Things like this will never happen to me……
Isn’t that what we all think when we hear of someone having been diagnosed with a life-changing illness? We are all invincible, aren’t we?
Unfortunately for me, this was not the case. In September 2014, 4 weeks after a major surgery, I was diagnosed with having had a rare type of tumour, a pseudo papillary tumour of the pancreas. The good news was that, although malignant, these are not aggressive (not fast growing), and have a favourable outcome. According to the laboratory reports I had had this tumour growing inside of me for over 6 years!
The first time I realised something was wrong was in February 2011. At that time, it was just severe abdominal pain and subsequent loss of appetite, which would last for a week associated with significant weight loss of approximately 5kg. These episodes would occur maybe once every 3 months. I would visit the GP, who would prescribe a week’s dose of medications to treat gastroesophageal reflux and I would feel better and get on with life.
By the following year my symptoms had worsened. I was unable to move with the amount of pain I was in, and I felt tired all the time. Once again, I went to see my GP and at this time I was told that I was severely depressed and was asked if I would like to be prescribed some anti-depressants. I knew I was not depressed and therefore refused to accept this. I was also very annoyed with the doctor as I felt that she had completely glossed over the fact that I was in agony. I have since learned that pancreatic disease can present as depression and this was a logical hypothesis made by the GP considering I was otherwise fit and healthy.
My symptoms still had not resolved a year later and in fact the pain had intensified. However, by this point I was refusing to go to the GP because I was still quite annoyed and felt as though my concerns had been ignored by the doctors over the last couple of years. I also had a myriad of symptoms that I could not pin point exactly and did not feel like I could go to the GP without specific symptoms. I was scared that they might consider me to be a time waster and not take me seriously. I let it pass and carried on as normal.
During this time I was just completing my MSc and was under a lot of pressure trying to complete my dissertation and was working 12 hour days for 4 days of the week. I ignored the tiredness and lethargy I was feeling then and just put it down to the stress of the MSc and long work days. I had also started to put weight on rapidly: I went from a dress size 8/10 to 12/14 within the space of months. Again, I put that down to stress and convinced myself that I had poor eating habits. What else could it be?
By the time I had completed my research in September 2013, my symptoms had progressively worsened. I knew something was not right and even said to my husband, Rupen, that I thought I had cancer. At this stage I was experiencing severe abdominal pain, right sided upper back pain, shortness of breath, feeling full after eating small amounts of food, further weight gain, nausea and vomiting first thing every morning. However, as I had been repeatedly palmed off by my GP I refused to seek medical advice. Part of me also didn’t want to accept that something was wrong and didn’t want to deal with the alternatives.
It won’t happen to me……
By February 2014 I felt downright desperate and I went and had allergy tests done privately. I was told I was intolerant to dairy, eggs, all animal products, oranges and cocoa. ’Great,’ I thought, ‘this will help me lose all that weight I’ve put on!’ I gave up all these foods and certainly felt better. However, this was short lived.
I was very excited in 2014 as my cousin had announced that she was getting married in July. There was a lot to do and plan, starting with the hen weekend away on the second May bank holiday. The weekend finally arrived and on the first day, after the first activity, I was drained! How would I get through the rest of the day, let alone the rest of the weekend? Eventually, I asked my cousin and a friend to look at my abdomen and they both suggested I should go and see my GP first thing after the bank holiday. I remember at that time thinking, ‘OMG, this has just gotten very very real!’ I panicked a little and went for a walk. I called Rupen and asked him to clear his Tuesday morning at work because I needed him to come to the GP with me so that I would be taken seriously.
3rd of June 2014, the Tuesday after the bank holiday, is a day I will never forget. I remember going into work. I would see my first 2 patients as the GP surgery didn’t open until 8am. I tried to see my first patient but couldn’t focus and was not really paying any attention to her. I was very scared and kept going through all the possible scenarios in my head. I kept going through the screening questions for sinister pathologies that I routinely ask my patients and I was answering positively for all these. I logically diagnosed myself as having cancer, I just didn’t know where! I went and spoke to my manager and we agreed to cancel my caseload for the day. I spent over an hour on the phone trying to get through to the surgery. When I finally got through I had to get past the secretaries to be able to speak to the GP. This was frustrating to say the least. Remember, I had a self-diagnosis of cancer and needed to find out where it was. I had to exaggerate my symptoms just so that I would get an emergency appointment to be able to see the GP in person. When I was finally given an emergency appointment for around 11am that morning I called Rupen and we went to the GP surgery together.
The GP examined me, looked very worried, sat down and quickly wrote a letter and told Rupen to make sure he took me to A&E. He also called a consultant at the hospital and told him to expect me. He then said, ‘Why didn’t you come to me sooner with these symptoms, Dhrupti? You are in the medical profession and are intelligent’. I was too tired and too worried to respond. However, in my mind was raging and thinking, ‘Are you kidding me?!’
Anyway, 7 long hours in A&E and a few blood tests later I was finally admitted to the acute medical unit to come face to face with the consultant my GP had spoken to that morning, who told me he had been expecting me 7 hours earlier. The blood tests were all inconclusive and so they were going to admit me for diagnostic purposes. I was in tears at this point, and anyone who knows me will know why. I hate hospitals. I have always made it clear to everyone that if I ever become unwell to not take me to the hospital. And now I had to stay overnight in one? It was nauseating. To make matters worse, I was put in a bay, next to a very confused elderly lady who was screaming and handling her own faeces and throwing them on the floor. Gross!
The next day the doctors informed me that they were querying gall stones and that I may have to have surgery to have my gallbladder removed. ‘That’s okay,’ I thought, while I was waiting to have my ultrasound to confirm that it was indeed my gallbladder which was the problem. Considering I had thought up to this point I had cancer, this was a bonus! While I was having the ultrasound, the sonographer explained that my gallbladder was fine but she could see a mass near my duodenum but couldn’t really comment on it and recommended that I have a CT scan and an endoscopy. A day later, I was booked in for a CT scan which revealed that I had a cyst measuring 10x10x13 cm. They were unsure whether it was a duplication cyst or a pancreatic cyst. They would know more after the endoscopy and an MRCP (a type of MRI scan). The results of both these investigations were inconclusive and didn’t give them any more information than the CT.
I was finally seen by the Upper Gastrointestinal (GI) consultant who said that they had never come across something like this. He explained that although the cyst looked non-threatening, my blood test had shown some raised tumour markers and they would refer me to The Royal Marsden Hospital. The consultant went through the possible management options, all of which included some form of surgery. It would be either a pancreaticoduodenectomy (surgery involving removal of the distal half of the stomach, gallbladder, duodenum and head of pancreas) or a simple laparoscopic (keyhole) removal of the cyst. All I was concerned about was feeling better. I was then discharged and put in touch with an upper GI Macmillan nurse specialist.
The consultant and the GP both also signed me unfit to work and told me to cancel my trip to Kenya in July for my cousin’s wedding. I didn’t understand why because nothing had changed. I was still the same person before I got admitted to hospital. So why couldn’t I work and why the hell did I have to cancel my trip for my cousin’s wedding? I convinced them both after 2 weeks of pestering them to let me return to work. Yes, I’m very stubborn and head strong!
Until this point Rupen and I hadn’t really told our families anything apart from the fact that I was in hospital and that they were carrying out investigations. We still didn’t know what we were dealing with apart from knowing that I had a huge cyst growing inside of me and that possibly accounted for all my symptoms. I cannot describe how I felt at this point. There was definitely no fear. I almost felt a sense of relief because now I knew there was something physically wrong (I was not depressed and imagining things, as was initially suggested by the GP) and hopefully something could be done. However I did feel quite frustrated as we didn’t know what it was.
We finally got an appointment to see the consultant at the Marsden on the 1st of July. We took a cousin with us to this appointment as someone objective who could ask relevant questions, because by this point Rupen and I were both quite saturated and very confused as we still didn’t have a definite diagnosis. We had more questions than answers. The consultant was very straight to the point and stated I would need to have a pancreaticoduodenectomy. I left that appointment feeling like I still didn’t have any answers. They didn’t know what they were dealing with but they were prepared to hack away at my pancreas, duodenum, gall bladder and stomach. No thanks! The consultant then suggested that I seek a second opinion as I had so many questions that he couldn’t answer.
I saw a second consultant who I felt approached things more logically. He suggested taking an endoscopic biopsy of the cystic fluid to see if that gave them any more information. However, following this biopsy they couldn’t delay the surgery due to the risk of infection. His approach would be to try and remove the cyst laparoscopically and only if the cyst could not be removed and they could not achieve clear margins would he opt for open surgery. This couldn’t happen until the 7th of August 2014 so I was free to fly to Kenya (I hadn’t cancelled my flights. Phew… and yaay!).
The results of the biopsy were inconclusive, unfortunately. They had also drained over a litre of fluid. However, I did not feel any relief from the mass. On the morning of the surgery I got ready to go to the hospital for my surgery. I had to get there for 7am as I was first on the list. The night before I had told my mum and Rupen that there was no need for either of them to come to the hospital with me that early in the morning and they could come later on once I was discharged. I doubted they would keep me in overnight following a simple laparoscopic procedure. Rupen (also stubborn) ignored my wishes and came with me (secretly I was glad of the company). When we got to the hospital we barely had a second to sit. Three theatre nurses came to get me and all three started prepping me for surgery: one was making me wear those flattering compression stockings and sexy disposable underwear, the other the gown and one putting on my hospital band and checking my notes. Within seconds the anaesthetist came to see me to ask if I wanted an epidural, which they strongly recommended in case I had the pancreaticoduodenectomy. I, of course, refused because I didn’t need to have a pancreaticoduodenectomy. Next the registrar came to see me to sign the consent forms. He explained that there would be a 5% chance of needing the pancreaticoduodenectomy. I signed the consent form, because there was only a 5% chance.
And it’s not going to happen to me……..
At 7:30 am I was taken in for surgery. Approximately 8 to 9 hours later Rupen must’ve gotten the phone call from the hospital. Both, him and my mum, made their way into the hospital. I had no idea how long my mum had been sitting by my bedside but I was glad to see her when I came round. I had absolutely no idea what had happened. I looked around and asked where Rupen was and my mum calmly told me he would be here soon. I kept drifting in and out of sleep and we did this routine several times until I finally saw Rupen, looking very worried, at the corner of my bed, pacing up and down (the same look he had had at our engagement ceremony). I did not have a clue where I was or what had happened. I asked Rupen what they had done to me and when I could come home. I was acutely aware of something sticking out of my nose and something attached to my neck. He told me that I was in intensive care and that I did end up having the pancreaticoduodenectomy. Ofcourse I did. I’m not sure what I thought at that point but remember making a joke as Rupen responded and said it was good that I hadn’t lost my sense of humour.
On the first day post-op the consultant who operated on me came to inform me that the surgery was successful, but they would be keeping a close eye on me. He explained that the initial report from the laboratory from a sample of the tumour they had sent while I was in surgery suggested that I had had a neuro-endocrine tumour (NET) of the pancreas. This meant that I would need chemotherapy and possibly radiotherapy once I was strong enough. Without even thinking I remember asking him ‘Will I lose my hair?’ When I realised how ridiculous I must have sounded I shut my eyes and pretended I hadn’t said anything. I blame the drugs. Once I had time to process what he said I asked him if this would reduce my chances of conception. He reassured me and told me not to worry until they had confirmation from the histology lab which would take approximately 4 weeks. Fortunately, it was not NET and I did not need chemo- or radiotherapy.
I spent 4 nights in intensive care under a bair hugger (a special blanket which keeps you warm). I wish I could have one of those at home! I remember wanting to go for a shower on day 2 post-op and was so happy when the physiotherapists came to mobilise me. I insisted I was well enough to get to the shower. I think I managed to get to the edge of my bed before I was totally worn out. The nurses forced me to sit in a chair until my mum and Rupen came to visit. Day 3 and 4 were the worst. I kept vomiting and felt really unwell. I wished it would just pass so I could go home.
I was finally moved to a ward on the 17th of August 2014. The nurses were great and actually gave me a side room because they didn’t want me to be in a bay full of elderly patients. I was recovering quite well and they were just waiting for my drains and stents to stop draining fluid and for me to eat more than a spoonful so that I could put some weight on (I had lost 12kg post-op). I was finally discharged on the 26th of August.
This is when the real recovery started. My mum would force feed me. I hated everything she prepared because eating would make me feel really uncomfortable. I would vomit every time I ate. I went back to the hospital as a day case and was told I might need pancreatic enzymes for life to help me digest my food. The part of the pancreas that produces these digestive enzymes had been removed. This helped, but not completely. I was also battling with the idea of requiring digestive pills for the rest of my life. This meant I could not put anything in my mouth without taking these pills. I couldn’t just put a crisp or a piece of chocolate in my mouth without needing a pill or several pills. We later found out that I had severe pancreatic insufficiency and it was confirmed that I had to have the digestive enzymes, forever. ‘Forever’ never seemed like such a huge word until now.
I was also referred to a gastroenterologist who identified that I am prone to getting small bowel bacterial overgrowth secondary to surgery and we would continue to manage this with antibiotics long term. More pills!
I was also found to have high calcium levels (hypercalcaemia) and low vitamin D in my blood. The endocrinologist was not sure if this was due to a hyperactive parathyroid gland (primary hypercalcaemia) or in response to the low vitamin D (secondary hypercalcaemia). He was also querying a genetic condition. This is still being investigated to date.
The first few months following my surgery were difficult both physically and mentally. Those that know me know that I cannot sit still for 2 minutes, let alone have to face recovery for up to 24 months. I was also dealing with the fact that I had indeed had a malignant tumour inside of me, but did that matter now that it was gone? Since I didn’t even know I had had cancer until it was removed, did I really ever have cancer? I had mixed emotions; mostly anger, frustration and confusion. Very occasionally I also had dark thoughts, which I forcibly replaced with positive ones out of love and respect for my beautiful and devoted parents, brother and husband. Slowly, but surely, things improved and we returned to a new ‘normal’.
We now have a different set of questions. What are the long term implications? Do Rupen and I just carry on with our life as before e.g. consider starting a family? But what if it reoccurs? Do I have cancer with every lump I feel; every time I am tired; every time I feel unwell; every time I am bloated or have a stomach ache? There are a lot more questions still then there are answers…. Despite this, one thing is certain: I couldn’t have made it this far without the unconditional love and support from Rupen, my family and friends.
And it has happened to us! Rupen, my parents, my brother, other close family and friends! We’ve all gone through this together and are still living with the side effects of the surgery and several hospital admissions which I still hate and make me cry more than feeling unwell (following the last admission I threatened to divorce Rupen if he ever called an ambulance out and consented to having me admitted to hospital as an in-patient). I am definitely a lot better and am certainly enjoying life a lot more. But I am aware that I still have a long road to recovery. Has this made me more patient and less stubborn? No! It has, however, given me an understanding of how other people live with chronic illnesses and I can empathise with them better. I can connect with my patients better. And it has made me even more determined to make the most of my life and to appreciate my family and friends!
My advice: you, and only you, know your body. If it doesn’t feel right, it probably isn’t. Don’t let others convince you otherwise and do insist on a second opinion if you feel like you are compelled to accept something you do not agree with.