@belle1 That is REALLY great news about your genetic testing. I am still awaiting my results but I’m so pleased to hear yours. It’s good to know that you can get rid of this one and not have it hanging over your head. The way I see it is that at least the medical profession will keep an eagle eye on us after this. It’s like having the ultimate insurance policy.
XX
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Hi all.
Just wanted to let you all know I’ve also received my genetics results this week. It is negative 
it’s such a huge relief to know that my treatment plan now has an end and that my children are not impacted as much. My daughter is still entitled to earlier screening due to my diagnosis, they advised that she ring the genetics team from age 35 but testing may not start until 40.
Great news @belle1 about your genetics negative results aswell. You like me have set up gym equipment in the garage and house. I already had a few items but added more during Covid and haven’t gone back to the gym since. I don’t miss it, it was so full of germs. I used to clean my equipment before and after exercise as so many others couldn’t be bothered or just wiped it down with their own towel that they wiped their face with 
I think you are amazing doing exercise during your chemotherapy, I managed to walk and tried yoga but it irritated my PICC line so I stopped.
I had a free session of reflexology and it was a lovely foot massage and relaxing. I asked to help with hot flushes, it didn’t help, maybe a I need a few more?
@suedot thanks for mentioning the Where now course with Maggie’s, I hadn’t heard of it. So will be looking into it.
I have booked the BCN Moving Forward course in July and wanted to do it face to face as I haven’t been able to meet many local ladies in my situation. Online is great but I really need to get to know others more locally that know what I have been going through and how I feel. So many people keep saying ‘How well I look’ but inside I don’t feel so great. I got offered some face to face counselling with Penny Brohn but they wanted me to commit to 6 Fridays in a row and I had a holiday booked and hospital appointments within a week of their start date. So I’ve asked them to put me on hold for a few more weeks. Fingers crossed they will come back to me at the end of May.
@salbert is it another infusion day today? How many Paclitaxel have you had so far? Hope you are doing ok?
Thinking of you all 
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@naughty_boob I am beyond thrilled for you. That is such good news. It really is.
I’m also really glad that you are doing the Moving Forward course in person as I believe it helps massively to meet other women going through the same as us. I hope you can get the counselling at a later date.
I did indeed have Paclitaxel No. 3 yesterday so I am a quarter of the way through that bit now. I started EC on 22nd February so in terms of dates, I am over halfway through chemo. (Not in terms of sessions though but I like to see the positives!) Still doing remarkably well actually. Long may it last.
I have written a piece about my experience of breast cancer that I posted on Facebook the day before yesterday. I spoke about you lot and how wonderful you all are. The response has been so good that I thought I would post it here too. You all deserve to know how much you mean to me.
Salbert
xx
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The day that you walk into your Breast Clinic appointment and get given a breast cancer diagnosis isn’t actually the worst day. Not for me anyway. D-Day (Diagnosis Day) was 9th November 2023. That’s a date I’ll never forget. You see a MacMillan nurse sitting there with your consultant and assume she is there to sit in on all appointments. It must be a training day or something. Then you discover she is there for you. You get told it’s DCIS (Ductal Carcinoma in Situ) and that it’s Grade 0, but a breast cancer diagnosis nonetheless. Ok, so it’s a ‘good’ cancer, you think. You get taken into a side room after the appointment, where the MacMillan nurse gives you your very own Breast Cancer Pack which you tell yourself doesn’t really apply to you as you will go into hospital, have it cut out, a quick bit of radiotherapy and you will only have to tell a select few. In fact, you will be able to carry on working your three jobs, that’s how little it is going to impact your life. You certainly won’t need to tell your teenage son or elderly parents. Yeah, mental self-preservation in the form of total denial kicked in straight away.
So you go into hospital and about a month later you go back into that consulting room for the results. That’s when your life goes into freefall. That point where they tell you they have found invasive cancer and that it’s an aggressive one. You will need more surgery as they haven’t got all the cancer out and you are no longer Grade 0, you’re Grade 2. They will need to remove some lymph nodes to check it hasn’t spread. That’s when you really shouldn’t Google but naturally you do. You go down some dark and scary internet rabbit holes that take your mind to places that leave you paralysed with fear. This is when you need amazing people around you who know how to constantly talk you round and ground you. I was lucky there. I have an incredible husband and a best friend who lives 2 minutes away.
You go into hospital again and 2 days after Christmas you get told the cancer is in your lymph nodes and that you will need the remainder of the ones in your right armpit removed. Plus which, they still haven’t managed to remove all the cancer so it’s another op on the cards. Yes, 27th December 2023 was the day where despair hit. Now there would be scans to check my vital organs and bones, to see if it had spread. Now there would be chemotherapy ahead. But still, that wasn’t the worst day.
New Year’s Eve was desolate. I just wanted to go to sleep and not wake up until it was all over. Every time I awoke it would be a split second before CANCER – YOU’VE GOT CANCER would hit me smack in the face again. I would oscillate between disbelief and horror but underlying every thought and everything I did was a perpetual heaviness. I’ll always remember the phone call I received from a concerned friend at midnight when I was standing alone in my dark kitchen, listening to the fireworks going off and feeling terrified of what 2024 would bring.
Breast Cancer Now forum became a lifeline. It still is. I set up a thread calling out for buddies going through the same breast cancer diagnosis as mine. (Yes, there are different types of breast cancer and you become an armchair expert about them very quickly.) I was constantly told that the fact finding part is by far the worst bit, where you are left in limbo, not knowing how bad your cancer is and what stage it’s at, which leaves your mind doing battle with itself daily. Everyone tells you to be positive which is absolutely the right thing to do. Actually doing it requires throwing every weapon in your arsenal of coping skills that you have ever learned at it. Constantly. Meditation, exercise, counselling, mindfulness, praying, podcasts and talking, talking, talking.
Next came the scans. CT scans, bone scans, MRI scans; who knew there were so many types? I learned a new word here…scanxiety. The wait for results seemed interminable and every day after finishing working from home I would go walking listening to Eckhart Tolle to ground myself in the now and to stop my mind from taking me to the darkest of places. It was mentally and therefore physically exhausting.
Once more into the consultant’s room on a cold and grey January day. We were allowed seconds to celebrate the cancer not having spread beyond 2 lymph nodes before being abruptly cut off to be told that there were areas of concern in my spine, liver and lungs. Now I would need the mother of all scans, the PET-CT scan. On Tuesday 30th January 2024, my husband and I drove through the rush hour traffic to Guildford on a dark, wet evening, where I sat alone in an unlit room waiting for the radioactive tracer injection to be metabolised. I had an hour to wait which gave me a lot of time to reflect. I had been told that these were red flags. If the cancer had indeed spread to my spine and internal organs then I would probably be looking at 2 to 3 years, not even sufficient time to see my son reach adulthood. That day was bleak indeed. Yes, there was the worst day.
You see, to state the bleeding obvious, it can only go one of two ways. One of these means a cure, your life back, an eventual return to normality. The other means treatment for the rest of your life and depending on how far the cancer has metastasized, that may not be too long. There is a section of the Breast Cancer Now forum entitled ‘Living with secondary breast cancer’ and within that, a thread entitled ‘Palliative care and end of life’. It’s like the room that you don’t want to enter. I’m mindful of the people who have reached that point and find themselves in that lonely room. Not many people go there. I guess it’s too scary.
Just over a week later and when I really thought I could take no more, I called my MacMillan nurse team to quite literally beg them for my results. They were in; there was ‘no uptake’. I had to ask what this meant because by then I was so used to bad news and yet more bad news, that I couldn’t quite comprehend coming to the end of it. She confirmed to me that this meant that cancer had not been found in any other area of my body. It had not spread beyond the 2 lymph nodes in my right armpit and was therefore Primary Cancer and not Secondary Cancer. I was one of the lucky ones.
How do you adequately describe the relief at being given your life back? I’m not sure I can, but I do know that this was the day that I started eating again and quickly put the half a stone back on that I’d lost. I rediscovered sleep and the weight of the world was lifted from my shoulders. Recently I noticed I was laughing once more and have even started to sing and dance in the kitchen to Radio 2 again while cooking, and for once I think my family are actually happy about it.
Chemotherapy started on 22nd February 2024. I am having the works which consists of 3 different chemotherapy drugs which is due to finish in July all being well, and then I will have a mastectomy, reconstruction and radiotherapy. I am very lucky in that my type of breast cancer, known as HER2+, now has a wonder drug called Herceptin that has been a game changer. From being one of the worst types of breast cancer to get, it has now become one of the best due to this, and I am going to get a year of these injections. 20 years ago, having HER2+ breast cancer would have been very bad news indeed. Today it’s not.
I had done everything right. I’d always checked myself and gone for all my mammograms but my cancer never showed up on these or on any subsequent scans. It was hidden away in a duct and it was my body giving me symptoms which took me back to the doctors on three occasions until it was finally discovered by a biopsy. So what I have learned is this.
JUMP ON YOUR SYMPTOMS! Do not ignore them. At a recent iron transfusion the nurse told me that it seems many patients are reaching them when their cancer is more advanced, probably due to a Covid backlog but also because of telephone appointments which she believes are not as informative to the medical staff as seeing someone face to face. If your body is telling you something is wrong, then do not ignore it.
The sad fact is that for various reasons, not least of which is the fact that we are living such long lives, 1 in 2 of us will get cancer. A staggering 1 in 7 women get breast cancer. The Clinical Nurse Specialist on my team at the fabulous Royal Marsden told me recently that the vast majority of breast cancers are now curable and of those that have progressed to Stage 4, most of these are treatable, which means you can go on living with it for many years. However, it goes without saying that much depends on the speed at which you get diagnosed and get treatment underway so DO NOT DELAY. It’s staggering to me that such a tiny bit of disease, I had just 2.3 millimetres of invasive cancer, had already made its way to 2 lymph nodes. Amazing that something so small has the potential to kill you but then so does bacteria.
Stick to reliable websites such as Breast Cancer Now, MacMillan and Cancer Research UK. There is a lot of outdated and frightening information out there and for your mental wellbeing you need to stay away from a whole lot of it. It doesn’t help to frighten yourself witless.
Introduce yourself to all your sisters (and occasionally brothers) on the Breast Cancer Now forum because the camaraderie and support on that site has and continues to carry me through.
Take action now to eat healthily, meditate, learn how to breathe for relaxation, pray, be mindful, treat your body with respect, just like I never did but hey, nothing like a reformed habitual hedonist to tell you what to do!
Listen to the people who have been there and give you gems of advice. My favourite was ‘Put cancer in a box and get on with your life. Visit it when you have to’.
Get yourself a Cancer Coach; by this I mean someone who has been there. I’m lucky enough to have two and they are empowering women. I’m happy to be yours.
My friends, I am going to be fine. My team are talking ‘curative treatment’ and I am doing well. All those years of partying seem to have stood me in good stead as years of alcohol training have primed my body for a regular chemo poisoning. I am like an elite athlete! Sure, I don’t have much hair left but I am truly embracing wigs. (Although I’m not so sure about the hair my cousin knitted me or the Australian cork hat and white plastic Stetson my mother gave me on the grounds that “It’ll be fun”!)
They’ve been a great pair of tits and I am grateful to them. Depending on the outcome of my genetic testing, I may have to say goodbye to both, but they’ve done me proud over the years what with all the acting roles they helped me to obtain. (My husband pointed out that I really needed to quantify exactly what type of acting roles these were, as when I said this to my oncologist it did rather have the effect of making me sound like a porn actress). Oh and of course, I breast fed but not quite as successfully as I did the nipple tassle twirling! On the plus side, I will have a brand new, perky pair at the ripe old age of 53 with a tattooed nipple to boot. Winner!
When this is over, I vow that I will finally get my backside over to New York which I have been threatening to do since I first sat entranced by Saturday Night Fever and Fame. Who knows, maybe I will get to dance on the roof of a yellow taxicab and not get arrested? But I’m not going to find reasons not to anymore. The past few months have taught me not to say ‘one day’ as ‘one day’ is not guaranteed. I have never experienced old age envy before, but when I was awaiting scan results back in January, I would go for my daily walk and quite literally feel jealous of old people that I saw who had been gifted a long life. And life really, really is a gift and one I am so damn grateful for.
To end on a positive note, the very best part of having breast cancer is discovering the incredible love and support that you have around you in your family and friends. I feel so loved and I thank you all for dragging me through the past few months. I will never forget what you have done and continue to do for me. And now, the sun is finally shining and I’m going to get out there and enjoy it. At the risk of sounding cliched, it really does make you appreciate life more and stop sweating the small stuff. I wish you all long, happy and healthy lives, but if this unwelcome invader ever takes up residence in your body, then send me my call up papers. I will be an awesome ally to have for your army because right now, I am kicking cancer’s arse royally!
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Absolutely brilliant. Maybe BCN could use it as inspiration to others on this journey.
Let’s keep our fingers crossed that your genetics is also negative. So pleased you are halfway through your treatment, it’s so important acknowledgment those milestones for your mental well-being. I still do the same with Herceptin, next week I’ll be 12 out of 18 2/3 done!
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@salbert I just love this. I don’t know why but there feels to be something about the fact you were diagnosed on the day I was 6 of 7 chemo cycles in and ‘celebrating’ my 60th birthday! I call 9th November ‘the other 9/11’
. I really hope you are still doing OK on treatment. Take care. Sue
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Thanks @naughty_boob and @suedot
I LOVE the alternative 9/11. I am SO nicking that! 
Brilliant.
I do hope my genetics are negative but if they’re not, then at least I will know about it and can do something about it.
I’m doing ok but I am getting tired now. I dropped my parents (who are in their 80s) off for a night out last night then went home and was in bed at 8:30pm. Something not quite right there!! 
I’ve been told I will get a break in between finishing chemo (all being well that will be 4th July) and my mastectomy so I can get a break in. My brother in law lives near Cardiff and dropped by this morning. I think I may check out train fares to Wales now. It would be good to have that to look forward to.
Eurovision week this week. Now THAT will carry me through this week, make no mistake. Chemotherapy be damned! Nothing can get me down at this time of year. Not with all that sequins and glitter! 
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That message you posted was great and I love your attitude towards the genetics too😁
Haha my mum went to her friends for dinner and I got a text at 240am saying she was just home…. Definitely some sort of role reversal thing going on here too😂
Enjoy your Eurovision week lol!
Thanks @belle1
Once we are through this, we will need to take a leaf out of these oldies books!
My outfit for this year’s Eurovision final will resemble a drag queen. I will post a pic!
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Hi 
all I can say is “you go girlfriend” 
@suedot I asked my oncologist yesterday whether chemo makes us lose antibodies as you so cleverly questioned a couple of weeks ago. He said it was a very good question that nobody has ever asked before but that pleasingly, the answer was no. We retain them all. Phew!
Have a great weekend everyone.
Salbert
x
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I forgot all about that being brought up and am happy you asked and put the answer on this as my immune system has always been a bit crap so would hate for it to get worse after all this🤣
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Hi everyone. I started chemo in January and have just 2 more paclitaxel. I was feeling happy about getting to the end of chemo but now I am starting to think about what comes next. I can’t sleep. I will have a lumpectomy probably at the end of June then radiotherapy. I have lots of thoughts going through my head. I also wondered if anyone can help with advice on ESA. I will be on half pay soon and nobody seems to be able to give me a straight answer about claiming. If I am on half pay does this mean I am on statutory sick pay and therefore unable to claim Employment and Support Allowance? Hope someone can help. Thank you.
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You are most welcome, @suedot. It was good to know the answer.
Hello @northerngirl55 - You couldn’t sleep, could you. I see the time you posted. I think we all know all about those nights of fretting. If you are at all worried about the surgery then I have had 4 surgeries now (1 Hadfield’s Procedure, 3 lumpectomies) and can honestly tell you that it is absolutely fine. I worried before the first one but now I wander into the operating theatre chatting to the staff until I go under. I’m truly blasé about it now. I really don’t find those ops bad at all. Having my tonsils out was way worse!
I don’t know about ESA but I do know that half pay is not Statutory Sick Pay. SSP is rubbish money. It’s £116.75 per week and so unless you are told that is what your employer is paying you, then I would say you are not on SSP. However, I am certainly not an expert so I hope there is someone on here who may have more of an idea. @naughty_boob Do you know about this? (She is usually a font of knowledge!)
I really hope you get some sleep tonight. Big hug.
Salbert
x
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Hi Salbert
Thank you so much for your reply. That’s very reassuring. I don’t think I am too worried about the operation. I just started thinking about the whole process of what comes next but chemo is one huge hurdle which is almost over🙂. I managed to get to sleep eventually.
I thought the same about SSP at first but when I checked my payslip it stated SSP as a component of my full pay. When I spoke to Citizen’s Advice they said I should check with my employer. I phoned HR who gave me another number to call which no-one answered! I have asked my boss about it so hopefully I will get an answer soon.
I hope everyone is doing ok today and it’s sunny where you are xx
I had a letter from my payroll department about a month before the statutory sick pay finished, with an SSP1 form. I was still on half pay and able to claim. It covers your national insurance contributions aswell. Employer form SSP1: Statutory Sick Pay and an employee's claim for benefit - GOV.UK. I had to complete this and send to the department for work and pensions (DWP)
My payroll department were quite dismissive when I rang to ask for help. I was in the middle of chemo and my brain wasn’t working properly. I had worked for them for 20 years and had hoped for more support. They just told me to ring the number on the letter.
The phone number I rang was to the DWP and went through my situation. The Employment and Support Allowance [ESA] was paid quite quickly after my SSP finished. They sent a very long booklet to complete with a final page to be completed by my oncology team. I had to send copies of my Fit For Work note and then after about 12/13 weeks they confirmed they had processed the booklet and accepted the dates given by the oncology team, so no more Fit for work notes.
You can also apply for Personal Independence Payment (PIP)your treatment is affecting your life. Even preparing food can be problematic, cutting yourself with a knife, handling raw meat while you have a weaken immune system. Needing help showering or dressing.
Sorry to hear you aren’t sleeping well, I had surgery in July, finished chemo in December and radiotherapy January and I still struggle. Hot flushes from either Herceptin or Letrozole. Have to wait until Herceptin finishes in September to see if it get better. You can get sleeping tablets from the oncology team or GP, they help a little. I find if it take them I get back to sleep quicker. There is also an app that is free for cancer patients called Sleepio. It was ok more for insomnia than medication/treatment sleep issues. But worth a try.
I hope this helps.
Thank you very much. That’s really helpful. I will have a look. When I phoned HR they asked if I had received a letter so I assume that’s the letter they were referring to. The person I spoke didn’t know if it had been sent!
I have already applied for PIP and I am waiting for the outcome. I don’t usually have much problem sleeping except after the steroids but if it carries on I will speak to someone. I have an MRI on Tuesday so I am hoping the cancer will have shrunk some m
Have a good evening and take care 
xx
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@naughty_boob - I tell you what, if you ever decide to not go back to teaching you could certainly get a job at the Citizen’s Advice Bureau.
@northerngirl55 She’s great, isn’t she? I knew she’d know!
So…Eurovision. I was so elated that Switzerland won that I didn’t manage to go to sleep until almost 4 am this morning. I am now Dad sitting and pretty tired. As promised, a picture of my spectacular outfit. I was most pleased with how this one turned out. 
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