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October 2021 Chemo Starters

621 REPLIES 621
nicola2610
Member

Re: October 2021 Chemo Starters

@bookish  you really have had a difficult time of it.  I’m glad you are finally reaching the end of your treatment, it’s been a long journey for you.  X

bookish
Member

Re: October 2021 Chemo Starters

So sorry to hear that Nicola. Definitely lean into enjoying the garden, and your painting!

For me, I'm maybe finally looking near the end of 2½ years of treatment, one thing after another really! Seems hard to believe it might actually end. Well, fingers tightly crossed! I've been so unlucky, really - and yet, very lucky, too.

After collapsing with sepsis in November - and thank goodness, feeling very lucky to be so back to normal after that - they stopped the docetaxel (after 2 rounds), and I started capecitabine in February. Finished cycle 7 yesterday, so could just be one more to go! I did end up with another 'moment', and have had further surgery to remove the scar tissue that was still showing cancer cells (which isn't panic-inducing at all, when you're ON chemo!?), and again to get good margins - relatively minor, though.

So now just limping towards that 'finish line', I hope, and then to deal with all the eeeek around getting my life back. Hope to get to take it all VERY very slowly, quite frankly!

Fifo
Member

Re: October 2021 Chemo Starters

Hey Nicola, I'm so sorry to hear this.

When I was at my lowest with treatment, a friend sent me a beautiful card with a sunflower on it. Inside she wrote, always keep your face towards the sun and that sounds exactly what you're doing.

I hope your meds get sorted out soon and if you ever fancy a blether, just drop me a line.

Thinking of you and sending hugs.

Fi

xx

nicola2610
Member

Re: October 2021 Chemo Starters

Lovely to hear that you are both doing well. I had metastatic cancer.  Even more odd stuff with tumour markers when results came back from the lab after surgery.  Long story, won’t go into it, but means I am on treatment for life.  Currently that means Phesgo and hormone therapy.  I did anastrozole last time for hormone therapy and found it very doable with joint pains being the main side effect.  This time I’m on letrozole and a week ago had to stop taking it due to the side effects.  Oncologist is giving me a six week break which is both welcome and worrying in equal measures.  Then it’s back to drawing board with what hormone therapy to try next.  I will be honest I have been more unwell than well since chemo and surgery.  It’s got me down at points and then they said oh we think it’s the letrozole!  

I worked throughout chemo, just 7 hours per week and from home, and continue to do that still.  On a good day I get out and have a great walk, on a bad day I end up back in bed for the afternoon.  I will get there once the meds are sorted.  

I am enjoying sitting in my garden and painting at the moment.  Weather is fantastic and the flowers are blooming so trying to make the most of it.  

 

 

Fifo
Member

Re: October 2021 Chemo Starters

Hi Lou, great to hear that you’re doing so well and I hope everyone else is too.

I completed 19 rounds of radiotherapy in May and had my 7th Phesgo injection last Tuesday. I’ve still got 11 more to go, but will finish treatment in January. The side effects are manageable - mouth ulcers, hot flashes and joint pain, but I’ve started exercising again with weights which helps a lot.

As for work, I’m still off and don’t plan to go back until September. My radiotherapy treatment really took it out of me as I had my axillary, supraclavicular, back and chest nodes irradiated. My chest wall is still very tender, but everywhere else seems to be healing well.  

I’ve also decided to take a break from teaching and just work part time at the library. Hubby will have his stem cell transplant in the next month or two, so I’ll be home and able to look after him then.   

Our double diagnosis and treatment has been a total rollercoaster and to make sense of things, I’ve started writing a newsletter called ‘Double C’ on Substack. If you or anyone else would like to have a read, here’s the link to my About page: Go to substack blog

Other posts are in the home and archive tabs.

I totally get how anxious you must be feeling about your mammogram. Mine is not until March 2023 which seems like such a long time to wait. In some respects, I wish it was earlier just to keep my mind at ease.

On a happier note, my hair is really coming on now. There’s some pics on my newsletter, but here’s a more recent shot.

   me grey hair.jpg

Unfortunately, the colour is steely grey but at least it matches my dressing gown 😄

Like you, I hope everyone is doing okay and it would be lovely to hear where life is taking you now. 

Thinking of you all and sending love,

Fi

xx

louby_lou69
Member

Re: October 2021 Chemo Starters

I'm hoping that because it's been so quiet on here that everyone is living life and treatment is mostly over.

Ive had 10 of my 18 Herceptin injections so far,  so for me treatment continues. Luckily there are no side effects and it doesn't interfere with daily life. A nurse comes out to give me the injection every three weeks which is great, no trips to the hospital. Sitting in a chemo chair on the unit wouldnt be great. 

Ive been taking Anastrozole for just over 3 months now and my side effects are joint pain, tiredness and just feeling a bit odd sometimes....oh and hot flushes!!!! How could I forget them. It's all manageable though and I'm glad to take them.

I rejoined the gym back after chemo ended and I've lost nearly 11lb just with sensible eating. I'm still going out for meals and have an odd gin at the weekend but watching what I'm eating has definitely helped. I'd like to lose another half stone and then I'll be back to my pre chemo weight. 

I went for my yearly mammogram on Thursday. I had awful dreams leading up to it that I'd got massive lumps in my boobs. I was so anxious about my boob going in the machine, my lumpectomy was 2nd August and my breast still feels strange nearly a year on. It wasn't as bad as I thought and the results will be due in 2 weeks. I'm convinced the cancer is back and although logic tells me that that is ridiculous  until I get the all clear letter I won't rest. 

I've been back at work for 13 weeks now. Teaching fulltime, which has been tiring but I've loved being back at school. I get my own class again in September which I'm SO looking forward to. 

I hope everyone is ok. I think of you all often and can't believe what we all went through - sometimes it seems like a dream, then I look in the mirror 😂

Lou x

louby_lou69
Member

Re: October 2021 Chemo Starters

@Jani62 

Ahhh I'm so pleased you finally got back to the UK. It must be so special to see your mum and family. Sorry to hear the Herceptin is affecting your heart, it's such a gamble isn't it. Let's hope things have improved for your next echo. 

Lou x

Jani62
Member

Re: October 2021 Chemo Starters

Hello everyone.

I am finally in the UK and seeing my mother. Covid restrictions and then cancer stole so much time from us both but I am so glad to finally be here.

It was a stressful journey with Qantas cancelling my direct flight just hours after I had completed the on line check in. The first I knew was when Emirates invited me to check in for my flights to London

I really hadn’t wanted to fly that route as Dubai is such a big cosmopolitan hub, but the airline staff were amazing, the passengers all looked healthy and we all diligently wore masks for 30+ hours.

My short break in my treatment has been extended as I have signs of cardio toxicity with a 9% drop in left ventricular ejection fracture, though still within normal range, and a 30% drop in GLS to below normal. Herceptin is such an effective treatment for HER2 cancer I am really hoping that my heart will recover and I can cautiously continue and even complete the course. 

So finally I am here in beautiful springtime, loving the smells, sounds and sights of the start of summer. Bittersweet times as I tidy up Mum’s house, which she hasn’t been back to for nearly six months. Incredible times as as we sit together In her sunny room not far from the beach,  and FaceTime with our family and new grandson.  Priceless! 

We fly back next week and I have my repeat echo booked five  days later. Then I see my oncologist again and we decide what comes next. 

I healed slowly after surgery: it seems I am one of those who can’t dissolve soluble sutures so they have been emerging from the  suture line for a few weeks now. My movement and sensation is almost normal. Really, the surgeons are magicians! While it has left me with a much smaller boob it really isn’t that noticeable unless I am topless, so has a very limited audience! 

I am feeling much closer to you all now we are in the same time zone.

….Have an awesome  time in USA: I totally get that you want to go and travel and then investigate.

…..Take care going back to work, out yourselves first, always! 

…..And marvel at our wonderful bodies which have been attacked and challenged over weeks and months and now start to heal a little bit more each day.

Fish and chips night this week. Pork pies for lunch. And a good cup of Yorkshire tea on repeat.

Keep well you wonderful ladies.  

Jane 

 

louby_lou69
Member

Re: October 2021 Chemo Starters

I found radiotherapy the easiest part of my treatment. I had 5 sessions too. It's quite a bizarre experience lying there while the machine moves around you doing it's invisible magic. I had a bit of redness (like mild sunburn) but nothing painful and then my skin slightly peeled a few weeks later, but the whole thing was a doddle after chemo.

I did suffer with quite a bit of tiredness and found myself falling asleep a lot though. 

I rang the bell after radiotherapy and cried all the way home, I thought I'd cry after chemo but I didn't. I was glad I rang it as it symbolised the end of my active treatment. 

Good luck x

Asharia
Member

Re: October 2021 Chemo Starters

Hi all,

It’s good to hear from you again, glad life is stating to get back to some form of new normal.  I had my operation on the 31 March, found recovery quite tough this time but now I’ve healed pretty well other than a seroma that needed draining.  I have my CT planning scan for radiotherapy tomorrow, have any of you had radiotherapy after chemo?  Only 5 days treatment for me which is a relief, if tomorrow goes well I’ll start that on the 16th.  I’ll then start on tamoxifen, we’re going to see how I tolerate that before making a decision in October on when to switch to ovarian suppression with AI.  

So hopefully by the end of May I should be done with active treatment and able to start moving forward. It’s been a long 10 months!  I’m returning to work on the 6th June, although planning for quite a prolonged phased return.  We’re going away next week just in the UK, and I’ve booked a fabulous holiday in late august to the US.  At the moment I have my one year follow up in August, and then a meeting with the surgeon to discuss the contra lateral mastectomy and reconstruction.  But I think I might move it to September.  If they are going to find something in the scan I want to be able to enjoy one more really nice holiday before  diving back into treatment!

 

nicola2610
Member

Re: October 2021 Chemo Starters

@louby_lou69  Lovely to hear from you.  I’m glad life is heading back to normal for you.  I’m sure you will get some answers about the little niggles that you have.  I was on anastrozole for 7 years and I found the same, that once I was moving around it really eased the stiffness in my joints (mostly hip joints for me).  It got easier over the years but still found a good walk each day helped lots.  

I finally had my surgery on 31 March. It’s all healing well but still some fluid there, but it’s definitely getting better.  I’m now using insulin!  That is causing me some worries and I’ll admit was completely the straw that broke the camels back for me when I was put on it for diabetes.  Getting used to it and reduced the amount hugely.  I’m hoping I can come off of it eventually but will see.  They think levels were so high due to steroids in chemo, stress of surgery and metastatic diagnosis etc.  I feel sorry for my poor body.  I just want to feel well enough and confident enough to get back to some jogging, but at five weeks post op it seems that is a little out of my reach just right now, but I’ve not given up.

I have an oncology appointment on 6 June so that they can finalise what meds I will be on and for how long.  Definitely need hormone therapy and would like that to be anastrozole as I found it ok last time, but think it will be letrozole this time for me.  Hoping they don’t want to do some low level chemo for the next year, really don’t know how I’m going to accept that but hey ho I’ll work it out when I get there I’m sure.

my hair is growing back quite thick.  Husband had to put the trimmers over it as it was looking like the O2 stadium with odd hairs going randomly mad with growth spurts and once the sun hit it they were really obvious 😂 so he put a light trim on it and evened it all up.  It’s very very grey!  

 

 

louby_lou69
Member

Re: October 2021 Chemo Starters

Find myself awake at 5am so decided to check in here.

Hope everyone is doing well whatever point you're at, surgery, radiotherapy or chemo still.

My life is pretty much getting back to normal now. I'm back at work and teaching more each week. I'm enjoying being back and using my brain. I'm wearing my wig but I hate it and once I'm in the car and away from school it comes straight off. My plan is to ditch it in the summer and go back to school in September with no wig. I only wear it at school now anyway. Looking forward to going blonde again when I can colour my hair in August.

Im into my second month of taking Anastrozole. My joints are definitely stiffer but once im up and moving im fine. Im exercising at the gym 2-3 times a week plus walking whenever I can, just hoping I can keep up with the gym once im back at work fulltime. 

My blood pressure is up quite a bit, I do suffer with high BP but it's usually well managed with medication so I'm going to the doctors to get it checked out, I know that Anastrozole can cause it to go up. Im also suffering with feeling breathless, particularly when walking up hill.I'm asthmatic too so not sure what's going on there. My latest heart scan was normal so in know it's not that.

Other than that I'm feeling ok. Eating well, trying to lose weight but it seems a battle at the moment. My hair is growing back great and I'm loving having eyelashes and eyebrows again.

Hope everyone is doing ok 

Lou x

joeyhazza
Member

Re: Lymph node results

Hi

I had 6 nodes removed during my mastectomy as one of them that was swollen on the scans was biopsied and showed cancer cells.

Because 4/6 were positive I had no choice. I had 8 rather than 6 chemo sessions.

my recovery, I have to admit, is easier than I expected. I worked incredibly hard to regain full movement after the mastectomy and I was so disappointed that I would lose this again. My shoulder has been good and hasn’t frozen, I had quite a bit of fluid draining after surgery but have had no fluid build up since. Pain is only when doing physio exercises as I have slight cording under the arm. I had that last time though too and it went away. I’m being super careful to not overdo it but am using it as advised.

Im three weeks post op and really am feeling good with this one. Haven’t needed painkillers for a couple of weeks.

So far so good anyway! If anything it’s made my recon feel a little tight again.x

jules_n
Member

Re: Lymph node results

Hi @joeyhazza , thanks so much for posting this info. The scans I had post mastectomy identified a large axillary node, which apparently developed after my surgery. It was decided to start chemo instead of having Node Clearance, and I’m now halfway through my 6 cycles. The ultrasound scan I had this week shows a good response, and the node has shrunk right down. But those pesky cells could obviously still be there, so I’m even more determined to push for surgery once chemo is finished. I understand that ANC surgery has potential complications, has your recovery been straightforward? Best wishes, thanks again, Jules X

joeyhazza
Member

Lymph node results

Hi all

I saw my consultant last night for the results from my lymph node clearance. Out of the 12 remaining, only one showed any sign of cancer. It showed that it has been affected by treatment but was still live so he said it is a good job we removed it. So out of all 18 removed, in the end 5 showed active cancer cells.

Im amazed that my 8 rounds of chemo didn’t kill it off in that lymph node.

Anyone else had similar? I’m seeing Oncology again next week for next steps with radiotherapy.x

Asharia
Member

Re: Peace of mind genetic test

I certainly understand the “what ifs”.  I went through a similar discussion with my new geneticist (who is completely independent from the first as she’s private and in a different area), but she said what they tested for 10 years ago was within the bounds of what would have been considered clinically reasonable at the time and therefore I would have no case.  It was worth the discussion though to put my mind at rest and get some closure.  Good luck with whatever route you choose, starting with the investigation through PALS should hopefully give you some answers. 

In terms of the tests yes, there are a lot more than BRCA these days. My latest test was BRCA1, BRCA2, PALB2, CHEK2, ATM, RAD51C and RAD51D.  Some are relatively new and have less known about the risks, but they have all been linked to increased cancer risk.  BRCA is linked to triple negative breast cancer, but the others aren’t necessarily.  I’d recommend some genetic counselling before you go down the testing route, it’s really useful to talk through what a positive test would actually mean for you in practical and emotional terms.  

On a sunnier note, had a lovely walk by the river this morning.  Managed an hour and a half and really enjoyed it.  I am tired now, but it’s a big improvement.  Had my drain out yesterday and while it posed a lot yesterday afternoon it’s nice and clean today, so that’s much more comfortable now as well.  Just have to hope the extra week of drain will keep the serous swelling away.  

hope you’re all having a lovely Easter weekend,

Ash xx

joeyhazza
Member

Re: Peace of mind genetic test

Hi @nicola2610 

Yes, the consultant suggested getting a paper trail started with PALS last night so I will get onto that next week. Hopefully, if they’ve already investigated some elements, it should be on file already so shouldn’t cause them any further work.

In my own mind I just think we had caught it in 2018 or that I had the lump removed when I was 15.

I think that’s what will be looked at, could steps have been taken to avoid cancer itself or the level of treatment I’ve had to have now etc.x

joeyhazza
Member

Re: Work & Covid

It was my breast nurse who suggested the programme because I was asking if she knew of any trainers to help me build a programme who specialised in cancer recovery. I was scared that if I went to a gym, they wouldn’t know enough about lymphoedema risks even if they said they did.

Might be being really unfair there but I didn’t want to do something that brought it on, thinking it would be ok.

x

joeyhazza
Member

Re: Peace of mind genetic test

Hi

I wasn’t aware of the different tests so I’ll look into that thank you. Can they detect more than BRCA then? Quite scary really.

No, I’ve never been biopsied prior to this time in 2021. I went in 2018 as the lump I had from the age of 15 had changed in how it felt and my breast was so sore I couldn’t hug my kids. They scanned it, said it hadn’t changed and gave me HRT. In 2021 it’s hormone fed cancer!

Anyway, will see what happens. Like I say, I have no appetite for it now as I’m just wanting to get better.

x

Asharia
Member

Re: Work & Covid

That rehab program sounds fabulous!  I’ll have to look and see if there’s something like that around here.  My physio is going to put together a program for me to get back up to speed on running and weights, but it would be great for motivation to have a group program.

I think you’re right that a good regular everyday routine is vital.  Good varied diet, and regular exercise including resistance to help maintain our bones with the hormone suppressants.  And then enjoying whatever we want on special occasions!  They key for me is just keeping an eye on the frequency of those “special occasions “ and making sure they don’t become daily occurrences 🤣

nicola2610
Member

Re: Work & Covid

@joeyhazza  The rehab programme sounds brilliant.  Wish there was something similar near to me.  I wish there was a national protocol programme for patients to be referred to if they want.  But we’ll done, it’s a great positive move forward. X

nicola2610
Member

Re: Peace of mind genetic test

@joeyhazza what a worry this must have been/still is to you. It’s good that they are already taken the initiative to undertake their own investigations and in some ways would hint that they are not just sweeping it under the carpet.  If not already, perhaps it would be a good idea to make yourself know. To the hospitals PALS team and explain the situation to them and ask to be kept informed at all stages.  Explain the issue around genetic testing as they may well see it as part of what the outcome finally concludes at.  You can raise it as a concern or alternatively a complaint with PALS.  A complaint is more serious for the hospital but as they are already investigating you may wish to raise it as a concern and then as the process goes on and if you feel it more appropriate you can ask them to deal with it as a complaint.  

Asharia
Member

Re: Peace of mind genetic test

Hi @joeyhazza ,

Thats a really difficult call.  I’m not sure why being hormone positive makes you ineligible for the test.  I have hormone positive, as did my mother, and I have been found to have a genetic mutation.  For me, knowing that was beneficial as it has made the choice of treatment very clear, I have a 50% chance of cancer in the other breast so will be having a contra lateral mastectomy.  But to be honest, given my family history I already kind of knew, so in a way it was a relief to have it confirmed.

If you do pay for a test, make sure it is a comprehensive one and not just BRCA.  My mutation is one of the less common ones, and when I had a test 10 years ago I was given the all clear because they only tested for the common ones.  If I’d known then about the mutation I would have been much more rigorous about screening and might have found this lump earlier before it spread to the lymph nodes.

I’ve no idea about the impact on a legal claim.  I think you might need to speak to a lawyer about that, but I would have thought the case would depend on what was known and reasonable at the time rather than on any retrospective explanation. Did you have a biopsy in 1999 or 2018?

 

joeyhazza
Member

Re: Work & Covid

Good morning

Im going to sign up to a rehab programme through our local football club which offers gym sessions and classes ran by PTs that are trained in cancer rehab. Just waiting to heal from this surgery but then I’m on it!!

Ive completely altered how I eat (bar the odd treat day which I will get better with) as I’m concerned that even though I don’t drink and my weight is good, the effect of sugar on cancer seems not so good and I have always had a sweet tooth. It was my vice  so I’m trying to break that. Plus eating less processed meats and red meat, more fruit and veg etc. I do feel like I’m giving up a lot and am just hoping it’s going to help.

It really sounds like you’re have a good routine in place and that’s the key I think isn’t it? That’s what I need to do too.

Have a good Easter weekend. I’ll be drooling over Easter Eggs!x

joeyhazza
Member

Peace of mind genetic test

Hello all (I’ve just posted this somewhere thinking it was in here and I can’t figure out what I’ve done 😂)

I saw my consultant last night for him to check my wounds after surgery and take out my drain (he didn’t want to but said my skin was getting sore under the bandages).

I mentioned to him that he had said ‘in passing’ that I should consider having the other breast “done” in the future and asked what he meant.

So he said that he was referring to preventative surgery. I didn’t qualify for the generic test for the faulty gene at the beginning because I was hormone positive but he said that there’s still a 10% change that I could have it so I have the option to pay privately for the test. Then if it’s negative, I have peace of mind, if positive it could set the wheels in motion to take preventive active and I know for my children.

He said it doesn’t need to be now as I need to get through this treatment but to think about it for the future.

What would you do? The costs look to be a couple of grand max but, for some background, there appears to be a cock up from them in the past in 1999 and 2018 as I had the first lump since the former and it changed significantly with pain in 2018. They’ve already launched an investigation and independent review before I’ve even complained. So part of me worries that all their suggestions are trying to mitigate any risk from a potential claim situation. I don’t have the appetite for all that at the moment though as I’m knackered. But, it sounds like in 2018 they’ve missed this, hence the spread to the other side and into the lymph nodes.

x

louby_lou69
Member

Re: Work & Covid

I re-joined my gym after chemo had finished and I've been 2-3 times a week, plus a bit of walking in between. I've also been consciously watching what I'm eating, not dieting but watching my portions and making sensible choices and I've lost 6lb. It's taken me 8 weeks but at least it's heading in the right direction. I've been taking the Anastrozole for 2 weeks now so I'm praying it doesn't make me gain weight. 

I'm tall so can carry a bit of weight but I don't like how my body feels and looks, plus I know keeping your weight down is one of the ways to keep reaccurance from happening. I'd like to lose another 10-12lb if I can. 

I bought fabulous, new bikinis back in Jan/Feb 2020 for a holiday to Mexico in the April but of course the holiday was cancelled and now the bikinis don't fit me. I'm determined to wear them in August when we go to Greece.

Good luck wedding dress shopping- so exciting!

joeyhazza
Member

Re: Work & Covid

Hey. It sounds like you’ve done really well and your body will remember what to do when you’re ready to start back at it.

Im 39 so not far off where you’re were. Just want to keep ahead or on top of it all so I’m not chasing my tail so to speak.x

nicola2610
Member

Re: Work & Covid

@joeyhazza  Walking the dog will help.  I walked our one twice a day for an hour at a reasonable pace.  At the moment we are not quite back to that although he doesn’t miss out on his walk as Hubble takes him or neighbours have taken him with their dogs.

I got into Park run.  It was mostly park walk the first few weeks before I got a bit more confident and gradually I built up more running and less walking of the 5k and then before you know it you can run more and more.  I was 42 when I was put into a chemical induced menopause and felt that my body had been fast forwarded and was keen to try to help my body with that.  Before chemo I looked forward to each park run and my midweek runs I did on my own.  My body feels battered at the moment and it feels like I’m a way off getting back to it, but I am determined to get back to it and start enjoying all the benefits both physical and mental that it brings to the table for me.

joeyhazza
Member

Re: Work & Covid

Thank you @nicola2610 

This is reassuring. I’ve never really had to work hard to maintain my figure but then I suppose I’ve hit chemical menopause much sooner than I would have naturally so perhaps my body is just doing what it would have done in another 10-15 years.

The wedding is giving me a positive focus. I’m glad I have one and it’s one I can share with the family so we are in it together.

I do eat healthily, don’t drink but am continuously fighting my sweet tooth. I didn’t exercise other than walking our dog before cancer, although during the first lockdown I did do a daily spin class.

x

nicola2610
Member

Re: Work & Covid

@joeyhazza  To give you some hope I was on anastrozole and zoladex for 7 years and managed to lose weight.  Lots of exercise and watching what I was eating helped but the medication doesn’t necessarily mean you will put on weight.

 

how lovely to have your wedding to look forward to.  I got married in September 2020 and although it was a very different wedding to what we originally planned due to covid, I loved every minute of it, the day just goes so quickly.  

joeyhazza
Member

Re: Work & Covid

@nicola2610 

Sending you a big hug! I’m totally with your in this but I can’t imagine having to understand diabetes as well.

My weight is slowly creaking up and my body shape has changed. I’m wedding dress shopping in July and with the Zoladex switching off ovaries and my impending start of hormone suppressants I dread to thing where I’ll be by then both physically and mentally.

Im going to start a cancer rehab programme when fit enough that is provided by a local trust and just hope I can balance that with a return to work.

x

joeyhazza
Member

Re: Work & Covid

Also, I couldn’t wear a bra after my mastectomy with reconstruction back in September. Took me a long while to get back in one and now I’m not in one again!

joeyhazza
Member

Re: Work & Covid

@nicola2610 I cannot imagine the drain doing that!!! Mine hasn’t hit much space left in it but as I’m going in tomorrow, I’m hoping the just whip it out!

 

I’ve been told 4-5 weeks for lab results this time!

nicola2610
Member

Re: Work & Covid

@joeyhazza  I’ve had a day of feeling down in the dumps.  Had a little cry this morning.  Not like me, but think I’ve found everything with the diabetes diagnosis, using insulin, being told this morning that the Kerr ozone the oncologist wants me on will likely increase my glucose so not easy to come off insulin use, and I really need the letrozole and probably for 10 years.  It all seems so overwhelming.  Feel a bit brighter this evening after discussing with husband.

 

nicola2610
Member

Re: Work & Covid

@joeyhazza @louby_lou69 @Asharia 

When I had my lumpectomy eight years ago I had a drain, which promptly stopped draining when I went home later the same day and when I returned to the hospital all surgeons were in surgery and just sent a message out to remove the drain.  I also had full node clearance.  

this time I had a mastectomy and an area on my back which is a metastatic  spread removed and no drain whatsoever.  Surgeon said they caused as many problems as they solved and as a Trust they had stopped using them.  I’m a little swollen but can hear and feel fluid draining and then it gets absorbed by the body.  For me this is easier than the drain, particularly when it had backed up so much is burst off in the car park last time!  The poor people who saw that..

 

I was due to get my lab results today but they are not yet back from the lab.  Covid has meant staff shortages and so they are slightly behind.  Appointment booked for next Wednesday.  My mastectomy area is so bruised, but not painful just a bit of discomfort.  The area on my back is a different story and I’m very aware of it.  Cannot wear a bra not even a surgical support bra as any straps go straight across the area I had surgery.  Not quite braved looking at the whole of the front and back area as a whole yet, and still have dressings on both.

 

louby_lou69
Member

Re: Work & Covid

@Asharia 

My oncologist has put me on Anastrozole as she determined I'd probably gone through the menopause as I'd had a hysterectomy in 2017 and the fact that I'm 53. I didn't have a blood test or anything so she's basically just guessed.

I bought some Watermans shampoo and have been using it since chemo finished (the bottle has just finished) I've also been taking Biotin supplements - I don't know if either have made any difference to be honest but it can't have hurt. I shan't carry on with either of them though once they've run out. 

Goodness knows how the hair growth will go. I follow a few people on Instagram who are a year on from end of chemo and their hair is a daily nightmare as they try to grow it out. Just wish we could press a switch and it revert back to how it was. 
Lou x

Asharia
Member

Re: Work & Covid

Yes, I suppose it’s better in the drain than in a seroma or in the arm.  I’m slightly sceptical though although I have no good reason to be.  But after my mastectomy I was still draining well over 50ml when they took it out after four weeks, and I had zero problems with seroma or swelling afterwards.  So part of me wonders whether it’s just what my body does.  

I’m doing ok with the exercises, still sticking to nothing above the shoulder at the moment so the real work starts next week when I start working towards full extension.  I can feel that the side lifts are going to be the ones that pull this time.  I have an appointment with the physio in two weeks to see how I’ve got on and do some manual release if I need it.  

I’m sorry you’re feeling flat.  I was so scared before getting the results, so I know exactly how you’re feeling about those.  I hope you get good news tomorrow so you can relax more over Easter.  It’s really not long since surgery so I’m sure that will be having an impact still too.  Take care of yourself and get lots of rest.

joeyhazza
Member

Re: Work & Covid

I’m at 40ml today. Was 45ml yesterday and was told as soon as it hits under 30ml or can come out. Part of me thinks I’d rather it be going in the drain though than collecting in the arm somewhere. How are you getting on with your exercises?

Im just feeling quite flat and lethargic but I’m sure I’ll pick up. It’s only a week since surgery. I’m really, really praying results are clear. I know they can see where cancer has been as well, but I’d love it if they came back as majority clear and never had it either. Just something in my mind that would make me feel like it hadn’t travelled so far then.x

Asharia
Member

Re: Work & Covid

I’m 6 weeks post chemo as well, so there’s certainly something about that timing and lashes.  So you’re should be tentatively poking out soon!  Not put anything on my head but it’s feeling much less sensitive now, I can use a normal hairbrush again which is why I bit the bullet with the hair appt. 

Asharia
Member

Re: Work & Covid

I’m sorry you’re both struggling with hot flashes and sweats as well, it really sucks!  As you say, it’s duvet on, duvet off and repeat all night.  

@joeyhazza I’ll keep my fingers very much crossed that you get clear results as well. I’m with you on the drain, mine is still in from the 31st but they’re removing it tomorrow regardless of flow thank goodness.  It has slowed to about 30ml so Should hopefully be ok.  

really odd the consultant randomly mentioned the other breast.  They’re normally not that keen on doing much on the other side unless you’re very uneven.  I have decided I will be having the other one removed as I have a high genetic risk, but not until I’ve had a good break after radio so probably next year.  

@louby_lou69 i thought you were going to be starting tamoxifen, have I got that mixed up?  I was told I couldn’t take fluoxetine with tamoxifen, and I was meant to be starting on that soon.  Although with the Lancet study that came out in December and the menopausal symptoms I’m going to talk to the onc next week about an AI instead.

So glad you’ve got over covid and hope you have a fabulous time in ulverton, it’s a lovely place up there and I can’t wait to go.  We’ll be in ambleside this time as I want to make up for lost time going out to eat😋

I noticed tiny little eyelashes last week, I was so excited 😆. they’re now a couple of mm long and even at that length they make a real difference.  Eyebrows are coming on nicely as well, although still patchy and uneven.  I’ve finally made a hair appointment for next week as well, so hopefully by the time I go away I’ll be starting to feel a bit more like myself.  

 

joeyhazza
Member

Re: Work & Covid

I’ve just looked and I am five weeks post chemo. That’s crazy that my last one was five weeks ago!

Ill keep an eye (😂) on my lashes then in the next few weeks!

Has anyone put anything on their head hair to encourage growth?

louby_lou69
Member

Re: Work & Covid

@joeyhazza 

I noticed my eyelashes growing 6-7 weeks after my last chemo. I'm now 9 weeks post chemo and have a full set of lashes and my eyebrows are 90% back. I still think my top eyelashes have a bit more growth left yet but I'm loving that they're back. 

joeyhazza
Member

Re: Work & Covid

Hi @Asharia 

I’m waiting on results now having had my lymph nodes cleared out last Wednesday. Pain isn’t anywhere near as bad as the mastectomy and reconstruction but I think I still had a lot of numbness from before. I am tired though.

Im so glad you mentioned the hot flushes. I feel like they have increased since I’ve finished chemotherapy. I’m not sweating though so I’m literally going from burning hot inferno inside to shivery at times. Very frustrating trying to get layers on and off when still sore and having a drain in! The drain wound actually causes me more grief than anywhere else at the moment. Hopefully getting that out tomorrow but still draining 40ml as at 6am today.

I need to ask the consultant tomorrow but he threw into a very brief check on me last week on the ward that I may wish to consider having the other breast done in the future. I was blindsided by the and need to ask why. Is it cosmetic or preventative?! My results were oestrogen and progesterone positive so not HER positive. Very confused. But now it’s put it in my mind that he thinks I should have the other done. I’ll probably go for the nipple tattoo once I’m able to. Guessing that will be a long way off though.

radiotherapy will be the next hurdle. Then I just want to relax, get back into work and get my hair growing as fast as possible for our wedding! Still no movement on the eyebrows and lashes but it’s early days.

x

louby_lou69
Member

Re: Work & Covid

@Asharia  Sorry to hear you've struggled with this operation.

I too have struggled with night sweats and my GP has prescribed Fluoxetine which I've been taking for 4 weeks now, I still get warm in bed and the quilt does a lot of on/off but the sweats do seem better.

Covid has now gone and I feel I got away with it lightly really. 

We're off to the south Lakes for 3 nights over Easter, staying near Ulverston in a quaint little b &b, hoping to do some walking and have a few nice meals. 

Hope everyone has a lovely Easter break x

Asharia
Member

Re: Work & Covid

Sorry to hear about the covid, hope you both feel better really soon.  It’s the last thing you need after all we’ve been through, but I guess we all have to get it at some point.  

I had great news this week that the 15 additional lymph nodes they removed were all clear, so a total of 2/18 positive (including the three sentinel nodes they removed pre chemo).  So either no further spread or the chemo did it’s job.  I am struggling to recover from this surgery though, much more pain and fatigue than the mastectomy. Still hoping to go up to the lakes in May, and then should start radio soon after.

I have also been suffering from terrible hot flushes which have ramped up since my periods stopped in December.  So much so I’ve started venlofaxine this week to try to control them.  I think it’s working a bit, still getting the flushes but the sweating is less intense especially at night, previously my top and sheets were regularly soaking wet. I assume its due to medical menopause, not sure if it’s permanent or not. Anyone else suffering in a similar way or also gone into menopause from the chemo?

@joeyhazza, sorry you had to lose the nipple.  In terms of options one of the other ladies at my hospital has a 3D tattooed nipple. They look really fantastic, you certainly couldn’t tell it wasn’t real from looking and it matched her other one almost perfectly.  Clearly they are flat to touch though, if you want the shape I think you can also have nipple reconstruction if that’s what you want.

hope everyone has a fantastic Easter, any fun plans?  I’m looking forward to a lovely pub lunch with family, haven’t been out for ages.

Ash xx

nicola2610
Member

Re: Work & Covid

@louby_lou69  I am on day 8 of covid.  Coughing has mostly stopped but the fatigue is dreadful.  I was up for a few hours this morning then back to bed for a sleep and woke up a few hours later but still tired and frankly could just go back to bed but trying to keep myself sat up for a while.  Who needs this after all we have been through! 

I hope you start to feel better really soon.

joeyhazza
Member

Re: Work & Covid

@louby_lou69 I can only imagine the covid symptoms. How did it feel to be back in school? I still have no idea when I’ll be back.

I have my physio exercises that I’ve been doing and will be under the physios to get the arm back ready for radiotherapy. On a bit of a schedule to get movement back in six weeks. Took me a while after the mastectomy and reconstruction to get full extension so I’m really hoping it’s easier this time round. I had six nodes out before but needed the full clearance after those results. In hindsight I think I should have gone straight back into surgery rather than doing chemo first.

I hope you start to feel better quickly.x

louby_lou69
Member

Re: Work & Covid

@joeyhazza 

Glad your operation was a success. I only had 3 lymph nodes out so didn't do too badly with the exercises. A couple of my friends who had full clearance have had to have physio so that's something to bare in mind. 

I seem to wake up with a different symptom each day, this morning my ears are hurting. Covid can just bog off now!

joeyhazza
Member

Re: Work & Covid

Hi @louby_lou69 

Sorry you’ve caught covid but at least it’s mild for you so far like you’ve said. Make me feel a little more confident about the outside world once I’m allowed back in it.

I had my lymph node clearance on Wednesday evening and got home yesterday. Had wonderful care in the hospital and, except from a blip trying to find a vein before starting, all seemed to go well. 

Struggling with the physio exercises at the moment though. Feel like a ‘twanging’ behind my shoulder when I do them and I don’t really know why 😬

Back on Thursday for check up, drain out if it’s not out by then etc. Then I just concentrate on recovery prior to radiotherapy starting.

I had my nipple removed from my reconstructed breast so will be looking at a different option in the future if anyone has any recommendations.

x

louby_lou69
Member

Work & Covid

So I went back to work last Monday. I only went in for 3 hours and did a lots of planning and preparation ready for the new term. My partner tested positive for Covid on the Sunday so we attempted to keep apart (easier said than done). On Wednesday I went into work again, I started feeling headachy and had a sore throat but still tested negative. On Thursday I finally tested positive so couldn't go into work on Friday morning.

So I've worked from home.I've not felt too bad with Covid, it just feels like a cold and I certainly felt worse during chemo.

Luckily we've both had it at the same time and our plans for a break in the Lakes over Easter can go ahead.

Hope everyone is ok 

Lou x