28th April - effects of chemo

Today's post is really just a boring list of ailments recorded for completeness' sake.
Since Friday's chemo I have been feeling a variety of side effects. On Saturday I didn't get dressed, and felt low and thick headed all day (a bit like a bad hangover). I had a sore stomach and was dozey but couldn't sleep. I woke up on Sunday much more chirpy and went to church, but by the afternoon I was ready for my PJs again. I was tired and miserable and unable to sleep. On Monday I got up and went to the seroma clinic - by now I was desperate for draining as I had missed the Friday opportunity because of the chemo. It was nice to see the other girls there, all struggling on week by week, like me. After that I came home and spent the rest of the day on the sofa, worn out.
On Tuesday I had planned to get into London to meet Quita. My lovely next door neighbour drove me to the station. I had a really good day out and came home with Bill at about 8pm. I was tired at the end of the day but I did think maybe I had come out of the other side of the adverse effects period and was now going to be feeling fine till next chemo on May 14th.
I think I overdid it, because I didn't feel well in the night, slept poorly, and woke up with a sore throat, sore mouth, a painful cough, runny nose and very sensitive skin. I have always enjoyed a hot cup of tea, but today hot tea was too hot. I dragged myself to my physio session at 8.30 this morning. I have been doing my arm exercises, but my arm and chest have been more painful and tight - less mobile than before. There's this horrid backed-up feeling in my stomach and throat. I keep thinking it'll settle if I eat something, and while I'm eating, it's a relief. But then afterwards I just feel even more stuffed up and uncomfortable. I tried the anti-sickness tablets but I don't think they made much difference. I definitely need to take some laxatives too. Joy!
I pottered about a bit at school today, which was a nice distraction from my navel gazing. It was good to see my friendly colleagues. I do find it difficult to concentrate and can't follow if too many folk are speaking at once. I am not very alert.

April 23rd 1st Chemo

I had my first dose of chemotherapy today.

I had been warned to bring a book as there is a lot of waiting around to be done. My appointment time was 9.15. I was seen by my oncologist at 10.20; a brief chat.. everything all right? any questions? no - good, sign the consent form, and take your notes upstairs to the ward for the treatment.

Upstairs, the receptionist explained that it does take a very long time, and there would now be a long wait before I go in. This is because now that the oncologist had deemed me fit enough today to have treatment, they would now order up my drugs cocktail from the hospital pharmacy dept, where they are specially made to order, fresh for each recipient. Apparently the drugs can be so expensive, and are so toxic and risky to store, once concocted, that they cannot afford to waste them if patients don't turn up, or aren't well enough to be given them. There were some other lovely patients with whom I whiled away the time. Rebecca came to keep me company just as it was time to get my treatment.

We went in to the ward at about 12.20, and I was given 2 anti-emetics, Dexamethasone 8mg and Kytril 2mg, and my FEC dose; Fluorouracil (5FU) 1200mg, Epirubicin 150mg and Cyclophosphamide 1200mg. These were pumped in by a machine that squeezed each syringe-full of drugs slowly into my cannula. It took about 2 hours in all to have these drugs administered.

The ward had originally been built in 1911 as the children's ward, and on the walls are green tiles, and beautiful tile depictions of fairy tales and nursery rhymes. It is a pity they cannot be removed and relocated so more people could enjoy them.

I have been given 2 different types of anti-emetic tablets to take at home over the next couple of days, and a chemotherapy record booklet. In all, it has not been an unpleasant day, the people are all friendly, and on the basis of that alone, I think I'll go back for more!! yeah, like you had a choice..

At home now 2 hours later, I am beginning to feel a bit drowsy and ever so slightly sick.

April 20th hair advisory service

My first chemotherapy dose has been confirmed as Friday 23rd April. I have weekly physiotherapy for the axillary cording starting again tomorrow, and an appointment with the lymphoedema physiotherapist on May 7th.
I chose 3 wigs - on a sale or return basis, and when the order arrives I shall try them all and choose one. The hair advisory heath care assistant had lots of handy tips - such as taking the rug to a good hairdresser to adjust the style, and thin it a bit, to suit me better. There will also be a cosmetic class I can sign up for - Look Good, Feel Better.. or somesuch. I think it's a cosmetic industry sponsored thing - flogging eyebrow pencils to chemo patients! Anyway, why not - any tips on how to feel beautiful gratefully received at present. http://www.lookgoodfeelbetter.co.uk/site/index.cfm
The crowd in the seroma clinic is getting more and more friendly. On Monday we were swapping our war stories and getting advice from the newly bald lady with the headscarf. In the land of the blind, the one eyed man is king.
It may be that I don't feel rough at all after my first dose of chemotherapy, but worse after the 2nd or 3rd. But this lady felt ill for 4 days after her first dose. Hair falls out after week 3, in general. They give anti-sickness drugs apparently too. We shall see.
Silver Lining - If you puke a lot you'll lose a few pounds!
Dark Cloud - Yeah, but the anti sickness drugs actually work, and they're a kind of steroid. Uh oh - very bald AND very fat!
William felt he wasn't getting enough of a mention in my blog - so this next bit's for you, son -
Peering out of the gap of my bedroom door this morning I had the rare delight of seeing my son streaking across the landing to repossess forcefully a stolen bath towel from his younger brother, who had selfishly taken two towels away with him after his shower. Only got a rear view, but it was cute and made me smile anyway!

April 12th Easter holidays

The Easter holidays are upon us. We have enjoyed decorating children's bedrooms, and going to Thorpe Park. I have been very pleased with my new overlocker, and have made a dress for Ann, and some prototype 'turbans' in readiness for my hairlessness!
I have been given an appointment with the 'hair adviser' on Wednesday. I advise you to have hair.. hmm..
I had a big success in town on Friday. I went to John Lewis and got fitted for a mastectomy bra - one that has a pocket to hold the prosthesis securely in. The lady fitter was SO brilliant, so kind and sensitive and experienced in helping people like me. I was really rather nervous - and felt quite vulnerable and without many options or choices. She explained I can adapt most ordinary bras and sew in a pocket in future, and she assured me that when I get my proper prosthesis it will be a great deal better and more realistic than the soft post-surgery thing I'm coping with now. I bought a purpose-made mastectomy bra anyway, as it secures my softie, and doesn't let it drift about. I actually felt confident and symmetrical in my new bra, and so I wore it straight away, and felt a lot happier, all day.
Still going on Mondays and Fridays to drain off the seroma. The breast care nurse thought perhaps I have another 3 weeks of this palaver to endure before things settle down, and I can be fitted with a pukka prosthesis. I keep bumping into the same ladies at the clinic each Monday and Friday, and we are beginning to compare notes about how we are feeling and healing. I am quite grateful for this contact with people who are going through the same things that I am, at the same time as I am.
When I was first diagnosed I had several offers, via my friends, to speak with other friends of theirs, who had survived breast cancer, and who would therefore be able to reassure/help/befriend me in my time of need. And I didn't feel like I wanted their wisdom and advice. As time goes on, I am slightly more open to getting to know these people, but nothing beats the camaraderie of the women who are going through what I'm going through right now, with me.
My right arm is still very sore, and it gets quite tight and slightly swollen. I try to keep it moving and to massage it. I am developing the nasty axillary cording again in my armpit and all along my arm to the wrist. The breast care nurse has referred me to the lymphoedema physiotherapist and I have contacted my physiotherapist so we can resume treatment for the cording.
I am thankful to my fairy godmother for sending me an article about a website full of patients' experiences of illnesses and treatments. Look up your illness! http://www.healthtalkonline.org/
Breast cancer is a common thing, mastectomy is a common surgery. and I am healing appropriately, so I feel I ought to be coping better than I actually am. Everyone is being lovely to me, but they have to put up with my sudden tearfulness over tiny things, and my insecurity about my appearance. The breast care nurse said we have a mental map of our body and when we change appearance slowly we gradually adapt to accept ourselves, but when it's a sudden change, it does take time to get used to the way things are. It has now been over three weeks since I lost my breast. I am still not used to it.