I hope you don't mind me popping into this thread but I could do with some advice on hair loss.
I used the cold cap for my 1st but not 2nd and 3rd FEC. I didn't get to start the T due to complications. My last FEC was 6 wks ago and although I lost a lot of hair I still kept a fine covering and had a pixie cut, didn't need to go the whole hog and get it shaved. However, I've lost more hair in the last week, especially the last couple of days and the painful and sensitive scalp has returned. My BCN said a few weeks ago that I shouldn't lose any more so I'm surprised to be losing hair after 6 wks of no chemo. My hair did grow back a bit in between so I'm wondering if the longer, thus heavier, strands might be causing this? I'm concerned because the small patches of baldness are getting bigger and I'm actually considering having my head shaved because of this and the pain.
I would appreciate any advice from those who have ended treatment. Thank you and best wishes x
Molliana, I wanted to thank you for this thread. I have transferred to the September Sizzlers, as I started rads. Hugs, Egret x
I just wanted to thank you all for being so up front & honest about your chemo side effects. I start my first FEC-T tomorrow & have spent the morning at Tesco stocking up on prune juice, figs, dulcolax & the like. Obviously a nervous day for us, but we laughed our heads off at the "I'm not allowed in the downstairs loo in case I blow the house up" & "my farts are worse than the dog's". I am on the August 2015 thread where everyone is very polite & not a word has been mentioned about all this. I can only say a huge thanks & hope you are all feeling really well now. I will also feel a bit queasy about tennis next time I have to pick up the balls Val! Wish I was you lot ..... xxxx
Hi! Sharing good news.
I hope everyone had a good weekend.
Rad from 14 Sept to 9 Oct. The rads were delayed at my request, so that I could have a holiday!
The Royal Free Hospital team is so caring, I could cry.
Not only caring but efficient: 3 appointments, two phone calls, one letter (CC to me) informing my GP, detailing my diagnosis complete with what I told my new Registrar. Tattoos done (I was offered a choice, permanent or temporary ones); and tomorrow 1 1/2 hour breathing lesson. Everything arranged within 1 week. Even the parking is specially reserved for rads patients and very close to the entry door! I am very impressed.
Not a word from the hospital in Hammersmith since removing my portacath last Thursday. I was neutropenic (0.6 neutrophils!!! that's pretty low!!!) but my old hospital did not ask to see my blood tests - although my new hospital did them in case I needed them. I was so desperate to get the portacath out that I said nothing.
Yipeee!!! I am going to France next week for a holiday!!! Wish all of you well!!!
I met the RFH team, they were welcoming and gave me a full explanation about everything, including radiotherapy. I was told I have pre-cancer cells on my L breast. I don't think I was told of this before - 4.6cm, this is in addition to the 2.6cm removed lump. The 4.6cm has not been remove. This is why I need rads. The chemo destroyed any new iffy cell, but because those are "pre" (i.e. not touched by chemo) my two treatments (chemo+rads) are complementary. So, I get not 3 weeks of rads - but four! ****Sigh****
Then the explanation about leakage to heart and L lung were clear, honnest, and straightfirwards.
The risks are low, there is a breathing technic to lessen the risk to the heart, but the leakage will cause scarring to the lung. Still, the (low) risks outweighted the risk f recurrence, unless the 5.6cm pre-cancer cells are zapped bybrads.
I signed the consent form.
I have asked for a definitive transfer to the Royal Free Hospital.
I hope you are all recovering well after the weekend, and yes, I have a champagne long weekend by the sea! It was fanatstic!
Hi all, I am wondering if we should always be given a recommendation to bring a companion to all our appointments. I remember when I got the BC diagnosis I was on my own, also when I once met the oncologist, OH been with me all other times and it is really evident to me it is impossible to digest all given information. Often he have to remind me what was said and discussed in the meetings as I just can't remember. It is all so upsetting. Yesterday I met with the oncologist as she also oversee my radiotherapy treatment , can't complain about continuity of care here, and I had the opportunity to ask her about my chemo and why she choose my particular regime, this she had explained before but that was when I was on my own so couldn't remember and I really wanted to know so got that question mark out of my head.
Huneebee, so hope you feel better today, thinking of you xxx
Retraining for medical staff in communicating upsetting information and how to truly support???
The more I read this thread, the more determined I have become. Hold tight. Sending good vibes. Egret x
Oh Huneebee, I am so sorry. Sending you lots and lots and lots of love.
Just in case.
I have not mentioned before, but I know how to get health records. Each of us can ask for a copy of our health file, this includes everything the hospital has. I know the legislation, but I am like anyone else, caught like a rabbit in the car headlights - I am incapable of fighting at the moment. I am afraid of hostile comments, of getting hurt, of untruthful comments in my file. I know I am not in a position to cope with it. I have used the Acts in a professional capacity. Yet, here I am, paralysed, as you know from my lengthy moans.
So here it is:
Under the Data Protection Act 1998, we have a right to access your own health information. Access must be allowed within 40 days. Guidances say 21 days. The other Act is the Access to Health Records Act 1990. The Trust can charge a fee for photocopying, but you can read the records free of charge. It is not (in my experience) a good idea to read one's own records, but you can sign a letter of authority to a named someone to go through them. Each Trust must have a form, normally you can get it from the hospital PALS. The form is very easy to complete. It is better to have someone not on the hospital payroll to help you. It could be a friend or a relative, or someone working for a charity. Sometimes hospitals have a Citizens Advice desk.
I am giving this information, because if you mention that you want access to your health files, perhaps the doctors would explain with more care. I wonder whether one of the charities, Macmillan, BC care or Maggie's, could be present to support you, when you meet your doctors. It is better to have someone outside your hospital Trust, for independence.
The way the news was given to you was unethical. And yes, there seems to be a legal breach because for each newctreatment, the Health Trust must have your consent and signature. An oral or deemed consent is not sufficient.
If you need more legal stuff, I can try to find out. My heart goes to you. Egret x
Met my breast care nurse today first time I've had an appointment with her as I'm a chemo first girl!
I bawled my eyes out acted like a complete idiot! Once I started I couldn't stop I felt totally out of control. I started when she asked me if I'd thought about what I would look like after surgery and then sobbed with each subsequent question. I'm surprised I wasn't dehydrated by the time I left! Came away with a free bra, a fake boob and was completely exhausted.
not sure where that reaction came from as I'm completely happy with the full mastectomy decision and realise that the node clearance is really necessary, I do wonder if it's because it's the first appointment I've been to on my own so I didn't have to be brave for anyone else?
Hope everyone else is doing okay x
Oh hunnneebee what a shock that must have been for you. Glad the wine and choc are helping x
egret what a nightmare you're having hope it all gets sorted soon x
Egret, I hope you get the transfer sorted, no one deserves to be messed about like you have been.
Huneebee, sorry you have had such a rotten day, glad the alcohol and chocolate helped to calm the nerves, doesn't it always!
Did you sign the concent form for the lung to be radiated? The doctor have an obligation to explain everything before you sign on the dotted line. Demand an explanation tomorrow. Good luck xxx
Everything that could go wrong, has gone wrong at the hospital in Hammersmith.
Aaaaaaahhhhrrrr!!!! I want to cry. I feel sick, I am sick, and I want to throw up.
The hospital in Hammersmith has done it again. I got messed up.
They rang just now, telling me my portacath removal operation under anasthetics will be on 19 August, the same day than my first appointment for rads discussion with the Rpyal Free Hospital!
How can I be expected to have two blood tests in two different hospital between 8:30am and 9:30am? The hospitals are over an hour apart!!! How can I be at the Royal Free Hospital in Camden at 9:45am for blood tests and meet my new treating team at 10:00am to discuss rads; then hurry accross London to have an operation at the hospital in Hammersmith by 13pm? I am pre-diabetic (if not diabetic by now with all this stress). So, rushing to two different hospitals, without draink or food, my blood sugar collapsing, before an operation?
WHY DID THE HOSPITAL IN HAMMERSMITH NOT BOTHER TO COORDINATE PROPERLY MY TRANSFER, and to ensure that I am not asked to be at two different places on the same day?
Surely, they did not count on one Registrar referral letter (14 July) without any follow-up - to ensure a link? Anyone out there caring??? They had 3 weeks!!!
I received my Royal Free hospital appointment only last Saturday, and by Monday I wrote first class to the Registrar at the hospital in Hammersmith to inform. What more could I do? Surely, it is not the role of the patient to ensure continuity?
Sick as a parrot - this did not help - I had to bargain over the phone - bargain!!!? and decide. Why me?
The sense of unreality was as thick as my chemo brain fog. I had to explain: I could not be in two different hospitals, taking a chance (!!!) to be on time for my portacath operation by 1pm, while not knowing how long i would be needed at the Royal Free Hospital!
I had to point out that an operation in the following weeks with no date set, might be a guarantee for another impossible situation. The operation could clash with my rads. When will my rads start? I have not a clue, I have not even sign the consent form! I don't know yet, I am meeting the new team on the 19th only!
I might not be able to cope with an operation under anaesthetic AND rads on the same day, plus zigzgging London for 3-4 hour from hospital to hospital. It did not appeal to me! I could picture my bloody chest put under the rads to be burnt, an offering to the Mayan rain god.
Luckily, the nurse who rang me was nice and willing. The bargaining ended up with me being very upset, reeling, and very ill; and she being very calm
The portacath operation is now re-scheduled for 20 August. Grim, at 8:30am, solid traffic jam! Public transport in full rush hour? God knows how I get back, another £40 cab fare? My hubby and I decided to risk taking our old car and use the £40 towards a meal out.
Feeling better just by sharing my woes.
I will definitively ask for a DEFINITIVE transfer to the Royal Free Hospital.
Thank you for all your encouragement Eira70, and thank you to everyone else for sharing my relief and my joy! I must admit it made me feel soo gooood, although post chemo I am as sick as a parrot (champers for mañana) and I am falling about due to fatigue.
Eira70, steroids can mess the body, it can interfer with blood sugar level, sleep and mood. It is one thing to know, and another to cope with all this **bleep**. I think we are on edge at times, not only us, but members of our family, because it is hard for us and our family, when so many are enjoying holidays, to be stuck at home with us and our chemo and the side-effects.
We need a good break. Getting there. Sending my love, Egret x
Thanks Eira, I'm browsing my wardrobe now, to get some ideas for stuff to buy! Not been shopping since pre chemo so getting a bit giddy! Really pleased for you as well Egret, I know myself how frustrating it is when your hospital isn't communicating the way you want it to and I think you've had more of a problem than I have. It's such a relief when all is resolved. Enjoy your champers! And to everybody - enjoy the rest of the weekend!
Hello! Some happy news to share!
I got my transfer to another hospital for rads. No more long journeys! Only 15-20 minutes away! Hooray!!! Even better news. I got normal communication at last. From my NEW HOSPITAL.
I wrote to the hospital in Hammersmith to ask for news about my transfer for radiotherapy. I got it! I can now put the bad memories of my old hospital behind and drown them in champagne. Easy girl, don't rush to buy that second bottle!
The hospital in Hammersmith reply was amazing: a copy of my Registrar's referral letter to the hospital in Camden. The letter was dated 17 July. Why did I not reveive a copy at the time it was sent to the hospital in Camden? Why leave me in the lurch? Of course no proper reply letter, not even a complementary slip.
To compound the sense of unreality, the Registrar, who had not seen me for 3 months (mid-April to 14 July) told my new Consultant in Camden, that she covered extensively rads. In 30 minutes? To update on 3 months of chemo, to discuss the removal of my portacath, for me to ask questions about the rads, for her to tell me of the timetable and then, the bomshell - my request for a transfer? My hubby, who was present, said she did not answer my questions. I did not sign the consent form for rads. As I said, no explanation, no rads.
Last Tuesday after receiving copy of my transfer' letter, I rang the hospital in Camden. My phone call was returned after 5 minutes!!! I spoke to my new Consultant' secretary. ACCESS!!! She told me to bring the Registrar's letter, she could not find it on computer. No surprise here. I also bought a letter in which I expressed my wish to be introduced to my new treating team and to speak to someone before radiotherapy.
Yesterday -within the same week - I got a letter from my new Consultant Oncologist at my Camden hospital giving me an appointment for 19 August. I am truly delighted.
But for now, time for my six anti-nausea tablets, and a bath too, I stink of chemo. Sending good thoughts, Egret x
Congrats Egret! I got really frustrated with myself for having side effects after the last chemo it was almost like as I'd had the last one I shouldn't of had any lol. Still haven't had my champers as now on bloody antibiotics but wedding anni on the 25th so will wait til then!
Champagne celebration postponned!
My chemo nurse said "wait for 48 hours or it could interfere with your chemo". Sigh. Instead, I got an additional i/v dose of anti-nausea - that will be another 30 minutes (in the business class chair) said my helpful and smiling nurse. At home, I am on anti-nausea and anti-acid tablets with my senna tea (yuk) but no champagne (yet).
We are getting there, ladies, one by one, congratulations! Cheers! Egret x
Thanks Eira, have seen the odd mention on the forums about MUGA scans but not much else. Do you recover quickly afterwards? Or does it knock you out for the rest of the day? Mine's a morning appointment so I was hoping for a bit of light retail therapy in the shopping mall near the hospital later! I'm still waiting for my first Herceptin appointment and my first radiotherapy appointment as well.