27th June - feel yuck

Just to let you know, I got the picc line fitted (no trouble) , had the chemo, was accompanied by Trish and later by Rebecca. I began to feel rubbish straight away, and have spent a very miserable weekend at home, moaning, feeling sick, sleeping, aching, throwing up and losing the plot. Just so you don't think this is a doddle! Aaaagh, poor me! I'm glad I can read back over the blogs and hang onto the certainty that this will lift eventually.

24th June - 4th chemo tomorrow!

(Having just read this through it does sound a bit moany, so here are some cheerful pictures to show it's not all bad..... William sharing his hair with me, a seriously delicious brunch courtesy of Bill, building with boughs and branches in the woods with John and Ben, a trip to London)





I have had a long three weeks. There was the beginning, with the Monday Look Good Feel Better appointment - which was cheering, but overall, it took about 10 days for the chemo's side effects to wear off. I got quite fed up of feeling miserable, tired, confused and achey. So it's taking longer with each subsequent treatment to recover. I have learned just to lie low, and let things go that I can't manage. It's difficult when I am in that 'zone' to keep perspective.. to remember that it's not so hard to catch up on all the things I'd like to be doing/ need doing once I feel better. I mostly get over-anxious about our whole lives/household all going to the dogs just because I'm not barking instructions and being my usual tyrant self!
This last week and a half I have been feeling fine on the whole and have done many things -dressmaking - Ann's prom dress, John's football tournament, driving to Wellingborough to fetch eBay purchase - totally lovely G-plan retro coffee table as old as me!
I am generally easily tired out, but that didn't stop us having a great time when my cousin Klaus visited for 3 days. We did the London tourist thing, and partied each night with a succession of relatives. It was lovely to see Aziz on Tuesday. She came to visit with her nearly one year old son.

My right arm is still sore with the cording and is tight every morning and needs stretching out. My left arm is even worse than it was with soreness and inflamed veins from the chemo drugs. I bumped into a chemo nurse I know in Asda, and she suggested I got a picc line put in ( a plumbed-in tap on the upper arm which has an in-vein tube deep inside me to deliver drugs to sturdier vessels). So I went to the hospital to enquire about having one fitted before tomorrow's chemotherapy. Unfortunately, the nurse who does that thing wouldn't/couldn't get around to seeing me even briefly just to discuss the possibility, despite the receptionist repeatedly saying she would, and so I sat there for 2 hours and eventually went home after asking the receptionist to ask that nurse to phone me. I was very upset and tearful about that. Overreacting is what I'm good at these days!
Eventually I found an answerphone message from the hospital. They'll fit me a line at 10 on Friday morning, before my treatment.
I saw the lymphoedema physiotherapist on Tuesday - she taped me up again, and showed me how to do it myself, and where to get more tape from. We have agreed that the sleeves are useful when i'm doing very active work, but they do cause a bit of hand-swelling so I'm not keen to use them. Gentle stroking and massage has helped and so has the tape on my chest. So I'll persevere on my own, and have a follow up consultation in December, unless my needs change before then. I am continuing with twice weekly axillary cording physiotherapy in Wokingham.
Today I finally got my 'proper' prosthesis from the agent for these things at the hospital prosthesis clinic. She assured me I can change it any time in the next 2 years if I change weight significantly, or if I puncture it and all the goo leaks out! It is actually quite good and reassuring to have a weighty thing in my bra again. It's a good match and I feel more symmetrical, also, it doesn't try to ride up and peep out of the top of my clothes like the lightweight softie.

I also went for an appointment with the Occupational Health agency my employer uses. This was to discuss my return to work and to begin to plan a 'phased return', meaning I can start back with reduced hours and workload for a couple of months. It's the best way to give my employer and myself some idea of what will be achievable and when. Nothing is decided yet, but I am in the system and my circumstances will be reviewed again in late July. After chemotherapy there will be radiotherapy and I am given to understand that there is a waiting list of about 8 to 10 weeks for this, but it might be feasible to return to work between chemo and radiotherapy.

June 7th - Look Good Feel Better

A charity gathers top name cosmetics and skincare products from companies that want to get involved in women's cancer support. They have trained beauty therapists who volunteer once a month, put on small group workshops where women with cancer can go, get a fabulous bag of freebies and be tutored in their use. This was a real tonic to me on Monday afternoon when I was fed up of feeling awful.
Check out http://www.lookgoodfeelbetter.co.uk/site/index.cfm

5th June - 3rd chemo

I had a whole week of feeling rough after my second chemo. I just did very little and tried to manage the gut-ache as best I could - playing off the bisocodyl (laxative) against the ondansetron (anti-emetic). I began to feel much better on the 7th day and got better and better from then on. We had a great weekend at the boat, a busy week, met up with Quita, our children had end of year and GCSE exams, then a good half term - took children to London, went on shopping sprees, and tidied and cleaned in readiness for this down-time I am now experiencing after my 3rd chemo, yesterday.
I went along to the clinic yesterday armed with lots of little hats (now 2 designs) and scarves and lots of my new friends were delighted to have them from me.
I had been to the local surgery on Thursday to have a blood test. This is normal routine, so they can do a WBC (whole blood count) and determine if I am well enough to have my next chemo dose. On seeing the oncologist, 45 mins late, I was told my white blood count had been terribly low and it was a borderline decision as to whether they would go ahead. I explained how well I felt to my oncologist and he agreed to let me have today's dose, but to have another blood test at the outset, and if that showed that I hadn't picked up from yesterday I would be called in next week for some bone marrow injections.
It was really good to talk 'shop' with fellow patients.. I got a bit of hand sewing done too, while waiting over 2 hours for my meds to be mixed. Rebecca came along just as before, 2 mins before we went in for treatment.
It's odd having the drugs pumped in, especially having felt so perky and good for 2 weeks. It was as if illness was gradually descending over the two hours and I became more vague, tired and distant as time went on. Rebecca took me home via Asda, sticky buns, cup of tea, bed.
And here I still am. Say hi to Fatso, who made his Facebook debut last night..

"Say hi to Fatso, constant and faithful bed partner since 1969, and to Keith, Fatso's best mate since 2005. Loyalty is often underrated. Well done Fatso, for sticking by me through thick and thin... :)"



Over a week ago I went back for a 2nd appointment with the lymphoedema physiotherapist at Duchess of Kent House. She reviewed my use of the arm sleeve to control arm swelling, and since I had given up using it because my hand fattened, we are now trying another type. It may be that I have also to try wearing a compression glove. Hooray. Also, I was questioning the raised bumpiness of my exbreast area.. this wasn't all seroma, though some of it still is, and it isn't the raised scarring that you get along stitching lines after having been sewn up.. which gradually fades and flattens over several months. It turns out that as well as a propensity for lymphoedema in the arm, I also have some on my chest and underarm. My physio taped me up with some special tape which encourages the under-the-skin lymph vessels to allow fluid to take new drain-paths to alternative lymph node sites. The photo shows someone's back - mine is all over my front.
In addition to this physio I am still seeing my Wokingham based physio for the axillary web syndrome (cording), which as become worse and restricts my movement. I am now seeing her twice a week for specialist massage.
My 'good' arm is also achy.. perhaps coming out in sympathy.. either that or it has sore veins from the chemo drugs which are pumped in there first of all.
I got my wig two weeks ago. It's ok, not fab.. but your standards go down when you're bald already! It doesn't scream Rug! at first glance.. at least not to strangers. I like my caps and scarves because they're more comfy and they're not pretending to be something they're not.. but there will be occasions when the wig is more appropriate - when I need to melt into the background, not be noticed, let someone else have the limelight...

I've not written much about the emotional journey, because this, for me, has mostly been about how relationships with my nearest and dearest have been changing and morphing as our expectations of what we offer and receive from each other during my treatment alters with my fluctuating ability to fend for myself and to care for them. Quita remarked that she'd not read anything much of my husband in my blog and it was almost as if he took no part in my story. She suggested it'd be good to have the human side, the family dynamic story, here in my blog to record the truth about coping as a family. It's enough for a book in itself. I think I'll record all that elsewhere, because these other people have some right not to have my impressions of them published in a public blog. Suffice to say, things are often not at all easy for any of us.