The Watershed II

So there I am exhaling in delight and suddenly he started talking about my needing radiotherapy!

This was a shock because right from almost the start it had been evident that my whole breast would have to come off, with nothing left to radiate.

Off he went to check and kept coming back in to ask if we had any questions, but we hadn't. When he returned to confirm I wouldn't need radiotherapy, I had two questions which get gave me very short thrift with. My first question concerned the repeat prescription for tamoxifen and whether I had to pay for it. He snapped back that he didn't know about such things, but fortunately his registrar got the paperwork that I need to complete to avoid paying for tamoxifen for ten years. My second question was what to do if I experience serious side effects with the tamoxifen, and should I call his secretary or go to my GP? - and he said that the side effects were not compulsory.  He really did seem so offhand and distracted this time, as if he was so weighed down with his own problems, which of course may be the case.  He explained that my cancer has a 7% chance of spreading, but as I said! I would rather have the 7% chance that I know about than the many more percentages that I may not know about.

But in any case. The lightness of our step as we left the Arden Centre! Coupled with trying not to look too delighted, to all the people there whose news or outlook had not been so good. Once again, I feel so, so lucky.

The Watershed

So, everyone has been asking me for weeks now if I've heard anything back from America, from the oncologist about the Oncotype DX test. And I haven't chased it because deep down I feel that it's going to be ok, that I won't need chemotherapy, but also because I don't want to hear if I do!

The rose-tinted glow of my ignorance vanished when I saw several missed calls on my mobile phone and heard a message left by the oncologist's secretary, telling me I had an appointment on the third.
I knew that this was going to be it. The appointment was for quarter to twelve in the Arden Cancer Centre. I asked my inner spirit guide if I was going to need chemotherapy and the answer kept coming back, "No."  Months ago I'd asked my inner guide if I had cancer and there was no resistance.

I didn't even take a diazepam tablet the night before the appointment, and slept well. The following morning I had butterflies, but again, didn't take anything to calm me as I had in the previous occasion.

This time the Arden Centre wasn't as jolly as it had been the first time. Perhaps on the first occasion, when I'd thought I was going to get some direction on my need to have chemotherapy, I had been imagining it as one of the circles of hell, and was pleasantly surprised by the pink and purple chairs and pretty lighting: the patients didn't look like cancer patients and the oncologist had been witty and charming.

This time it was different. The patients in the siting room looked much sicker, though to my satisfaction I could see them striding through into the secret area purposefully when the bell pinged and their names appeared on the big screen. Some had no or little hair. Some in wheelchairs. Some looking very, very sick.

And this time, the wait was far longer. On the previous occasion we had waited an hour, but this was approaching two hours when the oncologist finally stood at the clinic door and called my name. He apologised and bundled us into a small examination room, and had to sit on the examining couch while he ran through my notes, painstakingly.  He clearly had no recollection of me as a person and spoke to me quite impersonally, and seemed preoccupied. Going over the same ground as last time was frustrating and then he seemed perturbed: he had two sets of graph results and I could see that one result was better than the other. Suddenly he realised that one set of results was not mine and he announced, quickly and concisely, that there was no benefit to my having chemotherapy.

Rollercoaster

The thing is, I am now in a state of constant flux.

On Friday evening, I left Pearl, Carole, Mary and Samina with a little angel each and went on my way. I felt fine, although on getting home the breast started flowing with fluid from underneath. Every time I moved it poured out and I had no choice but to lie on a towel to sleep. And in the morning (Saturday) we simply relaxed all day and did nothing and the leaking stopped. Perhaps, we thought, the leaking is naturally coming to an end. They'd told us that it would.

But on Sunday morning I awoke feeling terrible. Not sleepy, but terribly tired. And nauseous, although not quite the same nausea as when I knew I had cellulitis. The breast was also painful. I realised that I hadn't taken my antibiotics for some ten hours and sure enough when I took them the sickness seemed to recede. But the fatigue stayed in place, although I was cheered by a trip to see the children. Kept taking my temperature but it peaked at 36.8 ....98 degrees.

They have told me that it will take a couple of days for the infection to resume when my antibiotics finish tonight, but this indicates that it will start a lot quicker!  All I can do is keep hydrated and wait.

Today I awoke feeling so much better, and it was brilliant to just feel "normal". A fair amount of breast leaking I notice, and also the breast is starting to feel quite hard on the underneath. The skin is soft all over and not painful and there is no redness. The scar area looks like a dusky, healthy lilac colour. The nipple has somewhat collapsed in on itself, but I'm not bothered really. I like this breast but I've come to accept the inevitable ...something isn't right and I can't imagine that it will ever be.  People tell me not to be negative, but I'm just being realistic! The breast fills up with serum, and then it releases it through the scar tissue and I feel better, until it builds up again.

So I'm just enjoying the last few hours of being at home and feeling fairly normal before the inevitable trip back to hospital. I see the surgeon anyway on Thursday - the question is, what will happen before Thursday?

Bloody Ripoff Hospedia

I bought a £10 card with the intention of buying 2 x £5 bundles, to last me through two days on the ward at University Coventry & Warwickshire. I uploaded the £10 card and after the free morning TV had ended, I activated the first bundle which entitles you to 25 TV channels for 6 hours. I went to sleep at midnight and the next morning I noticed that my account was empty, when it should have contained £5 credit.

The cheery Scot on the helpline confirmed that my account was empty and told me that I had activated the second £5 bundle minutes after the first had expired, at half-past midnight. So now, he said, yes, the account was empty. I explained that this was nonsense because I'd been asleep when he claimed I chose and confirmed the second bundle....in any case, HAD I activated it, I would now have been able to see it 'counting down', and there was nothing counting down and no additional channels available.

He couldn't care less - he simply repeated that he could see exactly what I had done, and that was activating and confirming the second package at 12.30. Nothing I could say would make any difference.  

The entire system is a ripoff, starting with the outrageous cost of incoming calls, which charge the caller 49p per minute while drawling through the obvious information that this person is in hospital - OFCOM says that this has never been a directive - before the caller can even ring the bedside telephone, which if not answered, still charges the caller.

Subscriptions to Netflix cost £5.99 a month.  If you use it, this system costs £7.50 a day (and people buying cards of £10 can't get a refund), gives you less, and calls you a liar when you try and sort out problems. 

That was the week that wasn't - back in Ward 32

I've put off writing this blog and yet I shouldn't have. I just felt way too sick to begin it.

Back in Ward 32 - Part I

I awoke on the morning of Wednesday 12th August - the 'Glorious Twelfth' - being pursued by a problem. I felt nauseous immediately on awakening. And the nausea reminded me of a previous encounter with cellulitis. Not realising how seriously ill I was, I had tried to put off the situation as long as possible and then we needed to call a paramedic.

This time I wasn't going to wait. I saw inflammation near the scar and knew that it was time to go to hospital. Fortunately we were seen fairly quickly and ushered at least into a bed, because my head was beginning to loll and I felt giddy.  My blood count showed an infection, and a Moldavan plastic surgeon called Sergei told me that I would be admitted for IV antibiotics.

Back to Ward 32. Back to the same bed space I occupied before.

It is now a week since that night and when I think back, I don't remember anything much for the first three days. I was given two types of antibiotic intravenously - one was flucloxicillin and the other was penicillin,  Though I felt conscious enough, I was slipping in and out of consciousness for much of it.  I didn't speak to my ward mates because of the energy it consumed. Keith visited as usual every night  and I spoke to him on those occasions but I can't remember what it was really like. In the mornings it was always worse...nausea and swollen breast.

I do remember just weeping. The tears, flowing out of my eyes in torrents, feeling depressed and hopeless, but I can't remember the exact cause. I think on the first night I'd had no sleep at all because  of discomfort and pain; further punctuated by the obs rounds and the IV infusions, and then the sun came streaming in straight into the ward along with a loud chorus of nurses and healthcare assistants. Some staff nurses are gentle and let us sleep in the morning, but others believe in being sadistic. On this morning we had a sadistic team who walked in and flung our curtains back. It was the last think I needed and I got up and wandered down the corridor to the end if the ward, and there I sat noiselessly weeping for some time.

That night when my dear OH visited, I had a thumping headache and aching breast. I could not talk so lay in bed while he stroked my head.

My other real memory was that the original cannula inserted by Sergei on the 12th, needed to be removed - which was a pity as it was a good one. In the blackness of night I was visited by a dashing, tall gay nurse called Barry and he proceeded to try an fit me with a new one. He tried three times and each attempt was agony, and each time he failed. To his mortification he had to go and find someone more experienced, and an hour later a short gay sister came to my bedside.  She declared that the only place to spear me was under my left thumb at the bend of the wrist, which was excruciating to have inserted....but to be fair, the 6am infusion went well. It was not until my parents arrived to visit that the cannula gave up after the first bolus and the second was impossible to insert without serious agony. At first the nurse tried squeezing the syringe for a millimetre, and then resting, but even the resting was agonising. I was crying and calling out, "No! No! NO!" But she simply said that there was no reason for it to hurt so badly, as if I was making my pain up. My poor parents could only watch and stroke me while she pressed on, until finally she agreed to make up the rest of the drug in a drip bag. This seemed to work.

However that night it became apparent to the gorgeous night nurse immediately that this cannula was no good, and she managed to find a mysterious Night Sister who actually located  another vein to cannulate. By now I had completely run out of veins on my upper body and was desperate for this one to work. Huge bruises had appeared on the other sites attacked by Barry the Bruiser, which still persist at the time of writing.

The brain awakens

Today I was achey on the left side, and even resorted to taking a couple of painkillers. It may be the soft bra top I was wearing, which was padded. My new nipple had flattened.

But at least my brain started working again. I started looking at interesting ideas to create an online marketplace for my OH's printing business - although the business is busy this week - I've been berating him for not trying to expand into the personal market, and he snapped back that someone else should do the work. I was more than happy about this because I've always wanted to explore this as a venture but he used to want to keep control if it.

But oh, I procrastinate. It's hard enough to settle because we've got a builder in, making me a studio in the garden, and he's got his radio blasting throughout the dat, and he drifts in and out to make coffee and use the cloakroom. He's a nice enough bloke but I still feel unsettled. I did some dusting and some cooking but could not relax.

I was worried about my father who was having an invasive MRI scan in Bristol, and not having heard from him until early evening, I found it hard to concentrate. Finally he called me on a crackly line to say that they'd only just started back and that the procedure had been arduous but that he felt okay. I was so relieved that I wept and suddenly discovered my appetite again. But I know he will be very very weary from the whole experience throughout the weekend.

I finally found the ability to get down to business when I heard the radio switched off and the blue van reversing up the drive. I started searching on the web in earnest. I found some fascinating products already in the marketplace in America, and made notes on how they could be replicated for the UK market. And these thoughts led to other ideas, which I need to harness and make into a map. I find that I will think of something with merit, only to completely forget it moments later. It's crucial to write it down while it's fresh. Even if I feel as though I couldn't possibly forget it, I do. Also I researched some domain names and there were done considerable surprises available.

Only problem is, that now I have switched the brain on, it's feeling rather difficult to switch off.....

The Arden Centre

I had a surprisingly sleepy night. Which surprised me more than anyone.

The Arden Centre is the cancer department of the Coventry and Warwickshire Hospital, where I am being treated. From the outside it looks modern and streamlined, and quiet, like a gravestone on the edge of the hospital.

Inside, I was surprised. The revolving doors lead into a light and open area furnished with soft and comfortable chairs in turquoise and purple chairs. Above, there's gentle purple mood lighting, and under, there's a plentiful open refreshments shop, and plenty of books to read.

The people look normal: most of them are a little older than me, but they all look human and ordinary. This is not what I was expecting: I thought everyone would look like yellowed cadavers which hollowed eyes. People were chatting in groups, although in hushed tones. There is a large screen which puts up names matched with the booths which I suspect are the chemo chairs.

I am called by a nurse and all I need to do right now is give my weight and height and blood pressure reading. My blood pressure is very high at 170/93 (which for me is better than normal) but the nurse assures me that everyone is high because no one wants to be there. She warns me that I will probably not see The Professor, but I will see his second in command and it's almost as good. She also says that a) there will be a long wait and b) I will feel better before I leave.

In fact, I don't have to wait so long, and to my surprise I'm soon called through by The Professor himself. He asks me why I think I'm there, and I tell him, and he agrees.

It turns out that they aren't going to tell me today whether I need chemo. I still have to wait for two weeks while they send off my tissue to America.  But what I do hear is the reason hat if it does come back telling me that chemo is a good idea, then it will be a good idea. It is called the Oncotype DX procedure. It will take the soul-searching away. Also he tells me that if I need the chemo, it WILL be the kind that makes my hair fall out, and they can do a lot about the sickness. But it will only last for four and a half months.

So it was a good thing, today, although I didn't get the answer I wanted.

Bizarrely then when I was having pre-chemo follow-up tests, I was standing in the main hospital entrance and my ex sister-in-law walked in, along with her son and her father, who used to be my father-in-law. The son looked instantly pleased to see me, and smiled. The sister-in-law just looked and walked straight past, and so did the father. I couldn't believe the ignorance level. For all they know, I was there to visit a member of their family, but because of their ignorance, they didn't even bother to come over and enquire.

I had a blood test, which for me was like the very walk through the valley of death. After a long weight my number was called and I had to walk through opened cubicles with people sitting down having their arms pumped for blood, and hearing the nurses shout things like, "Now that's a nice juicy vein!" "Look at all the blood you're producing" and so on. I was allowed to lie down and be pampered.  Then I had an ECG.

But in all, a productive day although it didn't start off seeming so.

Moving along

It's funny. The pain is receding and so are the blog posts.

I've had no painkillers for almost three days now. Yes, I get twinges for no good reason: yes, my breast is a hotbed of pain if you were to really press it, but on the whole the pain is really in the background now.  In general the breast feels as if it has pins and needles. I still feel the implant inside swishing around, but perhaps I am more used to it now.

Some of the worst pain that needed fighting last week was the shingly, tingly pain at the site of the drain. It spread right across underneath the armpit to get right shoulder blade, right around the back. I thought it couldn't be right, but as the surgeon told me, everything eventually settles down.  Tonight I was surprised when my OH asked me if I was okay, snuggling up to him as I always do, and I realised that unconsciously I had settled with him on my left hand side, which I haven't been able to do for weeks now. And I was able to stay in that position. My left hand ribs still feel very sore indeed and I am not sure of the reason.

My strength is returning in other ways. Where I could only manage to hold a teacup in my left hand, I can now hold significantly more...maybe several plates? Even a full kettle? What I still cannot do is really to push against an object sigh my left arm. It still feels very odd to hold a loaf while I am cutting a slice if bread.

Today I have managed light housework, including ironing, hoovering and cleaning. However I feel very unmotivated out doing anything more creative. I have been presented with pure free time with no responsibilities and yet I'm unable to find the strength to fill it. Part of the problem lies in my depression about my dad's condition. If I hear he's had a bad day, all I want to do us sleep, like a blanket of unconsciousness that I can pull around my head, so I don't feel the pain and the worry.

Tomorrow is a new age.

I can't find yesterday's post, though God knows it took long enough to get around to writing it. It was a busy weekend, seeing my lovely boys at last and I'm pleased to say that they were very well- behaved and I was sorry to see them go on Sunday. We played games together and I think they enjoyed themselves too. Hopefully I will be able to see them more this coming weekend...

...which we are already halfway towards. And tomorrow I think is what you might call s 'red letter' day, and one I am nervous about, because for the first time, I'll be walking through the doors of the Arden Cancer Centre. I haven't been brave over the last few weeks, because despite the pain send the surgery, it has been as though it was so long ago that they told me that I had cancer, and it seems all like a bit of a dream. A haze of drugs and pain and adjustment, followed by bouts of euphoria when I got the relatively good news that there was nothing in my lymph nodes and that they though they had removed everything.

But tomorrow I may learn what else is waiting, and perhaps I shall get the test results which will indicate how likely if is that my cancer will return. They say it is unlikely that I should need chemotherapy, but then by they I mean the surgeon who didn't even operate on me, so what does he know? The specialist seeing me has an impressive pedigree but I note that he is also involved in a clinical trial which looks at the value of chemotherapy on pre-menopausal women. Of which I am currently one.

Currently, because my likely treatment is a five-year course of Tamoxifen, which will put me squarely in the menopause, and I am hearing so many tales of woe about it. One friend found it so dreadful that she stopped taking it: she had a complete personality change, became angry all the time. Another did not lose her temper or her libido, but suffers from blood clots. Though I try to determine not to read things on the web, it's impossible to avoid them when I'm genuinely trying to find out what I can about the drug.  And until last week, I was thinking that I had until mid-September until my body began this change, because they'd told me I wouldn't get an oncology appointment until a least then.

Will I get fat? Grow a moustache? Lose my libido? I won't mourn losing my period, but the inevitable loss means that I am going to age. My skin will become thinner and dryer, my hair will thin  and my bones will become porous. Night sweats, hot flashes and temper tantrums to look forward to. This is the good outcome for tomorrow. The bad outcome will be being told that I would benefit from chemotherapy as well. Not simply because chemotherapy is a bitch, but because the genes in my tissue will have indicated that the cancer might return.

Whatever the outcome, you will see it here.

Another trip North

After getting up super-early to get to Coventry for a hospital appointment with the Plastics Nurse at 0800, a cursory glance at the hospital letter showed me that it was in fact until 0900. My darling OH was so sweet about it, despite my rousing him an hour too soon, but it didn't stop me arguing with him as we waited for the appointment to start.

Our conversation had turned to my discomfort about the oncology appointment next week, and as I expected, he is thinking that it's a good idea to go and find out what they say. His stance is that he saw his neighbour opt to die early rather than endure another horrific cycle of chemotherapy. Therefore he believes that we should consider the option carefully and perhaps reject it if it doesn't seem to give a good return on investment.  He feels that my original and extreme reaction to being told I had breast cancer was too extreme (I wanted to have both breasts immediately removed) and that I need to think carefully about chemotherapy and not have an instant and emotional reaction if I am told that I need it.

I snapped back because whatever, I want it to be my decision and noone else's, no matter what the return in investment. I will not know how I feel until the moment I am told whether or not I need chemotherapy, and no matter what my reaction, I want to have it accepted that it is my decision. I railed at him for criticising the "emotional" and extreme way in which I faced my diagnosis in the first place and told him that whatever I said or did, it was my way of dealing with it.

He looked hurt. He has had malignant skin cancer in the last so he does know what it is like to be told that you have invasive cancer at a point before you know just how bad it is. He has been here.  But everyone is different. I just want to feel that some of the control, some of the decision-making, is mine.

We got past it and I had my appointment. It seems that the seroma is too insignificant to risk the draining procedure, but on the whole the breast is looking good. The plastics surgeon came in and said that the feeling I have of the implant moving around, is fairly normal and that it will shrink and settle in due course. I was also told now to actively wash the scabbed area gently, and this would remove it.

On the way home we found that we needed to make a delivery to Edinburgh. T-shirts that we had been told by our customer were allegedly needed for an event tonight, even though the event printed on them is actually not beginning for another few days.  But although the t-shirts were ready and printed, our overnight courier had failed to collect them the night before. We dropped into the factory and collected the six cartons and set off on the 300-mile trip up North. As we passed Preston, K spoke to the customer to assure him that, true to request, we were delivering the order personally because the courier had let us down. And everything in the customer's guilty voice told us that the deadline had been a false one, although this wasn't said in words.

But what the heck? It was a far better day than when we went 'merely' to the Lake District for the meeting....even some blue sky visible in jagged nuggets between the rolling white clouds. We crossed the border into Scotland a couple of hours later, and after the mandatory staccato run into Edinburgh, we followed the Satnav's instructions straight to our destination on Victoria Street in the Old Town and delivered the cartons....rather, I sat helplessly in the car while K ferried them all in.

I know he wanted to park up and get out, and find somewhere to buy stovies, but I couldn't face  walking around pre-festival Edinburgh even though I had been seated for over three hours. At this time of year, Edinburgh has plenty of restaurants and shops but they are either heaving with visitors, or closed. The prospect, at 4pm, of finding somewhere to sell us a decent scotch pie or a tub of stovies, was limited. So, to K's disappointment, we simply turned tail and drive back down south again, stopping only to devour a Krispy Kreme doughnut at a service station near the border.

Not such a good day

Yesterday was Wednesday and I felt so low that I didn't make any entries in this blog.

From the moment I awoke, I felt rough and weak, despite having had a good night's sleep. I was expecting my parents to come and see me for the day, so I was excited about that, but something felt very out of kilter emotionally and physically. It took some time to get going.

It was wonderful to see my parents, especially my father after all he has been through. I hadn't seen him since the day before my mastectomy, when he was in hospital recovering hours after his heart attack. Like me, he looked fragile, but I knew at just the act of coming to see me, despite my mother being the driver, was still a new step for him on his path to recovery, added to the fact that he is not sleeping very well at the moment. But it was lovely, despite having seen him on FaceTime! to be able to give him a big hug. They had brought me beautiful roses and my mother sweetly arranged them for me in a vase and we ate lunch.

The postman brought me a sheaf of letters, two of which were from the hospital. One was a total surprise: it was an appointment with the oncologist for next Wednesday. I was unnerved, rattled: I had been told with almost certainty that I would not get an appointment until mid September and I had been more than comfortable to wait before progressing to the next step.  By seeing the Oncologist next week, it means that my discovery of whether or not I will undergo chemotherapy will take place next week. I will also start my menopause sooner, because my systemic treatment (the hormone drug tamoxifen) will start sooner. I'd thought I had a window in which I could do nothing and was ready to absolve my responsibilities to my wellness for over a month.

But now, I face this next week.

Like I said, I was rattled, and I was already feeling down. After my dear parents left I sank into a deep sleep so I wouldn't have to think any more.. I know what everyone is saying to me, that it's better to start his earlier, to find out earlier; and to be fair as soon as I was diagnosed I faced the reality if needing chemotherapy. But now it's on the verge of happening, suddenly I don't feel so brave.

Farther Afield

God, the weather was diabolical today.

This morning I decided to accompany my SO on a business trip up North, to get me out of the house. My studio is being built in the garden and the builder likes to wander in and out of the house when he isn't drilling, so it's not the most relaxing scenario.

We travelled up the motorway with the weather worsening around us, as it seemed, every moment. Monstrously black clouds reared up out of blue skies and flung sheets of rain at us, and the tarmac was hidden in the boiling, bouncing spume of the spray. The temperature dropped steadily through the low teens and I even deployed my seat warmer. Still, the countryside North of Lancashire is dramatic enough to appreciate in any weather with its craggy outcrops and plunging, rolling farmland giving way to tantalising glimpses of the glittering Morecambe Bay to the Wesr.

The meeting was soon over and it was time to make the return journey. By this time I was starting to ache a little; feel less present. But I'm still progressing: only two paracetamol lasting the whole day (though I was pleased to get home and have some more), and this would have seemed impossible this time last week. The seroma is building up again, but I'm not afraid of having that removed now I know it doesn't hurt. In fact, like having an ear syringed, it's quite pleasant. The feeling of having the implant bouncing against an internal nipple gets stronger throughout the day!

I'm tired now. But at least I got out a little today, on very few painkillers. Very happy about that.

Normality creeps back in....

Today it was my darling K's birthday. 

 He is not at all like I am. If it was my birthday everyone would know about it. I tell people for weeks and weeks before my birthday so they are in absolutely no doubt at all by the actual day, that it is my birthday. I exact a high proportion of good wishes and congratulations and make sure that I celebrate. In contrast, my SO is very modest and quiet, and hates to be the centre of any sort of attention.

Because I have been unable to get around and about by myself over the past few weeks, I had to ask him to take me shopping to the local supermarket so that I could get him a card. "It's okay, my darling," he replied so sweetly, "You don't need to get me a card." "But I really WANT to get you a card!" I cried. And if I'm honest with myself I was a little bit pouty and huffy until he gave in and drove me to the supermarket, where there were some really lovely cards, but In the 'HAPPY BIRTHDAY TO THE ONE I LOVE' section, I've already bought him most of the range. So there was a choice between a small card with two tatty teddies hugging on a tatty hammock, OR an ornate, gilded, rococo-designed large one with fairly sterile and bland sentiments. I chose the latter. Anything is better than those bloody teddies.

This evening we actually went out for something to eat, to a well-known faux Mexican chain restaurant with stripy awnings. It's renowned for being a monstrously busy one, so when we arrived very early in the evening, and the vast car park outside was deserted, we thought we would be fortunate enough to get a table quickly, particularly on a Monday evening. Not so! Inside, the tables were heaving and we had an half-hour wait just to be seated. But it was a fun evening and I had a very indulgent cocktail (more alcohol!) and the food was tolerable.  Once again, it was all about feeling normal again, having fun and not thinking about treatment or cancer.

Fewer painkillers again today.

A baby panda keyring arrived in the post from my friend T, and I have named him Gervais.

Slowly but surely....

Things might be progressing in a good way. 

This morning is the first time that I have woken up without needing to reach for the painkillers ....although last night I took a small pebbled-beach of pills in an attempt to dull the stinging, drilling, aching and tingling sensations in my upper left quadrant.  This morning, I was even able to lie for a few moments on my left side. Before my diagnosis I would routinely sleep on my left because K lies to my right. Now, we employ a midnight do-si-do: we begin with Keith facing away from me, but when he needs to turn over, I sling my pillows down to the bottom of the bed and turn around.

My left shoulder feels ok today, and I will try to reach up a few times without straining. It shocked me that yesterday during the needle excision, I was unable to lift my left arm above my head while lying on my right.

Today I want to try and cook something. I managed to make myself a little whole grain pasta last night, with olives, tomato, courgette and feta cheese. K tidied up after me, bless him.

My hair is appalling: the very image of corn growing through tar. Although my natural hair colour is a light sandy shade, the roots are an inch and a half long and look piano-brown against the bleachen, golden strands below. After my diagnosis on June 7th, something inside me decided not to bother doing anything else to my hair on the basis that I was going to lose it anyway.  By the time I realised that this was not necessarily so for my kind of cancer - that it might be held at bay by Tamoxifen alone - I had had surgery to inspect my sentinel lymph nodes, which in turn was swiftly followed by the mastectomy and then the haematoma.

I received a beautiful card this morning from the friend of a friend, wishing me well. How lovely! People can be very surprising.

The strangest feeling

Sometimes it frightens me how much I am capable of sleeping. I barely do anything all day and yet at night ... I think it's going to take me forever to drop off, but then, it's done and before I know it the night has passed and I'm waking up in the morning. This morning we didn't wake up until 10.20. It was overcast and rainy outside...yet more disappointing weather for July, but this Summer was already washed away by circumstance, so I don't care. Not much pain in the breast - more like a discomfort and a sensitivity in the breast interior. When I move, I can feel the implant sloshing around, and sometimes it feels as if I have a sensitive internal nipple that it touches. I can't explain it, but it's a 'double' sensation, very bizarre.

To look at the reconstructed breast, which I try not to do very often because it's still not very nice to look at, gives me mixed feelings. It's a miraculous thing and I am more protective of this new breast than I thought I would be - probably because I almost lost the whole thing with the haematoma. The new nipple is the same colour as the surrounding skin on top, but is still very much a scab on the underside. Running from the nipple on the underside is a seam of scab tissue, running to the under-crease against my chest, which again, is scabbed from the armpit to the breastbone.  The breast itself feels almost numb, but underneath the surface it's a pillow of pain, sharp pain if put under pressure. One thing that has improved is that when I see acts of violence in films, the scar no longer aches and tingles. I have only had two doses of painkillers today, whereas I normally would have had three and be taking a fourth to go to bed.  The paracetamol definitely works best in tandem with codeine, but I no longer take the codeine in every dose. Another improvement is that the sharp pains I normally experience in the evening have been very far apart this evening.

I made a banana loaf today with some old bananas, honey, maple syrup and wholemeal bread. I couldn't find a British recipe giving me ingredient weights; it was all in American 'cups', so I had to guess the proportions with a little online help from Jesse, my American baking friend. It certainly looked right, but it came to eating it, we smothered it with Carnation Caramel and spoiled the whole point of me making something with no sugar! ....and this reminds me...I really must exercise soon....

Game Changer

12.50 pm Just waiting awhile before we go and see one of my specialists.  

This is the Iraqi gentleman who first told me I had breast cancer on June 7th. The second time I saw him was last week, when he gave me the results of my histology following my mastectomy the previous week. He was very positive and told me that they had managed to remove the cancer along with my left breast, and that the cancer itself was not aggressive and would respond to both progesterone and oestrogen therapy in the form of Tamoxifen.

But he also needed to find out about chemotherapy. Apparently, when you're "young" like me (I'm 48), they also recommend chemotherapy even when he cancer has been removed. They blast everything at it to try and make sure that no stray cancer cells migrated in the bloodstream to other organs. I know there are different types of chemo, but it still scares me. He'd mentioned on the visit where he'd told me I had cancer that chemotherapy would probably be required, and it would be the type that makes you lose your hair. K has seen someone go through it and it was so bad that the patient preferred to opt for an earlier death rather than face more chemo. So he feels that I should reject it. But we shall see what is said. Right now I don't want to rule anything out.

Today my scar is not as painful, thank God, but there is a worrying collection of liquid under the implant, which gives an odd sensation if I bend down; a feeling that my clothes are brushing over two nipples. This I think will have to be drained! - which again is not a thought to relish. In the meantime, the most unpleasant sensation is near the drain site and round the back and armpit, rather than in the breast itself, which feels a mix of numbness on the surface, and discomfort inside.

Update:

It was a very strange appointment with the Specialist, who basically just reiterated what he told us last week. This time however he mentioned that I won't see the Oncologist until September, because that's the earliest we can see anyone....but he felt that they may not give me chemotherapy because my cancer is small to medium and slow growing. He did warn me that I will start menopause when I start the tamoxifen, which is hardly to be relished, but still: better than cancer.

Then I asked them to look at the fluid underneath the implant which is swishing around and he agreed that it was indeed a seroma (I have had the music to 'My Sharona' echoing around my head, replacing the word 'Sharona' with 'seroma').  I was despatched to the Breast Clinic to have the liquid drawn off with a needle - it turned out to be 38ml of pinkish/straw-coloured liquid, which I was assured wasn't very much compared to what is drawn from many ladies after breast implant surgery.  It didn't hurt, but now, some hours later, the whole surgery site is feeling sore......