parp sniff

Now Eleanor has generously donated her cold to me!

The technical stuff

OK, so this is what they told me.

Surgery: I had a left Wide Local Excision: ie they took out the lump, and a fair bit of tissue from around it.
I also had Axillary Clearance. This is where they took out a load of lymph nodes from my armpit. (The actual scar is just under my armpit)

Type: Ductal (ie the cancer was growing in my milk duct)

Size: 19 mm : This is classed as small. The surgeon said I'd probably caught it as early as I could, though it could have been growing for a couple of years. Before this stage they are hard to detect. There was also about 6mm of DCIS (precancerous cells) around this which they also removed. The margins are clear: this means that they also removed some healthy tissue to make sure they'd got it all.

Grade: 3: This means that it's a nasty aggressive beastie. However, most women my age with breast cancer apparently are grade 3.

Lymph glands: 1 out of the 20 removed contained a tumour.

Hormones: Oestrogen and Progesterone -ve. Some cancers feed off some hormones, and if mine did, there would be various medications (like Tamoxifen)that I could take. However, mine doesn't so I won't.

HER2 status: Still waiting for this info. This basically would indicate whether Herceptin would be any use.

Chemotherapy: It is entirely possible that the surgery took out all the cancer cells, but there may well be some still slooshing around my system, so the chemo and radio are aiming at those. Without it there is a 40% chance that it would reoccur, with it there is a 20% chance. So (if I've got my statistics right!) There is a 60% chance that I'll go through chemo but not actually need to 'cos it's all already dealt with. And there's a 20% chance I'll go through it but still have problems in the future. But there is no way of telling which.
I will be having Epi-CMF, which is Epirubicin, Methotrexate,Cyclophosphamide & Flourouracil. This is 4 lots of the Epi bit followed by 4 lots of the CMF bit. They bung you full of the chemicals, wait a while for your own cells to recover a bit, then hit you with the chemicals again. I can't wait. The Epi bit is normally every 3 weeks so takes 3 months, the CMF bit is every 4 weeks so takes 4 months. However:

NEAT-A study is the name of the clinical trial that I should be participating in. Basically, they want to try to do the whole thing faster to give the cancer cells less chance. However, they need to give my white blood cells as much chance as possible, to prevent infection. This is why there is normally a 3 week rest period between getting the drugs. However, in this trial they give you a G-CSF drug called pegfilgrastim or Neulasta which encourages white blood cells to recover faster. The resting period would then be 2 weeks. So the whole lot will take 20 weeks rather than 28.

Side Effects of Chemo: loads. Possibility of infection, hair loss (we already own 3 wigs: Cleopatra, mad scientist and beatle), sore mouth, colic, diarrhoea, fertility problems, tiredness etc etc. We shall see which I come up with. When I know the date I'll be starting chemo, I intend to cut my hair short.. I think I've found an organisation who will buy hair to make into wigs for people with alopecia. Anyone want to join me in radical hairstyle change? E thinks I ought to cut my hair to look like Dad's. Hmmmm.

Results... and Trials

Paul and I spend all of yesterday afternoon at the breast clinic. We had 3 consultations, 4 hot drinks, 2 buns and one lost handbag (I lost and found my handbag at almost exactly the same time as another punter who had been in the next bed to me in hospital lost and found hers. I think there's a black hole in the clinic somewhere.)

First Consultation: Had my scars checked by Breast Care Nurse and fluid drained from under the arm. 450mls worth. No wonder I was finding it uncomfortable to sleep. Unfortunately the fluid is building up again. P tells me I was walking around looking like C3PO. There's nothing like encouragement! Apparently this is all perfectly normal, and I am recovering well. I've got good range of movement in my shoulder (though I'm sure a few sessions of hydrotherapy wouldn't go amiss: if anyone at work needs a little practice?).

Second Consultation: With the surgeon. The surgery went well, they got all of the cancer and precancerous cells, took out 20 lymph nodes of which one was cancerous - this means that it had begun to spread. This seemed to be on the good side of what they expected for my age(no lymph node involvement would be better).

Third Consultation: With the Oncologist. Basically I will be having Chemotherapy: normally this is over 7 months, but I can take part in a clinical trial which would shorten it to about 4 1/2 months. Then I'll get radiotherapy. I've got to have various blood tests and the like first, and we'll go back next Monday to discuss the details.

Meanwhile, E has a bad cold and a bit of a temperature. We stayed at home today and watched Cbeebies all morning. Quite how I'm going to manage during Chemo when I'm supposed to avoid infection I don't know. E seems to be starting on getting all the Brummie infections, having exhausted all the Black Country ones.

There's a load more technical info which I shall post in a separate post once I've got my head round it a bit. Or you can look at Paul's blog, which he is typing at the mo, which probably says much the same.

The History .. Part 6: The MSc

Last Friday I should have handed in my first assignment for my MSc.
For the past few years I have been considering doing an MSc in Learning Disabilities. The University of Birmingham do a good taught MSc, and I quite liked the idea of being a student again, going to some lectures, getting in cheap at the cinema... and forgetting the 2am essay crises and not being able to find the one book or article to complete an assignment.
In fact, I was seriously considering starting this MSc in 2003, but Eleanor had other ideas. So, now that she is 2, and (at the moment!) sleeping through the night, I applied for the course, and in October, at last became a student at Birmingham University. (Paul has been making comments ever since about how long it took me to see the light etc. I still maintain that I have attended the best Poly and best New University... and the second best University in Oxford. I see no need to attend a red brick University as well. But hey, they offered the course I wanted!)
Now however, the University now only offers the MSc as a distance learning course. So I am in the odd position of being on a distance learning course at an institution around 2 miles away. There are texts that we have to download each week, with dire warnings not to download them early, as there may be changes and updates (I haven't noticed any yet).
I now have a student card, and have enjoyed getting my discount at the cinema. I attended freshers fair, and was immediately stopped by someone who guided me towards the 'post grad and mature students society' stall. You mean I don't look half my age? The fact that many of the other freshers were in nappies when I was first a student...
I had completed all the texts in my module, and was beginning on my assignment when I was diagnosed. The first assignment is a case study, and I had booked time out at work to do the research, and had 5 weeks in which to write it up. Which considering how last minute I normally am, is not bad. However, my last week at work was spend running around trying to sort out my caseload and other responsibilities, so I had no chance of getting the information I needed. Nor did I have any brain power to even start thinking of the assignment. So I have deferred the whole course for a year.
I am still on the computer system tho'. So I have begun downloading the information for module 2: Research Methods (excitement!!). And at any time when I am in work, I can pick up the case study again. This is when I find out that they have decided to change the whole course for next year. But still, it will give me something to do to keep me out of mischief.
I have to inform the University in August whether I intend to take up the course again in October. Which in effect, since I have done all of Module 1 except the assignment, means that in August I have to predict how well I am going to be in December. So I guess the more I can get done while I am well, the better.

Home and Gentle Exercises

I've been sent home with a set of exercises that I have to do 4 times each, 4 times a day, indefinitely. This is to retain range of movement in my shoulder following surgery. (It's not the surgery to remove the lump that's the problem: I also had lymph nodes removed from under the arm to check if the cancer's spread)
The exercises include putting my hand on the back of my head and moving my elbow backwards and forwards. And holding my arm out to the side, fingers straight, bending and flexing my wrist. Try it. Did you feel as silly as I do?
It's a wait now (about 3 weeks) for the results of the op: they examine all the tissue to make sure they've got all the cancer and if it's spread. Then after that they tell me exactly what they're going to do. Meanwhile I can't drive for 3 - 4 weeks, I should be off work 6-8 weeks. My arm is feeling numb in places as nerves have been cut. I've got to be careful not to cut/burn/otherwise damage my left arm for the rest of my life, as lymphoedema is a possible side effect of the surgery. And I can't wear deodrant for about 2 weeks. However P has a bad cold and E hasn't complained yet...

I'm home

I'm home, a bit uncomfortable but not really sore, and tired. E has just gone to bed, and I think I'll be following her example.

One day post-op

7.56 in the morning after the op. My back aches - I've been sleeping in the same position all night. I've got a cotton shoulder bag containing my drain and trendy white stockings.
I was told yesterday that I was 3rd on the list. Should have the op around lunchtime. Nothing to eat or drink since midnight (I did contemplate a pre midnight feast...). I can cope with not eating (honest!), but it's the lack of early morning cup of tea that's the killer. I even got P to bring me in some Earl Grey tea bags yesterday. Anyway, just before 10 yesterday, I was sitting twiddling my thumbs and developing a headache, when they came to take me to theatre, having changed the lists. Quick change into gown and stockings, gulped down my pre meds and wheeled down various different coloured corridors. The turning circle on a bed is quite big, and judging by the state of the corners of the walls, not all the porters make the manoeuvre successfully (my porter was a skilled one though).
Into the anaesthetic room accompanied by a 1st year student who did a very good job of reassurance and gentle chit chat. Got various press studs glued to me my a chap with 'Smile Jesus loves you' tattooed to his arm. I kept my eyes open as long as I could, and went under round about 10.15
By the time P came to visit I had surfaced enough to converse. I feel far better than after my abdominal ops: laughing, coughing and sitting up are all fine.
It's now 10am, I’ve been seen by the breast care nurse and put my bra on (not as uncomfortable as I thought it would be) and given my exercises: basic range of movement of my left shoulder. Not too uncomfortable, just need to make sure I remember to do them.
I'm in a large ward, 16 beds, but remarkably quiet at night. The sinks in the bathrooms are tiny, so cleaning teeth is awkward. However we have internet access, telephones and TV at the bedside... mind you, the hospital gets money from this. It costs us 10p a minute to ring out, but anyone ringing me has to pay 49p a minute. If anyone is feeling rich, Paul has the number. This morning I tried to make a phonecall, and it wouldn’t connect me, then said I had £4600 in my account. I should have tried to get my card refund!
Latest estimate of release is tomorrow or Friday... depending on when they take the drain out.

The History... part whatever…the Renovations

On New Year's Eve we cooked a full Christmas dinner for ourselves and Robin and Beth (my brother and sister-in-law). This is the first major bit of catering we've done in our new kitchen. We've been trying to get our kitchen and bathroom replaced (floors, ceilings, bathroom window and all) for the past 2 years. We finally found someone who would give us a quote, and the work has been done (by and large). Everyone who came was excellent; we only had a couple of days in which no work took place. The bathroom is now a lot smaller, with a 'utility box' between it and the kitchen. We have a range style cooker with 2 ovens and 7 burners (great for full roast meals). We have cupboards. We have doors! We have space! Eleanor enjoys being able to come into the kitchen and sit in the middle of the floor. And Paul and I enjoy getting back to real food. We had five weeks of microwave meals (when we could get at the microwave), baltis, inviting ourselves to friends’ houses, and eating at the pub across the road. We realised it'd been going on too long when Eleanor started walking down the road saying 'hooray pub!' and pointing out pubs on the way home from nursery. The work was all completed the week I had my diagnosis, so we didn't really feel like opening the saved bottle of champagne. And we won't be having the 'kitchen warming party' we had been planning - or at least not yet.

The history part whatever plus one: Work

2006 will be a very interesting year at work. Under Valuing People all long-stay Learning Disability hospitals should already have closed. Ours is still in the process. Several people have been resettled, and other plans are at various stages of completion. My experience in Social Services has come in handy when looking at the plans. The OT service is also changing. Having been a day service for many years, serving 60 odd onsite and community clients, we are in the process of setting up a community service serving more like 900 clients in the borough.
Meanwhile the team has been changing. We have all been through the delightful pay review process of Agenda for Change. This meant that for a while the OT assistants were graded higher than the nursing assistants, and the senior OTs higher than the nurses doing an equivalent job.
There were 3 senior OTs in the department. One has just started a new job nearer to home. My manager is due to go on maternity leave in February. And me. I was due to 'Act up' during tbe maternity leave (quite literally... I was making all sorts of dire threats as to how I would change the department... start basket weaving and the like...). However, now we have no idea how much I’m likely to be in work over the next year. I could be off for just a few weeks, or I might not even be up to working for a year. Probably somewhere in-between.
I spent a frantic week just before Christmas trying to sort everything out, handing over my caseload and responsibilities, cancelling courses etc, and loads of meetings. At one stage I was in two meetings at once, and also putting my head round the door of the social room where the 'animal man' was showing tarantulas and owls to the clients and the children from the nursery, including Eleanor. (No, she didn't touch any of them. And the owl tried to bite me!)
So the team are going to have to cope without senior specialist input. Though the head OT in the trust, the LD general manager and various other big cheeses have offered support. I also have the ability to go into work as much or as little as I am able, and to do as much or little work as I am capable of when I am there. This is very encouraging, as I don't want to feel that my diagnosis should automatically write me off for the year...

Into hospital

I was admitted at 1pm this afternoon (Bank Holiday Monday), have had blood pressure and temp taken and the usual battery of questions. So now I twiddle my thumbs for the rest of the day. I have a posh electric riser bed for the first time (I’m on the right side of the ward it seems). We've been told that P isn't able to be here during the op, so won’t be there when I come back to the ward. I was rather upset at this, and the nurse was trying to reassure me that it was only a small op: that's Not The Point! I will have had surgery however minor or major, and I want my husband to be nearby. However the NHS thinks in term of logistics: the inconvenience of having stressed relatives around, rather than about people and how having someone familiar there immediately after surgery might decrease my stress!
So far I have sewn labels onto E's clothes ready for tomorrow, and started on eating through my pile of goodies. I'm supposed to be fasting from midnight, so no early morning cup of tea....