Saturday, 31 January 2015

Seventy Three

Winter has flown past and as we move into February, the first signs of spring are fighting through the sleet. The snowdrops in my garden are poking their noses up and the daffs are trying to sprout. This always happens a bit earlier in London I guess the ground is warmer.

In November I had a meeting with my surgeon and two plastic surgeons. It was to discuss the rebuild of my left nipple. The process is relatively simple. A small shape is cut into the skin and then its restitched to create a small protrusion. Not unlike origami. When this heals, the colour will be tattooed on.

Whilst there, the plastic surgeons suggested I should also have some fat redistribution. My implants have a small amount of ridging where the fat would normally fill but as I am a classic British pear shape, I don't have any upper body fat. They wanted to liposuction fat from my upper thighs and pump it back into my breasts. Once I'd got over the shock of being offered such aspirational surgery on the nhs I started to give it some proper thought.

The results are unpredictable. The fat may not take and so the procedure would probably have to be repeated. So far so good! But the whole operation is very painful. I would have to wear spankx for a minimum of six weeks to reshape my thighs whilst they healed and would be left with scarring and possible skin dimpling. After a lot of thought I've decided against it. I just don't need to put myself through it. Plus I quite like my thighs how they are.

So the date was set for the nipple construction for the end of January.

The only thing holding me back was the non-movement of my white blood cells. Still languishing somewhere only slightly above neutropenia. Quite apart form the risk of infection and the reduction of my immune system I started to really worry about WHY they weren't getting better. I asked my GP who referred me to a haematologist in September (the appointment still hasn't come though in January!). I asked my Breast Care Nurse who didn't have any concrete answers for me and neither did my surgery team. So I started taking a guilty peek on line.

I spent months worrying about the possibility of Cancer in my blood or bones causing the lazy cells and no-one was confident enough to set me straight. Finally in the beginning of January I had a blood test with a more positive result. They are on the up. The operation could go ahead and I could stop that avenue of concern.

So after a few months of absence, January brought a flurry of hospital visits. I had my arm measured (OK) Blood taken (good) swabs and preassessment, pre op consultation and then finally on Wednesday I had my left nipple rebuilt. We had a frustrating morning of waiting at the hospital whilst appointments were shuffled around leading to my Husband having to cancel a very important work trip. I was supposed to be in at 7am and out by lunch time but I was pushed, last minute to the end of the list.

Eventually it was my turn. I was drawn all over with a navy blue sharpy and it was agreed where the nipple should go. Then I was taken into theatre. Having such an involved piece of surgery under local anaesthetic is daunting to say the least. The amount of pushing and pulling is enough to turn the strongest stomach. I tried to distract myself as best I could and took in the room. Not somewhere I normally get to see.

Before applying the dressing they offered me the option to have a look and of course I did. I have to say that although it was early days and there was quite a lot of blood and stitches, it actually looked like a nipple! I have to wait another ten days for my next viewing. That night, tucked up safely in my own bed and feeling groggy as hell, It hit me that after two years and four months, I have two nipples again. Another step to feeling more complete.

I have an Oncology review next Wednesday (4th feb). This is my annual check up with the Cancer Doctors. They will prod and poke me and ask lots of questions. I will tell them that the side effects of my Tamoxifen are horrible. That some days I have so little energy that I can hardly drag myself around the house. That, on the days after I have forgotten to take it, I feel like superwoman. They will listen and nod. I know I have no choice.

Hopefully I will leave with no further investigations booked until the next review. Then on the 9th Feb I have an appointment with the surgery team to remove my dressings and check my new nipple.

That's the medical update. From a diary point of view, Christmas was lovely. We did our usual tour of the families. Each celebration was perfect. Then we went to Cornwall and spent a very special few days with my Brother and Sister and all our families. It's possibly the first time we have ever spent New Years eve all together. We talked about Dad and missed him horribly. I realise now that missing him horribly is a constant. It never goes away.

We celebrated my Granny's 90th on New Year's day in Devon and after another idyllic 24hours in Cornwall we headed back to London to prepare for School and work.

I have been doing some work. A very gentle reintroduction. My God-Mother's son has a jewellery company and I have loved helping him out with various bits and bobs. Mainly I have loved spending time with him and his beautiful lady and their little girl. I have known him his whole life and they feel like family. I couldn't have hoped for a more perfect job.

Just before Christmas I was out at a friend's birthday celebration and I met a photographer who I had met in Bali about five years ago. I told him how I'd nearly got in touch with him in the middle of my treatment to see if he'd like to photograph someone with no hair, one breast, a multitude of scars, a port and various radiotherapy burns. At points I looked like a cross between an alien and a warrior. I never had the confidence or energy to go through with it in the end. He told me he would have loved to and that I should have got in touch. Then he suggested that it wasn't too late to start.

So last week, before my operation I went to his studio and he and his lovely assistant helped me to show off some of my scars. He has taken some very striking photographs. I have only seen them on the screen of the camera. Even that was quite emotional for me. I tend to avoid looking at myself naked these days, especially in a light or at an angle that would highlight my scars. He did the opposite. Every photo was lit and posed in a way to feature the parts of me that I try to ignore.

I'm looking forward to seeing the photographs and we are going to continue to document these important steps in the reconstruction process. I'm hoping that this will help me to see my patchwork quilt of a body in a more positive way.

It's strange that I've not written for so long. Now that I've started, I have so much to say. But it's Saturday, the children are bored of me ignoring them and I need to get out and walk the dog. I won't leave it so long next time.

Thursday, 9 October 2014

Seventy Two

I wonder if anyone noticed. I didn't notice until later on. My last blog entry was the first one not to mention Cancer. I think there were a few where I didn't write about my own illness but only because I was concentrating on Dad's. Well I'm afraid this one will, but only a bit.

The girls were meant to return to school on 3rd September. The eldest was just about well enough, although skinny and pale. The holiday had done her good, lots of fresh air, good food and fun. The younger one, however, wasn't well enough. Her temperature had gone up and we recognised the same symptoms the other one had suffered four weeks before.

I took her to the GP and after a week and several further visits, she got her chest Xray. They were more shocked than I was to find that she had pneumonia. We spent a couple of days in and out of Lewisham Hospital, a bit of a logistical nightmare while my Husband was working in Spain and then America. On the third day after she was diagnosed her joints started to swell up. Knees, hands, feet. Back in we went. We spent a whole night having tests, every test under the sun, to make sure they hadn't missed anything. Her blood test for glandular fever came back positive and her joint pain was attributed to Reactive Arthritis.

The Glandular fever diagnosis actually answered some of my questions. The paediatrician suggested that if Daughter number one had had it first, it would explain where both sets of pneumonia had come from. Another week's plans were cancelled.

Eventually she was well enough to return to school, although even now, in October, neither girl is 100% recovered.

On Wednesday 17th September I found a small lump on the edge of my right breast. It was just under the skin and next to the edge of the implant. It was sore and hot and a little red. I emailed my Breast Care Nurse. I didn't email my surgeon having got into trouble with him before. I had emailed a picture of the swelling under one breast thinking that it was a very clever way of explaining the problem. Apparently he opened his email while in a meeting and up popped a picture of my tit! Ooops.

My Breast Care Nurse finally got back to me with an appointment for a scan on the Monday. I appreciate that this is extremely quick and am in no way complaining, but it meant waiting the weekend before finding out what it was. As I have said before, I am inpatient. But it's not just that, the worry is very real. If I am diagnosed with secondary cancer, it will be considered to be terminal. I, of course, wouldn't take much notice of that and would hope to fight. These are the sort of thoughts that I can normally keep at bay but waiting for a scan on a lump can sure bring them to the surface.

That weekend I had the best distraction. Fifteen of us local Mums had rented a big house in Sussex for a weekend of fun, frolics and hilarity. There was an indoor pool, hot tub, dance floor (actually was the sitting room floor but made of wood and a huge room), pool table, tennis court, ping pong and masses of prosecco!

As I've mentioned before, I am trying to eliminate alcohol from my diet completely. It messes with your hormones which is something I cannot risk. But, I am only human and occasionally I break my own resolve. I broke it that weekend. It was great fun, so lovely to see my friend's personalities flourish in a new environment and not having to behave in front of our children! It was very annoying though, to have the nagging worry in the back of my mind.

Monday came and I went in for my scan. I spoke to my surgeon first and then had another appointment with him straight afterwards. My scan was clear. Both implants are fully intact and where they should be. The lump is a swollen internal stitch where the muscle joins onto the mesh hammock that holds the implant in place.

I left the hospital on my own and had to sit for a while in the park nearby. I choked back the tears as I let myself feel the relief wash over me. The alternative result is just too awful to imagine.

Tuesday, 23 September 2014

Seventy One

I'm at home today. All day. Whilst Harry the boiler man rips my kitchen apart and attacks my ancient (not in a good, retro or vintage way just old and knackered) central heating system. There seems to be a lot of 'hitting things hard with a hammer' going on.

Daughter number one recovered quickly once she had the right antibiotics. She eased into her week at Theatre school in Tunbridge Wells with a couple of half days before managing to stay for the full stretch. The week culminated in the production of 'Wind in the Willows'  in the Trinity Theatre on the Friday. My husband celebrated the day with a nasty skateboarding accident. I refused to spend another minute in the hospital there and dropped him at A&E. I couldn't leave fast enough.

I collected him hours later, just in time for the show, with a fractured wrist and a pair of crutches (a painful combination) Luckily the fractured bone was one of the little ones so he didn't need a cast. The show was fantastic and we were very proud parents.

On the 20th August we collected our caravan from Kent and headed to Shambala Festival. This wasn't a last minute thing. We had been looking forward to it all summer. We were working with our Glastonbury family. Work is 'Daemon or Doppleganger'. An art project set up by a close family friend ten years ago. She tours the summer festivals with a marquee and many tonnes of red potters clay.

Revellers are invited to create whatever takes their fancy out of a fist sized piece of clay. She collects them up at the end of the festival and carefully transports them home to Frome where they get fired over the winter. Only the strong survive the journey and the firing process. Over time she has built up a collection of 4+tonnes (she'll correct me if I've got this wrong) of little clay people. They are stored on site, in their own area, at Worthy Farm, Glastonbury.

The more impressive figures get taken on tour the following year and the rest are gathered to make a mini clay festival, complete with mini pyramid stage and little long-drop toilets, in Bella's field. It is truly lovely work. A shift consists of a couple of hours (depending on how many people there are to rotate) meeting people, telling them about the project, handing them clay and a board to work on and watching what they come up with.

People absolutely love it. It is free and there is no suggested time limit. There are no boundary's and no guidelines. I've met people who have come back year after year to make another model. At the end of each day the artists can come back and collect their work to take home if they'd rather. It's a joyous way to spend a couple of hours a day and it comes with significant perks. At Shambala we were camped behind the Marquee in the craft area. Slap bang in the middle of the calm part of the festival. In our caravan, with our friends. It makes the whole experience do-able with kids and even boarders on Luxurious which is not something you'd normally associate with UK summer music festivals.

On the Saturday evening, after we'd closed the front of the marquee (work finishes at 6pm), we set up a table and chairs, table cloths, candles and fairy lights and had a dinner party for My eldest daughter's tenth birthday. My Brother and his lady were there too and it was such a lovely meal. Shambala festival is very beautiful. Small but big enough to be fun. Plenty of kids but lots of attractions for the grown ups after dark. Our girls enjoyed a little bit of freedom and were allowed to explore together for pre-agreed periods of time.

On Monday 25th we took down the Marquee and packed up the caravan (in the rain - not so luxurious!) and drove to Dover where we stayed overnight in a sweet campsite, Did our washing, scrubbed the kids, cleaned the caravan and regrouped. On Tuesday morning we set sail for five days in France.

We were supposed to be heading for Cornwall to spend time with Footsbarn who spent the summer touring the UK, but at the last minute had been called away by the never ending saga of sorting out My Dad's legacy. His hate for paperwork will continue to haunt me for years and it's trail reaches far and wide!

We camped beside the river in Herisson. A stunning medieval village in the centre of France. The weather was gorgeous. We caught up with many friends (Footsbarn are based there so we have a long-term connection with the area). It was a short, sweet break and we were sad to head home again.

Thursday, 11 September 2014


So much has happened. I'm overwhelmed by my own news! What a wonderful position to be in. I often wonder if I'm bored, or if I lead a boring life but faced with the job of writing down all that's been going on in the last couple of months I realise I'm actually quite active!

Glastonbury was a blast. The kids were suitably surprised and excited. My sister and her family went and we all camped in the crew camping area with our Glastonbury family. A circle of eight caravans around lush green grass with tables and chairs and toys for all the kids. A lovely camping holiday in the middle of the biggest festival in the world!

The girls spent 5 days in utter wonderment. They quickly adapted their outfits to suit the festival style and requested ever more elaborate glitterwork and dresses under waterproofs. We caught some of their idols, Lana Del Rey, Lily Allen and Ellie Goulding and also managed to drag them to see bands we were more interested in too.

We all talked about Dad a lot, last year's Glastonbury with him being so fresh in our minds, reminders of him were everywhere.

I worked very hard not to become exhausted. At times annoyed by my own limitations but in some ways finding it easier having the girls there to match myself to. Having said that, the security of such a tight family camp gave us the opportunity to put the girls to bed and venture out again into the night.

We arrived home on the Monday night, had a good sleep and went straight into hospital on Tuesday morning.

My mastectomy and reconstruction went well. I had both breasts rebuilt using implants and internal scar tissue under my left arm reduced. I had a steady stream of visitors and was back out in record time (2 or 3 days I think). Unfortunately due to the complexity of the operation I had to carry around not one but three drains (blood bottles!) for the next couple of weeks.

I spent about two weeks in the house recovering but felt better so much more quickly than I had after my first mastectomy. I can only assume this is because I am not ill this time. I had to visit the hospital almost daily so they could keep an eye on the drains and the healing process. Doing this from home was so much easier than from Kent.

On the 18th July we went to Hythe to spend a couple of days beside the sea, a generous gift from My Husband's aunt. We visited family and friends whilst there and I watched in envy as my family swam in the sea.

The week of the 21st July I was feeling much better. Still not allowed to drive/swim/exercise but getting around well and in much less pain. at the end of the week we were offered last minute tickets to The Secret Garden Party. A smaller music festival in Cambridgeshire. My Sister's fella was playing there with his band and had some un-allocated artists passes.

I went to hospital on Friday morning for a check up and asked my surgeon what he thought about me gallivanting off to a festival for the weekend during my recovery period. He said that my recent surgery was supposed to be enriching my life, not holding me back and that I should go for it but be sensible.

We threw the kids and the tent in the car and off we went!

August came quickly and the children were off school I was surprised to be well enough to do most things with them. I hadn't booked anything in for the first few weeks, Imagining that I would be stuck at home recovering. I amazed myself and was able to keep up with the girls.

Having them at home with me gave me the distraction I needed to help me lift myself from the depression that had begun to set in. I don't really feel able to write about it but had been very low. I am still struggling with this but I am very much better than I had been for a few months.

We decided on a whim to get the train to Exmouth to stay with my Granny. A plan that backfired when Daughter number one developed pnuemonia, finally ending up in Hospital on IV antibiotics. Ironically we had returned from Devon to My Mother-in-law's in Kent when she was finally diagnosed (after multiple trips to the doctors). I spent another night in my (not) favourite hospital where I have spent so much time over the past couple of years first myself and then with Dad. This time they did a good job and after 24 hours she was allowed home, well on the road to recovery.


Secret Garden Party

Wednesday, 18 June 2014

Sixty Nine

So today I am stuck on the sofa with my foot in the air! A bit of enforced rest is actually a good thing for me. I am making the most of it and writing lists, internet shopping and making plans. It started two days ago, my left foot felt stiff and crampy all day. I put it down to my new sandals (I still think they might have been the culprit) but they are from Clarks and are very comfortable...

Anyway, when I woke up yesterday morning I could hardly walk. The base or sole of my foot is swollen and it feels like walking on a painful cushion. The ligaments up the middle of the underneath of my foot are really tender and the top of my foot looks strange too, like the skin is tight.

I went to the Doctor to make sure there was no infection. She thought it looked like a bad sprain and gave me Ibuprofen gel to put on it. I'm also to keep an eye on my temperature and had to have a blood test for good measure. I'm surprised I have any blood left after the last few weeks!

On Monday 9th I went to the breast clinic at Guys to have a planning meeting with my surgeon. All was going well until I mentioned my recent dramas with the white blood cells. He immediately closed my file; looked at me and said that he didn’t think he could go ahead. He thought I would be too much at risk of infection.

I understand the risk and would never push for an operation if there was a risk but at the same time felt very upset and annoyed. If not now, then when? It's taken over a year for my bloods to recover half a point, how long until they are normal?? My surgeon emailed the oncologists and haematologists for advice. I'd have to wait and see.

So I felt pretty let down by my body again. This is something I struggle with constantly. I have looked after myself and made massive sacrifices in the name of health and it doesn’t seem fair that I continue to not be well enough to do things. On the other hand I suppose I'm lucky to be alive and have to keep reminding myself that.

On Tuesday I found out that there was a problem with our remortgage because of a late payment last September. This had endless knock on effects that we had never even considered (not that we meant the payment to be late).

On Wednesday I spent the whole day in Hospital having my pre-op assessment. I'd been told to go ahead even though there was little chance of actually having the operation. It felt like a waste of time and energy.

By Thursday I was rock bottom, struggling with banks, missing Dad terribly, hating my useless body. Wanting to get disgustingly drunk! I had a depressing session with my counsellor which didn’t much help. Then I had a brilliant session with my Personal Trainer which did help. I am finally getting noticeably stronger (ignore my blood count).

On Saturday night we went to a friend's house to watch the Football and the host and I amused ourselves greatly with a silly joke about Italian food. I think we drove the other guests mad but I laughed so hard I couldn’t breathe. That's the first time that's happened in over two years and it felt good.

So far this week the school have authorised at least one of the children's upcoming absences (more about that in a minute), the mortgage application is progressing and I've been told that I will be going ahead with surgery on the 2nd. If it wasn’t for my foot, I'd be having a very good week!

So, back to the girls. Next week is Glastonbury; you know how important that is to me. This year we have decided to take the girls for the first time. This is a secret (they don't know yet). It has added a whole new level of organisation, packing and preparation but it's also added a new level of excitement.

We are going on Wednesday and will be back in London on Tuesday 1st, just in time for my operation on the 2nd! Needless to say, for one reason or another I will be having a very well behaved festival!!

Tuesday, 3 June 2014

A bit of bloggy housekeeping.

I'm not sure If I'll carry on announcing new entries on Facebook. If you are a reader of my blog, I think you should 'follow' it so you get an email to tell you when I've updated....(does this even happen? - perhaps you could let me know if you are a 'follower' whether it lets you know when I post??)

Sixty Eight

My Oncology appointment came through on Wednesday 28th May. Slap bang in the middle of half term. I didn't want the kids to come and the car had broken down on the Tuesday so they went to Kent on the train with my Husband who just happened to be working in Tunbridge Wells for the evening.

I have realised that I feel extremely at home at Guys. And safe. Unfortunately the same can't be said for the hospital in Pembury who tried to kill me and then later diagnosed Dad. So it's not a hospital thing, maybe just a London hospital thing. Anyway, I felt safe on Wednesday when I went in.

It's been a while since I've had to sit in the big cancer waiting room and it still astounds me how many people there are who are suffering from this terrible illness. It doesn't matter how many times we are told that one in three of us will get cancer, it takes actually going to that waiting room to really drive the reality home, and that's just one waiting room, in one hospital, on one day, in one town......

My Husband joined me. I was weighed and booked in and finally called by the Oncologist. The outcome is very positive. We looked back over all the blood test results since my chemo stopped. The Hospital have a lot more results than my GP and could get a much clearer picture. My White Blood Cells (WBC) have been consistently low. In fact, if anything they are (very, very slightly) higher than they were in October or January.

This, however strange it sounds, is fantastic news. It means there has been no sudden drop. It also means that I have been coping well considering and may even start to feel a bit better as and when they rise. The Oncologist will pass my results to a Haematologist and ask for advice. It is not usual for the blood count to still look this weak so long after chemo and she wants to know if there's anything I should be taking to boost them.

So, it doesn't look like it's a side effect of the Tamoxifen which is great as I'm prescribed another nine years of it and it is a wonderful drug in prevention of return of breast cancer. And most importantly, it is not an indication of cancer in my bones or blood.

I had a call from Guys yesterday, my blood test result from Wednesday is back and there is little change. This reinforces everything I was told.

So, looking forward. I have been booked in on the 2nd July for some major surgery. I am having a full mastectomy on the right. This is preventative. I asked to have both breasts removed when I was diagnosed but due to the aggressiveness of the cancer and the fact that it had already spread I was rushed into the first available surgery slot which was only four hours, not long enough for both breasts.

I will have full reconstruction on the right and a new reconstruction on the left. The implant on the left has been damaged by the radiotherapy and will be replaced. The operation will take about eight hours. I've been waiting for this for nearly two years. Keeping my right breast felt like a ticking time bomb. I had to wait a year for the internal scarring from the radiotherapy to be sufficiently healed before they could go ahead.

Now that the operation is so close I am scared. I know that it is a bigger operation than last time and having experienced that pain once and the prolonged recovery, I am once bitten twice shy.  I am a less strong person these days. I can't imagine how I got through the process of diagnosis and treatment. I realise now how important it was to me to have my Dad there by my side through the whole experience.

I have also had a year of relative good health which has made the thought of amputating perfectly healthy tissue seem crazy. Plus it's my breast, my only remaining breast. However good the surgeons can make the reconstruction look, it's still just a lump of plastic stuck on your front.

But, first and foremost I am a Mother. I must do everything I can to protect myself from illness for my children's sake and if removing my right breast removes any risk at all, no matter how small, I will do it. So, the date is set. I am getting fit and strong in preparation. I am looking to the future with hope. I am keeping a healthy diet and keeping up my abstinence from booze (for the most part) and I am trying really hard to be, think, stay and feel positive!

Remind me next time to tell you about the fire we had in the kitchen!!!!