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August 2019 Chemo Starters

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Re: August 2019 Chemo Starters

Dear Lisaloo, JulieMe, Wolvesgirl and all,

 

JulieMe, congratulations on retiring, it must be a nice feeling coming nearly to the end of treatment and having time to socialise. And well done on getting rid of the portocath, I dreaded having to have one of those and managed to avoid it.

 

Lisaloo I really hope your operation goes well. I found the encouraging words and advice (on what to take, but also what to expect), really great. I found having my family around and going out the days before made me calm and relaxed. It totally worked!

 

Sadly the surgeon said I must have a second operation. I was really disappointed on Thursday but I really cannot avoid it and the end result is what matters. He said it’s much smaller, still a general anaesthetic but he will only open part of the wound and I will have no drain. Also, I will go home the same day. Wish me luck, it’s on March 10th.

 

That however also means that radiotherapy will be pushed a month back. I guess it’s more time for my body to recover post chemo.

 

Stay warm this weekend, we have lots of football matches to attend with my children!

 

Love to all,

Hollyleaf

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Re: August 2019 Chemo Starters

Hi all - apologies for going "missing" for a couple of weeks.  I've been really busy!

 

Good luck for next Wednesday, Lisaloo.  I was going to suggest you may prefer to have the mastectomy first and reconstruction later, as that's what I was going to opt for (my surgeon said he could do that, although he does breast surgery AND reconstruction so there wouldn't have been a need to get two surgeons together).  But as it turned out, I only needed a lumpectomy in the end so decision not needed.

 

Sorry to hear about your problems with Zometra, Wolvesgirl.  I'm assuming that's the same as Zoledronic Acid?  I've been having that at 3-monthly intervals at the same time as chemo, so could never tell what was giving me what side effects.  I had my first Zoledronic Acid on its own on Thursday last week, and didn't really experience any noticeable side effects so it sounds as if you've definitely had a reaction.  Such a shame, but perhaps there's something similar that might be better for you?  

 

Like others, I kept my eyebrows and and eyelashes throughout the chemo - only for almost all of them to fall out about 3 weeks after my last treatment!  They've started growing back now, but mascara is a no-no as it really shows the stubby ones against the (probably 5 in total) long ones.  I'm quite tempted to pull the long ones out!  As I was able to have the cold cap throughout chemo I didn't lose all my hair, but it thinned to about 50% of what it was and the 'ice' damaged what I did retain and made it frizzy.  The new growth is now about an inch long, so I've had the existing (longer) bits styled so it doesn't look quite so mad!  All coming through grey, and I think you have to wait 6 months before you can use colour.  I might stick with the grey though, as I quite like it and it will save a lot of faff in the long run!

 

I've been at the hospital this morning for a colonoscopy (something they couldn't identify from my baseline CT scan had to be investigated) which was fine, although the 'Moviprep' - which completely empties your bowel - that I had to take yesterday was anything but pleasant.  I must admit I feel like most areas of me have been violated now!  They gave me the results straight away, and it was great to hear there's nothing to worry about.

 

I turned 60 last weekend and also retired!  So I was back for a leaving do on Wednesday last week - it was lovely to see my workmates but, for me, I want to use my precious time doing things for myself rather than spending it at work.  I'll be keeping in touch with work friends, but only socially in future.

 

I also had my portocath removed from my chest last week - lovely to get rid of that!  My ongoing (until August) 3-weekly Herceptin injections are going into my thighs so I don't really need the portocath any more... although I do wish I'd kept it for the Zoledronic Acid on Thursday.  

 

I start radiotherapy next Monday, and have already been 'marked up' for it.  I think it's going to be the travelling to and from hospital every day that will be more of a problem than the actual radiotherapy (fingers crossed) from what others have said.

 

It feels like I've hardly been away from the two hospitals I have to go to over the last couple of weeks - a bit like all the tests before chemo started.

 

It's great to hear everyone's updates.  Keep up the good work, and do let us know how you get on.  Nearly there...

 

Julie xx

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Re: August 2019 Chemo Starters

 

Hi ladies

 

Just an update from me. So I’m booked in for my mastectomy this Wednesday 4th 😬 had my pre op assessment yesterday. I am so nervous but keep calming myself down with the knowledge that you ladies have already been through this Part and have offered reassuring words. 
Holly was it Thursday you were seeing your surgeon after your surgery? Hope all is ok now with regards to your swelling. 

im still eyebrow and eyelashless but I’m sure Iv got the tiniest of hairs starting to come through.. the hair on my head on the other hand is growing like wild fire... albeit grey and fuzzy 🙄😂 

 

hope everyone is well.. looks like we’re in for yet another storm this weekend!! 

Lisa xxx

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Re: August 2019 Chemo Starters

Dear Wolvesgirl,

 

So sorry to hear that you’ve had a tea bad reaction to Zometa. It sounds really tough. We are going from one challenge to the next but we all have each other, and this is a safe space to vent all our frustrations and ask those questions that none else, except those who have been through it, understand. I really hope you can manage with the help of pain relief and hopefully the nurses next week can help too.

 

 I am so glad that also other people experienced the return of lashes and brows late, I was beginning to wonder! The accumulation of fluid is bothering me a bit, more because I am worried about it than anything else.

 

 I am keeping everything crossed for Thursday, and I will let you know.

 

Hugs to you all,

Hollyleaf

 

 

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Re: August 2019 Chemo Starters

Hello everyone

 

So pleased to hear that all are doing well.  

 

Blackcat - sorry about the flooding, we have had it here in Shrewsbury too - the flood defences mean that its not as bad as it used to be but we have friends in Ironbridge who own a business beside the river which has been badly hit this time.  I wonder how long they will go on with it to be honest.  So pleased you are enjoying being back at work full time - how wonderful!  I am sure you will sail through the radiotherapy as well - its really not too bad.  I am very much looking forward to visiting the Hebrides - we fly from Glasgow to Barra (landing on the beach), pick up a car and then spend a week driving up the chain to end up in Harris and eventually flying back out of Stornaway.  I had a very dear aunt who was from Bute and I did toy with the idea of visiting but we can't do it all.  Next time.....

 

Lisa - it will be good to get a date in the diary for the surgery - another step forward.  Re eyelashes - mine were the same as yours, hung on all through treatment and then fell out.  However .... both lashes and brows have suddenly returned - thicker and darker than before and all in the space of a couple of weeks!  I have to say I am delighted.  I have had my hair cut for the first time too - it looks a lot neater, still a bit too short to go public with but I could do - again its growing well and feels more like its old self rather than the fine wispy stuff that stayed with me through chemo.

 

Hollyleaf - well done re the drain - I am sure the fluid collection will sort itself out - reading other threads on here it seems to be something people experience.  Your appointment with the surgeon will be well timed!

 

As for me..... its been a bad week.  This pain and general unwellness has continued - to cut a long story short the thinking is I have had a severe reaction to the Zometa which has given me gastric reflux, muscle and nerve pain, weakness, shortness of breath and high temperatures.  Today I can say that the pain has reduced - am taking twice daily omeprazole and regular paracetamol - and whilst not entirely gone, I am totally washed out.  I have not driven or been anywhere for a week now, just wandering around the house trying to concentrate on things.  Its very reminiscent of chemo days sadly!  In some ways its worse as it seems to be never ending whereas at least with chemo the side effects tended to follow a pattern.  I have had to cancel a few things as I just can't manage them which is really sad including a trip to London on Friday.  I see the nurses again a week on Thursday but I think its safe to say that Zometa and I are not made for each other.  Guess I will have to run the risk.  

 

Anyway, keep safe everyone, great to hear your news when you have time to post.  Much love xxxxx

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Re: August 2019 Chemo Starters

Dear all,

 

It’s always to hear your news, I have found this thread to be wonderful, supportive and respectful. You are great!

 

I finally had my drain out last week, two weeks post surgery. It was really annoying me ... but... the fluid has been accumulating ever since and I now have a very enlarged area under my armpit. I phoned the hospital and I should monitor it but thankfully I am meeting my surgeon for the check up three weeks post surgery on Thursday. Fingers crossed, I would rather they didn’t need to drain it.

 

Regarding my eyelashes and eyebrows I have literally a handful on each eye. They fell out around the time of my last chemo and haven’t come back yet!! This Friday it will be 7 weeks post chemo and not a single new eyelash, eyebrow or for all that matters body hair anywhere! Only my hair (on my head) is coming back slowly. 

 

On the other hand, my hand nails are looking better and the pink coming through is getting bigger all the time. My hand nails deteriorated over the last two to three sessions - I think I had more than many people here, 8 rather than 6. Having said that my toenails have not been affected at all. I don’t know why - possibly because they are covered hence the UV light can’t get to them?

 

So pleased to hear some of you are back at work and some are planning holidays! I am planning on speaking to my boss as soon as I know the dates for radiotherapy, which should not be long from now.

 

Big hugs to you all,

Hollyleaf

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Re: August 2019 Chemo Starters


Hi Blackcat an everyone else. 


Blackcat it’s lovely to hear that your back to work. Iv been lucky that Iv still been able to do a few hours every week through my treatment. I have put my hours down from full time to 16 for the time being but it’s been my little bit of normal and it does take your mind off what’s going on.
There’s been a change of plan with my surgery, there finding it difficult to get a date any time soon when both my surgeons can be together to do the mastectomy and reconstruction so I’m having a mastectomy first then I’ll have my reconstruction at a later date. I’m seeing the surgeon on Monday to hopefully get a date on that. Just want it over with now. 
I haven’t lost all of my eyelashes all the way through chemo and now 3 weeks post chemo they’ve all decided to fall out! Iv got about 3 lashes on one eye and 6 on another 🙄 I hope they don’t take long to come back! Has anyone else had this happen? 
Hope everyone’s ok

 

Lisa xxx

 

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Re: August 2019 Chemo Starters

Hi to everyone on the thread,

 

I hope that you have all had a good week, and that everyone is surviving the stormy weather.  Here in York we have quite bad flooding in the city centre, as often happens at this time of year, but thankfully the river defences are working well and preventing a repeat of what happened in 2015.

 

Wolvesgirl - I hope that your chest pain is better, and that all goes well when you have the 24-hr ECG.  I understand from my oncologist that chemo can sometimes damage the heart (as can herceptin, which I am on), but that in most cases any damage is not permanent.  It’s so difficult, isn’t - we don’t really have any choice about having the chemo, not can we control the side effects it brings.  I’m interested to hear that you are off to the Outer Hebrides in May, as I am originally an island Scot (my mother came from the Isle of Lewis, and my father the Isle of Bute, where I was born).  

 

Lisaloo - I hope that all is going well with your decision about surgery and reconstruction.  You may well find that your eyebrows and eyelashes start growing again soon - for some reason mine came back very quickly over a period of about a week, and my eyelashes are now getting quite long!

 

Hollyleaf - I hope that by now the drain has gone, and that your recovery is going well.  It is such a relief to when you can move about freely without being connected to tubing.  I’m glad that your hair is coming back too.

 

Spottycotty - I hope that all went well with your final radiotherapy sessions, and that you are not too tired after all the treatments.   It will not be long until you are off to the Maldives!

 

My news is that I have just completed my first full-time week back at work, which I have thoroughly enjoyed.  It has been wonderful not to think about cancer treatments and side effects, and indeed not to think about myself at all, but to focus on what I can do to make life better for other people (I work for a charity supporting people living with dementia).  One part of my role is to run GP-based clinics, and it feels so strange to be on the other side of the desk, and for once not a patient.  I start my radiotherapy on 2 March at St James’ in Leeds, and the hospital has kindly given me slots at 5.30pm so I can leave work a little early and go straight there.  I had my second post-surgery infusion of herceptin/perjeta on Thursday at the end of the working day, and was pleased to find that I didn’t have any side effects afterwards other than a little bit of digestive upset about a couple of hours after the treatment.  By the next morning I was feeling fine and able to go to work.  I will start my bisphosphonate tablets (ibandronic acid) plus Adcal tomorrow, and am hoping that they don’t cause anything drastic in terms of side effects.  It will be a bit of a pantomime in the morning, as I know I that will have to stay upright for a hour after the tablet, take it with a large glass of bottled water, and then not eat anything for 30 minutes - plus remember to take the Adcal exactly four hours later!  I have set my Siri and Alexa to give me reminders so that I hopefully don’t mess it up. 

 

I hope that everyone will have a relaxing evening and a nice day tomorrow.  Much love and hugs to you all.

 

Blackcat xx

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Re: August 2019 Chemo Starters

Sorry, forgot to say that on Monday, when they were checking that the pain was not cardiac, they did a couple of ECGs - one showed a degree of atrial flutter (or so the doctor thought) so I now have to have a 24 hour ECG towards the end of March.  It seems never ending - I hope the chemo hasn't done something to my heart, I will ask the oncology nurse when I see her for my Zometa review in a couple of weeks.   Ho hum!

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Re: August 2019 Chemo Starters

Hi everyone, from a very rainy Shropshire!

 

It sounds like we are all cracking on with this doesn't it?  I think we have been through so much - looking back its hard to understand how tough things were at times (at least for me) but that light at the end of the tunnel is very bright and big now.  

 

Blackcat - fantastic news about going back to work full time. I have to say that if I had still been working I would have worked through radiotherapy - apart from this week with this pain its been very doable.  I know you have to travel (?to Leeds) which complicates it a bit but I am sure you will manage it fine.  You sound like you have a very supportive boss and as you say its a big step on the path back to normal.

 

Lisaloo - I hope you have had time to think through your options - like some of the others I only had lumpectomy so did not have that decision to make but I am sure you will make the right one for you.  Options are a great thing to have but sometimes you feel like you just need someone to tell you what to do!  Reconstructions are, I believe, big operations so you need to be comfortable with whatever you decide.

 

Holly - so glad your recovery has gone well, the drain coming out will be a highlight of next week and I am sure you will find moving around and getting comfy in bed easier without it.  Another step forward.....  Interested to hear that you are getting pink areas on your nails - are they very discoloured from the docetaxol?  Do they hurt and is it just fingernails or toes too?  I have one small black area on one toenail which appeared around the time I was having it but it doesn't hurt at all and the nail is intact.

 

Spottycotty - I am so pleased that your consultant was able to put your mind at ease about the rib pain although I suspect until the scan is done and you know the results you won't be totally convinced.  These guys know what they are talking about - I remember mine saying when he came to see me after the SNB that he was sure that the nodes were clear which is quite a bold statement really but they have so much experience.   You only have the five boosters to go now then?  It isn't that different, the machine is in a different place thats all but the positioning etc is the same.  Slightly less drawing on you with pens.  I got to hate it when they used felt ones as it was so hard to get off!  Still you have the Maldives not that long away - how fabulous.  I have never been there - we went to Barbados a couple of years ago (also in May) for my 60th as I am lucky enough to have family there so have been there a lot since I was a child but it was very special to be somewhere so lovely for a special day.  This May we are off to the Outer Hebrides which doesn't have quite the same ring as the Maldives but I am hoping will be nice.  We are meeting up with some friends there as well.  This time next year we will be in Australia at my stepdaughters wedding which is something to look forward to.

 

So, I finished radiotherapy yesterday, like with chemo I didnt really feel that elated and if there was the option of ringing a bell I would have declined it I think.  My skin remains pink but not sore and I am not worried about it breaking down.  I still have this acute pain in my chest - it came back with a vengeance yesterday/today but I know what it is so am just taking regular analgesia and using a warm pad to soothe it.  This morning it was awful but I forced myself to go to Sainsburys (when don't you have to) which was a good thing as moving around probably does ease it which makes me think its muscular.  As the oncology nurse said, its probably everything catching up with me - I am certainly quite weary as well but getting on with things.  I havent been to the gym or for any decent walks this week.  Anyway, onwards and upwards - next week will be better.  

 

Keep safe this weekend - sounds like another bad one.  Much love xxxxx

 

 

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Re: August 2019 Chemo Starters

Hollyleaf, you are so right by saying we are all starting to move on..

Blackcat..so pleased you are feeling well enough to go back to work full time, it was unimaginable a couple of months ago wasn’t it!!

Wolvesgirl, hope you are feeling better after your blip, sounds awful but you also sound like a strong determined lady so as I say, it’s just a blip ...

lisaloo, I’m sure you’ll come to the right conclusion regarding your surgery, I just had a lumpectomy so i don’t know that much about the options available to be honest. It’s such an individual choice isn’t it.

Im having my 15th rad session today, I’ve  found it ok really, starting to look a bit sunburnt over the treated area but it’s not sore. So 5 more to go next week then I’m done.

I saw the consultant regarding my ribs, my breast care nurse came over to attend the appointment too which was really nice, he had a very hard poke which really hurt!! He has referred me for a bone scan but said he’s pretty sure it will come back clear but just wants to put our minds at rest.... no date for that yet. I’m so pleased they listened and took it seriously but now, when I have my final radiation next week, it won’t feel like it’s over now!! Oh well, better to be safe than sorry.

I am also back at work on restricted duties, I’ve got loads of leave to take too!

We have booked a holiday to the Maldives for May for hubby’s 50th so I’m looking forward to that, I did buy a comprehensive travel insurance before booking though...just in case!!

 

Take care everyone xxxx

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Re: August 2019 Chemo Starters

Lisaloo I had not seen your reply!

 

So pleased your appointment went well. I know what you mean with lots of options. There never is a right or wrong thing to do, just one that works best for you. It’s really good that you are taking the time to think about it. A few days thinking things over and weighing it all up will help. 

 

I am so glad I am not the only one with loads more grey hair than the summer and virtually no eyebrows or eyelashes left (sorry Lisa, that’s a very sad thing to share). However just this week I noted some lovely normal pink colour returning at the base of my nails (hurray). And although there are lots of grey hair, it’s still some hair back!

 

We are all moving on....

Hollyleaf

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Re: August 2019 Chemo Starters

Dear all,

 

So sorry Wolvesgirl that you were in so much pain. It sounds so similar to what happened to me over the Christmas holidays. I had to go to A&E and have all the same scans just to conclude that it was the filgrastin! It was so painful I could not walk for a whole day. I am really glad you are better now.

 

Blackcat how lovely that you can go back to work. My boss has been so understanding and has allowed me to work from home throughout the treatment, as and when I could of course. I have still missed not going in the office though and cannot wait to plan my phased return. 

 

I went to the wound clinic and I still have to have the drain until next Monday. However the nurse was really pleased with how the wound is looking, so much so she took all the dressing off. It’s really itchy now! The exercises are really helping and I cannot wait to get the drain out. Other than that I have not needed any pain relief of any sort. Finger crossed for my surgeon appointment now.

 

Lisaloo you were meeting your surgeon, how did that go? Anyone else, how are you all getting on? Perhaps people have moved onto other threads?

 

Much love,

Hollyleaf

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Re: August 2019 Chemo Starters



Hi Wolvesgirl and everyone else

 

so sorry to hear about your reaction to the Zometa.. it sounds very scary! And Holly glad your op went ok and your home and recovering now. 
Just a little update from me Iv had my appointment with the plastic surgeon today and I’m so undecided with which option to go for with regards to my reconstruction. Its so clever what they can do but it’s just trying to think which ones best for me. There’s no right or wrong way. The surgery just differs and also recovery time afterwards. Iv a lot to think about over the next couple of days as I really need to make a decision soon.


I think your so right about the effects that all this has on our bodies. I think I thought once chemo had stopped.. give it a couple of weeks and I’d be feeling right as rain 😂 we’ve got to remember we’ve had months of this poison being pumped into us and surgery aswell. We need to be kind to our bodies and allow them time to repair themselves.

Holly I’m with you on the body thing to... I was usually at the gym 4 time’s a week and now Iv put on a stone 😫 I always knew I had a lot of grey hairs but always coloured it. Now it’s growing back a fresh I can see just how many greys I have!! It’s a lot 🤦🏽‍♀️ So a stone heavier, very grey hair and very little eyebrows or eyelashes isn’t a look I’m liking at all 🙄 I just keep telling myself it’s something for me to get my teeth into once I’m feeling up to it. 
Hope everyones ok and enjoying the sunny but fresh weather before this storm we’re supposed to get at the weekend! 

big hugs 

Lisa xxx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl and everyone,

 

I hope that everyone is doing OK.  Wolvesgirl - I’m glad to hear that you are now feeling better after the chest pains, which must have been frightening (particularly so early in the morning).  I’m sure that the nurse is right that our systems have been battered by all the treatment, and that it will take a while for us to recover.   Spottycotty - I hope that your ribs are now less painful and that the radiotherapy has been going OK.    Hollyleaf - I hope that your recovering is going well, and that you have got rid of the drain.

 

I am now almost 6 weeks after my mastectomy/ANC, and am doing fine.  I had a physiotherapy “Return to Movement” group workshop with a physiotherapist from our Breast Care Unit last Friday, and she says I have recovered almost 100% mobility and strength in my arm (which is certainly how it feels).   I had a meeting with a radiotherapy specialist oncologist from St James’ in Leeds last Thursday to decide whether or not to have radiotherapy, and again - as with my own oncologist and surgeon - I was told that it was up to me.  She said that if it had been the left side which was affected, they would have advised me not to have radiotherapy due to the slight risk of heart damage outweighing possible benefits, but as it is the right side, they were happy for me to have it if I wished. It will apparently be a “light touch”, with 15 treatments just to the chest wall.  I have decided to have it, so that I know that I have done everything possible to prevent recurrence, and I will have my planning scan in Leeds on Friday.  The radiotherapy itself will probably start in about 4 weeks time.

 

The other appointments I have had recently have all been dental ones - five appointments over the past week or so!  These are to prepare for bisphosphonate treatment, and I have been having some very old fillings removed and replaced  as they had a chip/crack in them, and might be liable to fail in the near future.  As two of the fillings were put in in 1988, I think I have had good value out of them!

 

The other news I have is that I am going back to work full-time next Monday!  I have been building up to this over the past couple of weeks by going in to the office for half a day, or working full days from home.  Being able to work has made me feel so much better, and I am so looking forward to establishing a new normal, and not thinking all the time about cancer treatments and symptoms.  I will still have my three-weekly infusions of herceptin/perjeta until November, but the hospital have scheduled these for the last slot of the day on a Thursday, and work will allow me to work from home on a Friday if necessary, so I am hoping that I will be OK.  My radiotherapy appointments will also be scheduled at the beginning/end of the day so as not to interrupt work too much.  As I have been off work for 7 months and had taken almost no leave for 2019 when I was signed off, I may also use up some of my accrued leave during the radiotherapy if I feel tired or have side effects.  We will see how it goes.  

 

Much love to all on the thread, and I hope that you are all surviving the wild weather!

 

Blackcat xx

 

 

 

 

 

 

 

 

 

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Re: August 2019 Chemo Starters

Hi Hollyleaf and everyone

 

Hope all are OK.  Hollyleaf - how are things now?  Hope you are continuing to recover from your surgery with no complications and that you will soon be rid of your drain.  It must be annoying - I have not experienced that but can imagine.  I know exactly what you mean about the journey changing your body - it certainly has for me and it is hard to come to terms with.  Spottycotty - how is the radiotherapy going? Are your ribs better?  There is someone in the July 2019 group who has experienced that during radiotherapy.

 

My initial smugness over no reaction to the Zometa was rather premature!  I awoke on Monday at 05.00hrs with excruciating (I am not being dramatic) central chest pain.  I was certain I either had a PE or was having a heart attack!  Anyway, roll forward several hours later, bloods, ecg, cxr etc and we all agreed it was the Zometa.  It was awful!  But better than being of cardiac origin.  So, I am back on omeprazole, having paractemol to manage the pain (which is loads better today) and feeling much better in myself.  The oncology nurse said something really interesting, that surgery, chemo and rads is hard but people don't take into account the effect of the steroids which is longer than we think.  I certainly hadn't.  She said that its a long hard road that we have travelled and not to underestimate it's long term effects.  Made me think as I had been very much of the view that it was all back to normal once the chemo had finished.  She also said (in case I am putting any of you off) that side effects with Zometa, if they occur tend to only happen with the first infusion and not going forward.

 

Anyway, it meant that I couldn't attend radiotherapy on Monday so I haven't finished today as planned but have one more session tomorrow.  I managed to breath hold yesterday and today even though it still hurts.  However, have walked the dog and got some of this lovely but cold fresh air which is an improvement.  

 

Take care everyone, much love, xxxx

 

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Re: August 2019 Chemo Starters

Dear Wolvesgirl and all,

 

A friend of mine (who is also a nurse) got me some ear plugs for the hospital stay but I was too tired and a bit lazy to get up and get them overnight. I’d definitely recommend them though as I was in a room of four and the snoring was loud! Thankfully it was only one night. I drank loads of water (was also told off for drinking water before the operation, silly me!) and was sick a couple of times because of the general anaesthetic. 

 

Sleeping with the drain in is annoying but then again it would be similar without because of the wound. Last night I noted before going to bed that I could not feel my upper arm, but when I rang the hospital they said that numbness is normal post surgery. I need to keep the post-surgery bra for 4 weeks and the socks for 2. 

 

I am doing the exercises and plan to go to the palati classes they offer at my local hospital. Let’s hope that the pathology report comes back positive. All in all, it’s another step towards the end of a journey. Today I noted that there’s a small patch of normal pink colour coming through at the base of my nails - finally a sign that the horrible docetaxel is leaving my body!

 

I have received flowers and chocolates from lots of people and I didn’t expect this. The thing is that I feel this journey has changed my body, and I don’t think I can wind the clock back to ‘the me’ I knew at the beginning of August. I think accepting whatever the ‘new’ older-looking me will turn out to be will be the hardest part for me. 

 

In any regard sharing this with you all, who are living this at the same time as I am, is of great help. 

 

Thank you all,

Hollyleaf

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Re: August 2019 Chemo Starters

Hi Hollyleaf

 

Just a note to say well done - it all sounds very positive.  Hope that you continue to recover well and looking forward to an update when you have time! xx

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Re: August 2019 Chemo Starters

Dear all on the thread,

 

 I had my surgery on Wednesday and all went well according to the surgeon. I was calm and only slightly worried when the anaesthetist took a few goes to find my vein but after that I was asleep really quickly. I went in at 9am and the operation finished at 1.30pm. I think I woke up around 2.30pm although I am a bit hazy about the whole day. I was discharged yesterday and had a lovely afternoon with my family. The drain is working well and I have an appointment in a week to remove it but can contact them earlier if it reaches a certain low threshold before then.

 

 I only had pain relief the day of the surgery and yesterday morning and I haven’t really needed it since. I haven’t seen the wound yet because I am not supposed to take the tight bra off. 

 

I just wanted to give a huge thank you to you all. From the smallest advice to the reassurance, it all has helped prepare me for what to expect during my stay in hospital. Having my family around and taking them sightseeing has also helped me relax and think of other stuff.

 

They are off tomorrow so I will write more once they are gone.

 

Much love to you all,

Hollyleaf

 

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Re: August 2019 Chemo Starters

Hi Spottycotty,

 

Thanks - glad I gave you something to smile about!  Honestly I am so pathetic sometimes, my husband says I am getting back to my old "difficult" self - I don't know what he means!  

 

I am so sorry your pain is worse - good that you are seeing the consultant to put your mind at rest.  Perhaps its something to do with the gym - its easy to strain something and for it to take a few days to get worse especially if you are getting more tired.  Anyway, you are seeing the experts which is the main thing.  Try not to worry and have a good weekend!

 

Much love xxx

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Re: August 2019 Chemo Starters

Wolvesgirl, you have just made me proper laugh reading about you being non - compliant! Hahaha!!! Would’ve loved to have seen her face! I know what you mean about everybody looking, I’m past the point of caring now 😂

 

Im sat in the waiting room for number 9 as I type this (so people saw my goofy grin when I read your post!) 

Rib pain today is so much worse than yesterday actually. It’s been feeling bruised when I pressed it but now it hurts if I stretch forward and when my son hugged me this morning, the area has increased too, it goes from the small of my back, up and around to my side. It actually feels similar to when I had a seroma after a surgery. 
anyway, I rang the breast care nurse who initially fobbed me off but an hour later, she rang me back and said that I had been on her mind, so she’s booked me in to see the consultant on Tuesday, bless her.  I think it was when I said I was worried it had spread to my bones when she took more notice !!

 

Hope everyone is feeling ok, I been at the gym this week but it’s starting to catch up with me now as I feel the radiotherapy is making me more tired and my appointments are at the end of the day too 😴😴😴

 

Havr a good weekend, I look forward to reading your updates xx

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Re: August 2019 Chemo Starters

Hi Spottycotty and everyone

 

Hope you are all ok on this glorious winter day.  All fine here - today was day 16 of 20 radiotherapy appointments and the first of the "booster" sessions - targeted at where the cancer was rather than the whole breast.  To be honest not much of a difference in time or experience in terms of the appointment itself which is very tolerable.  I finish next Wednesday which will be great and apparently will see the consultant in 6-8 weeks.  I was asked to see the reviewing radiographer today which was fine but I declined to let her look at my skin which she wasn't very happy about.  Its really the first time in this whole process that I have been less than compliant (!) but I am just sick of stripping off for strangers.  I can't control much of this process but that was one thing I could.  I did explain, nicely I thought,  that I feel more than competent to manage my own skin and that as at least two people a day see it at the moment (with a student its been three radiographers this week) I was confident it was not causing concern.  She didn't appear to believe me about that or the fact that I really have not experienced any side effects particularly but there we are.  I feel a bit guilty about it now!  I am normally the most compliant person ever.  She told me that side effects from radiotherapy can peak about 2 weeks post treatment. So really the time when there might be skin issues is when you have finished treatment anyway and she just said to go to the GP!  My skin is no more pink that it was two weeks ago and I have no discomfort as Spottycotty does in the ribs but I have heard that people do.  I have had the odd twinge in the breast and around the nipple - but that seems to have reduced over the last few days.

 

Apart from that, I had my first Zometa infusion yesterday - it took 30 mins all told to be cannulated and the drugs given which was very doable and so far (fingers well crossed) I feel absolutely fine.  I did take some paracetamol last night and this morning just in case but don't think I really needed to.  They give you chewable calcium tablets as apparently the drug depletes your blood calcium to put it in the bones.  Even I can manage those!  Its been two months today since my last chemo - time really flies and it feels like a dim, unpleasant memory now.  Hair growing well with the horse shampoo (!) - I am looking forward to getting it cut in a couple of weeks.

 

So less about me.....Spottycotty, how is radiotherapy going now?  Has the discomfort decreased, I do hope so.  Are you having 20 sessions too?   Hollyleaf, have been thinking of you and hoping that it all went well and your fears were managed well by the team.  Lisaloo - I will be interested in the outcome of your appointment, I don't know much about the reconstruction process.  Hope that Fridays feel a nice day for you now!   Everyone else, hope that you are continuing along the journey to recovery nicely and beginning to get normality back.  

 

Have a lovely weekend all, much love xxxxx

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Re: August 2019 Chemo Starters

Hi everyone,

 

Well it’s all go on here isn’t it! 
So pleased all the chemo is over and we are preparing for the next stages. 

I, like Wolvesgirl had my op before chemo, just a lumpectomy so there wasnt any drains for me to contend with, I enjoyed my stay in hospital actually, I went in the night before and was first on the list in the morning.
The staff were lovely, (apart from one rogue nurse, but there’s always someone who lets the side down 🤣)

I too think you will be pleasantly surprised by the surgery procedure but I understand your reservations completely.

 

Well, I’m on week 2 of 4 of radiotherapy, it’s not too bad, the worst bit is the awkward appointment times around school and the fact the clinic is running an hour late everyday by the time I get there!!

Other than that, my skin is fine for now although my rib feels bruised.
Wolvesgirl, do you have this too?? How is yours going?  

 

Im also back at work, I’m on restricted duties, so office based and I’m doing half days for a month. 
It’s nice to be well enough to go but I can’t say I’m glad to be back! Ha ha ha. 

Take care everyone xxx

 

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Re: August 2019 Chemo Starters

Hi Lisa,

 

Of course I had forgotten about you! How lovely now chemo is over for you too. I could not feel any joy when chemo finished, but last Friday I was elated that I didn’t need to have another one and my body could just carry on trying to get better. I am now in my fourth week post session and feel I have more strength although my legs are still a little sore.

 

We went out tonight for a lovely dinner and it’s just taking my mind off surgery. I also prepared my bag today as it was suggested and we are going out in the day sightseeing (as my family don’t come here often). It seems to be working!

 

I hope your appointment goes well. I will report as soon as I can.

 

Hugs to you all 

Love,

Hollyleaf

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Re: August 2019 Chemo Starters


Hello ladies 

 

hope everyone’s ok.

Holly I totally get where your coming from with being worked Up about the surgery as I am too! So your totally not being a whimp about it. I’d also like to thank all the others that have already had there’s for your reassuring words. They really have helped me. 
Im have a mastectomy with immediate reconstruction so I have an appointment with the plastic surgeon next week.
Lovely to hear how everyone’s doing.. it was so nice not having to go in to have chemo on Friday. It’s been a week since my last one now 😊

 

hope to hear from you all soon.
Lisa xxx 

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Re: August 2019 Chemo Starters

Dear all on the thread,

 

 I just wanted to say a huge thank you to all of you who have taken time to reply to me Blackcat, Wolvesgirl, JulieMe, I hope I am not forgetting anyone. If I have I am sorry, because I have truly enjoyed reading your posts. In fact, I will ‘take them’ with me and read them while waiting for the operation, I think they will be huge comfort and calm me.

 

 Thankfully my family have been able to join me, it’s so nice to spend time with them and not think of it, it’s calming me a lot.

 

It’s so nice to hear of your progress too, we are all getting closer to the end of treatment, which also brings some form of normality back - something I am sure, we all crave.

 

I will write again as soon as I can, hopefully on Thursday. Thank you again and hugs to all,

 

Hollyleaf

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Re: August 2019 Chemo Starters

Hi everyone

 

Hope all is good with you all.  Hollyleaf, I hope that the responses you have had from Julie and Blackcat have helped - your fear is not irrational - you are about to undergo something that is completely counterintuitive but it will be absolutely fine and this time next week you will be wondering what you were frightened of.  If I am honest I quite like having an anaesthetic!  Weird I know but its a strange but not unpleasant feeling falling asleep so quickly.  I have nursed all my working life and can honestly say that I have never known anyone die under anaesthetic.  I look forward to hearing how its all gone.

 

Blackcat - all sounds like its going very well.  Is Herceptin three weekly?  How fantastic to be thinking about going back to work.  I am thinking about looking for a job a couple of days a week or maybe doing some volunteering once my distance learning course is over in the summer.  Or maybe enrol on a masters......

 

Julie and everyone else - hope everything is going to plan with you too at the different stages of this journey you are on.

 

My news this week:  I am now over half way through the radiotherapy.  Its still going well, no real side effects to speak of.  I am not tired particularly but getting a bit fed up of sitting in the department every day - they are busy and this week have been running late every day.  They are fantastic though but it is just a bit tedious.  It takes much longer travelling and waiting that actually being treated which in itself is very quick.  My skin is a bit pink still but not sore.

 

I have got my first Zoledronic Acid infusion next Wednesday afternoon which I am pleased about.   I have to go and get my bloods done first (echoes of chemo).  So, all being well on the 12th Feb I will finish radiotherapy and will not need anymore treatment until my next Zoledronic Acid in 6 months.  I think I will be having a bone density scan at some point and obviously the odd outpatient appt but hopefully will be able to stay away from the hospital for a while.  Fingers crossed.

 

Something that might amuse you - I have been reading some blogs and as a result am now using a different shampoo and conditioner combination - its called Mane and Tail and its for horses!!!  Apparently very good for thickening hair and promoting growth.  Both of which are the last thing I need when my hair is back to normal but at the moment I am prepared to give it a go.  Its surprisingly nice smelling!  My husband thinks its hilarious.

 

Have a good weekend all - we are doing well!  Much love xxxxx

 

 

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Re: August 2019 Chemo Starters

Hi Hollyleaf,

 

You’re not a wimp at all - it’s normal to feel afraid of having a general anaesthetic, particularly if it’s the first time.  I felt anxious too a few days before my surgery, but on the day of the op I was totally calm as soon as I arrived at the hospital, because the staff were so reassuring and didn’t give me any time at all to worry.  I’m sure it will be the same for you too. The risks of having serious problem from a GA are extremely low.  My hospital gave me a leaflet about having surgery with a link to a website (the Royal College of Anaesthetists) which explained any risks and the care that is taken to avoid them, and I found this really helpful.  The anaesthetist will talk to you before the op and will monitor you throughout to make sure that everything is OK, so you will be well looked after. 

 

The things that helped me most were: 1) reminding myself that I didn’t really have a choice about having the surgery - it wasn’t an elective operation, but one I needed to get rid of the cancer and ultimately save my life.  So as I didn’t have a choice, there was no point worrying about it; 2) reading posts on this forum, and the Macmillan one, from people who had just been through surgery.  This gave me confidence, and I knew I could get through it too; 3) preparing early for the stay in hospital - I bought anything I needed (e.g. front-fastening pyjamas; post-surgery bras, shower wipes) and packed my hospital bag a few days before, and then did activities I enjoyed/went out with friends in the couple of days before so I would be relaxed and not rushing to prepare things at the last minute.

 

A week today it will all be over and you will be recovering (you may even be home - I was discharged at 9.30am on the day after my op, which was a mastectomy/ANC and so more challenging than yours will be).  Once you are home, you will find that you improve quickly and can do more things every day.  I just had paracetamol for pain relief, and only needed to take it for a couple of days.  The drain is a bit of a pain because it restricts how you move around/sleep,  but it is only for a few days.  If you don’t have a V-pillow and small heart-shaped pillow to support your arm, I would recommend getting both, as these have been the two items I have found most helpful (particularly when the drain is in and it is difficult to sleep/sit comfortably).  I am still using both now. 

 

I have been surprised at how quickly I have recovered from the surgery, and I’m sure it will be the  same for you too.  It is a month today since my op, and my scar looks totally healed. I have recovered almost normal mobility in my arm, and am able to do most household tasks with it although I obviously take care not to lift anything heavy.  I was also able to put on clothes which go over my head about 8 days after the surgery.  I am going out and about as normal. 

 

I have an appointment with my GP tomorrow to plan going back to work, although I am still waiting to know if/when I will have radiotherapy (I have an appointment with the radiotherapy oncologist next Thursday).  I had the first of my 14 post-surgery herceptin/perjeta infusions on Monday and this went well with no side effects other than a slight feeling of queasiness for an hour or so after the treatment.  The session took 8 hours because I had an echocardiogram first and had to be observed after the infusions since I have had a break from the drugs, but the next sessions should take only 1.5 hours and the hospital will schedule them in the late afternoon so I can combine them with work.  So I can see the light at the end of the very long treatment tunnel, and am feeling confident that I will be able to return to a more normal life - and to being useful - very soon.  

 

All the very best for the surgery next week - we will all be thinking of you and cheering you on.  

 

Much love to you and to all on the thread.

 

Blackcat xx

 

 

 

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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