December 8th - Last Post!

Yesterday I went for the routine follow up appointment which takes place typically a month after radiotherapy is finished. This is to check on progress and healing from radiotherapy and to outline the post cancer care.
I was seen by an unfamiliar doctor who explained that these follow up appointments are not usually with one's oncologist, but more often with someone else. So this is an indication already of the weaning off process, the distancing of patient and specialist, I guess.
There was nothing major to report. My skin feels an expected tightness and there are some recovering nerve sensation shooting pains that are typical at this stage after a mastectomy, as nerves begin to reconnect.
He explained that their policy is to mammogram the remaining breast every two years. But a next check up or follow up will take place in June 2011, just to see that everything is healing appropriately.
At my last appointment a month ago I was very distressed at my end-of-treatment feelings of not being back to normal, not whole again. The oncologist referred me on to the clinical psychologist/psychotherapist, and at last I have received a letter assuring me I'm on the waiting list - which currently stands at 24 weeks! Good job I'm not suicidal, eh?
I needed to take 4 weeks off work after half term, to recover from the soreness and tiredness and to adjust to life after cancer. I did lose a lot of confidence and self esteem as I have struggled with losing my breast. I think perhaps that the physical damage radiotherapy does serves to draw my attention to my deficient chest every minute of every day, every time I move my arm or reach or stretch. Whereas, before radiotherapy, that area was shocking to look at, but once I was dressed each day, I had no feelings there, so I was able to forget about it much more of the time.
I am so grateful to my dear friends, especially Barbara, who could see how low I was and who insisted I seek help from my GP for anxiety and depression... and so now I am able to return to work and move forward, bit by bit.
I did work mornings only from start of term in September, for 6 weeks. It was then half term, and then I took 4 more weeks to recover. Now I am back at work in the mornings, with a view to resuming full time duties from January.
That will then be a whole year, from first noting a dimple, to returning to full time work after cancer.
It has been quite a journey and there are many more stories in my life this year that I've not shared on this blog. But I think I'll finish now, and wrap up the story here.
Next year there will be the whole new adventure of reconstruction surgery, I will see the plastic surgeon in April... but it's most likely not to go ahead until next autumn.
For now I'm going to thank God for his huge grace to me, holding me through the hardest parts and surrounding me with love and support from all sorts of people. I'm going to continue doing what I do, with everything and everyone who loves me, in my family, my church and beyond. I'm going to sew hats for those who want them, and I'm going to teach primary school!

3rd November. Last Radiotherapy

I went miserably and alone to my last radiotherapy session today. I was not feeling very brave or communicative. The radiographer asked if I was doing anything nice to celebrate my last treatment. No. In retrospect I should perhaps have planned a treat for myself.
The oncologist checked my chest, advised me to continue to use the aqueous cream, advised that the skin soreness might yet reach its peak in a week or so, and suggested it is usual practice to have a check up in a month's time and then another one a year after original diagnosis, and them it's just annual mammograms on my remaining breast thereafter.
He could see I was distressed and invited me to tell him what was wrong. So I did. Now he's referred me to the clinical psychologist! Well, what else could he do? I'd have done the same in his shoes!
Silver lining: I had planned to meet up with Martha just to swap notes about our forthcoming Alpha Away Day arrangements after my hospital appointments. This turned into a lovely lunch out together in town, sharing stories of life's battles and God's blessings! He often does that- puts the right people in my life just when needed, to help me and let me know He's here, in it all, with me.

2nd November coming to the end of treatment

I am not feeling as happy as others would have me feel, reaching the end of treatment in two days' time.
I fully expect the oncologist to say to me, when we have that meeting on Wednesday morning, "Well, that's it now. Well done. We've dealt with your cancer using everything known to modern medicine. It's gone. So you can get back to normal. Just take the Tamoxifen daily for 5 years. And - that's it. We're done here. You can go on your merry way. Come back next year if you decide you really want reconstructive surgery. Apart from that - bye! .. Next!"
I found an article by Paul Harvey, a consultant clinical psychologist, quite helpful. It explains to me why I'm not feeling so great.
http://www.cancercounselling.org.uk/northsouth/extra4.nsf/WebResClient/1761049276601BD68025735B00604834/$FILE/article3.pdf?openElement
Apparently it's quite normal to feel miserable and insecure. Great. Having just about finished with the medics, I'm lined up nicely for needing the shrinks!

21st October Radiotherapy

I'm less nervous about it now. You get used to it. The people don't mean to be distant. I'm beginning to make friends!! This is me posing with Joshua - a 3rd yr trainee radiographer (about 14! - aaah bless...), on the treatment couch thing with the machinery being positioned above me. Obviously I've kept my gown on for the photo so as not to offend your sensibilities!

Some days, like today, everything was on time and I was in and out of the Cancer Centre in 25 minutes. Other days, it can be an hour or so, depending on whether they have technical hitches or patient problems.

I'm getting more and more tired each day and am glad that half term is next week.

I'll have to miss tonight's Alpha discussion group as I'm needed at home this evening. Pray they'll manage to enjoy themselves without me! Tonight's theme for discussion is "Why and How Do I Pray?" I found this link.. if you're curious..

http://www.oasisedinburgh.com/alpha/pdfs/BAt5.pdf

15th October Radiotherapy

A long time since I last wrote.
Going back to work has been hard work. I wanted to start the new academic year off, to be there to settle the new class in, to set things up how I would want them, rather than stay off work till all the treatments were done, and come back to take over 'someone else's' class.
As it has turned out, working mornings only is about as much as I can manage. I get very tired, and I'm not as clever and quick as I like to think I used to be. People at work have been very kind and it's working out all right at the moment. People at home see me go to work every day and assume I'm back to normal, and cut me no slack. I am having difficulty giving up my 'patient status'; I still want to deserve pampering and be offered help. Don't know if I really need it, it's just post chemo fatigue, nothing a good bit of stiff upper lip won't cure, eh!
Radiotherapy might make me even more tired and sore too, so I might need some time off work to recover from that as the weeks wear on.
The radiotherapy people needed chasing at the end of September and eventually I was given a planning session on 4th October and 15 days of sessions has started yesterday, 14th October.
I don't like the treatment so far. It is very perfunctory and mechanical, cold, clinical, impersonal, undignified and indelicate. I feel exposed and vulnerable lying arms above my head, naked to the waist, absolutely still, while technicians talk to each other in code, swapping numbers and bits of words, prod me bodily into a 'perfect pose' and then leave the room to zap me by remote control, return, reposition things, leave and zap me again. They tattoed permanent guide marks on me last week and daily they over-write these with marker pen, to make big enough marks to line up their machinery. I'm closing my eyes now, and pretending it's not happening to me. ("On a beach in Greece, on a beach in Greece" etc etc)
My breast care nurse, who hasn't been in touch with me to find out how I am since seroma clinic days, is leaving her post next week to work full time as a breast care nurse in the private sector. I requested a meeting with her to look through her file of photos and have a discussion about reconstructive surgery before she is gone for good. We met on Wednesday... I know I can't get started on reconstruction till at least 6 months after radiotherapy but I don't want to wait any longer than necessary, so I'm planning ahead.
It looks like the whole reconstruction plastic surgery will be a major major undertaking in itself. I will need 3 months off work minimum. I shan't be able to drive for 6 weeks after surgery. And there'll be quite a few more surgeries with recovery time in between before the whole thing is done.
The photos I saw were all taken quite soon after plastic surgery. It looks horrendous. I would have liked to have seen some of women 6 or 12 months afterwards - will scars actually fade? how long does that take?
Bottom line is - you don't get a pair of lovely boobs - it's not a boob job. It's a patchwork stuffed mound sewn in, to save you wearing a prosthesis in your bra. It's main advantage is that you look normal when wearing clothes - you get the symmetrical cleavage back, and can lean forward more confidently. None of the women in her photos looked normal or symmetrical in the buff. Once the reconstruction has settled you can have the other side lifted to match. Terrific. Why can't they make the new breast better match the one you already have? The whole nipple construction thing looks rather Heath Robinson to me. But what do I know? Plus, the whole breast will be pretty much sensation free - which is rubbish, like when your arm goes to sleep. My upper arm is still numb on the underside now.
I had foolishly wanted more. Can't believe how upset and bereaved I still feel about this 'amputation'. I sort of wanted reconstructive surgery to make it all better, back to okay again. It doesn't. But, it's what there is.

In the first week of August I took the children to New Wine. We had a wonderful time camping with friends and spending lots of time in worship, and hearing new things about how God is transforming lives. William was very busy, working on Team as a children's group leader, but he had a great week and made some new friends.

It was really great that my godmother made contact and, as she lives not too too far from Shepton Mallet, came to visit us for an afternoon at the campsite. We had a good catch up as we hadn't seen one another for 21 years!

I was so healthy and full of energy all week, and this made it even harder to face the final chemotherapy session on Monday 9th.

My oncologist explained that I will be telephoned around the end of September to begin a three week course of daily radiotherapy treatments, but until then all I have to do is recover from this last chemotherapy and enjoy the break from treatments.

I think the feelings of nausea, headache, gut rot, weird smells and tastes, confusion, and anxiety were the worst ever after my 6th chemo. I felt really rotten and tearful for the first week. I began to feel better after 9 days, but then easily tired and breathless as I hit the nadir of my bloodcounts.

And now - I feel just fine. I am so glad to have finished the chemotherapy. It has been hard work and very frustrating to feel rubbish in one way or another for 2 weeks out of three these past 4 months.

As soon as I felt better, Barbara and I spent a couple of days making damson jam - having found damsons growing wild and for free on the A4! And then later, I was pleased to accept Rebecca's help in painting our bedroom - a rather lovely intense truffle and soft duck egg blue.

The next challenge will be returning to work on 6th September, albeit mornings only for the time being. I will have to redevelop some self discipline about time management!

So many folk have approached me to tell me that my hats look great, and several have suggested I make them for others. After a lot of thought and research, I have decided that I can offer support and advice, and make hats, to help women create their own hat wardrobe to see them stylishly through their hair loss days. In a time of life when things are happening to you that you didn't choose, it can be quite empowering to have a lot of choice about what to put on your head each day, and to know you've made a deliberate decision to include your headgear choice in your wardrobe choice for the day. It's about owning your new look, and taking control., making your hat work with, not against, the rest of your clothes..... now, Hats Better!

29th July - 2 weeks after 5th chemo

The 5th chemotherapy session was horrid. The smells and anticipation of being ill are really nasty.

I had signed up to help on this Autumn's Alpha course at church, and there was a meeting about it on the Thursday evening before Friday's treatment - so I asked some friends to pray for me that I wouldn't suffer any side effects from the chemo this time.

Mum and Dad came to visit at the weekend and, determined that God would answer my prayer, I helped Him out a bit by trying really hard to ignore the side effects, keeping incredibly busy and distracted through the weekend!!!! There was actually some benefit in distraction activities, plus I was given even more stomach settling drugs to try - ones that temper stomach acid.

I rather overdid it nonetheless, and was wiped out all of Monday, shaky Tuesday, and needed lots of rests through the week. On Tuesday evening it was the end of year party for school staff, and I went along - but was quite tired. I got bitten by a gnat or something, and, ridiculously, it blew up into an infection for which I needed antibiotics. That's the first time during chemotherapy that I've really realised how delicate I am. Resolve to pamper self a bit more - and buy insect repellant!

Unfortunately I didn't get all the rest I needed because it was end of term week, and, planning to return in September part time, I needed to go into school quite a lot, to sort out my classroom, meet the children I'm teaching, and begin to make plans to return.

After spending all of Friday cleaning and rearranging my classroom I had really overdone things and become exhausted again. So on Saturday I was really run down, my calves were ridiculously painful ever since the gnat bite - it felt like the horrid tight ache/cramp you get after serious cycling.. I wonder if it had anything to do with the bite. Whatever it was, it made me tired and squeaky. So instead of resting, I decided it would be just the thing to go strawberry and fruit picking with the children. We came home laden with strawberries, raspberries, blackcurrants, gooseberries, cauliflower and cabbages. Then the children were challenged to research and make a dish with whatever they had picked. This involved buying rather a lot of cream, chocolate and cheese!

On Sunday things were good and we spent a lovely long day out on the Isle of Wight on the boat. The children had a great time independently buzzing around the harbour in the dinghy - and playing in the sea and sunbathing.

Having done the driving both ways on Sunday, I was again exhausted and did nothing (pyjama day) on Monday. I worked non stop around the house and garden on Tuesday, hauled a trailer load of ivy and garden waste to the tip, did nothing again on Wednesday and worked hard again today, packing the trailer for our camping holiday to New Wine on Saturday. (www.new-wine.org/summer)

So it goes on. Consistency and pacing myself is really difficult because when I am exhausted I build such a long list of what needs to be done as soon as I have enough energy. So I go non stop when I can in order to try and catch up. Trouble is - the family suffers my rollercoaster expectations - one day I'm laid back and let them slob around in pyjamas just like me, the next, I'm banning them from using laptops and watching tv, and giving them strict orders to wash this, tidy that, mend this, sort that, pack this, help with that, etc.

About healing:

My scar area still puffs up with lymphoedema, so I'm applying strips of kinesiology tape in ever more intricate patterns across my chest and down my torso - looks like Maori tattoos!

I am very relieved to note that the tight 'strings' or cords in my armpit and elbow have seemed to have gone almost completely and I have a better range of movement in my right arm. Now it is more obvious that there is a thickening of tissue all over my right chest and underarm which often aches in spasms, and is restricting my arm from the full range of movements that my left arm can do. I need to work hard at daily stretching out my arm and forcing that tissue to ease up and not to knot up even more. oh joy.

On a positive note, I am managing the hand swelling very well - I have avoided big swellings by anticipating activity and wearing my glove when needed.. which isn't all the time, thank goodness.

I am soooo glad the sicky feelings from the chemo have gone, but I am now properly dreading the next dose -even though I know it's the last one. The effects mess me about for about 9 days and leave me run down and tired and out of control. Ordinarily I would be having my final dose on Friday 6th, but I shall still be on holiday until Sunday - so I have rescheduled it for Monday 9th August. I'll be glad to have this picc line removed then too. It's just one more thing to take care of, be aware of, tuck in, up, or out of the way.
On the 9th I will have a chance to discuss the schedule for radiotherapy treatment following chemotherapy. The associate doctor who saw me at the last chemo session (not my usual oncologist) said that they like to start radiotherapy more than 4 but less than 7 weeks following the last chemotherapy session. Hopefully I can have afternoon appointments which will fit in around working mornings only from September.
I am now quite anxious about starting work again. Will I be able to cope and not get too worn out? How will I keep it simple and not be tempted to do all the extra things that make the job rewarding? Will I get frustrated? Will I be taken seriously or just humoured because I'm not really up to the job? Colleagues fussed over me so much when I came in to move furniture and straighten up my room. Will they get fed up of 'carrying' me in the Autumn term? It's common to be apprehensive about starting back to work after the 6 week summer holiday - that's a long enough break in which to lose some confidence. I shall have been off work for about 30 weeks. So I'll be 5 times more apprehensive in September than I usually am!

9th July - 2 week s after chemo.

I am feeling absolutely fine. I have been busy and happy and enjoying life since last weekend when the toxic feelings lifted, leaving me relieved, though fatigued.
I had some toothache on the weekend of my last chemo, which I panicked about, as it was around my front teeth. My dentist found no problems, which was a relief to me as I was beginning to fear being bald, lop-sided, swollen-armed and toothless!
Then I noticed that any activity at all resulted in my getting swollen hand and fingers - index and middle - on my right hand. Oh - that worried me too. It hurt too - the poor skin was getting rather tight. So far, swelling seems to subside when I rest up.. but it takes a lot of idleness to get it back to normal size. Over time, if I don't manage it, it will swell and not subside and become permanently fat. I made another appointment with the lymphoedema physiotherapist and she prescribed me a compression glove, which I have to wear all the time, for ever. Now that's another thing to get used to - having a chronic condition... can make you feel old, past it, worn out, unattractive. uggh. 'flesh' coloured surgical hosiery! I've been blinging mine up with a huge ring and a jolly bracelet!

Steph's Top Tips No. 34: If camouflage is impossible, if you have an undesirable attribute - bling it up, make a feature of it, go large and bold. I wear big earrings, bright scarves and hats rather than a minimal beige coloured headscarf. People can tell you've got no hair anyway (no 'sideburns' is a give away) ; if you look embarrassed about it, everyone is awkward. Give them an opportunity to say 'I like your headgear', rather than thinking, 'oh, she's bald and trying to hide it'.

Little John was 12 on the 1st July. He had a few friends over for a water fight and a birthday tea. I was really glad of Jennifer's help in getting the food together because I was exhausted and feeling rough. It all went well. Jennifer spied all the cherries on our tree were ripe and collected 2 bags full! The cherries were really tasty and prompted me to get the rest harvested, which I did at the weekend with fab new extending tree pruners, lopping off whole branches. (it needed a trim anyway!). With 25+ lbs of fruit I have bottled cherries, made cherry jam, and frozen cherries. I am really chuffed about my jam. Feel all country ladyish, and 'Good Life'y, I distributed a few jars at school. Pitting all those cherries was just the sort of time-consuming repetitive activity that causes swollen fingers. But then, so does housework, gardening, typing, knitting, hoovering etc etc. During this gorgeous heat wave we have also planted tomatoes and herbs, and made 2 hammocks.

Now I have a picc line for delivering my chemo drugs, I am 'under' the district nurse now, as well as everyone else. Every week she has to visit me, flush the line through with saline, clean the area, change the dressing and plastic attachments. I'm amazed at how much ridiculous pen-pushing/bureaucracy is involved. We spent an hour all told, as I had to answer a whole file of questions about my health, status, emotional state. I feel quite guilty to be such a drain on resources. This picc line is to be used once every 3 weeks for a single blood test and then for chemo delivery. But it needs servicing every week! It takes a shed load of sterile packs and specialist plastic bits n bobs, swabs and gloves and plastic aprons and so forth every time she visits. I couldn't be a nurse; I'm too thrifty! what ever happened to a bit of cotton wool and a good glug of Dettol? Its politico-medical correctness gone mad. No wonder parents these days are cluttering up A&E with trivial cuts and grazes; they've been conditioned to believe they can't cope at home. Stuff and nonsense. I could make the necessary cuts in the NHS - easy. Let me at 'em!

Last Friday, my breast care nurse telephoned, which I thought was nice. I thought she'd phoned to find out how I'm doing, but no. She had another patient who had seen me at Seroma Clinic, and wanted to know how to get hats like mine. Would I mind phoning her up? Of course not!

We met up on Wednesday at the Cancer Centre, borrowed a little meeting room, and played with her head, trying on my hats and scarves and showing her how to tie them and make a feature - see Top Tip No. 34 above!! She was ever so thankful, and went away with about 5 of my hats and scarves and a huge smile! She had been really worried and upset with the hat she had bought online - which was the weird pre-tied bandana thing that only people with cancer wear. She said she felt it screamed 'I've got cancer'. Now she's set to face the world, as her hair is due to fall out this week.

I have done really well not to have caught any colds or infections so far. I recognise I am vulnerable to disease and sometimes I feel a bit run down or tired or breathless owing to low red blood cell count. Most people tell me I look really well. I do. But that's because they only see me when I'm up and about, not when I'm too sick and tired to get dressed!

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.

May 17th 2nd chemo

My hair was coming out in thicker clumps by Monday. I couldn't style it any more, and the roots, which were by now very long and dark only added to the impression of patchy thinning. Rebecca helped me be brave and we removed my hair, saving tufts to make fringes out of, to tuck under my headgear. I am loving my new overlocker and have been sewing little hat and scarf combos.
Second chemo on Friday was as long a wait as last time. I got some much better anti-nausea tablets.
I have spent the weekend in bed, resting between visits from lovely friends, Judy, Sarah, Barbara, and my brother.
Learning to be a patient patient is hard. The advice they all give me is to do what my body says.. if it says rest, go lie down. It seems I can't hurry recovery along, just have to ride it out.

7th May - two weeks after first chemo

I now have a really sore throat and an annoying cough plus a runny nose. This is probably an ordinary cold, but I just feel more worried about it because apparently I'm less likely to be able to fight it. My sore mouth and mouth ulcers are a side effect of chemotherapy. I have been very up and down. In my last blog I had covered the days from the Friday chemo to the next Wednesday, where I said I was feeling thick headed, sickish and low. Thursday Friday Saturday continued in much the same vein, feeling lethargic and uncomfortable and with a sore tummy.
Then on Sunday I was absolutely as right as rain. I had so much energy and my mood had lifted. I was back to pre-treatment, pre-operation energy levels. I was back to the Stephanie I had worried might never re-surface. Mum visited on the Sunday, and we drove into London together and fetched Dad from his boating jaunt with friends. They came back to our house, stayed over and we all had a good time. On the bank holiday Monday, Judy and Yvonne came over and spent the day with their children. We were friends long, long before children, and it was such a lovely day of self-congratulatory, proud parenting, clucking over how marvellous we and our lovely offspring are. I had bags of energy and was so glad to know that the chemo-low had apparently passed.
On Tuesday Rebecca came over and we tackled the garden for the first time this Spring. We trimmed everything and I mowed all the lawns.
On Wednesday Barbara had several investigation appointments at the hospital, so I drove us there and we managed to cheer folk up in all the waiting rooms as we worked our way round the different departments. A really fun, upbeat day with lots of laughs was topped off with a visit to the gym with Jean.
What with feeling rough on Friday, and the bank holiday meaning there was no Monday Seroma Clinic, I hadn't been 'drained' for over a week, and I had a lot of swelling too, which turns out to be lymphoedema in the chest and armpit. This has made me self-conscious and unhappy.
I then started to go downhill again on Wednesday evening and was and have been tired and miserable and ugly ever since. My hair began to fall out yesterday. It comes out if I tug it lightly, at the nape of the neck, but not on top or at the sides. It is not yet appearing in clumps on my pillow in the mornings, or filling my hairbrush with each stroke.
This morning, Friday, I had a first appointment with the Lymphoedema physiotherapist, who saw that my swollen chest was partly seroma, and also some lymphoedema. She has taught me some self massage techniques, given me a compression sleeve, and is going to use some lymphoedema tape (like sticky plaster) on my chest, which will encourage sluggish lymph vessels to drain to nodes that work. She advised me that when I had noticed my arm swelled it was when I had overdone things the day before. I am going to have to remember to get help when I want the lawn mown, and to wear my sleeve for more physical activities... for evermore, apparently. Great.
Seeing the physio meant I had again missed the Seroma Clinic opening hours, but I was too uncomfortable to slope off home. I went down to the cancer centre, found my breast nurse and got my relief.
I am hoping to spend a happy weekend, because I can predict next weekend will be rubbish after next Friday's chemo. I have learned a few things from this first cycle - one of which is to get ahead of the game and take laxatives from 2 days before the chemo, to ward off any chance of constipation, because that was really distressing.
On the plus side - the weather's been quite nice lately.

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.

March 31st Results of Mastectomy Surgery

Yesterday Barbara came with me to the meeting with my consultant surgeon to discuss the results of the surgery and to be 'handed over' to the oncologist, who will be managing my treatment from now on.
The surgeon explained that he removed nearly a kilo of tissue altogether. What had been thought to be two lumps was in fact one tumour, 45mm in diameter.
It was a T2N1M0, grade 2 tumour, stage 2a cancer. (Dunno, you look it up!)
All the tumour was removed with good clear margins of healthy tissue all around, so he is confident he has got it all. The axillary lymph node clearance resulted in 14 more nodes being removed, none of which had any sign of cancer.
So - that is all good news.
The oncologist was very lovely, and explained that breast cancer can be treated in 5 ways; surgery, chemotherapy, hormone therapy, antibody therapy and radiotherapy. My cancer has/had nothing to do with my antibodies, so I don't need the antibody therapy (this is the drug Herceptin, that had been the subject of recent news reports).
So for best chances of cancer not returning, I score 4 out of the 5 treatments:

• I have had a modified radical mastectomy and axillary lymph node clearance,
• I have hormone therapy (Tamoxifen - anti estrogen, because I tested hormone receptor positive), and will take this drug daily for 5 years,
• and will now have chemotherapy. This will be FEC chemotherapy, which means I will have Fluorouracil, Epirubicin and Cyclophosphamide delivered by injection every 3 weeks for 6 cycles.
• followed by radiotherapy. This will be a 3 week course of 3 treatment sessions per week.

All being well, my chemotherapy will start on 23rd April.

Still getting horrid, weird sensations in my upper arm and chest, still filling up with seroma, feeling uncomfortable and needing draining every few days. Have found I'm not superwoman after all. I get quite tired out by about 3pm, ready for a nap, like a little old lady! Bit disappointed I'm not more energetic and pain free, but others tell me this is good progress. Oh. Best be grateful then.

March 27th Recovering well, and Seroma

Oh yes!
I've been out and about. Yesterday I drove to the hospital, to Judy's house, to Asda, got my hair cut, and later played Mum's taxi to the boys as usual on a Friday evening. It is so lovely to feel useful again. Today I've been clothes shopping in town with Bill and Ann. Oh, the fantastic ordinariness of it all - quite, quite special!


At the hospital I went to the 'walk in' Seroma clinic, to have the wound lymph fluid syringed off.
This is a particularly yucky thing:
Firstly, they cut my breast off. So I look down and it's all flat and gone - even slightly concave bizarrely! Just as I'm getting used to the new look, it starts filling up with fluid that can't yet work out how to drain itself away. If I move too suddenly it sloshes around noisily like a half filled hot water bottle. I got nearly a pint drained off, but it fills again quite quickly. Apparently I might need to go back once or even twice a week for a month or two till the lymph vessels that were cut during surgery heal over enough not to leak into the cavity, and my body learns to re-absorb what it can't re-route.
It feels weird/creepy, not painful, and plays havoc with my attempts to look 'even'.. I'm constantly adjusting the amount of stuffing in my lightweight hollow-fibre filled, vaguely breast shaped, vaguely flesh coloured (wonder if they do brown ones for brown skinned folk?) temporary bra filler that they gave me. I didn't believe the whole fake breast thing would work/ fool anyone when I first saw them.. but actually it's not at all obvious, and once I heal up and get my proper, weighted silicone chicken fillet thing I'll be even more confident.



My brilliant colleagues have been thinking of me while I've been 'off, sick', and today they sent me a special gift - a song!

http://www.youtube.com/watch?v=EbcbfgLAlGY

It made me laugh and smile and feel very special. I am honoured and touched that they would do this for me! Actually, I can't begin to express how wonderful it is to be loved and supported by so many people in this difficult time in my life. I just thank God for all these ways in which He reaches out to me in love and comfort and healing, through his word and spirit, and through the people He has placed in my life (whether they realize it yet or not, John!).

22nd March My Major Surgery

I am back home as planned after Friday's surgery.
I was doing really well last week, keeping busy, seeing old friends and having fun. It was especially lovely to catch up with my old college friend Aziz in London on Tuesday, and to meet her 8 month old baby for the first time.
I put off thinking about the surgery as much as I could. On Wednesday my lovely friend came and helped me in the garden - we pulled up loads of dead winter stuff and hacked back the ivy. We filled 2 huge builders bags, which Rebecca then took to the tip for me.
I filled Thursday with a thorough tidy up, clean and reorganization of the kids den downstairs. I moved cupboards, shelves and toys, and tidied up all the bookshelves and DVDs. I popped into Reading, bought black curtaining and a track, and sewed 3 curtains to partition off that section of the garage. And then I put up the curtain track and curtains.
So I only really became unbearably squeaky and frightened at about 8pm, when I packed my bag. Bill tried really hard to be nice and ply me with cheese and wine and mindless tv. But I found fault with him, the world and everything and hoped that by huffing off to bed, I'd make the time go away.
Friday morning was no better. I had to be at the hospital at 7.30. Bill insisted on taking me in. I was happy with a lift to the door, but oh no! He insisted on accompanying me up to the ward and 'settling me in'. But he didn't offer even to carry my bags! In the ward, I was shown to my bed, told to wait there, as the staff were in the middle of 'hand over', and someone would come and book me in. Bill stood there for approximately half a minute then made his excuses and left. He was finding this every bit as difficult as I was. I was cross with him, for not reaching out to me in my angst and hugging me and telling me everything was going to be ok. I would have been quite happy with this lie.
I sat in the chair and tried to read my book, and not notice time ticking slowly by.
The first person to come was the anaesthetist. After checking my name, he upset me straight away by asking me what I was having done. I couldn't even say it out loud. I just cried a lot, and tried to say - 'what is this? a test?' I thought he really ought to know what I was having done, and not have to rely on me to tell him!
This was the beginning of the farce.. He then misunderstood me through my sobbing and thought I'd said to him that I had come in for 'some tests'. So he got worried that I didn't fully understand the nature of my operation. He peered around the curtain to ask the surgeon, who was waiting his turn to ask me the same questions. He asked him, 'what's she in for? she thinks she's just in for some tests.'
Mr Surgeon then came around the curtain and gave me a big patronizing smile as he said, half to his colleague and half to me, 'we have met before Mrs White, you do know what you are having don't you?' He then leafed through my notes to find out.. ' A mastectomy and axillary lymph clearance. What side is it on?'
I was horrified to see him checking my notes there in front of me. I said between sobs that I was really upset and that I wasn't confident in him, as he hadn't even checked my notes before seeing me, to know what I was having done. He should have read up about me before saying hello. And his colleague the anaesthetist should have known what the procedure was.
I think of course that the anaesthetist did know I was having a mastectomy, and he could have said 'you're having a mastectomy and axillary lymph clearance on the right hand side, is that right?'.. and I could've nodded, or whispered yes; not been pressured into trying to say the words out loud myself.
Mr Surgeon drew arrows on my chest to remind himself where to operate and even wrote 'mx' on me, so he wouldn't accidentally forget what to do when I was wheeled in. I was upset by this too, and asked him how much of a factory production line this was going to be. Were there going to be so very many of us one after the other? I told him that although I know why they did it, (to double check and confirm and to allow no mistakes) it actually made me feel even more insecure in their abilities - that they couldn't think for themselves in theatre.
They left me alone for a few minutes while I cried and cried. Eventually they came back and completed the pre operation checklist, and consent form.
My breast care nurse came after that, and let me know it was okay to cry. I pulled myself together, and asked a few sensible questions. I was to be 2nd on Mr Surgeon's list, and I was his only 'big' operation that day, and it would take about an hour and a half to 2 hours.
From then on time went really quickly, and I got changed into a gown, and was walked down to theatre by the nurse. She was really gentle with me and kept up a steady prattle of small talk , as I was walking so slowly, partly through apprehension at what was to come,and partly because I could barely see without my contacts in.
I woke up quite happily, with no pain, and soon asked to go back to the ward. The operation had taken two and a half hours. I phoned Bill, who came to visit, and texted everyone to say it had all gone well. I had been given a morphine thing so I could dose myself whenever I wanted.
I had a very good time for the first 48 hours, and had lots of visitors.

Bill decided that he would demonstrate his love and care by making food for me - so I wouldn't waste away on hospital food. He filled a cool box with 2 slices of pizza, a ham and mustard sandwich with home pickled onions on the side, a cheddar and homemade onion chutney sandwich, 2 smoked salmon and rocket bagels, a prawn salad wrap, a chill and ginger infused salmon steak ciabatta, a prawn salad ciabatta, 4 mini pork pies, 6 mini scotch eggs, a punnet of baby plum tomatoes, a bag of satsumas, 5 apples, 4 large bars of chocolate, a box of Thorntons chocs, a bag of hard wine gums, and a bag of soft wine gums, some gu chocolate pot puddings, and some gu extra special individual cheesecakes, 4 yoghurts, 8 mini cans of lemonade, several bags of crisps, and 2 bottles of squash concentrate. He didn't forget the disposable cutlery and mini sachets of salt and pepper. He must love me very much, huh? Feeder.

The tubes they left under my skin, called drains, collected fluid into vacuumed bottles by the side of the bed, but by Sunday evening they were causing such acute pain as they rubbed internally against raw nerves. I was either in agony when I moved, or very frightened of the pain and therefore too afraid to move lest it hurt. So I got into terrible frozen positions for what seemed like hours, not daring to move and developing stiff, sore shoulders and neck.
The nurses said not to worry because drains can often hurt like this, and they would be removed on Monday morning. In the end, I was worrying enough to warrant a house surgeon being called to examine me, and I had to insist they give me some oral morphine to get me through the night.
And - this morning they removed the drains and I gradually regained enough confidence to move, get up, get showered and dressed and get ready to come home. I only need paracetamol and codeine for pain relief now.
By the time Bill came for me at 2pm I was happy and cheerful, and fully able to move freely.

I may need to go back to the walk-in 'Seroma Clinic' on Friday to have any more fluid syringed out of my wound, and then back next Tuesday to hear the results of the surgery (what they found when they examined what they removed), and to be handed over to the oncologist who will be planning any medical treatments I undergo after I heal from this surgery (4 to 6 weeks).

Lots of things occur to me when I look at my body... the whole wound area is covered by a large see-through plastic dressing, so nothing is hidden. I'm shocked, and repulsed and I feel sorry for myself. I am disturbed by the shape I am left with. I feel robbed and damaged and I want to blame someone. This has surely got to be someone's fault? Then again, maybe they've actually cut off all my cancer? Perhaps I haven't got any cancer left anywhere at all? I'm also weirdly fascinated by the surgical work that's been done. I wonder how they know what and where to cut and what to sew up. Looking down my teeshirt I can see straight past my ex-breast, and I am suddenly inescapably aware of how big my belly is! Good job I managed to get the night shift staff to help me out with Bill's cool box.

11th March Limbo time

Since my last post nothing much has happened; I'm just waiting till the 19th for my surgery. It is a long long wait. I have filled the time with friends and home and family and treating myself. It has been great. Feels a bit like maternity leave.. the pain hasn't arrived yet... there's this limbo, the lull before the storm. A chance to relax and enjoy myself before it all goes tits up! :)
There has been the physiotherapy... I had my first physiotherapy appointment on March 1st at Wokingham hospital, for the axillary cording, the tight strings that developed in my underarm and were painful when stretching up. I had fully expected that the very nice physio would take down all my details and give me a leaflet with exercises to do at home, and perhaps show me how to do them.
Instead - she actually spent about 45 minutes massaging and manipulating my arm, and 'popping' these tight cords. It is amazing how much better I was after just one visit and now, after two, I am almost all better. She said the cording might well occur again after the mastectomy, but the good thing is, I'm already her patient, and the therapy (myofascial release) will make it all better.
My oldest friend sent me a lovely coffee table book (!). A glossy photo book, with little stories and large, tasteful nude photos - of women who have had breast reconstruction surgery after cancer. All of them victorious, strong, sexy women, leaning against farm machinery and hay bales etc, half draped in chiffon or wearing only a string of pearls etc. A perfect gift for every woman like me! It is called The Boudica Within. Thanks, Quita!

26th February Results of 'Investigations'

This morning I had the rest of the 'investigations' following the discovery of cancer in the lymph nodes - ultrasound scan of the abdomen and liver, and a chest x-ray to look at the lungs.
The sonographer could find nothing abnormal in the ultrasound scan and the radiographer couldn't see anything immediately worrying in the lungs.
I met with my breast care nurse to discuss surgery and prostheses after that, and she went to find out if they'd had the results of Monday's bone scan and blood tests. She came back with the message that they couldn't see anything obviously wrong in the bone scan either.

So that's all good, then.

I have been prescribed tamoxifen, 1 a day for the next 5 years. I'll pick up the prescription on Monday.

I really didn't like facing up to the fake breasts and talking about weird, special bras with features suitable for mastectomies. I didn't take any of the catalogues home. It's all a bit much.

22nd February Bone Scan

In-service training day for teachers today after the half term break. I went into school to clear away a few personal belongings and make some space for Esther to set herself up as the new class teacher.

Barbara accompanied me to the bone scan appointment at noon. Once again, the receptionists in Medical Physics were welcoming and friendly. Barbara recognised one of them. (She knows everyone, from Les and Les in The Lyndhurst to Roz with the purple hair at Asda!) This lady had been a parent of twins Barbara taught 20 years ago in Tilehurst.. so they had a natter. Then Barbara gave the physicist a run for her money, and interrogated her about how the radio-isotope was going to show up cancer in the bones.

Well, apparently, the radioactive thing is injected in the veins, sloshes all round the body and settles in the bones all over, after about 3 hours. The scan picks up 'hot spots' where the marker shows that there's increased bone density or extra growth. This may indicate cancer, but has to be carefully interpreted because it may mistake things like arthritis and bone scarring from previous fractures. Cancer can appear anywhere, in any bones, but it may often appear in the spine and ribs.

The physicist took a blood sample for another cancer hunting test, injected the marker, and sent us away till 3.30. So we went and played at being Ladies Who Lunch, in town on the riverside. Could get used to this bit..

The scan at 3.30 was a lie down affair; I had to keep still for 20 minutes while the bed slid slowly out from between the scanner sandwich things. The results will be interpreted by a radiographer - not the operative who took the scan (she was saying nothing!), and will be available in a week, for my consultant to share with me.

I got Barbara to take a photo of me on the scanner couch, and she and I had a quick look at the fuzzy grayscale pic of me on the screen. The operative wouldn't let us take a photo of the image, and we aren't trained radiophysicists - but - we both concurred that there was a fuzzy black triangular shape in the bikini area!! :) Note to self; have a little tidy up when you get home!

Will and Ben met us after school in the hospital, and got a free Radiation in Medicine lesson from the very kind resident medical physics geek while waiting for my scan to finish.

So - all in all not a very stressful procedure today , but it's little things like these hospital appointments that keep reminding me I must be ill, or they wouldn't be faffing around doing all these tests.

Asda on way home; fajitas for tea.

19th February End of Half Term Holiday progress report

For my birthday present, Bill bought tickets for the dinner/theatre at Sonning for Wednesday 17th. Judy and David and Natalie and John came with us. We did have a very lovely evening together. I wore that interview jacket (which didn't help!), with a beautiful pink corsage (which did!). We saw Simon Williams, Philip Pope, and Issy Van Randwyck in Simon William's own piece - It's Never Alright on The Night - a collection of funny showbusiness stories - sort of 'stand-up'.. anyway - very good. Bill and I really rate the Mill at Sonning for a good evening out.

Saw my GP today and got a sick note for my employer, and an exemption from prescription charges form. I have a bone scan on Monday, and liver ultrasound scan on Friday. The appointment I would have had with the breast care nurse yesterday about reconstruction surgery options (choices about boob jobs made from tummy tucks versus implants etc) has been commuted to an appointment next Friday with her about what kind of socks I can stuff my bra with!!

Then there's a physiotherapist appointment for the axillary cording on the following Monday. This tightening of the tissues in my underarm is quite painful when I try to stretch my arm, but apparently I must keep trying to. It looks like tight wires in my armpit, running to my elbow. Oww! And I don't think the lymph drainage system's working too well, because I feel like day 2 after the boys were born - when the milk came in.. aaagh.

After that I have the joy of meeting with the Fit For Surgery Hospitality Competition runners up on Friday 5th March - to assess my suitability to be further mutilated at the public's expense. Actually I know what this is all about.. it has little to do with how well you are able to cope with surgery, but more to do with (a) checking you aren't bringing MRSA or any other bug into hospital with you, and (b) providing human pin cushions for their student vampires to practise on. Hey ho. (how do you show a smiley on this blogthing?)

After that I will be twiddling my thumbs until the 19th, apart from appointments to discuss results of these scans and investigations. I'm not generally miserable, so now's a good time to say hello. I'll try not to bite your head off - unless you catch me on another dodgy results day... check blog to gauge mood if unsure!

16th February - Results of Sentinel Lymph Node Biopsy

Had a lovely birthday on Sunday. They sang Happy Birthday to me in church. Made me cry..
Friends visited, and we had a really good family dinner together - Bill cooked a lovely roast.
Mum and Dad had planned to visit me on Monday - even after Dad's nasty turn last Tuesday.. but then - Mum cancelled because my poor dear Dad had become violently sick on Sunday afternoon. Could be the Norovirus? Andy came over anyway. It was great to see him, and now he's gone off to his Mum's for the week.

This morning Jean took me to the appointment. The results of the sentinel lymph node biopsy are: they removed 5 lymph nodes; one was cancerous. This means:

• they will remove all the lymph nodes when they do the mastectomy.


• they will count how many are cancerous after having removed them


• if more than 3 are cancerous they will definitely want to do radiotherapy because without it there is a much higher chance of cancer recurring in the breast


• radiotherapy is done before reconstructive surgery


• I will have 2 operations - one mastectomy, and then, much later - reconstructive surgery to balance my shape, if wanted (! hah!)

Since I have cancer in the breast and lymph nodes, they are hunting it elsewhere too. Next week I get a bone scan, a liver scan, a chest x-ray and some blood tests, because if breast cancer metastasises (spreads), it usually goes to the bones, liver and lungs.

I asked about the likelihood of needing chemotherapy (which would come between mastectomy and radiotherapy typically), and I came away with the impression that this is likely, though in what form is not yet known.

They looked at my armpit scar and I pointed out the horrible tight 'cords' which have appeared which limit movement and cause pain. The nurse said something about physiotherapy. I looked up these tight 'cords' online at home - it's now called axillary web syndrome and is a common occurrence after axillary node biopsy. Sometimes it doesn't go away. It is a risk factor for lymphedema. I was told to keep exercising and stretching even though it hurts.

There isn't really a choice as I see it. I asked about other treatments, radiotherapy during surgery, lumpectomies, and was advised that there isn't really much choice in my situation, with my size tumours, and little areas of abnormal tissue in my size breasts. I could risk opting for a mastectomy with immediate reconstruction - hoping hard that the axillary node clearance brings up no more than 2 more cancerous nodes (which is the threshhold level for radiotherapy being given post-operatively). But that's gambling. It would be a painful shame to see good reconstructive work go to pot with the damage that radiotherapy would do to newly grafted tissue and implants.

I am therefore having a mastectomy without immediate reconstruction, and the axillary node clearance on the 19th March. That's the earliest my surgeon can do. I have to visit the Fit For Surgery folk again before then to be deemed fit. (hmm.. if I were fit, I wouldn't need surgery!!) Last time they saw me they made a real hash out of getting blood samples, their receptionists were grumpy and unhelpful, and they don't even try to keep waiting times down. So I didn't stay today to be assessed, ("take a number, about an hour's wait, love") but made an appointment for first thing on March 5th. Surely they won't be running late with their 1st patient of the day?

So, not to worry. Came home, Jean and I got stuck in with pancake making for children's brunch, rearranged my farm, shopped at Asda. I'm thinking Chilli Con Carne for tea..I see they're getting Colombian bananas in now. But we always buy the Fairtrade...

February 9th - musings on not being at work

So, I didn't want to be posting trivia daily... but the temptation is great! It has been a very long time now since my day surgery - sentinel lymph node biopsy on the 5th. It has already been a lot more than 4 days!! :) hmm. The breast care nurse says I have to wait until the 16th to find out the results of that procedure. The results are in on Wednesday 10th, but the consultant's next clinic session - where he feeds back to patients isn't until next Tuesday. These results will show if there is cancer in the under arm lymph nodes too. If yes - then more scans to see exactly what else, if anything, is affected. If not, then straightforward surgery followed in many cases by straightforward chemotherapy, I think.
The children have expressed delight at the idea of a stay-at-home mum for a while... they think I'll be getting up well before them, fussing over cooking them each a full English breakfast, and then lovingly making their packed lunches for them, dusting and polishing and ironing and darning until each one arrives home from school , then settling down with them one by one and showing a Grannie's delight and interest in their day, and helping with school projects and homework whilst stirring up delicious home made evening meals with the other hand. Sadly, it's true, there's a part of me that would like to be the sort of person who would find fulfilment in that, and I've been practising a bit so far, because it is a noble lifestyle, which I admire.

But then, there's the other side - as I see it.. full time mums command less intellectual respect from their offspring, and are statistically less likely to be able to be of use in helping with homework; they risk denying their children important creative independence skills - gained only from having to fend for themselves on a daily basis; they become doormats to their family and uninteresting company for their peers. Apparently, the very best model is the part time working mum. So as soon as they started coming in from school today I went to bed for a nap! I got up later and directed Ben to cook pork steaks, peas and chips (all from the comfort of my armchair), and have backed out of helping Little John with his homework. I helped yesterday. He can plead with William to give him a hand, or he can jolly well square up to the task by himself!

Anyway - this week off work isn't really a career decision. My sore wound is more achy and bruised than I expected - but still easily pacified with ordinary brufen etc. I have felt more tired than I realised. Monday and Tuesday I got up early and bouncy, did the perfect mum thing, kids off to school, made their sandwiches, waved hankie at door .. but then felt stupidly tired after a spot of housework - vacuuming, ironing etc.
What IS going on? I am not known for needing to vacuum, dust and polish. I haven't spent my weekends these last 7 years catching up with housework because my job has prevented me from my life's ambition to have an immaculate home.. Life has always been too short for that. The weekend was a non-stop hoot; giggles with friends, cups of tea, cake, flowers, facebook!
Lots of people have made time for me - visits, calls, messages.. I love company and being the centre of attention, and I enjoy being hospitable - so from that angle - it's a win win situation.

This evening, Mum phoned, briefly, about something else. I knew something was up because she was on her mobile. She didn't want to tell me - but I got it out of her (there's a kind of satisfaction, like hooking out a garlic snail from its shell with those little forks; fiddly but worth it) - Oh dear...
She had to take Dad into A&E today because he had such a massive pain in his right, swollen, immobile arm, a cramp or something - and he was at screaming point with pain. When she got him to hospital he had by then also got pain/immobility in his right leg and wasn't able to use it. So they've kept him in, and dosed him up with horse pills or something. Get well soon, Dad!
And that's really why I posted today. So you can know too, and pray with me, for Dad.

February 5th - Day surgery; Sentinel Lymph Node Biopsy

At 5.15 am Bill brought me a cup of tea, like he usually does before setting off for work at 5.30. It's great someone's being normal.
As soon as he left I got up, showered, cleaned the bathroom, washed the floor, changed the sheets (including the valance.. now that really is a measure of how abnormally I'm behaving!), dusted and hoovered the bedroom, did my hair and make up, packed a bag, left the children and got a lift from Jennifer to the hospital for 7.30. Couldn't sleep anyway.

Name, date of birth, first line of your address, name, date of birth, hello I'm a surgeon, first line of your address, are you allergic to anything?, name, hello I'm the anaesthetist, have you got any crowns? metal work? piercings? date of birth, address, doctor?, have you eaten anything? name, date of birth? On and on, this is what we're going to do, sign here, wear these surgery socks, hello I am another doctor, name?, date of birth?, have you had a drink since 6.30? No. Good.

I think they do it on purpose. For the first 40 minutes it's non-stop repetition, meeting the team and confirming my identity. This is so that when they then leave you to wait for your turn (11 o'clock) with nothing at all to do - not even a ward TV and a spot of Jeremy Kyle - you don't notice for the first half hour because you're just glad not to be asked your name again. The waiting really dragged on. It wasn't a very cheerful place. The other women nearby were also waiting for breast cancer surgery. Not a lot to laugh about.
Everyone else went and came back. And started to eat toast! Just as I was trying to catch some shut-eye my number came up.
Friendly people escorted me to theatre and they did that clever thing where you don't realise that they aren't just laughing and joking with you till you wake up and wonder at what point they knocked you out with no warning. Cunning, these Indians.
It hurt straight away and I was so cold. The painkillers worked very soon, so that was fine. And - get this - they gave me a bair hug blanket thing..a disposable sheet thing with 'duvet' type channels in it, which they attach to a warm hairdryer type of thing and it inflates to make a warm cosy blanket. Fab! Did they re-use them? No. Good. I've nicked it. Already tried it out at home. I love gadgets.

I went back to my bed on the ward and everyone else had got dressed and gone. I watched the boys coming out of school. Ben waved at me, and came in to see me, and, rather than taking the bus home, came home with me in Judy's car.

I feel really warm and fuzzy and irresponsible. I am glad the bedroom is all clean. Ann bought me flowers on instruction from Mum. They are lovely. With cabbages!