Decisions, decisions, decisions in Limbo

It’s pretty hard trying to remember the feelings and experiences I was having just a few months ago. So much has happened for me this year and it took me long enough to feel sure of whether I wanted to write a blog about these things or not. Some things are too extreme a feeling to even go into as they’re happening. So I’ve needed time to process them and move on. Overall this system has worked pretty well for me so far.

Where I left you last my operation results were positive in that my cancer had not spread which came as surprise as it was aggressive therefore the doctors did not seem too sure of what treatment would be right for me. I had a million and one things on my mind, on the go, all at once. I was exhausted.

The choice was between chemotherapy then radiotherapy and 5 years of hormone therapy drugs or just radiotherapy and 5 years of drugs.

How do you even begin to make choices about your own health and treatment when you don’t have enough knowledge and you’re under a great deal of stress? I prepared questions to ask the Oncologist and tried not to worry too much. However, every story I read was about Breast Cancer returning. The women I spoke to had less aggressive cancers than mine that returned so much stronger. This may not be the case when you’re older but when you’re so young there are all the more years for it pop into your life again.

On the one hand I was afraid of treatment that could potentially leave me with more side effects without much added benefit (chemo). At 25 years old my chances of recovering completely from side effects of chemotherapy were a lot higher than they would be if I were just 10 years older. On the other hand did I want to use a less severe treatment but get it back again when it would hurt me even more a second time? Then again so many women have cancer come back even when they’ve been through the max with treatment. Some people don’t get it back again with less treatment. There are no guarantees. It’s a fact to accept that I’ll always be a little on edge.

I decided to try to get back to work, even though I was tired just walking up the stairs in the house – even if only for a couple of hours. But walking to the station in the morning I was absolutely shattered. Scared of everyone walking past me in case they would knock into my arm or worse still scared of someone bumping into my breast!  I travelled into work keeping an eye on everyone, extremely cautious of people even from a distance and on edge constantly making sure to move out of peoples’ way before they got close. By the time I got into work I was ready to lie down in a corner. I lasted an hour or so and decided to go back home. Epic fail. I’d made myself feel worse.

To top it off after successfully avoiding anyone knocking into me on the busy tube a bunch of rude girls decided to purposely push me out of the way as I stood aside to let them past near my house. I must have looked like I was scared of them mugging me so they decided to put me in my place – I’m guessing. Not being able to explain that I’d only recently had an operation and I’m extremely weak and would stand back from a toddler in the state I was in, I just walked on home pretty much knocked down in confidence. I couldn’t sleep for the night from the pain of having my operated side barged into. I didn’t try to go back into work after that day.

When the day came to meet my Oncologist I went along with my little (big) sheet of questions, ready to make an ‘informed’ decision. Bearing in mind that by this time I’d dealt with the fact that the decision was down to me, to walk into the room and face a rather cold man who asked me if I preferred mornings or afternoons for radio without even looking me in the face came as a shock to me.

Didn’t he realise I would have questions? Or could he not even imagine the situation I was in? That I was only just starting to deal with the fact that cancer is going to be somewhere on the back of my mind for the rest of my life now? That my decisions would affect my future not just my present.? I was very conscious of all of this.

“Actually I’d prepared some questions, I was under the impression you’d be guiding me today” I tried to stand my ground and get the information I’d come for. I’d had enough of everything moving out of my control all of the time.

Theoretically, I could see where the Oncologist was coming from. He showed me the statistics of how much chemotherapy would benefit me in terms of avoiding dying which is the number one medical priority of course! Whilst there would be benefits, the negatives are always deducted from this.

Chemotherapy has more possibility of affecting your fertility permanently, radiotherapy does not, and chemotherapy carries a chance of you dying from infection as well as a chance of developing Leukaemia. Once the detrimental points are deducted from the percentage of benefit in this respect the percentage of benefit was not high enough in my case for them to really push for it. In fact it was explained to me that with a hundred versions of me, if 50 had chemo and 50 didn’t only one extra person of the 50 who had chemo would be alive in comparison to the no chemo group.

I asked about the likelihood of my cancer returning with chemotherapy and without chemotherapy and he had not considered this but worked it out with me there. The chance of it returning without chemotherapy in comparison to having chemotherapy was much higher. However, he quite bluntly put this as unimportant. If I got cancer again it doesn’t mean it would be fatal they’d just give me a mastectomy (take my breast off) and treat me all over again. I felt like a complete idiot admitting that although staying alive was important I do rather like having both breasts as I got a blank stare. How could I be so petty to care about that right?

I decided to just go with the flow. Do as they said and take the worry and burden off my own shoulders. I chose radiotherapy and was given a prescription of Tamoxifen that I would need to take for 5 years. Besides I am pretty sure that positive thinking is a form of treatment in itself.

However, the oncologist’s cold attitude was then followed by more to worry and disappoint me. I had been referred for an appointment to see an expert for another treatment (not chemo or radio) this was extremely delayed and was only arranged after I phoned and begged on the phone for them to hurry up. Once I went to the hospital I was sent to (not the hospital I had originally wanted or been told I would be sent to) I was told that not only did they not do the treatment I was sent for. Even if they did I was not entitled to it as an NHS patient. It was the first time I had cried at news a doctor had given me since being told I had cancer. Off the record I was told I’d have much better treatment for this if I went privately to Turkey or Cyprus. At this stage I couldn’t believe I had been led on with something as important as my treatment. I lost faith in the team that was dealing with me.

I went back to see my GP to see if I could be referred to a new team at a new hospital. He said he’d be happy to do this and completely understood how I felt. In the meantime my sister had gone for a second opinion to an Oncologist her Professor from uni knew. He agreed with the treatment I was having (apart from one other treatment he would add due to my age). So I decided to carry on as planned and went ahead with getting tattoos done and having my radiotherapy planning appointments. I called the GP’s office and asked them not to go ahead with my referral to a new hospital. Apparently I had just stopped them in the nick of time.

Not so as within a week I heard from the hospital I had asked to be referred to. They offered me a consultation the day before I was due to start radiotherapy. This would be in two weeks. They had already even applied for my tumour and biopsy samples to be transferred over to them for their own tests. I was told these should be ready by the time of my consultation. Clearly the GP had forgotten not to fax my referral through after all.

In any case more opinions would not hurt. I worked hard on building my energy back up as I was tired of being at home with a life based only around cancer and hospital.

By this point I’d unofficially through friends of friends who were oncologists had second and third opinions all saying my treatment plan seemed fine. So I expected pretty much the same at my consultation. However, the new hospital told me that my test results were not clear enough and that one test that can help determine the likelihood of the cancer recurring and therefore help with deciding a treatment plan was not carried out at the old hospital.

They were not so sure that chemotherapy should be ruled out. Unfortunately the samples were not all sent over to them yet so they booked me in for an appointment for three weeks’ time – when I would find out what my treatment would be.

The next day, the day I was due to start radio. I called the team and told them I would not be proceeding. From that point on I was ready to go back to work and be strong. For three weeks I would carry on working happy in the knowledge that in three weeks I would find out what my treatment would be.

It was so good to be back at work. To have other things to think about and to see people again. Simple things like getting yourself dressed up to leave the house and putting some makeup make the world of difference. I looked positively to the 3 weeks wait as I was already on my tamoxifen I felt ok to delay things.

3 weeks came and I was itching to find out my treatment plan. I went along to the appointment and was told that unfortunately the old hospital had not yet sent my tumour to the new hospital so they did not have results yet. I would be called at the end of the week on Friday with results.

I didn’t show it straight away at my appointment but I was disappointed. I was looking forward to getting on with things. Friday came and no phone call seemed to be coming with it. I called the hospital repeatedly and was finally able to get through to someone who let me know it would be ready on Monday following first thing in the morning. Apparently my old hospital had only sent the samples through on Thursday.

Monday morning came and I realised they wouldn’t call me at 10.30 so I called them. They told me it should be ready by around 1pm. I was quietly despairing by now. I waited until 3pm but could feel myself ready to cry. Was I being a mug in believing them each time? Everyone thought I should argue back but I had no energy. I felt like this would go on indefinitely. Finally I called them again and still I was told it was not ready but they would call me.

My colleagues seeing the state I was in by this point called the hospital to shout at them for me. This was worse than torture. Finally the hospital started to take me seriously and by the time I got home and phoned them again (around 5.30pm) it was ready. I would not need chemo. I could finally plan radiotherapy (again)

So that’s where I am at now. On 17^th May last Thursday, 94 days after surgery, I finally started my radiotherapy.

Driving Myself Crazy

So where I left you last I was pretty drugged up and the tumour was out.  I was pretty much ok, except I couldn’t do anything. Luckily drugs are very lovely things… to an extent of course! My pain was pretty well camouflaged for some time so in my opinion, it wasn’t anywhere near as bad as the biopsies had been. I had also gotten used to sleeping upright on my back so that wasn’t upsetting me as much as I expected after my days in pain from biopsies. I was so grateful for this because honestly not being able to sleep in the position you feel comfortable in is a real pain.

The simple exercises of lifting my arms from down by my side to an upwards horizontal position, was a challenge. Paranoid that I was going to get a fat bottom from lying down so much I even tried to do some squats and lunges without moving my arms on the day after my operation. I must say that overall apart from not being able to move my arms and feeling tired I thought I looked pretty good for someone that had just had an operation.

This next bit of my story is about to get gross so if you are easily put of your food don’t read this while eating! When I left hospital I was given a few different pain killers and other drugs to take. The instructions were simply to take them all together with each meal. My sister did ask (obviously I was too high to concentrate on anything logical!) whether it would be ok to take all of these together. Nothing was said to the contrary so that was what I was taking for 2 days.

On the third day, I woke up and declared I felt a bit sick. The being sick would not stop. I became the Exorcist girl. I was sweating, shaking, going in and out of consciousness and considering I had not eaten properly in quite some time I had only stomach acid left. So was in a lot of pain. It was not pretty.

I kept trying to sleep it off and even confusingly begged my sister to hoover around me because I didn’t want to see mess when my eyes were open! However, the pain was not stopping… My sister decided to read the potential side effects of my drugs and whilst some were supposed to be taken with a meal, one was supposed to be taken on an empty stomach.

We never like to take up doctors or hospital time unnecessarily so my sister called the NHS helpline to get some advice on what to do about the green exorcist girl AKA moi that she was trying to keep a handle on. They sent a paramedic, who after coming to see me decided to call for an ambulance. Pretty soon I was carted back to hospital. Hours followed in an emergency room continuing to vomit and being in a lot of pain. Coming in and out of consciousness – not from being tired but literally from exhaustion from the pain I was suffering. Trying to have enough consciousness to ensure no one takes my blood pressure or sticks a needle in the wrong arm. Even the injection given straight into my muscles to stop me being sick was having no effect.

It’s pretty common after any operation to be sick (although I don’t know if it is to the degree I was!) but this was significant for me. Because it pretty much scared me to death of the chemotherapy I would be having. This was one day! How would I take it for weeks? Clearly I was not the strong doing squats the day after an op kinda girl I thought I was.

Although I never had any conclusion on what had made me so sick my breast care nurse thought it was most likely Norovirus caught in hospital on the day of my op. Either way after that day I recovered. I was too shaky and weak to do my exercises and panicked I would fall behind.

My phone would not stop. So I never had a chance to truly be bored or fed up of being at home. I was either in pain (I stopped taking painkillers after that day) or having visitors or trying to answer text messages.

Slowly my own day of reckoning arrived. Funnily enough with each significant appointment I’d had so far I’d always been calm on the day of waiting to be seen. When I was told I had cancer, I wasn’t nervous because I didn’t truly think that’s what I would be told. The day I had confirmation of cancer I was more anxious to finally have information on whether it was spreading, or if I would live to feel too nervous. The day I was told my third lump was not cancer, I wasn’t nervous because I was too numb with shock from worrying it was now stage 4 cancer.

This time waiting for the hour when we would go into hospital to find out whether the surgeon had been able to get a clear margin of tissue around the tumour and whether it had spread to my lymph nodes. I felt terrified.

Being as we were staying at my aunt’s house while I recovered. My mum worked nearer our own house so she took me there to wait for her to finish work therefore not losing time getting to hospital. I did my best to occupy myself watching YouTube videos until she could come back to bring me to hospital. But I had this terrible … terrified feeling.

I heard noises upstairs and got myself in a terrible state that there was an intruder in the house. Being as my arm was out of order and I was pretty weak I didn’t even have my normal courage to go and check – if there was an intruder (no matter how unlikely) they could knock me over with a feather and I’d be in agony… So I just cried to myself not knowing what to do… I ran out of the house and stood in the street for a bit. I wondered who I could call to come and check the house for me. My policeman friend? No obviously he’s working somewhere else I can’t waste police time when I know that really there is no intruder. My mum’s best friend? No I can’t call her because she will worry for me and come all the way to my house for nothing. My brother? No he is at work.

Worst of all I knew there was no intruder upstairs really and couldn’t understand why I felt so terrified. It took me a good half hour of tears and texts to my sister before I got my courage up to just face my fears and go upstairs.

Finally at hospital the results that you would really want to hear in my position were given to me. No lymph nodes were affected and the tumour was removed with completely clear margin of tissue around it meaning it had not spread any further. Yet I couldn’t enjoy the first bit of good news I’d had in weeks. The situation was that it was very unusual to have found breast cancer that was both aggressive in grade and still small without having spread. Bearing in mind that treatments are decided using statistics I was informed that there were probably only a handful of people with my particular set of circumstances around the world. So they would have to use statistics from a different age group to decide. Overall the benefit of chemotherapy was looking to be not high enough to warrant the risk. The choice would be mine. Although I would be advised on what to choose at another appointment apparently.

Knowing that the choice would be mine did not make me feel better. I began to worry that I would constantly have this feeling of anxiety for life. Physically on high alert for nothing in particular fearing every symptom as a potential recurrence. I read up stories of women getting cancer again and again. Women with a lower grade than mine eventually getting their cancer back and it spreading to other organs. I would lie in bed literally in distress shivering and not knowing why. Overwhelmed with everything I faced ahead. 5 years of hormone therapy, constant tests to check the cancer won’t be coming back… for the rest of my life now. I worried that this feeling of trauma would never leave me.

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!

Before...

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.

After

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.