Message for WENDYH
Message for WENDYH Hiya,
Just wanted to see how you are and was wondering whether you had had your surgery yet?
I have another round of taxotere today which I am dreading as the side effects make me look like a crack addict going cold turkey! I also end up having needle marks all up my arms as it is getting increasingly diffivult to find veins! I swear the county council could parade me round the local schools to show kids what happens if you take drugs as I just look like a junkie!
I am having MRI scan today as well which is also scaring me as it is always a worry as to what they might find! I
did have an ultrasound at the beginning of last month and my lump had shrunk from 26mm to 8mm which is all good- also have finally heard about my critical illness cover. My claim has been accepted and I have had to provide bank details so all looking good there, although will not celebrate till it hits my account.
After my last taxotere at end of month, I will be discussing surgery and like you, I am going to be asking for a double mastectomy. I wanted to know if this was agreed for you easily (last I heard-thats what you were having) and if they tried to persuade you to only have one off? also do they implant immediately or do you have to wait until after rads?
Sorry for all the questions- I really hope that you are okay and that your surgery has gone well (if you have already had it)
Let me know…
Speak to you soon and take care
Katyx
Hi Katy Hello there
Thanks for thinking about me - particularly as you’ve just had another chemo - I really hope you are not feeling too awful this time.
I saw my surgeon on 25th May and asked her about having a double mastectomy - she has told me that now is not the time to make that decision - and said that most women who have chemo first ask the same question as the idea of going through all of that again is not good. She said that the best time to consider having the other breast removed is when you go for reconstructive surgery, which she said would be next year. She was really lovely about it and said they would be watching and keeping an eye on the other breast she was very reassuring. I’ll have radiotherapy five days a week for 5 weeks and that will start approx 4 - 6 weeks after surgery (thats another reason you don’t have recon straight away - the radiotherapy can affect it)
I had a mammogram and ultrasound on both breasts - they didn’t tell me the size of my lump - but the surgeon has assured me that its operable now. They were able to tell me that I have quite a lot of DCIS aswell which accounts for the rest of the lumpyness, I guess.
I’ve had a repeat of the chest xray and liver ultrasound - both were all clear and a bone scan (results not back yet).
My mastectomy has been booked for next Tuesday - 12th June which will be exactly 4 weeks after my last chemo. I am pleased to be at this stage now - and just want to get it done.
Harry, Sophia and I came back from 5 days in Almeria (Spain) yesterday - we only booked it the Saturday before - as soon as I started to feel better from my last chemo and the surgeon had agreed I could travel. It was so good to get away… just to chill and wander around the shops (I almost felt normal) - the sangria helped with that aswell.
I’m so pleased that your critical illness has been sorted - fingers crossed that they hurry it into your bank account - I think they should after you’ve waited this long. I’ve managed to pay a huge chunk of the mortgage off and now the remainder is on a very manageable repayment scheme. The rest of the payout is being used up faster than I can think - but that’s good - a few new bits of furniture, house improvement’s and the odd holiday (retail therapy!).
Is your hair growing back - I read one of your posts the other day - you thought it was growing. I have this very fine, very fair fuzz growing - well when I say growing - I’m not sure it is - but it’s there. I’m not sure what to do with it - but I am continuing to wear my scarves quite happily.
I will be keeping my fingers and toes crossed that you manage this cycle and your last one without too many horrid side effects. I’m still really tired and have been told that that’s normal - I’m walking around at a snail’s pace - but that’s ok - why hurry!
Thinking of you and sending love and hugs
Wendy xoxoxoxoxoxox
Hi Wendy,
Just wrote you a really long post but seemd to have lost it so here goes again…
I cant beleive that your surgey has come round so quickly and I wish you all the speedy recoveries in the world! I, like you will be asking for a double mastectomy, and after reading your reply, I think just having one of at a time is probably the best way to go- that way you will be living with only one chicken fillet in your bra until you can have reconstruction on both at the same time. I’m still gonna ask for both off immediately but would happily accept what you have been offered if thats the way they do it. I just feel a personal need to have them both gone- that way, in my mind I will be able to accept that I have done everything I could in order to prevent any possible recurrance.
I had a CT scan yesterday, not an MRI (I got it wrong) and I think it was to check the spots that were found on my lungs initially. I think (from my original diagnosis) that I need them to still be there! As the spots were so minute, they could not tell whether they were scars on my lungs from TB which I was treated for as a child or for the bronchitis that I had -and I think that if the chemo has killed them then they were cancerous-so if they are still there then they are just scars (thats if I understood him correctly-and it sounds logical to me!) I think I will know the results when I go for my next and LAST- yes LAST (YIPPEE) chemo on 24th june. I am still hating the taxotere- feeling okay today, but mouth has started furring up and its usually on saturday that it hits me, so not looking forward to the weekend!
My critical illness money should be in my bank mid week next week so looking forward to spending that! like you, we will pay a chunk off the mortgage which will make it more manageable, clear debts, new car, holiday and finish the house off, so will be very happy. I cant beleive that I put another two grand on my credit card when I was first diagnosed. I think I was so down that I just kept buying crap to cheer myself up! I was like rockafella swiping here, there and everywhere and I couldnt even really tell you what I spent it on! still- it made me happier at the time, but two grand!!!
My hair is growing back-albeit very slowly and its coming through black!!! My hair was always a really fair mousy brown which I highlighted blonde-so to see it jet black is a shocker- I will be reaching for a bottle of peroxide as soon as i am able-Ha! although am planning to still live in my wigs until its ear length at least.
Glad you had a lovely holiday and I really hope your surgery goes well- you’ll have to take notes for me so that I know what to expect as I reckon mine will probably be the end of July.
take care Wendy and I will be thinking of you and sending you positive vibes for a happy speedy recovery
speak to you soon
Katyx
Hi Katy Hi
This is the first day I have felt like sitting at the computer since last week so I knew I must let you know how things have been.
The op went really well on Tuesday - my surgeon said she was really pleased ( I have to wait until this Wednesday for the histology results). I have been feeling really well since the op - I’ve managed the pain with just ibruprofen and paracetamol, which surprised me as I’m a huge wimp.
I had two drains in (one came out on Thursday), I still have the other in as it’s draining more than the 40mls limit req’d before they take it out. I’ve had the community nurses visiting every day to check all is well - they said today that the drain will come out tomorrow anyway - so that is good.
My 6 year old has been an absolute star - I was so worried about how much or little to tell her - but she has taken everything in her stride. She spotted my flattened chest on Friday and asked ‘where’s your booby gone’ so I told her that the doctors had taken it away as it was poorly - she asked if it would grow back - I told her no, but the doctors would make me a new one - she thought that was really clever… She asked to have a look - which I was really concerned about - but she did - and all she said was how did they doctors join it back together - I said they stitched it and she said ‘what like sewing at school’. She hasn’t bothered about it since - so I felt that was really positive and enough info for her.
Anyway - I really hope all is well with you.
Lots of Love and Hugs
Wendy xoxoxox
Hi Katy - again! Hi
I just thought I would update you - mind you I hope you are off spending your long awaited CI money somewhere on something really nice!
I had my appointment with my surgeon today - and I think it all went very well. She is very pleased with me the scar is very neat and healing well. My 2nd drain came out this morning so that was good too.
2/6 lymph nodes were affected - but with the chemo all nasties should have been zapped. My tumour was finally measured at 21mm - the surgeon said she thought that was great as she couldn’t measure it back in January. I had a lot of DCIS in the breast aswell - so the mastectomy was the right way to go. The margins were clear - something else she was worried about as the thickened skin that I had could have had stray cancer cells in it - but it was all good.
I have been given Tamoxifen to take straightaway but I have been told that I need to consider taking Zoladex and Arimidex instead of the Tamoxifen. They are worried about my hormone levels - my periods carried on right through to the 5th cycle of chemo and want to make sure they don’t come back anytime soon. I will be having Radiotherapy which will start in about 4 weeks.
All in all it was a good day - I feel really good too and the softee boob they’ve given me had its first outing and it behaved very well. My 6 year old was surprised when she saw me this evening though - she thought my boob had grown back!
Take care - I’ll be thinking of you when you have your last chemo next week - Yeeaaaaaaahhhhh!
Love and Hugs
Wendy xoxoxox
Hi Wendy,
So good to hear from you and excellent news that your surgery went well. I am really pleased for you.
How are you coping with just one boob? does the false one feel secure and have you had to change all the styles of tops that you normally wear?
I have my last chemo next week and should find out the results of my CT scan then.
You were absolutely right when you assumed I’d be out spending the CI money- have bought a new car and we have had our bedroom replastered in anticipation of redecorating. We moved into our house 5 years ago and it was in a right state. We had to rewire, replaster, get new windows, new kitchen and bathroom etc. We then ran out of steam and money and our bedrooms have never been touched so it will be a huge luxury to have a nice bedroom with hanging space for clothes rather than tatty shelving units.
I dont think we will get a holiday this year as I’m paranoid about going in the sun, but we are going down to torquay at the weekend and have booked a B&B, just to get away for a couple of days and to give the kids a break- so we are all looking forward to that.
I also have an appointment booked for genetic testing as my dads mum died from breast cancer. He was an only child, but a lot of his cousins have had scares and lumps and I think a couple have had cancer too, so I am gonna get tested, just in case it is genetic and for the sake of my daughter.
Weather here is pants at the moment, so am housebound- thank goodness for Jeremy Kyle- Ha!
Speak to you soon- take care
Katyx
Enjoy your weekend away Hi Katy
It was great to read your reply.
I think I’ve accepted the one boob me - at least at the moment I am ok with it. I looked at the wound as soon as I could focus on it after the op. It was ok, and I had done some research on the internet and seen pics. I felt immense relief when I looked and realised that I didn’t need to keep checking the lump anymore. It was a huge weight off - in more ways than one!
I thought I should just tell you that the softee boob they give you first insn’t the most secure thing. It does ride up a bit - but is better if you have a really full cup bra. I was told yesterday that as my wound is healing so quickly - I should make an appointment to have a proper mastectomy bra fitted (we are very lucky down here in Chichester as we have a branch of the company Nicola Jane who are specialists is mastectomy wear). Then I can get my proper weighted prosthesis which will be loads better.
I have bought quite a few new tops as most of mine were V neck. So now I have a range of various scooped, square and round necklines and I have found that patterned tops look better at the moment as your silhouette appears broken up. It’s probably just in my head - but I think its less obvious.
When we were in Spain before my surgery - I used factor 50 and wore a wide brimmed hat and covered my arms up… I still felt like I’d had a really good holiday though - just having the couple of glasses of Sangria made it worth it for me, Harry and Sophia really benefitted from just chilling out. Sometimes I think all of this must be harder for them than it is for me. I managed to get an insurance company to cover me for £101.00 for the 5 day trip - expensive - but less than half of what I had been quoted by some of the companies.
I hope you and your family have a great time in Torquay this weekend - I am sure the break will be good for all of you.
Love and Hugs
Wendy xoxoxox
Hi Wendy,
Saw my oncologist today and got the results of my scan. The lung spots are still there and unchanged which suggests they are scars and not cancer. I have been told I will have surgery in 5 weeks and on my last chemo tomorrow he is going to give me a reduced dose which will mean not so many side effects-yay!!!
Went to Torquay at the weekend and it was a washout! We had a good time, but all the kids really wanted to do was play on the beach which was impossible because of the rain- still, we went to the penguin sanctuary and visited some caves and ate and then ate some more and then ate some more… Cool! I had a bit of a blowout for daughters bedroom- we are starting to do all the bedrooms and Laura Ashley had a sale, so I went a bit mad- I’m spending this money like water and it feels great!!! Normally, I would be looking at market stuff, but NO- I wanted Laura Ashley and I can afford it now, I also felt justified it by the fact it was in the sale- hubby maintains that I’m decorating her bedroom for me not her as she would rather have bratz stuff, but I dont care- its gonna look beautiful!
I also told the onc that I wanted double mastectomy and he mentioned a type beginning with S where I may keep the nipple which would be great! I also found out that I am HER 2 neg which means I’m triple negative. He also ummed and ahhed over whether I would need radiotherapy or not and said he would have to see- do you know what warrants the need for radiotherapy or not?
Hope you are doing okay and buying lots of flattering tops to up your confidence.
speak to you soon
take care
Katyx
Hello Hi Katy
I hope today went well - I bet you’re really pleased to have the reduced dose. I think you must have been doing better than me though. I don’t think I could have summoned any enthusiasm for decorated whilst I was still having the chemo - Well Done You!!!
Shame about the weather last weekend - but hey more time for eating - that sound good to me!
You didn’t say if you ONC said yes to the double or not? I only found out at my post op appointment with my surgeon that I was HER neg but I am ER+ and that was graded at 6/9 (I think that’s right) pretty high and that’s why I’m on the tamoxifen and will be changing to zoladex and arimidex. I’m not sure about the radiotherapy but I was told that my age was the reason for radiotherapy - the surgeon said they wanted to throw everything they could at it.
I had a bit of retail therapy today - I visited Nicola Jane in Chichester and had a proper fitting. I bought a lovely bra and then rang my breast care nurse and arranged to see her straight away to get a proper prothesis. Unfortunately she didn’t have the exact size I needed so I will have to wait until next week. Never mind she gave me another softee - the next size up - every time I’ve seen her since surgery she has changed the size of it. This is my 4th one - Harry thinks its hilarious and said he should have come with me - as he would be a better judge (he must have a good memory then that’s all I’ll say about that!)
Anyway - I hope today went well for you - Last one - well done.
Take Care
Love and Hugs
Wendy xoxoxox
Hi,
The oncologist said I would have to speak to the surgeon regarding a double mastectomey and didnt give me an answer, but I am adamant that that is what I want and will insist on it if I have to.
I know it could still come back, but its very important to me to be sure in my own mind that I have done everything I can possible do to prevent it.
If it only ups my chance of not having a recurrance by 1%, then I want that 1% if you know what I mean
Glad to hear you’ve been indulging in some retail therapy too- I cant believe you have had 4 fillets so far in such a short space of time. Once you have reconstruction you will probably have enough to string them together and decorate around your garden- Ha!
Am chuffed that onl;y getting half dose of chemo tomorrow and its made me almost look forward to the weekend- my mum is having the kids as I’m usually so rough, but this time I may even be able to function and have a nice weekend -hopefully it will keep the mouth thrush at baty as well.
I will let you know when I have a surgery consultation
Take care and thanks for your reply
Katyx
Hi Wendy,
I saw the surgeon yesterday and have had really good news. He is going to give me immediate reconstruction following my mastectomy. He also will be saving my nipple! To say I was ecstatic was an understatement and I could have kissed him. I will have the op in the next three weeks and the reconstructed breast will be a silicone implant which will be injected with saline to expand it and stretch the skin after the op. He is taking muscle from my back to use. He WILL do the other side for me as well, but not until 6 months after the original surgery.
I hope your recovery is still going well and whats happening on your hair front? Is it growing back any faster now your chemo has ended? Mine is still growing very slowly and is still VERY dark!
Speak to you soon
Katyx
Hi Katy
I’ve been reading all your news in your reply to me and on your other post - I am absolutely thrilled for you - that you have got what you wanted regarding recon and the promise of the elective mastectomy in 6 months time.
Recon wasn’t mentioned for me at this point as I was always going to have radiotherapy regardless of lymphs etc. I have to say that I would definately have had it if I had been offered it.
My hair is growing back - still more slowly than I would like though. It is a very strange colour - having been a redhead - it is coming through very dark. It’s not growing back at the same rate all over so I have more round the back and sides than on top - so still wearing the scarves for the forseeable.
I have my radiotherapy planning appointment on Wednesday - I want to get that started and am becoming very impatient. I’m a bit worried that the scar isn’t healing as well as it should be but I suppose they’ll tell me on Wednesday.
I feel really good apart from that - very little pain and the whole chest area is feeling much softer and looking ok.
Take Care
Love and Hugs
Wendy xoxoxox
Hi Wendy,
Well, the breast nurse phoned me today and my surgery will be on the 31st July - so 3 weeks time. I’m just gonna have to sort out childcare as its in the summer holidays. Still, I’m glad its sooner rather than later!
My hair is horrible- all frizzy and fluffy and still VERY dark! I cant wait until I can reach for a bottle of peroxide!
I think that I will be having radiotherapy after the op and I think that when the surgeon does the mastecxtomy on the other side, he will replace the implant that I will be having with a permanent silicone one.
You seem to be recovering really well and seem in a positive frame of mind- I am still on a high from finishing chemo, although not liking the loss of fingernails- I have lost 3 so far and the others are hanging on by a thread- gross!!! I am looking forward to the day when I will be able to look in the mirror and like what I see.
Take care
Speak to you soon
Katyx