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.