Seventy

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.


Glastonbury

Secret Garden Party

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!!

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!!!!

Sixty Seven

Dad died on the 21st March. I cannot write about it now. It has taken nearly two months for the tears to properly come and now they won't stop.

On 27th December I was in a nasty car crash. I had just dropped Mum home and was returning to Mother-in-law's house. As I was making a right turn, a taxi driver sped into the driver's side of my car. The impact was terrifying.

So much has happened since, that I have managed to forget most of the fear and upset and can now hopefully give you a quick version of events. A young lady appeared in the passenger side of my car and said she'd seen the other driver speeding in the previous village. Another lady had seen him jump the lights and drive into me and between them they swapped details. I was in pain, neck, back, shoulder, leg.
An ambulance arrived and I wasn't allowed to move. It took over three hours to cut me out of the car and take me to hospital. I was strapped to a board and put in an inflatable full body splint.
Finally after multiple xrays and some heavy pain relief I was allowed to leave in the early hours of the morning.

I have been treated for whiplash and my treatment for that and the rest of the soft tissue damage is ongoing. I am also attending counselling sessions prescribed by the NHS to try and deal with the last couple of years. The insurance company have assessed me and recommend a further 8 months of treatment and have requested a psychological examination to assess the damage the crash has done to my mental health.

I'm still driving, obviously had the fun task of finding another car. I drove over 2000 miles in 4 weeks during February and March, backwards and forwards from Dad. I still think someone is going to drive into me at junctions and I am a more nervous driver now than I was before. But compared to everything else, the crash was a minor hiccup.

The other driver has been prosecuted and has been on a safe driving course which he had to pay for.

Dad's illness and death has been all encompassing, because I don't feel ready or in the mood to write about it, it's left me very little to write about which is why it's taken me so long to get back on the keyboard. I thought today that I would just give myself an hour and see what comes.

I guess this has been a blog about my health so I will carry on with that.

I've been trucking along, not really with any time to consider how I was feeling physically. I have had periods of intense frustration at my lack of physical strength , especially my left arm and my stamina. I get tired very easily and by the time the children are in bed I'm often on my knees. I started to feel very dizzy but none of us was eating or sleeping properly so I put it down to that and the emotional stress of Dad being so unwell.

I finally went to the doctor after Dad's funeral. I couldn't ignore the fact that I felt so faint so frequently. My blood pressure is very low. This is normal for me but it's extremely low at the moment. There is probably no reason for this and there isn't really anything that can be done about it. I am trying to get as fit as I can to counteract the effects.

The doctor also took some bloods to check my iron levels. I had a call a week later on Thursday 8th May saying that my iron levels looked fine but they had incidentally found that my white blood cell (neutrophil) count was very low and could I come in immediately for another blood test.

I went in on the Friday morning and had another test. There are very few things that can effect your white blood cells, especially over periods of time as our body replaces them constantly. Drugs can do it and did for me when I was on chemo. (but I finished that over a year ago) Other than that, there's AIDS, Leukaemia or Blood Cancer. I know I don't have AIDS and tried not to worry about the other possibilities. It was a hard weekend.

On the Monday I couldn't take it any more and went to see the GP for reassurance. My results were already back from the second test and unfortunately hadn't changed. They are at 1.3 (normal range would be somewhere from 4 to 11). Under 1 is considered neutropaenic and I would have to be in hospital or at least in quarantine. The GP thinks its a side effect of my Tamoxifen and they will keep a close eye on it.

I felt elated and buzzed through the week. On Thursday I emailed my breast care nurse at Guys the good news (I'd texted her at the weekend fearing the worst). Last Friday I received an email back from her. It said that low WBC count is a very rare side effect of Tamoxifen. She is arranging an appointment with an oncologist. Another weekend of worry.

Yesterday I called her for a chat, and to chase the oncology appointment. She thinks the low WBC are as a result of the chemotherapy last year. This isn't a common occurrence but it does sometimes happen. The bone marrow gets such a hammering that it can, in rare cases take a very long time to recover. I guess this is what I'm hoping for.

So I suppose I'm a bit in limbo. I'm hoping the appointment will come through quickly but it can take time. I think next Wednesday would be the first possible time so fingers crossed it will be then. In the mean time I'll carry on painting the house and trying not to worry. (and thinking of fun, positive and optimistic things to write about in my blog!)

Sixty Six

I was trotting along, settling in, getting used to things and then BANG! Everything changed. Almost overnight.

On Sunday 10th December I had a conversation with my dad on the phone. I hadn't spoken to him for a while, he had been working and is always terrible at keeping in touch when he's got a long job on. I knew he hadn't been well. My husband had seen him the weekend before and was worried about him. Thought he was completely exhausted. The phone conversation threw me into a flat spin. He not only sounded confused and slightly slurred but admitted to having problems spelling simple words and remembering things.

The next morning I dropped the kids at school and drove straight to Kent to see him. He was unable to work and struggling at home with simple tasks. I thought maybe he'd had a stroke. We spoke to his Doctor on the phone and made an appointment for the next day. I returned home. Tuesday morning I dropped the kids at school and drove back to Kent. We went to the Doctor and explained the problems he'd been having. She examined him thoroughly and gave him antibiotics for a chest infection. She made a request for an urgent referral to a Neurologist and suggested possible mini strokes, a nervous breakdown or potentially something putting pressure on part of his brain.

I drove back to London and was replaced by my Sister who raced up from Cornwall on the train. She has taken over my role as big Sister and has been truly amazing. My Brother was there too and on the Wednesday My Dad's lovely Girlfriend returned from London where she had been working for the beginning of the week (she normally spends Monday-Wednesday in town). They muddled through and although he was happy and relaxed having them all there taking care of him, the symptoms kept returning.

On Friday afternoon my Sister phoned to say he'd had some sort of fit. She thought it was a stroke so she called an ambulance. We dropped the girls with friends and drove back down. He had to endure a whole heap of tests including a chest xray which showed lesions on his right lung. A CT scan showing a mass and some fluid on his brain and a series of questions and tests to ascertain his levels of confusion and co-ordination. He was cheerful throughout and it sounded like there was a party coming from his cubicle in A&E.

He spent the weekend holding court in his own private room. A constant stream of visitors. He also had further scans and an MRI. He was given steroids which immediately returned his marbles. He looked rested and we all felt much more positive.

On Monday 16th I drove back down to Kent to take my Mum out for her Birthday lunch and pop in on Dad. On our way out we got a call from Dad, he was upset. We drove straight to the Hospital. He had been given his diagnosis. Mum didn't get her Birthday lunch.

My Dad has been diagnosed with terminal lung cancer. He has a tumour in the bottom of his right lung. It has spread, via his lymphatic system to his brain where he has two tumours and to his adrenal gland which is on his right, just above his kidney.

I can't even begin to put into words, the emotional effect of this news on us all. I can't even start to try. I can only tell you the facts right now and hope that in doing so I can somehow lessen the constant sickness in my stomach.

So, we have been coping. Pulling together. On Tuesday 17th his Sister arrived from Canada, on her Birthday. Herself a cancer survivor. They let Dad go home and my Sister finally headed back to Cornwall to try and prepare for Christmas. My Brother stopped working to spend as much time as possible helping out. I drove backwards and forwards.

We are still in shock. Unfortunately it does nothing to mask the pain. We move forwards, we smile for the kids. I've cried a bit, not enough, still terrified to really let go. Not one of us can sleep properly. I have prayed, broken down in the street and laughed and loved with my family.

If this is a test, I'm not convinced we can pass it. It's becoming more and more difficult to stay buoyant, stay positive. The rational me is taking a battering.

Dad is doing well. He feels surrounded by Love. He has a wonderful woman. He feels he's had a great life. Today he had some really good news. He had a meeting with the Oncologists who have prescribed a course of Radiotherapy on his brain. They would like to try to shrink the tumours down sufficiently to stop the steroids. This will start urgently, as soon as they have a machine spare. We are hoping for a cancellation.

They are going to take a biopsy of his chest and when they have his brain cancer under control they are going to give him Chemotherapy to treat the rest. This will buy him time. How much time, no one can say. He is thrilled with this news. Happy that they think it's worth his while. When I'm with him, the pain goes away a bit. The rest of the time, it's almost too much to bear. It was so much easier when it was all about me. But it's not now and Cancer was one experience I didn't want to share.

Sixty Five

The wind is howling outside. I'm in bed with all my clothes on. Because I've written so much of my blog in bed, it seems to be the only place I feel comfortable doing it. That and the fact that the house is cold and if I sit still for an hour I will freeze! Our bed is at the top of the house, in what used to be the attic. We had it converted when we were told we needed a whole new roof. In for a penny and all that. Unfortunately because I was so heavily pregnant at the time and didn't keep nearly as close an eye on the build as I should have done, you really do feel out in the elements. Today I can feel the house being buffeted and hear the wind outside. When it rains, it sounds like someone is dropping pebbles on the roof just above our heads. In the summer it gets so hot we have to sleep with all the windows open. Basically it's like living in a caravan on the top of our house. That's probably why I love it so much.

It's beginning to feel a lot like Christmas. The girls have written their lists, I have tried my best to make sure they're not too disappointed. The house is getting festive (more so when I finally get round to buying a tree) and you can't leave the house without falling into a local Christmas gathering. I'm super chuffed to be in more of a position to enjoy it than last year, it's hard to go back and think about the lead up to that Christmas. The children have assured me that this will be the best Christmas ever.

On the weekend of 23rd November we drove to the Cotswolds. One of the twins lives there with his glamorous, brilliant, ever-busy wife and three kids. We walked and cooked and caught up and prepared for their first dinner party in the house with local friends they have met since moving there. It was a freezing cold night and the house was steaming hot with all the open fires blazing. The food was delicious and the company friendly and fun. I did fall slightly off the wagon but tried not to regret it too much in the morning as it had been such fun.

We took our hangovers, the next day, to the pub. Where all good hangovers should go. We managed to meet up with some dear friends who we haven't seen for ages and all go for a good Cotswolds stomp together.

This not-drinking thing gets very hard at this time of year. In fact it was pretty hard in the summer too - no long gin and tonics in Ibiza town.... no cold pints on hot days... But I find it harder around Christmas. All that lovely spicy warm booze laced with sugar. That's a big fat no on both counts. Red wine by the fire. No.Warm apple juice with Bison grass vodka. No. Single malt whiskey at the end of a meal. No (well actually yes, this is still a weakness I'm yet to control).

Aaarrrgghhhh! Flipping laptop keeps crashing! I'm now typing on the iPad. This will be the third lesson. I've been wondering what it would be. The third lesson in backing things up. These lessons always come in threes to make sure you have truly learned them. Firstly the blog, then I lost my phone in the Cotswolds whilst having a wee behind a stone wall on a walk and now my laptop. Great.

Where was I? Ah yes Drinking. Now, Ive never been a huge booze hound but I do like a tipple especially when combined with a dance or a giggle. I tend not to be able to drink to massive excess because I throw up or pass out before that happens but I  like to drink in moderation. I've been informed that this has to stop.

During a meeting with a nutritionist I asked about drinking, previously I have been told that if I want to enjoy a glass of wine with dinner then that's fine. This lady told me that because my cancer was hormone reactive I cannot risk drinking at all. Alcohol effects your oestrogen levels and this could kick start growth in any remaining cancer cells. Alcohol also contains stupid amounts of sugar which cancer cells feed on. I asked the 'just one glass a week with food?' question and she said that if I absolutely had to I should have half a glass and really enjoy it and make it last all night!

Seeing as I'm not a huge fan of wine and I don't think she meant half a glass of vodka or whiskey I've been pretty dry for quite some time now.  I have asked my Husband to stop offering me a drink when he has one and to stop pouring me a glass on the off chance. This has made it easier at home but it's still hard when we go out. If there is dancing involved I can be distracted but sit down dinners are definitely my Achilles heel. Not to mention 'Christmas drinkies'. Please don't stop inviting me though, I promise not to become a horrendous bore!

What it boils down to is giving my self the best possible shot at survival. I have five years to get through before we know whether the cancer has all gone. This five years is just about to start. I cannot risk the guilt of knowing I could have done more if the cancer comes back. So another clean Christmas for me.

Now, onto treatment. I had my Herceptin on Tuesday. I am thrilled to announce that I only have one dose left and unfortunately that will be on Christmas eve. I am very excited about having the port in my chest removed as it has become more uncomfortable as I lost weight. January will be a new beginning of sorts. Then I have the 1825 day countdown to the day that I will be officially in remission and cancer free.