Starting Chemo in December.2012

Going through breast cancer treatment Chemotherapy monthly threads
921

Mandy - results take about 8 weeks from receiving blood sample and my appointment took about 6 weeks for being referred so they don’t rush although might be different a Leeds mine is Addenbrokes .

Not going to celebrate too much yet but just had onc appointment before Tax number 3 and she couldn’t feel what was my 5cm tumour. Ultra sound next week so will know for sure then. thinking the dreaded tax may be worth it after all.

Hope everybody is doing ok this week and we are getting through this rubbish that has put our lives on hold

Love to all

Wendy

922

Thanks Wendy. And that’s fab about your tumour. How has tax been then. I’ve only just had my first one yesterday?

923

Maire, Jayne - I just can’t believe how stupid I was, assuming the stomach toxicity was just a side effect of the chemo that you couldn’t do anything about. I knew there were things for ‘indigestion’ but this has been so bad it never occurred to me that it could come under the same umbrella. So when people talked about Omeprazole, I didn’t think it applied to me.

I am just so dim sometimes.

I don’t think I can even blame Chemo Brian for this one…

Border Collies - thank you - I promise to be more sensible next time. If there is a next time, which hopefully there won’t be, because I am now planning t oconstruct an Isolation Igloo out of bubble wrap and live in it as a hermit until chemo has finished, thus avoiding any more infections.

I have a question for all of you - Maire mentioned that she, too, does not have a Key Worker to call if there are problems relating to, and just has to call the Chemo Ward, where. like at my hospital, they are generally too busy to answer the phone.
What happened at my hospital is that I had a wonderful Breast Care Nurse through diagnosis, surgery, and after, but as soon as I started chemo I stopped calling her, as there is a message on the Breast Care Nurses’ answerphone, which says that for any chemo-related issues you must call the Chemo Day Ward. That hasn’t worked very well for me, as has been documented on my blog.

My question is this: is it the same everywhere, that you ‘lose’ your Breast Care Nurse when you start chemo, and are just told to ring the Chemo Day ward with any problems?

Or do people in some hospitals have a Chemo Key Worker they can contact? It also wasn’t clear to me when I was talking to the Acute Oncology Nurse the other day whether it was just Breast Cancer patieents who have this problem, or chemo patients in general.

I’ve actually received an email from the Head of Cancer Nursing at the Imperial Health Care Trust (which Charing Cross is part of) asking to meet me to discuss all this - purely by chance, she had been reading my blog anyway, even before the Oncology Nurse suggested I tell her about these problems. She said that my difficulties in getting help for problems from chemo is exactly the experience they didn’t want people to have… I can’t help feeling that if I’d had someone to call it would have made all the difference in the world all 3 times.

In other news, my cold has fast-forwarded to bronchitis ( I have very weak lungs) and I spent all last night coughing. I’m coughing so much it’s hard even to talk.

But hey, I’m not neutropenic.

924

Mandy tax has been good to me and so far have had no major issues. With chemo 1 had heartburn which I now have omeprazol for and really does work also had constipation then diarrhoea but was ready for that on chemo 2. Both times day 4 & 5 have been rubbish and I have needed a sofa day but all in all Imam truly lucky when I hear some the horror stories on here. Aches bones can be a bit troublesome but ibuprofen sort that.

Hope tax suits you too. How many have you got to have ?

Wendy

925

2 more to go. I’ll be done by Easter. Had 3 fec and 3 t. After mx. No plans for rt and as tn no hormones. So recon and see what the gene testing comes up with. X

926

Mandy - no tamoxifen for me - it was a leaflet about ovarian cancer, but I think my bloaty disturbed stomach is actually indegestion, so with Cybele’s news I started the Omeprazole again - still had it from FEC-T but thought I didn’t need it. So many bloody pills. It did take quite a while from referral to seeing genetics, but I beliive there is a “fast track” route for those who have surgery planned already and need decisions - ask for it, if you don’t ask you don’t get. You don’t always get when you do ask of course…

Wendy - great news about shrinking.

Cybele - My chemo unit have an answer phone, they have been criticised for this in the past but they still have it. You don’t get a call back for a couple of hours usually. My BCN also has an answer phone and they don’t call back all day. That’s why they want you to call the chemo unit. I miss the days before the NHS sacked all the “backroom staff” and these people had admin support. The worst thing about the BCN is that they seem to be only funded for primary cancer and disappear without trace when you don’t get better after one initial round of primary treatment. This is a common complaint from the secondaries ladies. It most definitly does not get easier the second time. I have to ring a different hosp altogether out of hours because I don’t live in London or a major city. There’s so much rubbish out there it’s hard to know what to complain about first. I have mostly given up.

927

‘Coughing in the arms of Chemo Brian’:

today’s post on chemonights.blogspot.co.uk/

928

Cybele - here’s how it is for me. And this is private. Once diagnosed the breast nurse gave me a business card and told me to go home and have a glass of wine. Ummmmm, I lost the card as head was spinning. She called me a week later to tell me the tissue biopsy wasn’t back and that I would have to see consultant the following week. I saw consultant and mx was booked for the following week with SNB and LNB. I didnt see her during the surgery which I felt was poor given it’s such a small hospital and the ward is metres from their rooms. Anyway the chemo nurses are lovely and I am told that once the chemo finishes I am put under the care of my surgeon. The bc nurse has not really shown a lot of compassion and I hv been disappointed. On the other hand the chemo nurses are lovely and I can call them up to 10pm at night 7 days a week. After that if I have a temperature or are unwell I have to call the ward. That’s unless I have heart pain or breathing difficulties and it’s then a 999.
I feel that the times when I really needed support it wasn’t there. But I just don’t think the resource is there. And it’s probably why my surgeon referred me to the nhs therapist as I just use to get frustrated and cry in her office. This has been a godsend and they have also given me reflexology and Indian head massage. I’ve also been to the drop in centre where there is always someone understanding to talk to.
Xxx

929

Cybele - This is my experience and like Mandy P. I too am private attending a small private BMI hospital in the country. I was diagnosed by the NHS. This was because I have a history of breast cysts and BUPA wouldn’t cover me for those unless one at some stage turned out to be cancer. At the NHS I had a surgeon that sounds just like your Mr. G Cybele. John and I went for biopsy results and it went something like this … “I’ve got your results - you’ve got cancer. You need three things, i.e. sn biopsy, lumpectomy and rads …NEXT!”!! There were no breast care nurses there to assist and as you can imagine we were both in total shock.
Went home, googled the breast oncology surgeons at Chelsfield Hospital which is only a mile from where I live. Rang up and got a 7.30 pm appointment with a Miss Karina Cox who examined me, explained everything to me and actually treated me like a human being and was so kind. Next day had scans and 3 days later was operated on. It turned out that I also needed chemo. The breast nurses at this hospital were marvellous. I had three I could go to and the breast nurse who actually attended me whilst I was in hospital still rings me each week to see howe I am.
My chemo is done in this hospital and there are two chemo nurses who each have a mobile phone which never leaves their pockets. I can ring until 10.00 pm 7 days a week and they will help and give advice. They are in touch with my oncologist so if I ring with a problem they speak to the onc. and then get a prescription made up for me to collect. I see the same nurses each visit and I too have had reflexology but unfortunately had to decline the Indian Head Massage due to the bulk of the cold cap!
I see my oncologist, a Miss Anna Rigg, every Friday before I have the next FEC on the Tuesday. She goes through all my side effects and writes up new medication for the next treatment and makes any medication adjustments. Then she just sits and talks to me about how I am in general. The funny thing is that I am a dog trainer and dog owner and train for competitive obedience. Both my surgeon and Onc are not only best friends and share the same secregtary but are also mad about dogs and both own dogs that they can’t do anything with so each time I see them they not only ask about my own dogs but I get a list of questions as to how they can change their own dogs’ behaviour for the better.
I have to say that I have never during all this felt on my own. The breast nurse still rings me as does my surgeon periodically. The chemo nurse are always available by mobile phone where ever they are and my onc sees me for an hour every 3 weeks to sort out any problems.
I have already had an interview with the Rads Man, Russell Burcombe who is also a friend of surgeon and onc and yesterday I received my list of rads appointments which start on 3rd April. Measuring up on 20th March which is a bit worrying because I don’t have my last FEC until 12th March so I hope I’ll be feeling ok.
Hope the cough soon subsides Cybele and that you’re back on top form asap.

930

Cybele - hope the coughing is improving. I too have weak lungs and asthma and it has been a fear that I would get a chest infection of some sort during the chemo. God knows what would happen now they have irradiated my lung. All they will say is that it may have been “weakened”. Thats all right then… Very impressive to add a single handed attempt to improve BC support services whilst having chemo, a chest infection and writing the blog, just don’t forget to rest up and GET BETTER. xxx

931

Hi All.

Cybele, I hope you’re feeling a bit less rubbish. My contact person throughout my treatment is my BCN whatever stage I’m at. I have a particular nurse, but if she’s not available and it’s an emergency there’s a mobile number which I can call at any time. I’ve only phoned once and someone was there so’s it’s not been an issue for me so far, but I understand that if my BCN can’t help me then she will point me in the right direction for someone who can.

Mandy, how long will you have to wait for the recon?

My doctor who urged me not to return to work suggested I took up a hobby because I’ve been so bored (there’s only so much Jeremy Kyle a person can take). I decided to look into my family tree which is something I’ve been meaning to do for years as my Mums Mum has always been a mystery as she lost touch with her daugters (she and my Grandad were divorced when my Mum was about 5). My Mum had BC at 61 and her Sister, my Aunt had a cancerous lump removed when she was in her 30s, although my Aunt isn’t the kind of person who will go into any detail. Well through my new hobby I’ve found that my Grandmother died of BC at 44 years and my Great Grandmother died at 26 years. I’m waiting for a copy of her death certificate to see what she died of. How many people do you have to have had in your family with BC to get tested for BRACA?

932

‘Two peas in a pod’:

today’s post on chemonights.blogspot.co.uk/

933

Hamley

http://www.icr.ac.uk/research/team\_leaders/Rahman\_Nazneen/Rahman\_Nazneen\_Protocols/Protocols/22778.pdf

This is the protocol. I believe you have hit the mark with 2 first line relatives having BC. B*gger. Ask for test, but you my want to delay the result till the end of chemo. One thing at a time is my motto. Next time you get bored, learn to quilt or play the harp, xxx

934

Hi Hamley.
My surgeon said that I can have mr recon 6 - 8 weeks after chemo finishes and tbh I’d like to do it asap. She’s also going to reduce and lift the remaining boob (assuming I dont have the gene which s another story.)

I thought that I would learn piano whilst doing chemo and being off work. Hard to get motivated sometimes! and I’m sadly enjoying housewives of Beverley hills on an afternoon! :slight_smile:

I’m stuck in bed today for the first time. I feel like I’ve hit a bus. Literally. Hopefully won’t last too long. I don’t feel sick or anything. Just wasted.

Love to all x

935

It makes me laugh, the things we thought we could do whilst “bored” on chemo. I feel like something has crawled into my stomach and died. There’s a pic somewhere on line of a python in the everglades that ate an alligator and then exploded as it rotted. If I had the energy I would find it. I think that may be going on inside me, except I only ate some toast and a poached egg. Yuech. Thank Gawd for the rugby.

936

Hi tit sisters!
Hope youre feeling better Cybele.
I’m doing a further degree (nuts I know! ) and all I want is for this wretched chemo brain to go away so that I can make some coherent connections. 'When I’ve just been poisoned I can’t cope with much more than “ok magazine” but I actually wrote the beginning of a essay this afternoon! I shall leave it for a couple of days because the first time I attempted my husbands VAT return I had to re do it completely!!
Cybele - this is what happens in Bham. I don’t have a red chemotherapy book. Is there any chance that if I phone Charing Cross they will send/email me one do you think? I was allocated a bcn but when I agreed to do the avastin trial my bcn is now my reseach nurse. I have phoned her a couple of times - and to be fair someone from her office has always returned my calls - eventually.
I have had occasion to phone the chemo ward and they got back the next day! So if I need help again I will phone until I speak to someone. I also have an emergency number but when I phoned that there was no reply and no one got back to me. (To be fair the hospital was very concerned at this news and launced an enquiry) . If that happens again I will phone the main hospital switchboard. So no I dont have a single point of contact and my reseach nurse is not as knowlegable as my previous bcn. My tit sis guru is the PE teacher from school who had breast cancer in March and actually went back to work last week.I am blessed that I can phone/text her at any time with random questions. And I’ve also learnt lots from this forum! The Corsodyl tip from Cress has helped definitely helped with moth mouth.
QD x

937

Hi All,

Cress, thanks for the info. I’m going to give the ancestry thing a break and have decided to restart learning Spanish which is something I started a couple of years ago and had to give up through lack of time to do it. I’ve left a message for my BCN to call me back about being tested, but like you say, I think I’ll let that keep until after chemo. I think it has implications for the mx I’m going to have afterwards though.

Mandy, sorry to hear your having a bad day, hopefully you’ll feel better tomorrow. Learning piano sounds like hard work, I think I’d Stick to the Housewives of Beverley Hills, are those women for real???!!

QD, what’s your degree in? I’ve mucked up my husbands VAT return too. I’ve told him if he wants it right to do it himself. That went down like a turd in a water strike!

938

Hi all
Hamley - thanks for your comments following my posting -I totally agree. Maire I will definitely borrow the flame thrower next time!
Mandy - sorry to hear you’re feeling rough today hope you soon feel brighter.
Cybele - glad the hospital didn’t keep you in - but sorry you’re still suffering. It’s horrible when you start coughing and can’t stop. I do hope you’ll feel better soon. tAlso hanks for letting us know why it’s so important to get soon to as soon as possible to stop more awful things happening. Like QD I would like your red book - we don’t have them in Dudley either- maybe it’s a West Mids thing! when I was diagnosed I was allocated a BCN but because I’m having chemo before surgery I’ve only seen her once & had a few phone calls with her at the beginning sorting out appointments. Since I started chemo contact is with the chemo unit & I must admit they have been good. I have 2 phone numbers one of which is the emergency number & I’ve always spoken to someone helpful & reassuring when I’ve phoned. They also phone back the next day to make sure I’m OK.
Had my first TAX last Friday and was dreading it but so far I’ve been OK - but that maybe due to the high dose of steroids! I am on a real high - but trouble with that is the lack of sleep! Got to make the best of it whilst feeling OK though!

939

‘Sanctuary’:

today’s post on chemonights.blogspot.co.uk/

940

Good morning all
Hope you all had a good weekend, i have my mother in law with me for two weeks came down from Durham to look after me, i have my 3rd chemo tomorrow, so for the next two weeks she will have her work cut out for her, Bless her.
Not looking forward to it as this seems to be the only day out of 20 days i have felt like myself but at least i can say i will be half way through.
good luck to all who is haveing treatment this week take care one and all.

lolly
x