We really do experience the highs and the lows on this forum, don’t we. @jeml I’m so happy for you to have finished chemo but then I see @marionse25 you have had to stop because of a potentially devastating side effect. I think they really have to stop Kadcyla for you now. This does not agree with you at all. I’m so sorry the torment continues for you and I am sending you love and strength and willing you on.
@jeml I finished my chemo on 4th July, had my mastectomy on 7th August and then started radiotherapy on 8th October. So just over a month between chemo and surgery and then 2 months to recover from surgery. I have a scan booked for March to check my remaining real booby but that’s all for now. Apart from the ongoing Phesgo injections of course and as from today, probably cardiology appointments. I saw my GP friend on Saturday and she told me that I would no doubt be on an ACE inhibitor by the end of today so I think you are probably spot on with that @arty1
I used the Weleda Revitalising Hair Tonic that is recommended on www.cancerhaircare.co.uk that @naughty_boob mentions. My hair is growing back thicker than it was before I lost it so I think it must be good.
I think you need to go and do something to say goodbye to your grandad as you couldn’t do it at the time. A part of you probably really needs to as he clearly meant so much to you. I think as humans we need to say goodbye when we lose someone so dear to us.
@arty1 Another great pic of you enjoying Kasabian with your daughter. Precious times. I spent all yesterday recovering from Mamma Mia - The Party on Saturday. As promised, attached is a pic of my spectacular outfit! My consultant said that it’s best to stay off alcohol but that you have to live, so I made a special concession for Saturday and partied with the best of them, so much so that I had no voice left yesterday and was rather low on energy. But it was worth it. I also took a pic of my hair looking nice on my last outing before losing it back in February. I dreaded losing my hair but then realised it wasn’t as big a deal as I’d thought it would be. A fresh beginning with a head of curly dark hair. I am finally turning into my mother! I suppose it was inevitable. I was anxious before chemo too but my oncologist gave me Lorazepam for the first two and it became a lovely, hazy mellow experience about 20 minutes after sitting in that chemo chair. After my second round of EC I told him that I no longer needed it as the fear had subsided by then. You’ll do it. We’re here.
Aww i remember this feeling. But honestly your going to be fine! Once i sat there with a cuppa i was relaxed and watched something on my tablet. I have had steriods day before on day and the day after. They also topped me up too while i was there along with anti sickness. Also i have citirizine at night for 3 days.
I know each hospital have different policies though. I also have thrush medication and antibiotics after x
@salbert - you look amazing and I’m glad you enjoyed yourself , life’s too short and we need to live !
I wish I’d asked my oncologist for lorazepam now …… @jeml … I think I’ll be sat there rigid with fear for the first one tbh @marionse25 This is awful … what a devastating side effect I’m hoping that as it’s stopped now you will recover but you must be feeling very angry and upset …Im honestly lost for words …
@salbert love ypur picture, you really look the part. Are you going to keep your hair dark? Mines coming through very grey. Ive got used to my blond wig and it feels like me now. I’d send a pic if i could work out how to do it,! The gua sha facial was lovely, its supposed to give you a bit of a lift and reduce puffiness if done regularly, but it was very relaxing in releasing tension inyour head and jaw.
@marionse25 oh no what next, you have really gone through the mill. That kadcyla is toxic for you! Surely they wont suggest you resume it? Sending hugs and thinking of you. X
To send a pic click on the icon with the rectangle and drawing inside. It gives you the option of taking a photo library, take a photo or choose a file
I have to admit to just having got off the phone and bursting into tears. My husband turns 60 in March and wanted us to have 5 days in Seville. Yesterday when I met the cardio oncologist, I got put on Candesartan to protect my heart until I finish Phesgo in April. This is considered a new heart condition where insurers are concerned, so I am currently uninsurable. I’ve been told to try again in 3 months. Oh breast cancer, you really are a ****!
My ejection fraction is still within the normal range but because it has dropped from 63% to 52%, they want to make sure it doesn’t drop any lower. It will NOT keep me down for long. I shall find somewhere lovely in the UK instead.
@arty1 If you are anxious enough on the day then I see no reason why your oncologist can’t prescribe before you begin chemo. Mine did. Thanks for nice words re my outfit. I wish the insurers had seen me dancing my head off on the podium on Saturday!! Actually, that probably would have made me doubly uninsurable.
@pennyp I’m so glad you had a great gua sha! Sounds lovely. I’m thinking of keeping my hair dark but another part of me just wants to dye it purple or pale blue.
And now I am going to the fridge to attack the leftover roast potatoes to buoy me up again.
Sorry to hear that @salbert… it’s taken enough of our life away! Time to start living and you go away somewhere for your hubby bday even if its just a night or 2 away.
I had a good cry yesterday too reflecting on all what i have been through so far and just thinking on how unfair it as been… my little girl keeps asking me ’ its last time mummy for medicine and being poorly?’ Poor babs i hope she will forget it all as she grows.x
@salbert I’m not surprised to cried , how bl@*dy frustrating after everything you’ve been through . There are some gorgeous places in the uk you could escape to for a few days , find a lovely cottage in the country with a log burner and cosy up… We often book a weekend getaway in the winter and we d found some absolute gems . You could look to book that Seville trip for when you finish the herceptin and really celebrate . You will get insurance then although it will be pricey , mum has been on holiday to Florida. Costa Rica and Majorca and was able to get insurance as a 75 year old cancer patient on immunotherapy with a heart condition x
@jeml fortunately your little one is young enough that in years to come it will be a vague memory for her , youve done so well navigating this with a young family and you deserve a good cry too because all of this is unfair … I hope for you too … it becomes a distant memory as you watch your little girl grow up and make different memories .
I watched The day the wave hit last night about the Boxing Day tsunami and cried for half a. Hour afterwards … must stick to comedies from now on . This morning the Robin was sat on my garden fence when I went into the garden and it gave me comfort with chemo looming … as they say “When Robins appear, loved ones are near “
Oh no @salbert what a bu**er! You must be so disappointed. Im sure you can go somewhere in uk thats special - a nice hotel somewhere? There are lots of lovely places in this country. You can do Seville later in the year, its nice in October. I seem to spend a lot of time dreaming and planning trips, hopefully i will actually go on one or teo of them.
When the going gets tough keep going.
Leftover roast potatoes! Never heard of such a thing, unless i sneakily hide some from the rest of the family.
@salbert
Cancer really is the gift that kept on giving!
That’s so unfair that you’ve been given the medication as prevention. I know from my experience anything below 55 ( women’s range 55-70 is normal)on ejection fraction is seen as below normal. It’s so unfair that some people only drop a small amount and others drop much more. If I remember rightly my starting EF was 68% and dropped to 60%.
It does make me wonder how some who are on chemo manage to get insurance to go abroad as you’re usually only on it for 3-6 months.
Have you tried a couple of insurers? I book marked 2 that were Ona live with BCN and mentioned by I think Liz O’Riordan. Let me know if you want them.
@arty1 i can’t watched the Boxing Day Tsunami as on old colleague was there. It’s was horrific what they went through. They were by the pool when it happened.
Thanks for your sympathetic responses. I did indeed attack the leftover roast potatoes until they were no more. @pennyp I do know what you mean about not knowing this existed as a thing. However, I actually peeled a whole bag of potatoes for 3 of us on Sunday so that I could ensure a few in the fridge for Monday. Now THAT is forward planning!
Last night I went to Dance Fitness and jumped around a studio and worked out until I was puffing. That’s me kicking back at being told I have a heart condition. No wonder I am uninsurable!
@jeml I think we need a good cry now and again. You’ve done so amazingly navigating this with your little girl being so young. I did the Moving Forward course part 2 today and the bit that really struck a chord with me was the end where we looked at what takes your energy away and how to restore it. I feel like I wake up in the morning and hit the ground running. I finished the course today, was back at my desk for 1:40pm trying to catch up, had a plumber in, the dog going crazy, a man who keeps calling at my door to pin me down to do a crime survey, my neighbour calling, my son arriving home and suddenly I couldn’t remember my phone number. My son asked me why and I replied “Because I’m too tired to remember” and once again I found myself holding back the tears. We’ve all been through so much and continue to do so. Someone on here who shall remain nameless (unless she wants to name herself) had a brilliant idea of putting time limits on dates with friends. So she is going to have friends for dinner but ask them to leave by 9:30pm. I am going to do the same. I’m still trying to run myself ragged for everyone else so now I shall put the brakes on. I am going to make sure that I have enough time for me and I think you should all do the same. Women have so many roles which was also something we discussed today, and taking care of kids, a home, working, elderly parents, etc is hard enough without bloody cancer. A year ago I said ‘I haven’t got time for cancer’. I didn’t, but I had no choice. We absolutely owe it to ourselves to take time out for us.
@arty1 Any suggestions for some cosy log burner country cottages gratefully received. Once I’m off the heart medication and it has recovered and the Phesgo is over then surely I’ll get travel insurance again. @naughty_boob I’ll try the Liz O’Riordan ones but at the moment I only started the medication yesterday so I think it will be out of the question for about 3 months. It’s not the end of the world.
Talking of the tsunami, I knew of someone who was in Thailand when it happened but who was late for her boat trip so had to take the one half an hour later. She was out at sea and went right over the top of the huge wave as it came. The boat stayed upright and they watched it crash into their hotel from the sea. They all survived but the people in the boat half an hour earlier did not, so her persistent lateness actually saved her life.
I was also saying on the course today how my husband set me up a sofa with a duvet in our snug ready for chemo back in February. I spent a lot of time on it and have decided to keep it. It’s where I go to restore my energy levels. It’s where I developed the MAFS UK addiction and am currently indulging myself in some brain dead jungle action. I don’t care. I want to cosy down and switch off and I refuse to feel bad about it. My husband asks me if I am off to watch my intellectual programmes to which I reply “Yes, but they’re too highbrow for you. You wouldn’t understand!”
@naughty_boob it worries me that mine only came up as 57% in May , I don’t know what it measured last week but I argued the toss to have ace inhibitors to start with but my oncologist said she wouldn’t do it unless my EF dropped to 50 … not happy . How awful for anyone there , I don’t think it’s anything you’d ever get over in a hurry . I watched it as my daughter was shown it in Geography and I was interested . @salbert what a terrifying close call for your friend … we were on the early train from Cambridge to King’s Cross the day of the 7/7 London bombings and would have caught the tube to Russell Square , but the train was stopped at Hitchin due to an object on the line and we had to get a train back home . It was only when we got home (no smart phones then ) that we realised what a close call we’d had .
Bringing some early Christmas cheer to the thread ! Decided to get all the decorations done while I felt well , two trees up and a ton of decorations and it looks like Christmas threw up on my Lounge
Yay @arty1 Good on you, getting Christmas started! I felt the same last year as I was coming to terms with my diagnosis. I belligerently put all my decorations up and watched Elf while doing so with my son, as usual. We cannot be beaten!! It looks amazing. Makes me think I really must invest in some new and classier decorations. Mine have been doing the rounds for about 20 years now. I even have a bauble that I stole from the school Christmas tree at 13 years old during assembly when I found myself sitting right next to it. I feel guilt every year to this day when I hang that bauble up. Which is 41 years of guilt. Enough!
Thank heavens you didn’t make it to London on 7/7. I made it to Victoria that morning but we weren’t allowed to go any further so had to wait for our train to leave again. Mine was one of the only phone networks still working so my phone got passed around my carriage so that people could tell their loved ones they were safe. There but for the grace of God…
Thanks for telling me your Mum has travel insurance. I’m sure that it is only a matter of time and that once I have either been on this drug for a few months or come off it altogether, I will be able to get travel insurance again, albeit at an extortionate rate.
we are all here for you.
after everything you’ve been through . There are some gorgeous places in the uk you could escape to for a few days , find a lovely cottage in the country with a log burner and cosy up… We often book a weekend getaway in the winter and we d found some absolute gems . You could look to book that Seville trip for when you finish the herceptin and really celebrate . You will get insurance then although it will be pricey , mum has been on holiday to Florida. Costa Rica and Majorca and was able to get insurance as a 75 year old cancer patient on immunotherapy with a heart condition x
