Sunday, 15 April 2012

Ready, set, GO!

Once my third biopsy had taken place each day was a long struggle to remain positive and pass time until results. I tried my hardest to feel ‘ready for action’ but I felt as if I had come under attack and before I could catch my next breath I would feel a new punch. I was frozen in time just waiting…

I prepared a long list of what I would need for chemotherapy. From what I had been reading there is so much, wigs and scarves are not where it ends. Ginger and ice lollies to keep you from being sick/losing taste buds and dark nail polish to prevent your nails dropping off are just a few of the recommendations. The list was as long as my arm. I saw it as a challenge to have the least side effects. I would be so organised that nothing would surprise me!

I decided to have my hair chopped off to a bob so that when I needed chemo it wouldn’t come as a shock and I wouldn’t have to deal with cutting my hair shorter in the same week as my inevitable operation. I had been growing my hair since 2007 and it was still not as long as I desired so my trip to the hairdressers resulted in quite a shock for my hairdressers! I shut my eyes whilst they cut my hair until they’d swept away my long locks and I faked a massive smile for how ‘great’ my new bob looked. I still hate it.

The only way I could deal with all that I had to confront in the coming weeks was by handling one mini nervous breakdown at a time. I allowed myself time to be hysterical about one new issue every other day!

The first serious mini breakdown was about my fears of what effect chemo would have on my fertility. As far as I knew there is always a risk that your fertility will be permanently affected by chemotherapy.

As much as I tried to research this I could not find any information on what would happen to someone my age. It’s not just chemo I was worried about but also the drugs I would have to take called ‘Tamoxifen’ would be a part of my life for FIVE years… in which time you are not allowed to get pregnant.

Funnily enough I had not been planning to have a baby any time soon – and I am not even with anybody for that to happen. But as you can imagine you don’t want to be told that you are not allowed at all! Such a long indefinite period waiting to find out if you will be ok in the end seemed unbearable.

One night whilst I was in this waiting period for results, I rather suddenly declared to my mum that I would not be accepting ANY treatment if they cannot assure me that I’ll be able to have children at the end of it. I would rather die.

Yes I know it sounds melodramatic in the grand scheme of things but I was rather adamant that a life with no children is no life worth living so I would be good as dead and may as well go quickly! I couldn’t listen to my mum begging me to remember that I am her child and how much this would hurt her. As far as I was concerned all the people telling me my life was more important were just talking nonsense and rubbing salt into the wound. My friend who was trying to calm me down over the phone and my mum were facing deaf ears. I switched off my phone, went to bed exhausted from crying, shut my eyes and ignored my mums tears and pleading.

The next morning when I woke up to a load of distraught texts from my friend and remembered what I’d been saying to my mum I felt guilty. The night before had gotten my emotions out of my system on that subject and I no longer felt as dramatic. Whatever will be, will be. I must simply carry on and live to the best I can with whatever I am given in life. There is much I want to do still.

One of the breast cancer forums I had joined and was explaining my fears on brought me a private message with research and statistics showing that at 25 it would be highly unlikely that I would be affected at all. This was enough to put aside my fears for that time.

No ‘mini-breakdown’ was quite as bad for me after this point and that was the most serious issue to contend with in my eyes.  Fears of recurrence and spreading and life after cancer treatment, I dealt with by researching one at a time. One evening was spent worrying about each and then I left them to the back of my mind. I didn’t dwell on these for too long.

Finally the day arrived in which I would find out whether my second ‘lump’ was cancerous and whether an operation would be going ahead as the team had planned. I sat patiently in the waiting room for over 2.5 hours and when I was finally seen, like a TV audience suffering the drum roll for that bit too long to care I didn’t have any anticipation left! 

Thankfully as soon as my consultant walked through the door he was pleased to tell me it was NOT cancer. This was the first good news I had, having been resigned to the fact that any bad news was bound to be mine.

The next day, a Wednesday, the medical team would discuss who should be having operations first out of me and other women diagnosed with cancer depending on their prognosis and circumstances. It was confirmed that I would be having my operation on the Monday following.

This would consist of a wide local excision to remove the tumour from my breast along with a margin of tissue surrounding it plus a separate excision of my ‘sentinel’ lymph nodes from my armpit. These are the lymph nodes that would be the main route of any cancer that would have spread from the tumour.  If these tested positive I would need a second operation to remove all of the lymph nodes.

I am very lucky because a lot of hospitals currently do not perform this operation and so many women would have all of their lymph nodes removed for testing unnecessarily even if there has been no spreading. As our lymph nodes are very important for the functioning of our immune system this would be quite an extreme measure to take in the case of someone who has not been affected in that area.

I did my best to prepare for my operation buying comfy tops that button up and hoodies glad to getting on with things now. At my pre-op appointment one lady around my mother’s age started to complain as I went through the door to see the nurse that had called me in. “Why are you seeing her first?! I am a mother – I have three children! My blood pressure is low! I can’t take this waiting here!” she had been delayed in her appointment as she was waiting for a translator that she had not requested in advance (although clearly she knew enough English to complain about me being seen first!)

I had been given a fitness pack of exercises I was supposed to learn for after my operation to build my strength up. I had asked one woman I knew how she’d found the exercises after her operation and she told me she found them too difficult for the first 2 months. It was only the night before my operation that I decided to have a look at the routines. They involved lifting my arm up and down… This would be too difficult for me? Worrying for someone that likes to keep fit! However, no backing out or other option to hand so I would have to train my arm to go up and down again! Too bad

Early on the morning of my operation I waited patiently in my gown whilst I was still allowed to keep my sister and mum beside me. There was not enough room in the ward for them to wait for me so they would have to leave and I would have to wait by myself.

The first stage was having dye injected into my breast which would show the route to the sentinel lymph nodes. These were found with a machine that scanned my body and x marked the spot with a marker pen on my body. I was a big doodle board! I asked if they could show me what the lymph nodes looked like on the scan (they must have thought I was a bit strange in hospital that day!) they were happy to comply and seeing what my innards looked like and the exact location in the image was very interesting!

Then I was through to the ward again to await my name being called for my operation. I was sat beside the lady who complained about me being seen first at my pre-op appointment…  Whilst I read a magazine and tried to chat cheerfully with the nurses to keep myself occupied. She sobbed continuously and kept calling for the nurses to check where her possessions were. I can only say that the way you allow yourself to react to situations when they are no longer in your hands determines how you will feel and how well you will recover from negative situations. Sometimes you have to let go and give up caring. Crying would no longer do anything other than to make you a nervous wreck!

My name was called first again (mwa-ha-ha-ha!) so off I walked down the corridor following the nurse in my rather fetching green gown. When I got into the room and saw my surgeon and the team in their ‘PJs’ I tried not to listen to my nervous feeling and propped myself up in the bed preparing to soon drift off.

I had previously had a procedure under general anaesthetic  to have four teeth removed before, you can count to three and you’re asleep. So I didn’t expect to notice too much for long. They went ahead and tried to attach cannula to my hand. This wasn’t working. In fact it hurt a little as my hand was too small for the cannula and it was dragging my skin off. The vein was hiding! I would need to be put under with gas instead.

Not my kind of thing at all! I like the idea of it being done quickly without you knowing. Having to hold the mask over my own face felt like I was putting myself to sleep… I didn’t trust it. Would I wake up? I wanted to ask the surgeon but I didn’t want to look like a big wimp and drag the situation out so I just breathed in as much as I could and squished my eyes closed hoping that would do the job…

Obviously, they know what they are doing! I woke up hours later in another room with the mask on my face and slowly realised where I was. At which point I rather embarrassingly started to cry for my mum! I knew that they had made my mum and sister leave the ward and would call her when I was brought back to the ward so I thought in my drugged up state I believed that the more I whined the more likely they’d be to make the effort to call her immediately and have her ready for me as soon as I wheeled back up to the ward. I didn’t want to wait in that confused state.

Now, as a result of my lymph nodes being removed I am not supposed to put pressure on my left arm, or to risk infection for life. So things like blood pressure tests and injections have to be taken from my right arm. That is a permanent state of affairs that will never change. Yet I can say that I had keep offering my right arm, even though I was out of it, as my operated arm was being lifted each time! Not safe and also painful.

As I was wheeled back into the ward in the bed past the crying lady who was still waiting for her operation I decided to give an encouraging big thumbs up (with my good arm) and a knowing head nod… in my hilarious drugged up state I was one wise gal!

I knew mine was a day case only so I would need to ‘recover’ sufficiently before going home for the night. Now all I wanted to get out! I asked when I would be allowed to go as. I made myself sit up and they told me that once I had eaten something and shown I could get up and about I would be allowed to go. So I had a biscuit and a tuna sandwich which I declared to be the best tuna sandwich in the world… Seriously drugged up. Half an hour after I told them I was ready to go. They gave me my painkillers which were to last for 3 days and off I went on my way.

Sunday, 8 April 2012

Shock Mode

So at that point in time, I had pretty much been told I had cancer without having official confirmation. At first this left me in a terrible state of shock and as mentioned in my last post completely unable to sleep.
The effects of the anaesthetic, sleeplessness, pain from biopsies and ultimately the shock from the blow of the news had put me into the most surreal state. I cannot explain how it feels to anybody and I just hope that you never have to experience it to know.

I tried to arm myself with information in the next few days so that on the Tuesday of my appointment for biopsy results I would know exactly what to ask. Type of cancer, treatment, long term effects… dare I even consider statistics and survival rates?

However, in that time we remained confused about whether to tell people what was happening. Yes, so far it was a need to know basis, my manager, closer colleagues that would need to cover for me and mother, aunts uncles knew. I couldn’t face telling anybody when I couldn’t regulate my own thoughts and feelings just yet. By the end of that waiting period I had even managed to delude myself that I must have misheard the consultant and they were just double checking all along. This was going to be one big embarrassment when I tell everyone that does know – hey no! It was all a big misunderstanding! Silly NHS ey! No point telling anybody yet.

Yet the terror of considering the worst possibilities such spreading cancer, potentially having been there for longer then I’d known were gnawing on my insides and my mind. I spent so much time online looking up effects of cancer treatments, reading stories of survivals, recurrences. Generally I overloaded my mind with too much information. Finally one video I found on Youtube was completely different from the other sob story style videos that had been dragging me deep down with despair…

Katie Huttlestone, diagnosed at just 21 and vlogging her experience of chemo, with complete dignity and courage. Watching her definitely made me feel better and it was the first step to choosing to face this with a smile instead of with tears (for the majority of the time). I wanted to be someone that could be used as a positive story when people go through this in their own lives either themselves or a loved one.

Yet I still had so many issues to work through. I tried to deal with each fear one at a time.

1.       Death – I pretty much felt that my time was up. If not now then sooner than I’d ever thought. I worried that I didn’t have enough money to be buried and that my family would now suffer because I hadn’t been wise enough to save for a grave at 25! I watched one music video in which a girl slowly disappears and literally freaked myself out with it over and over again. This is what I felt was happening to me.

This was probably the base fear of everything for me at that point. I know people worry about chemo and hair loss etc. But I just did not care. I felt desperate to do the maximum of whatever was needed to make me better.

By the time I went for my appointment on the Tuesday following my biopsies/mammograms the confirmation of cancer was not a blow. I calmly asked for the stage of cancer and when I was told stage 1, I was incredibly relieved. Overall they were confident that for my size of tumour and stage I should be looking to be fully cured.

I still had a fair few appointments and tests to be had, starting with my MRI scan for the breast area only the following day. This was ok the only awkward thing is having the contrast dye dripped into my arm whilst I lay completely still. It feels – not painful – just awkward. Not nice as you literally feel cold liquid moving around through your veins. Nothing compared to biopsies though.

As I sat in the corridor in my gown waiting to have my MRI scan with a man sitting next to me shouting on his phone for however long it was… I noticed a small worn out looking young lady sitting in a wheelchair. I felt for her as she started to cry “I’ve been sitting here for hours but I’m not supposed to be in this corridor, I’ve been put into isolation room to avoid infection for the last few days because I am Neutropenic and they’ve put me in this corridor with everybody and forgotten me here.”

Neutropenia is simply put – when the level of certain cell in the blood is dangerously low – leaving you susceptible to fever and infection – a potentially dangerous side effect of chemotherapy. I was unnerved to see her being treated this way and completely on her own with no one to fight her cause and chase anyone up.

This was at a different hospital to the one where I had had my screening and so we quickly rushed back to our own hospital to meet my breast care nurse for a ‘cup of tea and a chat’. I felt determined to get more answers to my question this time as the day before I had only managed to find out that I was stage one and my cancer was a hormone receptive cancer. I did not want any mollycoddling and I really wanted to full frank answers about what was happening.

Unfortunately, it wasn’t as simple as the stage one I was so happy to hear the day before. Although I seemed to have found it early, the grade and stage was not the same thing – which I had not realised. My cancer was grade 2 which means they are faster growing and more aggressive (although not as much as Grade 3) invasive ductal carcinoma, and ER positive. Meaning that they were growing off of oestrogen my body was producing. This is apparently a good thing because they can take certain measures to stop the hormone causing your tumour to grow.

During this tea/chat time I was given dozens of booklets on every topic. Losing my hair, fertility, depression, lymphoma (something that can be an unwanted side effect from your operation to remove the cancer and from radiotherapy), chemotherapy, radiotherapy, hormone treatments, surgery. I was given magazines that were apparently inspiration (unfortunately the first article I opened in the magazine was about a lady dealing with her cancer having spread to her liver, lungs and finally brain – making her condition terminal! Not so uplifting I must say!)

I asked questions and seemed probably quite cheerful. I felt quite detached about it. Okay so chemo here we go. I am totally going to deal with this gracefully! The only point I did make clear was that I desperately wanted to find out what my options were and how much I might be affected in terms of chances of having children in the future. Even though it was not something I had ever given serious thought before. I had assumed it was always my option for the future sometime and I do not like the idea of having my option lost for something that I wanted to be a temporary situation.

I was told that whilst there was a chance of infertility with chemotherapy it is generally more the case for older women. As I am so young I have more chance of recovering completely than someone who is young – but closer to menopause. I felt satisfied with this but felt reassured that they would be sending me to a specialist to discuss this with me more in depth. I would be referred straight away because any treatment can potentially interfere with chemotherapy and there is a short window of time. This is one of the most annoying elements of something as serious as cancer. You suddenly have so many things to think of that you’d never considered on any serious level. Being stuck in a position where you have to consider such serious things you’d never thought of – whilst you have so much on your mind as it is not healthy…

At the end of our chat time, I felt I had a lot more information than before. I was told I would most likely need chemotherapy purely because I was so young and they wanted to give me the best chance. I had my operation procedure explained to me. I was finally told that if anything unusual came up from my MRI scan I would need to come back in. It shouldn’t be the case but they would call me if that happened. I now had to wait for my next appointment the following week to have my operation date confirmed.

I decided that although I still felt in shock and still felt in pain from the biopsies I would go back into work the next morning and continue until my operation was confirmed. This way I could prepare things for when I was ‘off’ and keep occupied as much as possible.

In the morning I aimed to travel into work before rush hour began as I couldn’t hold a pole to balance myself and was very protective of my whole breast region because of the pain I was in. In the office as the time approached 9am I noticed my phone flashing. My blood ran cold it was an ‘unknown number’…

I knew immediately that it was the hospital and what this meant. The MRI had found more. Rather embarrassingly I started to cry so picked up my phone and went straight over to the other end of the office to find the nearest woman to lean on while I had my call!

As soon as my lady colleague saw my face crying she took me into a smaller meeting room while I cried uncontrollably on the phone whilst gripping onto her for security. Poor colleague was in shock not knowing what the call was about. They asked me to come in urgently as they had arranged an appointment for more tests in an hour and a half. I cried and blurted out to my colleague that I had cancer. She was shocked. I was having a mental breakdown. I called my mum who was at her work and told her to meet me at hospital and she started to wail down the phone as well at which point my colleague began to cry.

I had to go back over to my side of the office to get my things. The office I work in is male dominated. I’ve never cried in the workplace at any job so it does say something that I didn’t care how it looked as I sobbed like a baby! Men cannot bear a crying woman I have come to realise and at that point as I sat down crying while people tried to get my things together. The men in the office rushed around me like headless chickens not sure of what to do. I can’t say I was too sure of what was happening around me at this point - I had lost a part of my mind. All I could see was this bringing my stage of cancer higher and my percentage of survival lowering rapidly. They did not want me on the tube or in a taxi by myself and so they quickly got the money together from what I gather to take me by black cab from London Bridge to Enfield in rush hour.

Thankfully one of the men in the office came along with me as he knows Enfield and to be honest – he was probably the best person to have come along with me. He managed to calm me down very well (probably another woman and I would have been a heap of tears in the back of the cab!) and I even cheered me up a little by the time we got to hospital and I was handed over to my mum and aunt both red eyed and looking worse than I did!

This time I wasn’t so helpful as I sat to have my ultrasound scan done. This wasn’t on purpose but by this point I had bruise on top of bruise from two separate occasions of biopsies. Each time the consultant reached over to place the equipment on my breast I squirmed away on the bed. I asked where the new lump was and was told “I was hoping you wouldn’t ask, there are two I’m afraid one more in the same breast and another in your right breast”. They should hopefully be nothing I was told that unless they really looked suspect in the ultrasound I would not need another biopsy. Left breast was examined and the consultant was satisfied that no biopsy was needed. Right breast was tested and unfortunately I heard the words I didn’t want to another biopsy was needed.

I squirmed about on the bed rather pathetically trying to move away from being tested even though I willed myself to stay still and have it over with. This time the position of the lump was such that I couldn’t turn my head away. I could only close my eyes and cry and wait for the pain. The anaesthetic didn’t feel like it was working this time. My mum’s tears dripped onto my face.
Afterwards I was silent. I couldn’t say anything. The ground had fallen from beneath me.