'If you have a dog, you will most likely outlive it; to get a dog is to open yourself to profound joy and, prospectively, to equally profound sadness.' Marjorie Garber

Sunday, 31 January 2016

Sick of January's Cancer? Part 2

So cold January carries on relentlessly. The seemingly unending month after the excitement of December. Never compromising, making us pay for the excesses of the festive season and our journey so far...

Goodbye Terry. I wasn't expecting to add you here. Honorary Brit, Sir Tel from Limerick...
Terry Wogan

I think I mentioned before, in my November post, that Hubby is in the 'trade', so after my dearest friends left us on January 14th, he explained the recent  progression of my cancer to his Brother, who has also suffered from cancer. 

I haven't told you, Blog reader, either about the December news. After my operation, but before my chemotherapy started, I had a routine CT scan of my chest. There were a few problems before the scan, because, in my usual 'nothing is ever straight forward for me' style, I had a minor reaction to the contrast dye used for my first CT scan in October. This had gone unreported from one NHS Trust to the one that was now treating me, because the former Trust had not considered it to be a serious reaction. So when I told the radiographer what had happened, he was naturally reluctant to give me the contrast in case I had a stronger reaction on my second exposure. Then followed lots of telephone discussions between the radiographer, (the technician who takes the actual scan), the radiologists, (the specialist doctors who 'read' the scan) both at my current NHS Trust and the referring one, my consultant oncologist, and my husband, (man in the 'trade'). Meanwhile, I was sat on the edge of the scan couch, swinging my legs, and contemplating my failure thus far to engage in any Christmas shopping. The radiographer asked me if I would be more comfortable waiting in the area outside the room whilst they decided my fate. So I escaped outside to the corridor to ponder whether I could have just delayed joining the Cancer train until after Christmas. It's all about the timing...

It was eventually decided to proceed with the scan without the contrast. Apparently the finer blood vessels would  not be as clear in the images but they all considered it to be sufficiently clear to see what was needed to be seen. The general consensus was that it wouldn't make any difference to my initial course of treatment if the scan revealed anything, and they weren't really expecting it to show anything sinister anyway. I lay back on the couch and let the machine do it's stuff. This was mid-November.

Following the scan, I attended my Introductory Clinic  a few days later and had my first course of Chemotherapy on 25th November. I was very nervous and convinced that I would have some kind of reaction to the drugs if my previous experiences had been anything to go by. Hubby was equally nervous and watched me like a hawk for the first hour or so. The whole course of treatment lasted seven and a half hours. I hadn't taken into account the pre-meds and the saline flushes between each drug and after the final drug. But it all passed very smoothly. I even managed a snooze and to finish reading a book that had become a millstone...

The Chemotherapy session is day one of the three week treatment cycle. So this was day one of my therapy and armed with a mountain of drugs supplied by the clinic for every conceivable home-treatable side effect, I went home expecting all sorts of awful medical problems in the days ahead.  But I was relatively free of side effects during the first chemo cycle, apart from feeling as high as a kite on the steroids for a couple of days and then coming down to earth with the shock of my hair beginning to thin. Of course, there was still the ongoing battle with trapped wind which had continued to plague me since the operation, but nothing this cycle threw at me seemed too unmanageable, with the exception of my thinning hair ~ I wasn't ready for that yet. 

Feeling lucky to have come through round one fairly unscathed, I had put all thoughts of five year survival rates out of my mind and believed I was going to be fine. I had felt fit and well, and confident that I would come out the otherside with a few scars but otherwise cured.  

I didn't get the results of November's chest scan until just before the second cycle of chemo in December. At the second pre-assessment clinic, the consultant told me the news. I wasn't expecting it at all.

The chest scan showed enlarged lymph nodes beyond my abdominal cavity, one node in particular, near my left clavicle was huge. I had first become aware of that lymph node in my first chemo session. I could feel it, about the size of a golf ball just sticking out above my collar bone. The scan also revealed I had fluid between my lungs and chest wall and several nodules on my chest wall. I also had a small amount of fluid around my heart. All things considered, it was bad news. My consultant wanted to introduce another drug, Avastin, to my therapy. I would have this drug for sixteen sessions, every three weeks, starting with the second session of my existing drugs. Avastin is the brand name, the drug name is Bevacizumab, which I have no idea how to pronounce, so I call it Avastin. This drug targets the new blood vessels that form around cancer cells and starves them of oxygen thus shrinking existing tumours and preventing cells from forming secondary tumours. He said that it meant they were no longer looking to cure me, but to contain the cancer. I would have adjuvant therapy rather than curative. If I had seven to ten years without a secondary tumour forming, he would take that and be very happy. I'm pleased that he would be happy, but I'm not sure if I have the skill to put into words how I feel to know that I am no longer being treated to be cured of cancer, but being treated to delay the inevitable. My consultant assured me that this wasn't palliative treatment - but what's in a name? The cancer will get me eventually, unless of course, something else does.
My parents were with me at the clinic. I could feel my lovely Mum's tears roll down her cheeks as though they were my own. I could see my dear Dad's heartache and anguish in his face as he struggled to take this in. I wanted to stand up and hug them both and take away their pain, and laugh: 'Don't be silly, I'm going to be fine!" But right then I couldn't. I was trying to think of the right questions to ask, and thinking why hadn't I insisted Mum and Dad stay outside and that Hubby had come instead. At least this way, I was saved one awful job - of breaking the news to them myself. When I left the consultant's room, I turned the corner to leave the Day Unit, and for the first time since my initial diagnosis, I broke down in public. Just momentarily, I lost control. And not for the first time in my life, my wonderfully strong parents rescued me.

I called Hubby from the car and relayed as much as I had taken in from the meeting with my consultant. He decided to call the consultant to get a clearer picture. I went home, and whilst my Mum and Dad had a quiet moment to themselves, I told my daughters. I tried to stick to what the consultant had told me. First Born Darling Daughter was her usual quiet contemplative self. Youngest Darling Daughter was very tearful, just as I knew she would be. My parents tried to comfort the girls but it's hard when you need comforting too. Then about an hour later, Hubby came home and gave the girls the medical talk about the diagnosis. First Born was quiet verging on angry and Youngest was distraught. When I came into the room, I could tell they thought I was dying. 'I'm not dying now, but we do all have to die one day, I just know now what will probably kill me...' Did that comfort them, I don't think so, but it was the truth.

The most painful part of Cancer for me is having to share the bad news with the ones you love...

The Penny Brohn UK
Earlier in the month, Hubby had decided to book us into an Introductory Session at the Penny Brohn UK, a Cancer charity based near to home, which offers practical, physical and spiritual support to sufferers and their carers. Unfortunately we were booked in the day after this latest news. Hubby and I went along, both full of fear and confusion about the future, and indeed, questioning how much future we had together. Emotions were raw. We shared our day with other sufferers and carers and as the day went by I certainly managed to release some of my deepest anxieties and move toward some kind of spiritual acceptance, and I think Hubby did too. But on reflection, maybe we were still finding the journey very hard.

I came home feeling drained, sad and accepting my possible fate, although full of plans of activities I would take up at Penny Brohn, one day in the 'future', when the effects of my operation had worn off. I had to pick myself up and 'get positive'. I had my second cycle of chemo the next day, with my first session of Avastin. 

The second chemo session went well. I had decided that after receiving my news, I was actually no worse off than I had been before. In fact, I was better off because I now had more information about my condition. And physically, I was fairly fit and could feel that the 'huge' lymph node in my neck had gone down a lot since the first chemo cycle. My lovely Mum sat through the whole seven and half hours with me, only nodding off once, and keeping my drinks of water topped up, and my spirits high.

Chemo Cycle 2

We were now into mid-December and my Christmas shopping still hadn't taken off. I wanted to make this Christmas 'normal' for my family. I decided to unleash my purchasing power on the internet big time, because I did't know if I would be well enough to do any instore shopping. 

The second cycle hit me heavier than the first. For the first few days, my feet were sore and my legs were shaky. I had a constant sickly sweet taste in my mouth. I fluctuated from bouts of extremely painful blocked wind and constipation to having to go to the loo several times a day. My gums became sore and I found it difficult to eat. And my hair came out in handfuls, but suddenly losing my hair seemed a small price to pay for maybe buying a bit more time with my family and friends. Perspective was looming large. Luckily, the internet purchases started to arrive and my darling daughters bought what they could for me in the shops. I was ready for Christmas.

I had never really prepared traditional Christmas lunch for Christmas Day. We had always gone to my parents, or occassionally Hubby's parents, for the day itself, and just because I was ill, I didn't want to impose myself on everyone's day by suggesting a change now. When my girls were tiny, I had started our own tradition of having 'Christmas Lunch' at home on Christmas Eve. I wanted to carry on this year.  

I ordered a goose from Abel & Cole. It was a beauty. I was so proud of myself and I think Hubby and the girls enjoyed our feast. We ate lots, we laughed lots and we were able to forget the other big 'C' of the season.

Christmas Day was spent at my Big Sister's house, (accommodating four generations of family had made the move from my Mum and Dad's home essential). Mum still cooked the turkey, but Big Sis did the veg with help from her Hubby and my Brother and his Wife. And I cooked a Gammon for the day, a fairly recent tradition that I wasn't about to abandon so easily.

With my gorgeous girls on Christmas Day, wearing my wig.

It was a lovely day. We all had fun. I wore my wig for only its second outing so far. I had to take a little snooze around about 5 ish, (two hours actually), before continuing with the festivities, but was really pleased to be well enough to enjoy the day. And I managed to only make my Mum and Dad cry briefly when they unwrapped their present.

On Boxing Day, we headed down the motorway to my Hubby's parents. His youngest Brother and his family were visiting from France and we really wanted to catch up with them. I had another enjoyable couple of days, although had a spell of feeling poorly on the second evening.

Then it was back home to wait for the end of the year. Hubby was working New Year's Eve, so my family invited themselves over to my house and brought a New Year's Feast with them. All I had to do was be here...
Now it was January, and Cancer started to claim its notable victims. Cancer is a great leveller. Whether your a pop superstar, an award-winning actor, a fabulous entertainer, a high flying CEO or a normal housewife, it treats you all the same. Unforgiving, unrelenting. I felt helpless. I was thinking about finances and bucket lists and all the things you should sort in those closing years...if I had years.

I attended my third chemo cycle. Dad came along this time too. Everything went smoothly. I felt a little worse in the days that followed, but subsequent days were easier ~ no sore gums, no painful wind, just a little dry skin, a mild nose bleed and a brief spell of diarrhoea. Only three rounds of the big drugs to go...

But do you know what...January isn't all doom and gloom.
Less than a week after Chemo 3, my dearest friends were here. They dragged me back to the now, to life and living. Remember that third scan I said I had to go to following the cinema...you remember, way back in Part 1 of my saga!
Well, I had to have a barium drink as a contrast for the scan and I would get the results on my Dad's Birthday.

The next day, my friends left and Hubby's Brother arrived. We talked Cancer a lot, but not in a depressing way. Factually and honestly, as only two sufferers can. Shared our experiences and helped lift the spirits of Hubby and the girls by being honest. Hubby's parents visited the next day too and Hubby's Brother and Hubby's Mum prepared a lovely evening meal.

On the Saturday, they all went back to their homes and we were left to count down the days to the next chemo session. 

So the Pre-assessment clinic date arrived. Hubby came with me. I think we were both frightened to ask about the scan. Gloom had been the order of the month so far this January.

The doctor asked me about my side effects and talked about the failed port-a-cath and then broke the news of the scan...

'Well, it's good news'...was I hearing things. No, it really was good news. My lungs were clear, no nodules were still visible. Most of the lymph nodes were no longer visible, except the large one near my clavicle which had shrunk considerably and may now be just chemo scar tissue. There was negligible fluid around by heart, and that may be unrelated anyway and there was a small mass in the abdomen near the site of the operation which the radiologist believed to be scar tissue. I couldn't believe it. Hubby was amazed. Did that mean I had gone down a grade or stage. Unfortunately not apparently but, hey, who cares ~ what's in a name. The treatment was / is working!

I phoned my parents from the car park - wished my Dad a 'Happy Birthday', then broke the news to him and Mum. Ecstatic. What a Birthday gift for him. It's all about the timing. We then went to visit them in the afternoon to repeat the news in person. 

Then followed a much happier, upbeat Chemo Session 4... 

Today is my Lovely Mum and Dear Dad's Wedding Anniversary. They've been together for a very long time and I am so glad I have them both so near to me, both physically and spititually. So 'Goodbye' January and your Cancer blues and bring on February ~ I'm ready for it!  

Thursday, 28 January 2016

Sick of January's Cancer? Part 1

Lately, Cancer has featured a lot in the news and press here in the UK.

The Ace of Spades

At the end of December, the sudden death of Rocker Legend Lemmy was announced.
His crowning glory 'The Ace of Spades', in the early 80s is still a classic anthem. But he also sang lead on Hawkwind's Silver Machine, prior to forming Motorhead. https://en.wikipedia.org/wiki/Lemmy 
He was such a character, a rocking icon, taken swiftly by Cancer.
In one week this month, cold hard January, we lost two more great Britons.

Genius popstar, style icon, artist, actor, writer, designer David Bowie died on January 10th, aged 69.

I can't pretend to be his greatest fan, but from the glam-rock mid 1970s, through the Punk of the late seventies and the New Romantics of the early eighties until the power dressing mid-nineties, he had a huge impact on my life. Then in 2013, David Bowie was back at the V&A in London, and I was in awe of him again. 

For most of my life, listening to his music, watching him on TV, taught me so many things ~ about life as art, about diversity, how to be cool, how to dress, how to dance, how to be a rebel and finally in 2016, how to die with grace and dignity.

I guess because of the time difference between New York and England, news arrived here of his death on January 11th. It was soon all over the internet, every radio channel played his songs, every TV station broadcast tributes. I woke that Monday morning to this mass grieving, and I too was devastated...not only had the world lost a magnificent artist, but I was reminded of my own predicament. If someone who seemed as eternal as David Bowie could be taken by Cancer, what chance did I, a failed lawyer, an unappreciated artist, an unestablished author, a weak 53 year-old housewife, have to survive it?

Beautiful Bowie  (his final photo session)

He died when I was going through the first week of my third cycle of chemotherapy. I was already low. 

The next morning, I was booked to have a port-a-cath fitted to my arm at the Oncology  Centre. A port-a-cath is a plastic bubble attached to a catheter and line which is inserted into a vein. It's designed to permit repeated access for the chemotherapy. The line is fed along the vein from the arm to the chest area, and the plastic bubble sits just below the skin on your arm, so the oncology nurses can access your venous system from there to take bloods or give chemo drugs, without having to damage veins any further. Unfortunately nothing is ever straight forward for me. The line wouldn't pass beyond my clavicle, so after five attempts in one vein and two attempts in the other, it was decided that it would be a good idea to scan the other arm to see if that side would be better. Of course, it wasn't, so the procedure was abandoned. I had two holes, three huge bruises, a very sore arm and nothing to show for it. There was a suggestion that I could have one in my chest. My initial thought at that was to get the hell out of there, but I very graciously said that I would think about it ~ how very British. My intention was to never let them near me again unless it was my only option!

Thankfully, I was looking forward to a visit later that day, from my two dearest friends. Their second visit since I had been diagnosed. They arrived in a flurry of fun and love, all the way from Kent, somewhere east of centre. Then whilst preparing our evening meal, we all sang along and laughed along to Bowie blaring out in the background, and those lovely girls reminded me why I had to survive ~ because I was a mother, wife, daughter, sister, friend who worked bloody hard at succeeding in those roles. In fact, even at the risk of sounding arrogant, I am pretty good. And do you know, they also reminded me that it's never too late to succeed at the other things ~ well, with the exception of law, which I never should have attempted in the first place!

I had such a lovely time whilst the girls were here. We went to the cinema to see 'The Danish Girl' ~ loved it and had a good cry too. We had to go to a midday showing, because I was having a CT scan in the afternoon. Going to the cinema at that time gave the whole experience a slightly surreal and decadent feel. We were cocooned in the darkness of the cinema, in the middle of the day, totally immersed in the fantasy of the film.

We then came home for a quick hat trying session to cover my balding head before we dashed off to the hospital for my appointment with reality. That evening, we went out for a fab Thai meal.

Then the next day, whilst we were still buzzing from the day before, Cancer struck again.

Alan Rickman, a wonderful actor and director, had died, aged 69. I loved him in 'Truly, Madly, Deeply', loved him in 'Robin Hood: Prince of Thieves' and just adored him, even more than I did Harry, Ron or even Hermione, in the Potter films. 

I was so sad but I couldn't allow the sadness to take hold of me because we were expecting my brother-in-law to arrive from Australia at lunchtime. We had a long leisurely lunch, talking about old times and future times. Then my dearest friends had to leave me to return to their own busy lives. As they drove off, I closed the door and had a spontaneous little cry, missing them already. Luckily, I had Hubby, First Born Darling Daughter and Hubby's Brother to keep me company so I couldn't get too sad...

Part 2 to follow shortly