@salbert well done getting through another procedure. Another step on the way to recovery. At least knowing the lymph nodes are removed means hopefully no more surgery for you and onwards to next steps.
I am the reverse. Chemo just finished. Hoping for some physical recovery over the coming weeks and then surgery.
So here’s to a weekend of recovery for us both. I hope you have a nice one with less worry than last weekend.
Hi @salbert, I’m pleased to read you are the other side of surgery. How are you feeling? My advice is to keep taking the painkillers as long as you can/need them without concern. I’m 5 weeks post losing all my left armpit nodes & only just feeling more ‘normal’ again and even that I say lightly. Recovery wasn’t linear by any means!
Sending pink love.
X
@naughty_boob MY DRAIN IS OUT! HALLELUJAH! That was highly unpleasant and I don’t remember anything hurting as much since childbirth.
@frazzledmcsazza Thanks. It’s true, it’s another tick. I pray they have got it all out this time. I’m getting very bored of watching tv. Problem is I have literally been confined to bed since Tuesday. I had a bath today and it was heavenly. So glad to hear your chemo is done. That must feel good. Here’s to a speedy recovery for us both.
@suedot My goodness, I’m glad you say that about the armpit nodes because it means I’m not imagining it. That was the worst surgery yet by far. I feel very washed out and low on energy. I guess that this year is all about beating this horrid cancer and pick up again once it’s all over. I have to believe that I will come out the other side although I know that my scan results are due to be discussed at the MDT meeting on Monday so I guess I will hear about those in the coming week and to say I am crapping myself is to put it mildly.
Thanks for the pink love. I am sprinkling it liberally over you all too.
Sal
x
Hi @salbert,
Yes, it was painful at first and was my first ever surgery, first general anaesthetic, first night in hospital other than for childbirth (which is somehow different). I had lumpectomy at the same time, so 3 dressed areas to start with. As you say the drain was unpleasant, especially to sleep with at night.
I guess you have been given the exercises and maybe had them before for previous surgery. I overdid mine too early and paid for it for the following days. It’s humorous to say I am now literally ‘climbing the walls’ every day. I am determined to get full movement back in my left arm to match the right and extremely impatient! This weekend I’ve started applying Bio-oil to the scar too.
I’ve not let on here before, but I’m a pharmacist, so be it scar improvement, painkillers or moisturiser cream for radiotherapy, I’ve sold, talked about and dispensed the stuff for 30+ years, just not had to apply them to my own body before which is a whole new ball game 
.
Oh and I’ve now started the much talked about daily hormone blocker ‘letrozole’ as I am E2+ve as well as HER2 +ve.
Next stop radiotherapy! Monday’s job is to chase why no CT scan appt has been issued 
which I apparently have to have before I start.
Xx
@suedot I currently have 3 dressed areas too. Lumpectomy, lymph node removal and where the drain was. Bless my husband, but he asked this morning if I was worried that we hadn’t been having sex since my 9th November D-Day - (Diagnosis Day)! I explained that with one surgery a month since then and constantly being in dressings, surgical stockings and surgical bras, it was the furthest thing from my mind right now!!! Bless.
I have started the gentle starter arm exercises (again) and will continue with them as I want to get as back to normal as it is possible to get. I had to sleep on my husband’s side of the bed whilst I had the drain in as it was on my right hand side. Last night I was able to return to the left hand side of the bed and it was wonderful. Like welcoming back an old friend. I never want to sleep on his side of the bed again as now it has an association with the drain days.
I’m not sure you should have mentioned being a pharmacist. It’ll be “Sue! What can I take for this? Sue! What can I rub on that?” You have already prompted me to buy some Bio-oil.
@chellebelle Thinking of you for Tuesday and praying it all goes smoothly. Keep us posted.
Sal
x
I’ve had to go cold turkey on hrt and now feel horrendous. Thanks for mentioning that I don’t feel so alone now. Still don’t know how to feel better again but feel happier it’s not just me feeling crap.
Thank you. If be lying if I said I wasn’t nervous. I thought I’d have a call from the team before I went in but I haven’t yet so just gonna hope for the best. I’ve no idea what my treatment plan will be yet…I guess I won’t know until after the surgery results.
@clobo1 we get it. We all get it. Trying to pretend that everything is normal when your entire world has shifted on its axis is impossible. Life is made up of moments and the way I see it is that I try to get as many good moments as I can right now whilst knowing that it is bloody hard and that the knowledge of cancer is always lurking at the back of my mind, ready to shout out loud in my face just when I manage to think about anything else for a second.
Thank goodness we have each other. Everyone knows exactly what you’re going through and let’s not sugarcoat it. It absolutely sucks.
I have not been able to wash my hair since Monday because I have been stuck in bed with the drain attached which was removed yesterday. Today, my best friend washed and blow dried my hair for me and I found myself smiling, which I remarked upon because I realised how infrequently I have smiled of late. But I consider my ‘blow dry smile’ a minor triumph.
Hang in there, @clobo1
Sal
Xx
@chellebelle of course you’re nervous and I was crapping myself too for my first op. Now that I’ve just had my fourth I don’t even bat an eyelid. I see the same people every time and it’s good to remember that they do this all day every day and are really relaxed about it all in the best possible way.
I know that you will be fine. We are here rooting for you and will see you when you come out the other side.
Xx
Thank you so much for your reply. That is just so exactly how I feel.Hope you feel better soon. Sounds really silly but sending hugs 
@clobo1 It doesn’t sound silly at all. I love hugs and I got yours. Thanks! I hope you can feel mine hugging you right back. It’s a great big bear hug. X
Hi @suedot
It’s funny how different cancer centres do things in different order. I was told I couldn’t start Letrozole until I’d finished radiotherapy, whereas you have started before.
I noticed on the leaflet I was given on Letrozole from the radiology department that one of the side effects can be low white blood count, which could me immune problems on top of Herceptin. I asked about blood tests to check but they just said it’s up to the GP. It’s very disappointing that even though I’m still on targeted treatment Herceptin the cancer centre seem to have discharged me to the GP. I am due Zolendronic acid soon as I have some ongoing dental work to complete as it couldn’t be done before chemotherapy. No one explained the discharge. I got a letter saying my Herceptin is being done by a private company in the home. I thought I would be under the cancer centre until Herceptin completed.
I started the Letrozole last Wednesday after my last radiotherapy and have already noticed hot flushes in the day time, which I had not experienced before. My flushes/surges are usually between 7pm and 7am, which affects my sleep. Consultant prescribed Zopiclone sleeping tablets for 3 times a week to help get better sleep, now GP want to stop prescribing. I’ve looked into the other drugs that can help with flushes but can’t take due to heart medication. It’s so frustrating, I hope the flushes settle soon. I also have very achy joints but that started with the chemotherapy so can’t blame the Letrozole yet!
I have my first Herceptin at home this week and will speak to the nurse to see what has happened with other people in this situation. Then I will ring the cancer centre or GP ( although that is problematic as it all has to be done online and the system they use is all about specific illnesses not queries! )
Thank you for listening. I’m so confused with who is now responsible for my treatment.
I hope you get an answer re your CT scan 
Hi @salbert
Hope you are doing well. Re the bio oil, www.cancehaircare.co.uk recommended Re Gen oil (Amazon Primark ) as being comparable to Bio oil but cheaper. Bio oil was brilliant on my scars once the wound healed and at my CT planning for radiotherapy they couldn’t believe how long my surgery had been as they thought the scars had healed so well.
@clobo1 going cold turkey on HRT is horrendous, I stopped in April last year after finding a lump. Normally stopping HRT is supposed to be a gradual process but with suspected cancer it was stop immediately. All my menopausal symptoms returned, chemotherapy side effects took over for a few months and now they have started again. I’m also started Letrozole last week so have to see how they affects me! I feel for you, unfortunately healthcare workers just seem to say with hormone positive cancer it’s just something to accept. Thinking of you
@chellebelle have you got a treatment plan yet?
Oh @naughty_boob you are so right about different hospitals and doctors doing things differently. I asked at the beginning of my chemo treatment where I could look up the various regimes and was told ‘this is just the combination we think’s best and choose here’. I am fortunate to be under a large city centre teaching hospital and have chosen to trust them. Then it’s really helped here reading of the largely similar, but not identical, courses others have been prescribed.
Quite in contrast to you, the oncologist said he won’t be discharging me back to my GP anytime soon and they’ll see me every 6-8 weeks during Phesgo treatment and more often before and after radiotherapy. In fact my GP sent me an unsolicited appointment last week because she felt she’d not seen me through 6months+ of treatment! I explained all my needs had been at times the surgery was closed and the out of hours doc. had been a waste of time: I knew what I needed, am even qualified, in theory, to prescribe it. There was just the small matter of it being unethical to prescribe for oneself!
So the letrozole is a bit the same. I was quite keen to get on and start mine since rational or not I felt the cancer itself has gone, the Phesgo is fighting the HER2 +ve bit, but to date apart from binning the oestrogen pessaries I was using before diagnosis, nothing was being done to battle the oestrogen +ve aspect of my disease type.
I’ve had the odd warm flush, but nothing too unbearable. This is week 2 of taking. Could it be that I’m a tad older starting so further past menopause with less oestrogen around anyway so the impact is not so great?
Achy joints & stuff, it’s almost impossible to know what’s still residual full-on chemo, what’s Phesgo and what’s letrozole! There are all sorts of bits of niggles but they’ve been around on and off since before letrozole so I’m taking the approach, don’t blame the tablets unless there really is no other explanation. I guess for me, so long as I believe they really are reducing my chances of a recurrence, I’ll put up with quite a lot, but everybody’s different and I respect all decisions. There’s a bit of me more questioning whether I really need the radiotherapy, but I guess I’ll go with it I. The end.
I’m going on a bit here - sorry. But I work for a similar company to the one who are likely to be doing your at home herceptin (I highly suspect they will be called Sciencus). We similarly do pharmacy dispensing coupled with nurse home visits to either administer medicines or teach patients to self-administer. Sadly we don’t yet do a Herceptin service. I would have like something similar but I don’t think it’s available for Phesgo yet.
Let’s keep exchanging notes. The jury’s still out for me on sleep and sleep patterns 
.
How’s hair regrowth? - mines still rubbish, no where near ready for a pixie cut or a big reveal. Going outside without headwear is just too cold!
A work colleague who’s been where we are a few years ago calls BC the gift that keeps on giving!
Oh & my CY scan appt - I’ll let you know when I’ve responded to the wierd text message I got today!
Xx
We’re all here with you. Let us know how you get on.
Pink love x
Thanks for your reply. It was really helpful.
Yes it’s Sciencus, although Velindre in Cardiff called it Healthcare at Home, which I believe was an old name. Luckily I googled and found out more information. I’ve been informed they have Out of Hours and Nurse support 24/7 which is good to know. I called the Velindre helpline 4 weeks after chemotherapy and was told I shouldn’t be calling them as they were the Treatment Helpline… I’m still on treatment, I was due radiotherapy a few days later and that department said to call Helpline if radiotherapy had finished for the day.
I didn’t loose my hair, only two small patches of loss above my ears and shedding, as I’d Cold capped. I had my bob cut short on advice from cancer centre which was not needed. I have a very out grown pixie but my scalp is still sensitive to go to the hairdressers. Luckily it’s a smaller area, mainly the crown, so hopefully in a few weeks I can get a cut. The ends are really dry even though I’ve been treating with oil.
I lost part of my eyebrows and lashes, they are slowly growing back. Although I suffer with dry itchy watery eyes, eventually got GP to prescribe artificial tears. I have allergies and the area around my eye is always so sensitive to irritants. I struggle to stop the itch scratch cycle! 
I have heard so many say BC is a gift that keeps on giving, but so many people around me seem to think I’m now on the mend! Yes the cancer has gone but there is ongoing treatment not to mention mental health.
Take care🥰
Hello my friends
Ain’t it marvellous to have a pharmacist among us?!! @suedot It’s great to have your knowledge. @naughty_boob Thanks for the tip re the Amazon Primark oil. I will get some as I need to save every bleedin’ penny now!
I just had my bone and CT scan results and I think they sound good. I have lung and liver non-specific nodules which are really common. One degenerative vertebrae in my neck. No sign of bone cancer or masses or it having spread. They are going to do further tests because they always investigate nodules further but most of the time they are benign and a huge percentage of people over 50 have them. I feel this is good news.
When I think of what I have put my liver and lungs through I am not surprised they have a few lesions and scars and bumps.
I started writing this message to you all and then the vet arrived to put down our 16 1/2 year old dog, Reilly. We had barely had time to absorb the good news before we had to say goodbye to him. We have just buried him in the garden. This is such a tough time.
I know everyone goes through tough times. We all are right now. I just needed to type this out because well, it’s like group therapy for me.
Tight hugs,
Sal
x
Pleased to hear your results. The further investigation means they can ensure you are receiving the correct treatment.
So sorry to hear about Reilly. You have had a really long time with him and so many memories. It was lovely that the vet was able to visit you at home.
Thinking of you
Thanks @naughty_boob It was a very peaceful and loving goodbye. I feel wrung out to dry emotionally. It really is a case of carrying on putting one foot in front of the other and ploughing on. Like many have done before me and will continue to do.
Love to you,
Sal
x
Hey! Came out of surgery today and now back home. I spoke to the doctor and they said they will go through my treatment plan once the results of my sentinel lymph node extraction comes back so I’ve got a sick note for 2 weeks and my results appointment is also booked in for 2 weeks. I’ve been glued back together which is good as I react to steri strips and plasters. Just taking it easy now and taking regular pain killers and then will see what the next course of action is x