used to be and enable people to be up and about and eating and drinking really quickly after surgery which is so important in preventing complications.  

 

Probably the worst thing is putting up with the discomfort of the drains and the dressings which as Blackcat says start to pull after a while.  Never having had a drain in I will leave it there as not an expert!  Most important are the exercises - this is the same for many types of surgery but I would urge you to ensure that you do the arm exercises that Blackcat describes - you might regret it later if you don't!  I get the feeling that all of us on here are determined to beat this so I am sure you will.  

 

Blackcat - it will be lovely when the dressings come off, I always start to itch after a while as well as the pulling sensation you describe.   

 

How well we have all done ladies - the chemo is (nearly) behind us and we are moving on. 

 

Lisaloo - enjoy the shopping - sounds an expensive one.  We are in the process of wedding dress shopping for stepdaughter number 2 - at a distance as she is in Australia!  I am a panto widow this weekend - my husband is the typecast villain in the annual village production and its a day of rehearsals today.  Much love xxx

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Re: August 2019 Chemo Starters

Hi Lisa (and everyone),

 

It’s great that you only have two of the Paclitaxel to go, and then you will be on to the surgery.  I found that the surgery honestly is nowhere near as bad as the chemo, as people on this thread had said to me.  Like you, I had not had an operation or a general anaesthetic before, so was a bit concerned in the days beforehand about what these things would involve (particularly the idea of being put under the anaesthetic).  However, on the day of surgery I had no time to worry at all, as from the point I arrived at the hospital I was kept so busy with appointments (with the surgeon, anaesthetist, theatre nurse and another nurse who gave me a surgical gown and did my obs) that before I knew it I was being walked down to the operating theatre.  I actually felt quite chilled out at that point, because everything felt so well organised and reassuring - it was clear that my operation was just one amongst many that day, and that it was completely routine to the staff,  even if it was new to me.  Once I was in the anaesthetics room, all I can remember was the anaesthetist putting a cannula in my hand, and literally the next thing I knew was that I was in the recovery room, talking to a lady in the opposite bed who I had met in the waiting room.  A few minutes later I had been wheeled back to the ward, and was having a nice black coffee and a tuna sandwich.  An hour later, I was able to walk around, and I spent the afternoon chatting to other patients as they came and went after surgery.  I was in the “Extended Stay Area” Ward where most patients were discharged after a few hours, but one lady and I were booked in to stay all night.  During the time I was there, I saw about 20 patients come back from surgeries of all kinds, and all of them recovered quickly.  It made me realise that surgery is much less frightening than I had imagined.  All of the staff who looked after me were brilliant, too, which I’m sure will be the same for you.  

 

There a few things which have really helped me during my night in hospital and the first week post-op.  As it is difficult to wash properly with the drains in, and you are not allowed to shower,  shower/bath wipes are great (I got the Drench brand).  Front-button pyjamas are a must so that staff can check the wound and drains.  My V-pillow has been wonderful, as otherwise I don’t know how I would have managed to sleep with the drain in.  I am still using it now to avoid rolling onto my operated side.  The heart-shaped pillow I got from my BCN is also great to support the arm at night, or when sitting during the day.  

 

I am doing my arm exercises three times a day and recovering good mobility on my right side - so much so that I am now using my right arm almost as normal (but avoiding any lifting or pulling).  The numbness under the top of my arm is going, to be replaced with a slight tingling feeling, but this is not unpleasant.  I am feeling well and sleeping well, and looking forward to getting the dressings off next week as they are pulling a bit on my skin round the edges in the underarm area.

 

I am sure you will be fine with the op - if I can do it, anyone can!  I hope that everyone on the thread has a good weekend.  Hugs to all.

 

Blackcat xx

 

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Re: August 2019 Chemo Starters

 

Good Morning ladies.

 

glad to hear your both doing well black cat and Wolvesgirl. Hope everyone else is too. 
Blackcat I bet you were glad to get the drains removed. Did you find it difficult to sleep with them in? 
I had treatment number 10 of 12 yesterday so Iv had a bit of a sleepless night due to pre med steroids given but on paclitaxel there the only ones your given, none to take at home so usually get a better nights sleep for the rest of the week. 
I had a check up appointment on Wednesday with the head pharmacist for oncology and he’s happy with how I’m dealing with side effects ect so he’s now letting my Surgeon know that I’m nearing the end of my chemo and I’m to expect an appointment from her soon. 
As the chemos nearing the end I am getting anxious about the surgery, Iv never had any kind of operation before. My only hospital stays have been when I had my 2 children! 
Your words have been reassuring though Blackcat so thank you for that. Iv also already met my surgeon and she really is such a lovely lady with a very good reputation. Everyone Iv spoke to that’s also had her speaks very highly of her. 

 

I’m off shopping with my son today as it’s his 16th birthday on Tuesday and after getting all sorts for Christmas he’s informed me he just wants clothes! This should cost me! 😳😆 

hope everyone has a lovely weekend. 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl, Lisaloo79, Spottycotty, Hollyleaf and all on the thread,

 

Many thanks for your good wishes following my op last Thursday.  My recovery is going well - I had the drain out on Monday (four days after surgery), which was a big relief as the bottle was getting so heavy that it was making me walk like a hunchback!  I walked back from the hospital through our local park after having the drain out, and it was so nice just to be able to move normally without worrying about pulling on the drain tubes (ouch ...).  I stopped taking any painkillers on Monday morning, and have not needed them since.  

 

I am doing my arm exercises three times a day as instructed, much to the amusement of my anyone who happens to be around at the time.  The exercises really help, though, and I am gaining more mobility in my affected arm every day.  I am doing most household tasks as usual, but just being careful not to lift or pull anything heavy with my right arm.   I don’t have any visible bruising from the op, which surprised me as when I had a biopsy/clip inserted a few months ago, my whole chest area went black and blue.  

 

I have an appointment next Thursday to get the dressings removed, and also to get the pathology report from the op (if it is available - if not, I will get it on the following Thursday when I see the oncologist).  One question I am going to ask is whether I will need to have radiotherapy as a follow-up treatment (in addition to the 14 additional cycles of herceptin/perjeta infusions which I will start on 27 Jan).  Radiotherapy is apparently given routinely after a lumpectomy (to deal with any cancer cells possibly remaining in the rest of the breast), but not after a mastectomy.  However, I see from the NICE guidelines on primary breast cancer treatment that recent studies show that radiotherapy can have a potential benefit in preventing recurrence after a mastectomy, so I will check what my oncologist says about this.  So far my oncologist has not discussed this with me, and I didn’t think to ask about it yet as I was focusing first on the chemo and then the upcoming surgery.   The other question I need to ask is whether I will be prescribed biophosphonates in due course, which my team has already mentioned as a possibility.  Hopefully any further treatment cannot be as unpleasant as going through the chemo was (I will not forget the ghastly effects of docetaxel for a long time ... ). 

 

I hope that everyone on the thread is well, and that the final effects of the chemo are receding.  I think it does take a few weeks after the end of treatment to feel normal again, as my tastebuds are only just working properly over seven weeks after the last infusion.  I now have full feeling back in my fingertips and toes too, although my fingerprints are not back yet and I am still having to type in passcodes on all my electronic devices.

 

I hope everyone has a good weekend!  Much love to all.

 

Blackcat xx

 

 

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Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

re ur question about biphosphonates....   had to just check my spelling !! 😆

i have recently had my second infusion of Zoladronic acid.

every 6 months for 2 years so nxt due in July.

if i remember correctly its to strengthen bones and maybe prevent recurrence.

good luck with radiotherapy,  its much easier.

mini mad xx 💖🐶

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Re: August 2019 Chemo Starters

Hi Everyone

 

Hope you are all getting on well - Blackcat, have been thinking of you and hoping that your recovery has been straightforward - is the drain out now?  Hopefully you should be feeling much more yourself and able to enjoy this nice sunny weather (if you have it up there)!  

 

Lisaloo - is it number 10 today?  So close now!  

 

Spottycotty - have you got to the gym this week?

 

All fine here - I have been a bit more tired this week - I guess because I did a lot last week - but I have carried on and done what I wanted to do - walking and the gym when I felt like it.  I think that I assumed that once I was past the three weeks since my last chemo I was then "clear" of it as I was on the three week cycle.  So last week was week four and I attacked it with a vengeance!  I think that maybe its not that simple and it will take a bit longer to fully recover from the onslaught of chemotherapy.  I start radiotherapy next Thursday which will be exactly six weeks since my last chemo and to be honest I can't wait to get it started, just to get it done.  I also have an appointment for the Thursday after about starting biphosphonates which I will probably have IV twice a year.  I see the dentist next week as well to ask his opinion on whether its OK to have them.  Is anyone else going down that route?

 

Wishing you all a lovely weekend - with much love, xxxx

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Re: August 2019 Chemo Starters

 

Hi Blackcat

 

so good to hear that everything went well with your surgery and that your home and recovering. Take the good advice of Wolvesgirl and make sure you rest. With this part still to come and my chemo end getting nearer Iv found myself thinking of the surgery more than I have before as it seemed so far away! It’s nice to hear that all’s gone well and your managing at home with the drains. 

 

Take care and look forward to hearing another update. 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

Thanks for the good advice about listening to the body and resting.  I’m sure that you are right about the anaesthetic doing strange things to the body, as today I have felt everything from fine to exhausted at various points.  I have just had a bowl of chicken soup with some cranberry cheese and biscuits, have found a comfortable position propped up by the V-pillow, and so will have a rest in front of the TV, accompanied by my two black cats!   I hope that you are well and that you enjoy your evening.

 

Blackcat xx

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Re: August 2019 Chemo Starters

Hi Blackcat, 

 

Great to hear your update - I am so pleased it went smoothly and that you got home as planned - well done for doing so well. My advice (for what it’s worth) is to remember that post op recovery is two steps forward and one back, mainly due to the anaesthetic, so if you have a tired or sore day, listen to your body and rest more. You will soon find that you feel less tired but anaesthetic is strange although so much better than it used to be.  It’s tempting to try and push through it especially when you have had good days.  

 

Hope you and everyone else have a good and restful weekend  xxx

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Re: August 2019 Chemo Starters

Hi to all on the thread,

 

Many thanks for all your good wishes.  I had my surgery (mastectomy and axillary node clearance( on Thursday as planned, and was first on the theatre list so didn’t have time to get nervous!  The op took 3 hours, as the nodes were being removed through the breast incision in order just to leave one scar.  The surgeon said that everything went very well, and I was discharged early yesterday morning (just in time to make the hospital’s deadline for “discharge within 23 hours”, I guess).  The hospital team were wonderful, and made the whole process much easier than I anticipated it would be. 

 

Since getting home I have been able to eat, get washed/dressed and move about the house as normal (although slowly due to the drain), and also slept quite well last night supported by a V-pillow.  My would is draining quite a bit, as is apparently normal after an ANC, but I am getting used to moving around with the bottle and tubing.  I am just on paracetamol for pain, which is working OK although I do have to be careful of sudden movements (particularly bending or twisting) which can really hurt.  I have started doing the arm exercises and have been outside for a short walk, and am trying to be as mobile as I can. 

 

I am finding that my flat side is not bothering me at all in terms of appearance - I am wearing button-through patterned tops at the moment, and the difference is not really noticeable (I didn’t have a huge chest in the first place).  Once the drain is out, I will try out the softie prosthesis I got from my BCN, and also the post-surgery bras.  I am hoping to get the drain out early next week (it needs to drain 50ml or less before it can be taken out).

 

I hope that everyone is doing well!

 

Blackcat xx

 

 

 

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Re: August 2019 Chemo Starters

Hi all,

 

Just popping in to the thread with a quick update after my surgery yesterday - thank

you all so much for your good wishes.  I was first on the list for my operation (mastectomy and axillary node clearance) yesterday morning, which was great as I didn’t have time to feel nervous at all.  The operation took 3 hours, and the surgeon said it went very well.  She removed all the lymph nodes via the breast incision, so I only have one wound and one drain.  I found that the recovery immediately after the surgery was quite quick (I was only in the recovery room for 15 minutes, then back in the ward being offered a drink and a tuna sandwich).  I was able to walk around (a bit unsteadily, but watched carefully by a nurse) one hour after coming back to the ward, and three hours after I was able to eat a proper meal.  

 

I was discharged this morning, and am now at home.  The drain is a bit of a pain, as it is draining quite a lot due to the ANC, and is cumbersome to lug around.  I am just on paracetamol for pain relief, and am finding that I need to be very careful and slow when making certain movements to avoid pain (bending and twisting are problematic at the moment).  However I am not particularly tired, and am able to eat well (tastebuds have finally recovered from the chemo).

 

I hope that everyone else who has just had surgery, or is preparing for it. Is doing well.  Love to everyone.

 

Blackcat xx

 

 

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Re: August 2019 Chemo Starters

 

Hi ladies

 

lovely to hear how everyone’s getting on. 
Julie keeping my fingers crossed for you that you don’t need more surgery and Hollyleaf great news if you can just have a lumpectomy! 

Number 9 all done and dusted today. I came home and had a snooze on the couch after it as I felt exhausted but felt fine after my little nap so got out for a walk with my dog. She’d been curled up on the couch with me so needed her legs stretching too! 
The hair growth is continuing for me on Paclitaxel as the weeks go on... when I say hair growth it’s still very patchy and it’s only about a cm but it’s a lot more than I did have. I have a little fuzzy covering. More in some places than others and I have a hair line! I even had a little bit of bed hair going on the other morning with the fuzz I have 😂😂

 

Wolvesgirl well done you for getting back in the gym. I’m gong to go in next week and just do some light bits. I know I’m going to stuggle too with feeling unfit but it’s a start just getting back in there isn’t it! 
Spotty Cotty.. Iv found that being at work has done me the world of good while going through my treatment and I feel lucky that Iv felt well enough to do so. I have reduced my hours down to part time but Iv managed to get in and all my colleges and managers have been amazing. It’s so annoying how they messed it up with your radiotherapy for you. They don’t think about how it effects people financially at all! 

take care everyone and everyone that’s had treatment/surgery make sure you get the rest your bodies telling you to get. 

Lisa xxx

 

 

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Re: August 2019 Chemo Starters

Dear all,

 

First of all Blackcat, we are all thinking of you and hope you are recovering from your operation. I had a lovely Christmas and a worrying Boxing Day with trip to A&E because of chest pain. After several scans and an ECG I was discharged - thankfully my heart was fine. However for the rest of the day the pain was so strong I could not walk. The day after I rang the chemo unit and they immediately recognised the chest pain as a side effect of the filgrastin. Thank goodness my last chemo is next Friday 10th. 

 

Anyway, onto the good news, my appointment went well, the oncologist was very pleased how much the tumour has shrunk and he said I stand a good chance to have a lumpectomy rather than a mastectomy. I have an appointment with the surgeon on the 13th and I will report on reconstruction then.

 

Lisaloo I hope your last chemo treatments are kind to you, I have felt more tired with this last one. Julie, I am glad you are recovering: I too am worried about the general anaesthetic!

 

Happy New Year everyone,

Hollyleaf

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Re: August 2019 Chemo Starters

Hello everyone

I hope the surgery went well, Blackcat, and you're not too "out of it".  I had mine last Friday (27/12) and was really surprised how tired I felt afterwards.  I'm told it's the anaesthetic (I'd never had a general before, or indeed an operation!) but that you slowly get more energy.  So I'm now a week beyond the surgery and finally feeling up to doing a few limited things.  I'm beginning to heal, and go back next Wednesday to see the surgeon and get the results from the sentinal node biopsy and whether they found anything in the 'healthy' tissue surrounding the lump that was removed.  So I'm worrying about that now!  The surgeon made it very clear that it was possible there would need to be another operation, depending on the results.  At least you won't have to think about that.

 

It's great everyone is getting back to the gym.  I've never been a gym-goer but I'm certainly looking forward to getting back to much longer walks with my dog - they've always kept my weight down, and I'm definitely getting a bit chubby with all the extra food I've had to eat to try to raise my haemoglobin levels (my op was delayed for a couple of hours so that matched blood could be brought across in case I needed it - again due to low haemoglobin.  I don't know if it was used though!).

 

Hope everyone has good weekends - the 'dark days of chemo' are almost over!  Julie xx

 

 

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Re: August 2019 Chemo Starters

Hello everyone

 

Hope all are OK.  Blackcat - hope you got home as planned today and are not too uncomfortable.  I wonder if the drain is a bit irritating?  How long do you have to keep it in?  

 

Spottycotty - all sounding good with you - looking forward to hearing how the weekend in the log cabin went - hot tub will be great, I am not a fan of the communal one in the gym (even less so since someone had a cardiac arrest in it!) but one at a house is different.  We had a weekend at a lodge in Snowdonia just before chemo started and that had one which was fantastic - with a roof and lights - very posh.  Lovely views from it too.  I think going back to work is a good idea, if I was still working I would be looking to go back now, especially as I worked on the site where the radiotherapy is done - it would have just meant walking across to the unit every day!  I am riveted about the idea of hair integration - I had never heard of it, so have been googling it today.  I will be really interested to hear how it goes, there is a place in Shrewsbury that does it (£££) but I would be prepared to consider it, despite saving for my stepdaughters wedding in a years time.  I cold capped, lost most of my hair but have a good amount back now which is still very thin and could do with some help.

 

Lisaloo - hopefully you will have had number 9 today, three more to go.   I have been to the gym three times this week (feel tired today) but have cycled pretty gently and done some weights.  I try to get the bike under the aircon to keep cool.  It is nice to be back but I do feel unfit.  

 

Had a lovely day today with my pal who has supported me through this.  She teases me mercilessly which is fun and we laughed a lot.  I am so lucky.  Have a great weekend everyone, much love xxxx

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Re: August 2019 Chemo Starters

Happy New Year everyone xx

 

Blackcat, hope you’re ok and not too sore from the surgery and you’re managing to rest as much as possible. Looking forward to hearing how you are doing xxx

 

lisaloo, you’re nearly there 💪💪💪 I won’t say it’s flying by because that was one of the things that irritated me when people commented on my treatment!! 😉

Hope number 9 is kind to you though xxx

 

Wolvesgirl, well done for getting back

in the gym, I’ll be going as soon as these sore legs go, can’t wait, I’m getting a bit porky and that’s so not like me, although some say (mum) that I look better for it 🙄🤣

Im thinking of returning to work in the next couple of weeks, I’m due to drop to half pay and I feel like I’m wasting it whilst waiting to start my radiotherapy (still a sore subject with me!)

so I think I’ll go back then if I have to have time off for rads then I will do. I’ll be restricted duties anyway so I could manage that I think. 

We are going away this weekend, we’ve got a log cabin so I’ve booked one with a hot tub to celebrate the fact I’m allowed to go in one now, hahaha!

 

Talking of wigs, I’m having an intergration done 10th Jan, it’s like a wig but lighter and it stays on for 3 months, then it’s removed and washed etc before getting put back again! I cold capped and kept my hair but it is really thin and I’m tired of looking awful all the time so thought I’d try it. 
I can still wash it and go swimming and tie it back etc like real hair so hopefully it won’t be too annoying!

 

Anyway, hope everyone is doing ok, speak soon xxxx

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Re: August 2019 Chemo Starters


Hi ladies 

 

happy new year to all. Hope everyone enjoyed it as much as they could. 

Blackcat I hope your surgery went ok Iv been thinking about you today. Wolves girl that’s great you’ve managed to get back into the gym. I’m thinking of going in too and just doing light exercise. I’m the same with the wig situation.. there’s no way I could go in and do what I used to do with my wig on! 🥵😂 

 

number 9 of 12 tomorrow! 👍🏼 I’m getting there slowly but surly. 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi to all,

 

Happy New Year - I hope that everyone will have a very healthy and happy 2020!  Thank you to everyone on the thread for the wonderful support over the past few months.  Going through chemo is not easy, but I have found that being able to share experiences and worries as we have all undergone treatment together has really kept my spirits up.  The thread has also helped me to see the comical side of some of the side effects I have had from chemo - baldness, warped tastebuds, dripping nose, dodgy digestion to name but a few - and to realise that these effects are only temporary, and worth enduring in order to get better.

 

I am booked in for my mastectomy and ANC at 7.30am on 2 January, and as Wolvesgirl says, I am getting a bit nervous.  Normally I spend New Year’s Eve/Hogmanay preparing lots of food/drink and getting ready for a party, but this year no such luck, as I have been putting away all the Christmas decorations, batch-cooking for the freezer, cleaning the house and packing my hospital bag.  I have also been reading all the leaflets provided by the hospital, including one on the 14 risks of a general anaesthetic which I probably now wish I hadn’t read!  Still, I am glad that the waiting for the surgery is nearly over.   I was told by the surgeon in July that I would need to have a mastectomy after chemo, so it has been a long wait.

 

I will report back after the op on how it has gone, and in the meantime wish all the very best to everyone who is starting off 2020 with treatments, surgery, scans or appointments.

 

Much love to all,

 

Blackcat xx

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Re: August 2019 Chemo Starters

Hi Lisalou, Blackcat and everyone else on the thread

 

Just wanted to wish you all a very happy New Year - lets hope that 2020 is kinder to us all than 2019 has been.   Blackcat - all the very best for the 2nd - I am sure it will be fine but equally you must be a bit nervous about it which is only natural.  Lisalou - down to 4 of 12 - well done!  Nearly there.  I think you are so right about the routine, it really helps to make the time pass until the end of the treatment.  I have started back at the gym this week - just cycling/walking and light weights as I am still wearing my wig so can't leap around in zumba (actually probably couldn't anyway) as I don't want to overheat!  Its lovely to get back into the routine of going in there which I was doing before the chemo started.  I hope to carry on during radiotherapy - can't see any reason why not.  I have put on and lost weight during the last couple of cycles but am still far too heavy.

 

Anyway ladies, take care - I will be seeing in the NY fast asleep (as usual) but we are out for drinks tomorrow which will be nice. xxx

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Re: August 2019 Chemo Starters


Hi to all! 

hope everyone’s had a lovely Christmas. Iv ate wayyy to much and still got so much chocolate to get through 😫 Iv had to hide it away! 
getting quite conscious that Iv put a few pounds on as Iv not been to gym for so long, keep trying to tell myself not to worry about it for now but I can’t help it. 

Julie that fab news about your lump shrinking and I hope your surgery’s gone ok and you recovering well.

 

I had number 8 of 12 yesterday. 4 more to go! To be fare the weeks are flying by.. Iv been going into work Tuesday, Wednesday and Thursdays so Iv got myself into a little routine which I think is helping the weeks go by quicker.

 

I hope everyone has a nice new year whatever your doing.

lisa xxx 

 

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Re: August 2019 Chemo Starters

Merry Christmas to all on the thread🎄🍾🎁🍷

 

I hope that everyone is having a good day, and is able to enjoy time with family and friends.  For anyone with chemo side effects, I hope that they give you a well-deserved break today and that you are able to enjoy some nice Christmas food.  Whatever you are doing, I hope that you have a great time!

 

Much love to everyone. 

 

Blackcat xx

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Re: August 2019 Chemo Starters

Dear Spottycotty and everyone

 

Great to hear that everyone is doing well - Julie, excellent news about the response to chemo and that you are on course for your lumpectomy - personally, I found the surgery really easy to recover from so hopefully you will too.

 

Spottycotty - I would find the delay really frustrating - I had a delay  of a couple of weeks which was nothing compared to yours and I share your irritation.  However, info for you - I have just got back from the planning scan - very easy, the 30 seconds are actually less but as the CT scanner cannot detect if you start breathing again and therefore won't stop scanning, they want to know that you can hold your breath for longer than you probably need.  The radiotherapy machines will stop automatically.  It took about 40 mins in all and most of that was explanations, getting me lined up and fiddling around.  The scan itself took about 3 minutes.  I have my dates for treatment - I start 16 January so not too long.  I actually found the whole thing really easy - the girls were very friendly and helpful and even the tattoos are not too obvious.   

 

Blackcat - glad you will only have one night in hospital and only one drain to contend with - I am sure you will manage splendidly and I look forward to hearing how it has gone.  Will be thinking of you.

 

Lisa and Hollyleaf, nearly into January - your last month in which you will have treatment - great news.  Hollyleaf, I will be interested in your feedback re surgery and what they say about reconstruction etc.  Lots of big decisions to make but I am sure you will be supported in doing so.  

 

Take care everyone, xxx

 

 

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Re: August 2019 Chemo Starters

Hi everyone,

 

Glad to see everyone is doing Well, Lisaloo, glad the time seems to be  flying by for you, welcome Hollyleaf, lovely to hear from you!!

 

Well it seems everyone is starting to move on now, Wolvesgirl, your post made me slightly frustrated due to my circumstances with radiotherapy at the minute!

At my discharge appt with Oncologist on 10th dec, he mentioned that he had referred me for rads in Oct and asked if I’d received the letter, I said I hadn’t, he looked and said that actually it hadn’t been sent to rads dept until 2nd dec, he told me he would chase it up that day.

I received my appt letter this week for 31st Jan!! This is just the initial meeting so the treatment won’t start for another couple of weeks after.

I was so upset and angry, I go half pay 11th Jan and was hoping all treatment would be done by end of Jan and I could start thinking of going back.

I rang and complained and they admitted I had been overlooked so have now given me 15th jan appointment which is better but still too long to wait in my opinion, my last chemo was 19th Nov.

So this will put my return to work back another month now, it’s so frustrating!!!!

 

Anyway, enough of my whingeing, I’ve got another worrying time tomorrow, I hid hubby’s pressies when i was emerging from last chemo and now I can’t find them 🙄🤣🤣 He’s at work tomorrow so I’ll have to have a really good hunt round for them! I swear I can’t be trusted with anything these days 😂😂😂

 

Have a lovely Christmas everyone, here’s to a happier, healthier new year 🥂

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Re: August 2019 Chemo Starters

Dear Lisa, Blackcat, Wolvesgirl, Julieme and all,

 

Thank you so much for your replies and understanding. It is a difficult journey and I remember my heart sinking when after the first ultrasound and two chemotherapies nothing had changed. Thankfully my oncologist changed strategy and moved onto docetaxel. I had a large tumour, 44mm which had shrunk to about 29mm but I have had two more docetaxel since my last scan, so I am really hoping it’s a lot smaller now. I actually cannot feel anything so I am going to ask for another scan before my last chemotherapy. Hopefully not an ultrasound as things were hard to see from the last one.

 

 I will report back on my chat regarding reconstruction/surgery. There are so many things to consider: recovering, radiotherapy, how an implant might look and feel and any pros and cons. 

 

So glad to hear we are nearing the end of chemotherapy, for some is nearly the end of the journey, not yet for me but it feels good that part one is nearly over. 

 

Much love to you all,

Hollyleaf

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Re: August 2019 Chemo Starters

Hi Julie,

 

Fantastic news about the tumour shrinkage, and good luck for the surgery next week.  I’m glad that your tastebuds are recovering just in time for Christmas.  Take care, and let us know how you get on.  

 

Blackcat xx

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Re: August 2019 Chemo Starters

Hi everyone (new and old posters and readers)

 

Great to hear everyone is getting there.  My last post was that I was disappointed my lump had not shrunk, according to an ultrasound, and I must admit I deliberately haven't posted since then because I couldn't think of anything positive to say.  As others have said, we've all had to deal with this in our own ways but I didn't see any value in posting "depressing" news.  BUT... I've now had good news!  Because the surgeon wasn't happy with the ultrasound result, he sent me for another MRI - which revealed my tumour has shrunk from 3cm to 3mm!!!  Although I (and the docs) can still feel a larger lump, they believe it's scar tissue and say that the MRI doesn't lie.  (Hollyleaf - that was after 6 x Docetaxel + Carboplatin + Herceptin + pertuzamab.  I was quite ill with it - had to have 2 separate blood transfusions, and had 2 delays of a week each time for low platelets.  But we got there in the end!).

 

I'm now booked in for surgery next Friday, 27th December.  It should just be a lumpectomy and removal of the first few lymph nodes to be on the safe side.  I'll then have radiotherapy (daily for 3 weeks) but don't yet know when that will start yet.  I'll continue with the Herceptin/pertuzamab for a few months and then follow with hormone tablets for 5 years I think.  Still feels like a long road, but I'm on Day 18 of my last Docetaxel and nearly all the side effects have gone.  I'm actually starting to enjoy food again!

 

So, thank you all again for keeping our spirits up when we've needed it and sharing experiences.  Wishing everyone a peaceful and happy Christmas, and especially a very healthy New Year.  I won't be sorry to see the back of 2019, and I'm sure you all feel the same.

 

Best wishes, Julie xx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

All the best for your planning scan appointment on Monday - I hope that the 30 seconds goes quickly!  

 

As I’m not having reconstruction, if all goes to plan I’ll be in hospital for one night and then sent home with one drain (the lymph nodes will be removed via the breast incision, so there will just be one wound).  I will report back on the thread as soon as I am able.  I am feeling a bit apprehensive about being in hospital and about the operation, but not actually about losing the breast as I will be glad to know that all the tissue where the tumour was has been removed.  I have got the hospital bag ready and the pre-op assessment team have confirmed that I don’t need any further tests, so for the next few days I will be trying to enjoy Christmas and not think about the surgery.  My tastebuds now seem to have fully recovered from chemo, thankfully.

 

Merry Christmas everyone, and may 2020 be a better year for us all!

 

Blackcat xx