Caron, I’m being marked up on Monday, start Rads on 27th. I also got my Arimadex yesterday, to start on 24th - for 5 years…!
Hello ladies,
Lovely sunny Sunday here… going out soon to Marle Place Gardens and gallery near Tonbridge.
Yesterday we went shopping in Bromley, my first time there. Just a modern town really with the Glades shopping centre running through its centre. I went to Primark as it was the first store I saw - though normally wouldn’t as I am not keen on supporting the idea of disposable clothing given nearly all of it will go to landfill sooner rather than later… but I spotted some shoes I really liked - Mary Janes with ruffles along the front. And I ended up buying them in fuchsia pink and lavender purple. I do love ruffles. I am going to keep though for at least for a year… Then after buying some farm produce from the market and three little books in the 101 recipe series (chicken, storecupboard meals and cheap eats) - I waited in M&S’s cafe revive while OH went off to look at the home section.
Last night I watched the BBC prom on BBC2 - a celebration of the MGM musicals which I really enjoyed. Those impossibly melodic sparkling creations really took me to another place: America in the 40s and 50s and its heady optimism conjured up in song. For a while there I felt as if I was on that trolley car in St Louis or singing in the rain on the left bank of the Seine. The music made me happy, but it also made me think that in previous years how much I’ve enjoyed going off to several concerts in the season - but now I would be struggling with enough energy to do that. Think I’ll see what’s left and available this August - time to try to return to normality…, if I can.
…And reading Debsincornwall’s post makes me want to do that. I am so sad to read about her deterioration. But I try to learn from Debs as well as all the other brave ladies who are battling or lost the fight - like Shelley - so that their passing is not in vain. And in the same way I try to pass on what I have learned from my own experience to those who ask. I do think quite a lot now about how much I feel as if in the dark about this disease. I go into the oncs surgery and do what he or she says… but I’m not always doing that in an informed way. I want to keep in touch with latest research and evidence in this field as that will help me make the best choice for me. I wish there was a journal or newsletter for patients and users - that reported on latest evidence on a regular basis by directly translating the findings from academic journals. BCC reports in a sporadic way - but mainly by drawing on research covered in the press. I know from the number of journals and the expenditure on BC research - that is a lot more going on than gets through to users.
Well that’s enough thinking about BC - going off to enjoy the day…
Thinking of you all.
Love
Bright xx
Afternoon Ladies !!
Kate yes is does feel strange not having Jo and Gail writing.
I have just got my appointment for gamma heart scan on 14th Aug.
I have to go for more drainage tomorrow and in the afternoon I meet the radio therapy Dr.
I still seem to be sleeping loads!
Yesterday I was gardening (one of my favourite things to do), I never put any gardening gloves on (I know I should have) anyway I got a incy weenie tiny grass cut from a blade of grass!!
It would be a shame to get lympodema cos of that!!
I have been discharged from pyhsio now for my arm ! I don’t seem to be having any trouble with it at all , I said " I suppose I have been lucky" and she said " and good " meaning I did all the exercises daily.
Well thats it for now , hope you had a nice birthday Kate?
love Caron xx
DUNNIT! Last chemo this morning - oh bliss! By Monday I’ll be crawling out of the swamp, and won’t have to let them chuck me back in again!
Thanks Caron,
Saturday morning, I got up about 4, had a busy day then went to my daughter’s to babysit. When I came home, I just couldn’t sleep. Not a wink all night!!
We went round to my daughter’s for lunch on Sunday. I was soooooo tired, I could hardly talk. That evening I forced myself to stay awake. I watched Chatty Man and went to bed having taken a sleeping tablet about 11. I slept for about 12 hours , went downstairs, anthony(youngest 26) told me he and his girlfriend were cooking lunch for me.
HE enjoys cooking and is very good. It was lovely, Liz and I had a glass of wine and because I’d lost a lot of sleep over a couple of nights I began to feel sleepy again and I went to bed.
John was out when I woke up. I went downstairs, Liz and Ant had gone and had left me another present, THE WASHING UP!!!
So I was not best pleased.
I’ve caught up on my sleep now and am feeling better.
I hope your heart scan goes ok.
Bright, I know the Glades in Bromley, I don’t go there very often these days. I love the sound of your shoes. Once was a shoe girl, but it was an expensive hobby.
HAs the TAX finished yet Susanne?
Andie, how are things with you?
Love Kathy
Happy Birthday Kathy… for yesterday.
Hope everyone is okay
just home from work - will write soon.
Bright x
Hiya all me again.
Susanne… I think you will be starting rads before me but at least we should be able to go though most of it with each other?
Kate did you not get them to bake a cake for you?
I am not having my scan till 14th (Ithink).
Now this is intresting !!!
Victoria has her chemist friend and I wanted her to ask him how rare (or not) was regression, as I have had nothing but good news since the op and some women have mailed me saying they can’t believe they have used the P word (prognosis)and also to be told I am more or less cured when I am still undergoing treatment.
Anyway Nigel said that chemotherapy does not cause regression and that gene therapy does, but also your own body can cause it.
So if Nigel is right that must mean that my own body did it?
Has anyone (even who’s passing through) got any ideas??
I hope I have wrote all this right V?
love C (lol) xx
Caron, apologies I sent Nigel’s reply to your other e-mail address so you may not have seen it. Forwarded it to your usual one now.
But in case you see this first - this is what he said in response to your query about regression:
Cancer regression is used to describe whenever the mass of the tumour, or the extent of metastases has been reduced. Obviously this is the purpose of the chemotherapy before surgery. Complete regression is possible, it would simply depend on the susceptibility of the cancer to the cytotoxic drugs. Regression can also take place spontaneously, very rare but this is the explanation for so-called miracle cancer cures. What Caron is talking about is a reverse transformation of cells from cancerous type to a normal type. I could find no mention that chemotherapy could do this, although gene therapy routes are being talked about. So I wonder if there isn’t a bit of confusion in the way regression was used. DCIS seems to be rather confusing since the cells are cancerous, but not invasive. Most likely it is as you say, Caron had DCIS for some time, then in some region the disease progressed into an invasive form giving the solid tumour. Chemotherapy then killed the large tumour mass where the DCIS had progressed leaving only the DCIS. I would imagine the total regression would be good news since any cancer cells which had spread elsewhere in the body should be as susceptible.
Hoping this makes sense… I think I should also add a qualifier - that Nigel is a research chemist working in a unversity. He understands how the different chemotherpay drugs work and about the compounds themselves by looking at their molecular structure. However, he is not a cancer expert per se but is interested in the field, especially given his mother had bc and recently underwent a mastectomy.
Love Bright x
Thanks V did get the mail in the end I normally use the ntl account as you know.
Hope your afternoon tea with Eileen went good and all your lemon drizzle cake went? (was wishing you could post some down the phone to me but alas that invention has yet to be made!!!) lol
Went to BCN this morning to have back drained she only got 100 out.
Have to go in 8 day’s so consultant can look at the boob.
Also went to radio therapist Dr. and now I am even more confused cos on the consent form he wrote oncologist!!
I am wondering now who is the onc as every dr I have seen I have presumed is the onc!! lol
He did warn me about side effects towards the end I may get tired (nothing new there then!) and he also said the Radio therapy can itself cause cancer (oh great!) and me having polymorphic should not matter as it’s not sunlight.
I am having 15 blasts boob area and neck over 3 weeks.
I asked about not using soap or deo he said I know the nurses told you that and I will get told that in Hull but he said there is no evidence at all it makes any odds, but I said I won’t just in case.
He said I had a very good result in the chemo and I am now cancer free,but the only thing he would be worried about was having milliscule traces of cancer in the lymph nodes, but they have now been removed.
He said if I never had radio then I am a high risk for the cancer to come back.
But surely if I am cancer free (as they say) how can it (the same cancer) come back??.
I am just awaiting the phone call now, still haven’t heard anything about my hearing aid yet, I am not totally deaf in my ear (only one) but I can’t hear people talking in groups any back ground noise I find it hard, I often used to say (before hearing aid days) people might be saying to me OH YOUR A DAFT COW CARON and I would say YES!!
Right thats me done again bye for now love Caron xx
Hi
Oh Caron the Lemon Drizzle Cake was wonderful, how jealous are you!!
We had a lovely catch up and I have told her she must arrange another meet for all of us.
Do they think that your seroma is finished with now?. I will let you know how I get on tomorrow - it’s all very well the BCN saying that they will drain it under ultrasound but if the surgeon doesn’t agree he is the only one who can authorise it.
When my rads was being organised it was the oncologist who went through all the paperwork and consent forms with me. I didn’t actually meet a radio therapist until I actually had my rads planning and even then it was mapped by the onc the radiotherapist just actually does it. I was advised to only use simple soap and bath stuff and to wash using my hands not a flannel or sponge. I was lucky, I had no skin breakdowns at all even though I had the bolus for the last half of my sessions. OH says I must have the skin of an elephant - you can tell we have been married a long while - who else would get away with a statement like that?
Kathy I have my first counselling session this friday. I will let you know how I get on. Today has been a good day - sensible head firmly attached and no tears. We will have to see what tomorrow brings.
Susanne Well done on finishing chemo at least when you come out of the chemo fog this time you don’t have to go back.
Take Care everyone
Andie
Andie YES I AM VERY JEALOUS !!
I have a problem to with seroma I have to go back in 8 days for more drainage and also the bust has been drained once under ultrasound but it just came back but the BCN wouldn’t drain it.
Now the fluid has formed a solid lump anything I wear leaves an indentation and it’s NOT the shape it was either.
BCN said she will get surgeon to look at it cos if it drains then the markers won’t be in the right place, so I guess I will wait and see what happens (actually quite funny though cos I did bring it to her (BCN) attention quite a few times, now I’m more or less ready for rads now she notices!!).
I could marmalize my Jordan (big footed oaf!) told him not to bring his girlfriend in as she had a cough, no I just got ignored and now I have sore throat and dry cough!! (hope it isn’t you know what!)?
Andy I was reading the thread about rads and what cream is best to be honest I don’t fancy using the aqueous cream now as Ive already got bad gums and I am trying to hold on to my gnashers for as long as poss!
Do you know if the Emu oil is ok with nurses? or the radiance ?
Anyone with info much welcomed ! thanks love Caron xx
Hi
Caron During the 4 weeks of rads I tried several different creams and oils. I didn’t like the feel of the aqueous cream, to me it seemed too thick and gloopy. I tried bio oil and emu oil which were both fine and absorbed into the skin easily. In the end I went with E45 and stayed with it, in fact although I am months past the end of rads I have got into the habit of using it on the scars and radiated area every night and morning and am very pleased with the way the scars have healed and the way the skin feels.
I had a seroma following my surgery and the rads planning had to be delayed several times because they insisted that the area to be done had to be a static shape and size and with the seroma being drained and then filling again they couldn’t do it. I got so frustrated because as you know with a seromas there is nothing you can do about it.Eventually it sorted itself out and they went ahead which is why I was so surprised when it all came back again.
When you have rads, as they leave the room they are inclined to say’keep as still as you can’. It was always at that point that I had an urgent need to sneeze or cough.
Have a good day
Andie
Hi Girls
Home from the hospital and very disappointed at the stand that the surgeon is taking. As the seroma has been drained twice recently and immediately refilled he sees no point in doing it under ultra sound. He wants to leave it and monitor it. If it does not get bigger over the next2/3 weeks he just wants to leave it to reabsorb and has no idea how long that will take. He thinks mine is the longest lasting seroma situation he has ever dealt with! The BCN just got overridden with her opionion. Don’t get me wrong I like and trust this guy but am struggling to move on when I can feel this lump every time I move. He did offer me further surgery to remove the sack where the fluid is collecting but I declined; further surgery is the last thing I want just now.
Counselling tomorrow for the first time and I feel an absolute emotional wreck - lets hope she can sort my head out for me
Take Care
Andie
Andie, Sorry to read about your serma disappointment - it is so unhelpful when the medics change their minds. It was lovely seeing you yesterday though and the stocks are so fragrant here in the front room.
I’ve been in quite a lot of discomfort with the rads burns these last few days and they are getting worse - and beginning to affect my ability to sleep. I rang the hospital this morning and the rads unit asked me to go in and see the dressings nurse which I did. She has given me a whole set of gauzes and dressing pads, but I cannot stick them down as the surrounding skin is also quite weak. She did not recommend the use of any creams - unlike the other ladies who have offered advice here. But if things don’t improve then I’ll have to contact the hospital again.
I went to Borough Market briefly after the hospital visit and bought lots of nice fruit. I have developed a real taste for the flat peaches which are for sale this season. I remember when they were a rarity and Tescos sold them as a healthy alternative to the sugar doughnut as they are a similar shape.
I was pleased to hear from my Jane my bc chum from the clinic today, as I had not spoken to her for a few weeks and was beginning to think the worst. But all is well, she’s just been busy and is varnishing her kitchen floor as I write this.
Hoping everyone is okay and not too depressed by the rain tonight.
Good luck with the counselling tomorrow.
Love Bright x
Hi
Thanks V. I was so disappointed when I got home from the hospital. It just seems I must play the waiting game for yet another 3 weeks to see if anything will happen. I seem to have spent the last year waiting from one appointment to another. I really feel quite sorry for the counsellor tomorrow. You got the sensible head day - I think see will get the panic one!
Glad you have heard from your clinic pal, I know you were getting worried.
I will report back tomorrow
Andie
Andie,
Cry all you need to with the counsellor. I do!
I’m afraid I haven’t had my sensible head on for quite a few days now. I’m feeling very emotional and down. I’m usually quite upbeat. My friend is back from lake Bled and is coming for the weekend. She is relly good at lifting my spirits, but I think she’s going to have a job this time!
Victoria, I’m sorry you’re suffering. I had a really rough time with rads. I burnt badly and my skin was a real mess. No cream but mepiflex dressings, which I did find helped, as I was in some pain.
I hope it doesn’t last too long for you.
Caron, how does aqueous cream affect your gums? My teeth and gums really were bad with chemo. the bleeding was so bad. But my gums haven’t bled since and I’m using aqueous cream every day.
Love Kathy
Hi
Well as I suspected the counsellor had to deal with a panic head that continually leaked if you know what I mean.However when she made me go back over other things that have happened in my life including losing my mum to undetected breast cancer, my dad having a fatal heart attack 3 days after my mums funeral and a husband who was a front line policeman through the 70’s and 80’s and constantly in danger dealing with riots and street unrest(Back before the advent of mobile phones and instant comunication)plus other family situations, my stress levels at the uncertainty I now face with the responsibility of self monitoring for any return is not surprising. In fact its almost as if she has given me permission to cry.
I’m going again next week, I really had not connected how I feel now, with what has happened in the past.
I hope everyone has a good weekend - I wonder which head I will wear
Andie
Hiya all HAD MY RADS PLANNING !
Kate if you look on radiotherapy strand it say’s there about the aqueous cream and hastening gum disease, but I don’t know if there is any truth in it?
Like you Kate my gums are bad, I have beautiful teeth and crap gums!
Actually did you know this that they now believe it’s genetic but they won’t do anything about it (piling money in it) as it’s not life threatening, my auntie Margaret has real trouble now and one of her teeth came out recently, on it’s own !!.
Well yesterday I had a phone call from Castle HIll they wanted me to be there at 9 am today ! (short notice or what).
We got there at 8’45am, was seen by a male nurse for a chat and consent forms then I was taken for a CT Scan where they trussed me up like a chicken!! lol.
Then they did the 2 tattoo’s which never hurt at all.
Couldn’t believe I was only in there 10 minutes !!
Then we saw another nurse for more chat! then we could go home we ended up waiting for my times etc but we decided to go in the end cos the receptionist didn’t know how to print my times and date’s so she was waiting for the invisible man (cos he couldn’t be found)
So in the end I said send them to me!!! (I mean).
So my appointment was at 9am and we got out before 10am !!
How about that !
I start my rads on 26th (wed).
Victoria where did you have your rads? I’m sure that photo was of your neck??
Which is the worst place to have rads as it’s not got much fat there.
Andie I would say it will be a while before you truly let out how you feel to the councellor.
love Caron xx
ps just going to look back now to see when Susanne is starting her rads. xxxxxxxxxxxxxxxx
Good evening girls,
Sorry Andie and Kate that you are both feeling upset at the moment - hope your friend cheers you up Kate, and that you will begin to bond with your counseller soon Andie.
My radiotherapy sessions took place at Guys and St Thomas’ Caron.
Aqueous cream is a very simple product and cannot impact on other parts of the anatomy. My oncologist was also adamant that this is all I should be using during radiotherapy sessions as other creams can contain other substances particularly metal particles which can intensify the burning effects of the radiation.
I think we all feel emotional when it comes to learning to live with this disease, and the impact that it has on multiple aspects of our lives. My rads burns are improving slowly, but at times I feel as if the whole treatment process has been something of an army assault course to endure and get through to reach the ‘other side’. But defining and then coming to terms with the other side has further challenges. For it is far from a certain place. And it is dealing with that uncertainty, the never knowing, that is so challenging. Like walking in field strewn with landmines.
I’ve been working quite a lot today - preparing for various conferences and events in the Autumn term, and still not being quite sure whether I will feel up to taking part, but hoping so. I went out at lunchtime to go shopping in Balham and enjoyed looking around the book store opposite the station called My Back Pages, then bought some vegetarian bacon from the whole food store along the high street, before doing a main shop in Waitrose - looking for more flat peaches, for which I’ve developed a craving, while they are in season.
Wishing everyone a peaceful weekend.
Love Bright x
V, you never read it properly.
I meant where on your body!! lol not the place…
Thats why I said it looks like ur neck.
love C