Calling all triple negative breast cancer patients in the UK
Comments
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Techs, Marion, and a patient from Russia who speaks no English or German!
The whole radiation crowd gathered for the bell ringing. I was the first ever! An honor.
Boob cake for our Thanksgiving celebration today!
My 2 adorable techs from rads.
The bell
Me ringing the bell and fighting back tears unsuccessfully.
My friend Marion. We met in the waiting room. She is done in 2 weeks and I'll go back for the bell ringing!
Radiation techs, Marion, and a lady who came to Germany for treatment from Russia. Nice. Speaks no English and no German. A challenge!0 -
Hello Susan,
Thank you so much for such great photographs. It was so interesting to read them and see you, your friends and your team. The photographs brought back memories to me of going for radiotherapy treatment. It was good to see all of you smiling and looking so happy. I really loved seeing the bell and hope it might catch on here. It is so important to keep that human touch and also to celebrate the end of treatment. I am very impressed with how very smart the nurses look in their uniforms.
I must say I was very impressed by the woman from Russia and the fact that she is going through treatment in a country the language of which she does not speak and does not speak English either.
Keep up the good work and always post photographs if you want. In the past I have posted photographs of shrubs in full bloom in the grounds of the apartment complex where I live. Bernie Ellen used to post photographs of her outings to other countries and some of her pets.
I think personal touches like these are important and cheer us up. I bet you are enjoying your weekend.
Thinking of you.
Sylvia xxxx
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Hello peterandliz
I just wanted to let you know that I have just looked at the latest interview with Steve Evans. Once again, it was most interesting and gave me a lot of food for thought. It is so sad that Steve appears to be nearing the end of his journey and has decided not to have any more aggressive treatment. I fully understand that there is only so much of toxic drugs that the body can take.
I have been pondering on what he said about attitude when you are told you have cancer. He mentioned thinking that there must be a reason for your having cancer and said that way of thinking was positive, and the other way of thinking why me was negative.
I have never really thought why me, because I think with so many people being diagnosed with cancer anybody can be diagnosed. On the other hand, I have never really thought, either, that there must be a reason why I got it. I think I decided I have got it so I had better deal with it.
I should be most interested in any comments you or anyone else have.
Hope you are having a good weekend.
Sylvia
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Hi Susan
I love your photos and think your hair looks lovely. I wonder how long after your chemo has ended to make it look so nice, without a wig or scarf. My chemo ends on 29 Jan, hold ups permitting, and I hope to go back to work at the end of April. Do you think I will have as much hair as you do so I won't need a wig or scarf? I do hope so.
How do you upload photos into a thread like this? I don't see any option.
Regards and congratulations on finishing your treatment; it must be a great relief,
Anne x0 -
Not the most flattering photo, but this is my current look, without the scarf. I figured out how to add the photo but not how to re-orientate it! Anne x
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Hello Anne
Thank you for posting your photograph. You will find that your hair will grow back very quickly once you have finished chemotherapy.
It looks as though it is growing a bit already.
Keep looking forward.
Fond thoughts.
Sylvia xxxx
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Hi Anne, You look great and still have eyebrows which I think makes a big difference in a girl's look. Mine are still growing back in. My hair starting coming back as soon as I stopped EC. It started growing slowly but steadily with Taxol. I started Taxol in June so what hair I have now is about 6 months worth. I had a trim around the ears this week, my first. Since all I do is cry I cried at the hairdresser because I was just so happy to have hair!
I think I started going without a bandana maybe in September. It's cold and wet here so I'm now back in hats at all times when outside. I do not have enough hair yet to be of much insulation!
Have a good weekend ladies and keep up the fight!0 -
Sylvia
The photo was taken about two weeks ago, not long after Chemo #2, when I had my hair shaved to a No 1. I have actually lost some hair since then and found some more in the bath today after I washed it, so I am now am much thinner on top than this photo. My hairdresser didn't want to shave it off altogether, leaving me with a sore or itchy scalp, so she left a bit, but it is not coming off in huge amounts any more so is no longer a bother or mess.
Anne x0 -
Ok, here is one I took a minute ago and you will see I have less hair now, but there is a bit at the back. Not very flattering as no make up or anything. Anne x
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hi Sylvia
I'm so hoping for good results..re genetic testing...I don't think there's anything on my fathers side, he was an only child and his parents lived to old age and as far as I can remember his small extended family which I wasn't really close too all lived to old age, if there are any genetic problems its on the maternal side I think,
I had a bit of a scare yesterday, my friend brought flowers round and we were talking at the door when I collapse four times and ended up in hospital for the rest of the day, they put it down to low blood pressure and low red blood cells but it was scary because I don't remember anything about it, still feeling weak now so just going to take it easy for a few days.
The taxotere is defiantly taking it out of me it's so much harder than FEC, looking forward to it being over now and going on a nice holiday next year with my family
Take care
Gill0 -
Hi Sylvia
I think your relative will like Hollywood. It is ten minutes from Belfast City Centre by train and has many amenities of its own. It is a wealthy area, the whole of the area between Hollywood and Bangor is known as the Gold coast. There is a pub called the Dirty Duck that sells English style ales and has superb food.
I am in post treatment mode at the moment and having 8 weekly checkups. I have no idea how long I will be able to go before more intervention. I had hoped to get maintaince Retuximab and/or radiotherapy but my consultant wasn't having any of it. My previous consultant who has retired would have chosen whatever he felt was best rather than stick to guidelines.
It is dull here in NI but very mild.
Michael0 -
I hope you are ok, Gill. I was told my blood pressure was low just before chemo 3. But they went ahead anyway. I have been feeling quite light-headed and woozy too, especially when I do anything other than sit down. I just came back from a short shopping trip with my daughter and. I did feel a distinctly 'stoned' drugged up, lightheaded feeling, sort of detached from everything. I assume it's all the drugswe are being given. Glad you weren't kept in the hospital though.
Anne x0 -
Hello apandy (Anne)
Thank you for the
photographs. I think it was wise not to have all the hair shaved off
and just leave what stubble remains naturally as I think this will
help it to grow back. I think this hair loss due to chemotherapy is
very traumatic for all of us, but we have to hang on to the fact that
it will grow back. Looking back I seem to have worn my wig for quite
a time, but it did not bother me. I wore my wig for over a year. I
think we all know when we are ready to go out with our newly grown
hair.I think my eyebrows and
lashes disappeared on Taxotere as I do not remember not having them
on EC. It is easy to cover up non-existent eyebrows with a fringe.Keep looking forward
until December 18th.Fond thoughts.
Sylvia xxxx
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Hello Jackpot (Gill)
It is good that you
know your father's family history and have just your mother's side to
concentrate on with regards to the genetics. It is good that genetic
testing is becoming more available here.I was sorry to read
that you had collapsed four times and ended up in hospital for the
rest of the day. I think we have to be very careful about low blood
pressure. I found that during chemotherapy it was useful to get my
husband to take my blood pressure and temperature every day.
Sometimes I would feel a bit faint after a shower and I would find my
blood pressure was low, but that sipping cold water gradually brought
it back to normal. It is probably not a good idea to stand around too
much, as it seems to make matters worse. I can sympathise with what
happened as I passed out cold in WH Smith a few days after my first
chemotherapy. We have to look after ourselves. I also did not
remember anything. I was standing near the entrance waiting for my
husband, who was in a queue getting a bottle of water for me. The
next thing I was lying on the top floor of the multi storey car park
and a couple and my husband were asking if I was alright. They got me
to my feet and to the car. I think that was probably due to the low
blood pressure brought on by the drugs.You are right to take
it easy.You are nearly at the
end of your journey, so hang in there.Fond thoughts.
Sylvia xxxx
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Hello Michael
It is always nice to
hear from you. Thank you for your information about Holywood. I did
not know it was a wealthy area and known as the Gold Coast. Our young
relative is just renting a flat there for the moment after being
relocated in his job. I shall certainly tell him about that pub, the
Dirty Duck, as I am sure he will be glad of some good food and drink.I do hope all will go
well with your check ups. Are you having check ups every eight weeks
or weekly check ups for eight weeks??? Is there any reason why your
consultant will not let you have maintenance Retuximab and/or
radiotherapy? You need to have what is best for you.Today in Exmouth the
sun is trying to break through but it is cold although unusually calm
and still. The seafront looks a mess. At one end where the sea wall
is low, there are sand dunes which are rapidly disappearing as when
it is windy all the sand comes over the wall onto the road and
pavement. The council workers spend a lot of time putting the sand
back on the dunes and hollowing the sand out from near the wall. The
result is they make the dunes look unnatural and resembling a
construction site.Keep well.
Best wishes.
Sylvia
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Hello everyone
I hope you all have a
good week and that you will all keep in touch.To Sandra (bigleggy)
how is your chemotherapy going?To Hero1967 please let
us know how your mammogram and MRI go in December.To susaninicking let us
know how you get on with the removal of your port in December.To Carolben I hope
things are going well on oral Zeloda.To adagio, linali
(Lindsay), peterandliz, I hope you all have a good week.To InspiredbyDolce
(Debra) I have not seen you on the threads for a while. I hope all is
well with you and that perhaps you are taking a break from it all.Thinking of you all and
wishing you all the very best.Sylvia xxxx
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hi Anne
It really is one of the worst se because it restricts you in everything you do, I'm so busy this time of year yet I ave to wait till someone can accompany me shopping or town because I'm nervous now about going alone, it hasnt happened since but I feel it could as I am still feeling weak and i don't want to end up with a hospital stay at Xmas
I hope the rest of your chemo goes ok with minimal ses
Take care
Gill0 -
hi Sylvia
Do you normally have low blood pressure, I always have but they said it would normally be a good thing, in the ambulance it registered at 82/56 but they said it was probably lower at the time af collapse, my red blood cells are close to needing a transfusion but their not going to check till pre chemo bloods which is disappointing because if their lower it could delay chemo,
Did you have a home blood pressure kit? it might be worth investing in one of them, it's going to be hard to take it easy at this time of year as I m so busy and don't normally like depending on others for help, even though they do offer, I think I'm just going to do what I can and leave what I can't and not worry about it,
Take care
Gill0 -
Jackpot - what a scare for you having to go to the hospital. Sure hope you are feeling a bit better. Rest up and keep us up to date with how you are doing. You only have one more chemo to get through, so you must build up your strength and energy for that. It's a marathon. Hugs!0 -
I have one of those kits, which I bought when I was being tested for kidney donation. I have found my blood pressure is low a few days after chemo. just now, for example, one of my readings was 70/52! I am not surprised as the light headed ness seems to be a clue that the BP is not quite what it should be.
Anne0 -
hi adagio
It was scary as I dont remember any of he collapses, going to try and get out for little bit tomorrow and build my strength up, this will soon be over,
Anne...I've just ordered a blood pressure kit and I'm going to keep a close eye on it so I can maybe stop it happening again
Take care
Gill0 -
Yes, take it easy when BP is low, but thats easier said than done sometimes.
Anne x0 -
Hello Jackpot (Gill)
No, I do not have low
blood pressure. Mine is usually normal, 75/130. I do have a kit but
do not read my blood pressure much now. I refuse to have it read at
the doctors because it goes up and they are too eager to put you on
pills. My motto is to stay away from all medication because once you
start on one, it all spirals out of control. I am surrounded by
people taking pills, especially blood pressure pills, statins,
steroids, warfarin, diuretics and heart pills, not to mention all the
anti-diabetic medication and hypothyroidism medication.I do hope you manage to
keep away from needing a blood transfusion for low red blood cells.
Take extra care now as you are nearly at journey's end for
chemotherapy.Low blood pressure seems to be one of the side effects of chemotherapy drugs. As I said before, sitting drinking water and resting brings it back up. I think if you start to feel strange and faint, drink some water and lie down.
Thinking of you.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
Lulu posted this yesterday.
"Good news from me, Ganetespib is working. CT scan has shown improvement already. That's only half way through the trial!... Lymph node shrunk by 5mm now its only 15mm and smaller than at dx in August! Lung tumour grew to 24 but now 22mm. Go ENCHANT! Think this is great news for all the lovely TNBC ladies out there."0 -
Sylvia - I am with you on staying away from medications as much as is possible. It seems there is a pill for everything these days! Glad to hear you are continuing to keep well. I have no complaints and am totally grateful that treatments are behind and that I feel well.
To all those still going through treatment - hang in there - there is life after chemo!0 -
hi Sylvia
I totally agree with the pills for all conditions, I've refused many pills since I've been on this cancer journey including anti epileptic for nerve pain and anti depressants....I must admit I'm happy to take the pain meds for the tax pain though
Still feeling a bit weak and wobbly but expecting my new blood pressure kit to arrive tomorrow so at least ill be able to keep an eye on it, I'm also hoping to avoid the transfusion as well, I don't want anything delaying my final chemo
Peterandliz I also read that on lulus group so glad it's working for her and hope for the rest of us if we ever end up in the same situation
Take care
Jackpot0 -
Ode to my Sleep Cap
I have a little sleep cap
that keeps me warm as toast
I've lots of other headgear
but I love it the most.
When evening winds are drawing
I snuggle in my bed
But I can't hear your snoring,
my sleep cap's on my head.
And even in the daytime,
The postman's at the door,
I quickly grab my sleep cap
that's lying on the floor.
When first I lost my lovely hair,
My first that was, 'Oh no!'
But now I have my sleep cap,
It really doesn't show,
I have a hat that's itchy,
A scarf that moves around,
I have a wig that's far too hot,
And fling it on the ground.
My sleep cap's on my pillow,
Or caught around my toe
My sleep cap hides all round my bed
And often doesn't show.
But I love my little sleep cap
It keeps me cosy warm
It wraps itself around my head
And well into the dawn.
I've many different colours,
In brown and green and red,
One for every week day
Of when my hair is shed.
I'm funny in my sleep cap
A swimmer or an elf
Although I don't look very glam,
It's ok (note to self).
I have a little sleep cap,
That keeps me warm as toast
I've lots of other headgear
but I love it the most.0 -
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Ode to my Sleep Cap
I have a little sleep cap
that keeps me warm as toast
I've lots of other headgear
but I love it the most.
When evening winds are drawing
I snuggle in my bed
But I can't hear your snoring,
my sleep cap's on my head.
And even in the daytime,
The postman's at the door,
I quickly grab my sleep cap
that's lying on the floor.
When first I lost my lovely hair,
My first thought was, 'Oh no!'
But now I have my sleep cap,
It really doesn't show.
I have a hat that's itchy,
A scarf that moves around,
I have a wig that's far too hot,
And fling it on the ground.
My sleep cap's on my pillow,
Or caught around my toe
My sleep cap hides all round my bed
And often doesn't show.
But I love my little sleep cap
It keeps me cosy warm
It wraps itself around my head
And well into the dawn.
I've many different colours,
In brown and green and red,
One for every week day
Of when my hair is shed.
I'm funny in my sleep cap
A swimmer or an elf
Although I don't look very glam,
It's ok (note to self).
I have a little sleep cap,
That keeps me warm as toast
I've lots of other headgear
but I love it the most.0 -
Hi
love it Anne, colour co-ordinated lippy as well
Jackpot (gill)0
