Go Dan. Thank god there are people clever enough to find the best treatments and keeping pushing things forwards for the future. Thank you also @annemanc for telling us its just bad luck. I am overweight so I have been questioning could I have done more to prevent this, but hearing solid words of advice on it just being bad luck from someone who is studying the disease is a big help.
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Yes they was fantastic. I recommended on the June starters thread and forgot to post on here. They delete all your data after they have dispatched the goodies.
I also had a bag from cancer support and use their book and pen to write a daily diary. Lots of practical things included. All free and you can donate if you can.
Please thank your husband Dan and all his colleagues for the work they do. They are helping to improve treatment and survival rates and get little mention in the public eye. 
@Craftyj so sorry to hear you couldnāt continue with the cold cap but at least you can say you tried. Iāve done 3 weeks, but this week with my allergic reaction they left it on far too long and when I was being sick I really didnāt want it on. I will try again next week and see how I go. The first 10/20 minutes are the worst. The first week I didnāt have a hair band or protection on y forehead and had the most banging headache, which the nurse said was normal. Other nurses said it should only last a short time not the whole session. This improved by wearing a headband across forehead and tops of ears. We all know losing our hair is a side effect of most chemo and itās hard as a woman to come to terms with but it will grow back. Fashion it out with a wig and scarves there are so many out there. Do what feels good for you!
To those of you with children living at home I canāt imagine what it must be like for you and them. I work in a primary school and with the head we decided not to tell the children as it can be traumatising for them, they just know Iām not well. My children are grown up but are still my babies and they both live about 70 miles away. They are both very affected, my daughter is concerned about genetic risk as Iāve been referred. Iāve only spoken over the phone and Facebook messenger video, my worst days are the weekend which is the only time they can visit. Hopefully they will be visiting next week which is nice thing to look forward to. Like someone said before when your children want a cuddle or are unwell itās in your instinct to be there for them no matter what youāre going through. It took until my daughter was 18 that I had pneumonia and I couldnāt get out of bed, up until then Iāve always got up and muddled through even when feeling I shouldnāt but they came first. You can always mitigate by wearing a good quality mask in close contact especially if they are flu/cold/sore throat. Something else Iāve learnt through the pandemic is the opening of windows to ventilate your home. Iāve always opened the bedroom but now open more windows downstairs.
I had a good day yesterday but had a bad nights sleep last night awake for 2 1/2 hours listened the headspace app and the phone died. Itās a mindfulness app and recommended by www.Penny Brohn.org.uk They are a Bristol based cancer charity but support whole of U.K. lots of online resources and zoom meetings as well as personalised programmes. Free to all but donations welcome. If you join a welcome meeting they mention the Headspace app and if you sign up for trial and like it, contact them and they give you a code for the subscription for free.
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Hi all, having a bad day. Midnight Friday,v1 week after 1st EC, I woke with the most awful pain in my back and shaking uncontrollably. Fearing sepsis, I called the chemo helpline. They got a GP to call me and arranged for me to go to our local assessment centre. On arrival, GP said my temp was 38.1 so he called an ambulance to fetch me to our nearest main hospital. I arrived in A&E 2am Saturday. I was taken straight into a private room and tests started immediately. It was all good and I felt safe except that they kept banging on about my risk of infection. The room i was put in has no WC so I have to use a shared WC - just one for all A&E patients. There are people with covid, and vomiting, all using the same WC.
By 10am Sat, I felt much better and asked to be discharged. I had to wait until 6pm to see a consultant who said I needed to stay in for IV antibiotics. Its now 6am Sunday and im still in A&E, still using a shared WC, not had any antibiotics through the night as the nurse gave me IV paracetamol and forgot to come back to hook up the ABs. I got upset and she went off to see a doctor. That was 7 hours ago. Nurse came in to me around 2am and said the doctor had prescribed IV saline. She hooked that up and went off. When i woke at 4, i could see the IV line wasnt working and i was parched.
Still not had antibiotics so have been here all night for nothing. Room im in has no window so ive been sat in a dirty little box for about 28 hours. Really upset and not feeling cared for at all and thinking of discharging myself but i dont know what the repercussions would be.
If I had any issues again with chemo, i would refuse to come to A&E.
Just feel so low and as though they think im being difficult.
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Milly156 
Iām so sorry you are being treated like this and have not been moved to safer space with your trust. Ask to see nurse in charge tell them they have a duty of care to you and you should be on a much safer ward with the hospital at the same time advise your drip wasnāt working so clearly hadnāt been checked properly. I know no one likes to make a fuss but you must Iām sorry you are in casa nhs I had a 6 day stay after my first chemo but the lovely people on this forum got me through, they virtually grabbed hold of me and weāre chatting on here as will everyone now with you all for one and one for all like the musketeers 
we got you Milly156. Hopefully you get moved to a ward. Something I would advise is to ring your rapid response number and let them know whatās going on and where you are in the hospital, they might not even be aware you are in A&E, worth a call as you came in via a&E communication isnāt always strong point within nhs sadly. 
Shi xx
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Hi Milly156
So sorry to hear youāve had such an awful time of it. In addition to feeling rotten physically, you must now be feeling very upset and forgotten about. Rotten timing having to go in over a weekend too. You must feel worried using that toilet with everyone else. Which hospital are you in? I hope that you are home safe and sound very soon and can get to see someone helpful before then about the antibiotics.
Let us all know how you get on. We are sending you supportive hugs
xxx
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Hi Camy Radika
Sorry to hear you also had to have such big surgery and had those results. And sorry to hear you are still recovering whilst on chemo. Lovely graduation photo - 
.
Itās lovely to hear that the physio thinks you are doing well. I have not yet been referred to the physio but think I really could do with it. How did you get it arranged? I have asked but nothing seems to happen physio wise. Did you find the chemo made the underarm and chest pains worse?
Love to all here
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I agree, we just want to make everything as OK as possible for our little ones. I donāt like my son having to see me anything but well, but I try to tell myself they will have resilience and hopefully cultivate acceptance. Our son doesnāt want others to know as at 12, he wants everything to seem as ānormalā as possible. Hopefully get wig on Tues or Wed.
Love to all
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I. So sorry to hear this @milly156 being immuno suppressed you should be protected and I donāt think A&E is the place. I really wish health boards would bring back masks at least that would reduce catching something from others. Does your local cancer not have an inpatient ward. Velindre in Cardiff does and a friend of mine was poorly with her chemo and the ambulance took her there with staff that are SACT trained.
Iāve been told several times even after surgery that they donāt want me anywhere near A&E.
It seems they are overwhelmed in the department and they forgot your antibiotics, surely you should have had them asap not hours later.
Can you or someone contact your helpline and explain what is happening? Iām hoping you have someone with you or someone who can advocate for you?
We are all here for you. Please reach out and rant.
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Hi dear, thank you for your kind words I am in Ireland so probably the things happen differently, I am following this forum because I have not found one so active in Ireland.All the preparations and appointments were made by the Waterford Breast Cancer team at the hospital that performed my surgery,same for the physiotherapist. But I didnāt do many exercise wit the physiotherapist, he only shows a few movements and ask me how I am doing at home, and measure the hand , but nothing else new than I was already doing, exercises from the flyer I received in the hospital. Honestly, I donāt know what itās like in other hospitals, but I had a good experience with them. Chemotherapy is done at another private hospital, in another city, but they still take care of everything the oncology nurse warned me that after chemotherapy I will feel different under the armpit, or that the movements or lymphoderma may appear, but I still havenāt seen a change for the worse I only had two chemotherapy sessions, now Iām waiting to see what will happen next, I hope it wonāt be worse.Every time I go to chemotherapy I have emotions and I am worried. and I hope it will be good Take care my dear, all my best wishes to all.
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Oh dear, Iām sorry youāre going through this, I understand and feel sorry for you, and I understand your frustration, youāre right, there are no safe conditions for a patient with ongoing chemotherapy, you are right to complain, I still say that you should notify the oncology department you belong to, didnāt they give you a phone number? Let them know and advise you.Hopefully you will get out of this situation and that everything will go well and good health my dear. Take care of yourself, try to protect yourself from other sick people, possibly carry disinfectant and a mask with you to the bathroom.They are with you, donāt get discouraged and complain to the nurses, ask for a doctor, donāt let them sit comfortably and leave you unattended.Take care and keep writing here. we are all with you.
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@milly156 so sorry you had such a horrendous time. I hope you are safely back home and feeling a bit better. Big hugs.
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Oh no, thatās awful,
Iāve been to A& E twice since starting chemo in July and both times I ended up in there for one night but taken to a ward following morning, I did have to shave the loos as you did, awful, small, smelly and germ riddledā¦and difficult to use if plugged in to a drip.
Is it the same hospital as youāre treated?..can you ask to see your oncologist?
Keep making a fuss I guess is all you can do. Iāll keep my fingers crossed for you.
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Hi, thankyou all for the hugs and support. I really couldnt cope with being there any longer. Eventually a nurse and healthcare worker listened to my concerns. The problem was that the consultant was saying i had to be in a room by myself because of my compromised immune system, but there were 2 others in a queue before me and no rooms available. So there was little chance I would get out of A&E.
They said I could go out for a walk but I took my things and left.
Im back home now. Thirsty and exhausted. Not sure what the consequences will be of my leaving.
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Milly156 do keep eye on your temperature, I know you donāt want to be in hospital but if you feel unwell you must rapid response it or 999 it, not wanting to 
you but your team will need to get antibiotics into you asap, everything is your choice but please look after yourself and please ring your team in the morning and let them know directly whatās gone on. Sending big hugs Shi xx
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Where are you in your cycle too, are you in the nadir phase? Shi xx
Nadir phase? I had to Google it, low blood cells. Is that your first few days (weekly) or week (3 weekly)?
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Hi
So sorry again for the situation youāve been in. Do you have a 24hr helpline you could call and explain what has happened and get some advice from them?
Do you get the iv antibiotics?
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Well today has been hard. Only on day four after first chemo but have had horrendous tummy issues today. So much pain, first from three days constipation then from diarrhoea. Has anyone else had this. Have taken meds for the diarrhoea and have managed some very plain food. Hereās hoping tomorrow is better. Today one of the most mentally challenging since treatment started. I am on neoadjuvant chemotherapy (so before my surgery). Hats off to you ladies who have already had surgery then gone onto this. I know its making me better butā¦
I am on Phesgo, Doxetaxel and Carboplatin plus other assorted meds for all the side effects. Did anyone else have issues like this on week one?
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do let your team know about 
botty, I know it might seem a bit ott but you have to be more vigilant of everything during chemo always best to check with your teams I was on the phone like Batmanās bat phone and my team drummed it into us, always ring and check it helps them get you safely through Shi xx
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Are you on a 3 week chemo cycle? If so itās usually between days 8- 15ish where your neutrophils are at their lowest but anything check with your team. I had no temperature but my wee was burning and it was s uti that needed a toy and I was in casa nhs for 6 days so always ring teams to check theyāve seen it all before and will know if they need to get you in quick I know no one wants to make a fuss and bother them but please you must check things with them so they get you safely through Shi xx
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