Exactly one year to the day since diagnosis (and an update)

It didn't occur to me until around 11am, that this day, exactly one year ago, I heard the dreaded words that no-one ever wants to, or should hear. When I realised, I came over all funny and didn't really know what to think or say. I remember being on the train back from Leeds to London this day last year and just thinking, what could it be? I had been through so much investigative work to that point, that I thought things could only get worse. And noch, they did.

And one year on, on a more positive note, I lived to tell the tale and again want to thank everyone who was there for me and my family throughout this very difficult year. I am now back to almost full health. I have a full head of hair (even had a haircut!) and have returned to university to complete my studies. My sister also just got engaged this week, so I am naturally delighted and ecstatic!

I saw my haematologist last week before returning and he was happy with my progress. He said that the shingles blip was most likely due to being a little bit immuno suppressed, but was happy with my recovery and said my bloods were normal :)

Erev Rosh Hashanah- One year on from diagnosis

Erev Rosh Hashanah 2011, the world as I knew it changed. Being diagnosed with cancer last year was one of the most challenging things I have ever experienced. So one year on post diagnosis, I just wanted to share a few thoughts and feelings.

This year has taught me so many things, that I don't think I'd of known had I not gone through everything that I went through this year. The main thing it has taught me is positivity. In times of trouble and sorrow, I believe that positivity is vital and I know that staying positive has helped make my cancer experience easier to cope with. I have also really learnt to appreciate everything I have as it can so easily be taken away from you. Live life to the full.

To all my family and friends who have been there for me over the last 12 months, I thank you all from the bottom of my heart. To all those who visited me in hospital either for chemotherapy, my transplant or shingles, those who stood by me when my hair fell out and when I lost my eye-brows and eye-lashes, everyone who wished me well, everyone who mentioned me in their prayers (I appologise for my Hebrew name...), those who messaged, sent cards and those who just had me in their thoughts. Thank you. May this new year bring you all you ever wanted and more.

On a less cheesey note, I have two appointments next week. One with my haematologist and another with the eye specialist, I will update again in due course.

When I thought things were improving...

This week I have had two appointments with different opthamologists. The first one was seriously delayed and by the time I got home, had taken nearly 3 hours, of only which 10 minutes I was with the doctor. Fab. Although it wasn't the doctor I saw last time, she said from my notes and after a good examination of my eye, she said it looked better, but to carry on with the steroid eye drops and come back in a couple of weeks. Bound to if I have to wait 3 hours each time.

After this consultation, it was decided that my next appointment with an opthamologist would be private, merely for the continuity, that you see the same specialist each time, which with eyes is important. We managed to get an appointment a couple of days later with a new opthamologist, although he was also running late, it wasn't as late...

Before I saw the consultant, I had to see optomotrist (optician), he checked my vision and the pressure in my eyes. He noticed that the sight in my right eye was far better than in my left eye, and that when my right eye was covered, the vision in my left eye was quite blurry. He took some very specialised photographs using a really cool machine and he passed on all his findings and the photographs to the consultant for analysis.

I was shortly called into the consultant who was very friendly and calm. He'd read my long, complicated back-log of medical history and immediately started to examine my eyes thoroughly using all sorts of machines and lights. He said he had good news, that in regards to the shingles, my eyes were completely clear. He then said the dreaded word. But. At which point I knew something bad was going to follow...

In my left eye (the one not affected by the shingles) I had something called Keratoconus. This basically means that my cornea has changed shape, therefore affecting the vision and explaining the blurred vision in my left eye. Here is a website to explain it more clearly...http://www.eyesite.org/cornea-and-eye-surface/keratoconus-2/ We asked if it was anything to do with the cancer and shingles and he said that this was completely unrelated. I could have been born with it or it could have developed later on.

He didn't want to do anything yet until I had finished all the steroid eye drops that I am currently taking. I am due to see him again in a couple of weeks where I'm sure he will discuss further what's going to happen.

In the mean-time, today I'm going to the optician for a further eye test for further eye analysis, I will keep you posted.

Postherpetic neuralgia

I went back to the dermatologist last week and her diagnosis was confirmed. The first thing she said to me upon entering the consultation room was "have you got good news for me?" the answer was unfortunately, no. My skin was still really itchy and sore despite the steroids. This then confirmed her original thought, that I had nerve damage, due to the shingles. This is called Postherpetic Neuralgia.

We asked about the injection that she mentioned last time, but she said she'd had no luck getting hold of it as it is normally used as a last resort. Instead she gave me an extra dose of steroids and increased the amount of nerve pain killers that I was already taking. She also suggested a cream that I could use. She did warn me, that it may make my face feel like it was on fire. It did. The instructions were really strict on the cream, that you had to apply it really sparingly and make sure to wash your hands after application. That night I couldn't sleep as it felt like someone had set my face alight. I was sat on the floor in my bedroom with the electric fan blowing on my face and then a freezing cold flannel. I assume I eventually got to sleep and decided that I couldn't handle the cream and preferred the itching...

When I asked how long she expected the symptoms to last for, she said, because I'm young 3-6 months. That wasn't the answer I was expecting or wanted, but there's nothing I can do! I will therefore continue to scratch and hope for the best!

More news and fun

I was in hospital for just under two weeks. Every day I was put on IV drips of anti viral medicine, as well as pills and eye drops. I also had to see an Opthamologist (eye specialist) to make sure the shingles hadn't spread into my eye. They luckily hadn't, but was still put onto special eye drops just in case. He wanted to see me again before I left.

Things started to improve the longer I was there. The blisters started to turn to scabs (which was a good sign even though it sounds worse). Even though I was starting to feel better, the doctors wanted to keep me a few days longer to finish the medication I had started.

When I was eventually allowed home, I was sent home with even more pills, strong anti virals and follow up consultations with the opthamologist and haematologist. The opthamologist had a thorough check of my eyes and said that my right cornea was inflamed and gave me lots of eye drops and creams and told me to come back and see her the next week. The haematologist didn't have that much to say. However at this point, the whole right side of my head and face was really itchy. From my nose to the top of my head. She gave me some anti-histemines. They didn't work.

I went back to the eye doctor the following week, she said my cornea was better, but the skin looked much worse. She told me to carry on with the drops and see a dermatologist. We managed to get an appointment with my dermatologist the same day. Even though she had already signed me off, she was happy to see me again. Interestingly, she said it's not actually anything to do with my skin causing the irritation. It's the nerve endings in that area of my face which are re-building due to the shingles having caused them damage. She said that any topical creams wouldn't help and prescribed another round of steroids. She also mentioned an injection, which isn't available in this country which is normally used to cure this sort of problem. I have a follow up appointment with her next week after my course of steroids is finished, and if they've helped, we shall carry on as normal, but if not, she said she will consider the injection.

The fun never stops...

Latest Saga

Hi Everyone! I know it's been a while since I last blogged, but just wanted to update everyone on my latest saga...

I had gone to Israel with a few friends at the end of June to celebrate being cancer free. We had an amazing time! However, on the very last day, I started having severe headaches. On the flight home, every couple of minutes, my head started throbbing for a couple of seconds, then the pain stopped. Was a very weird sensation. I could also feel something on my head. It felt like a big spot and rather grusome.

The morning after returning, I headed for the GP. After waiting for 45 minutes to see him, he said I was having migraines and told me to take paracetamol. 45 minutes to be told to take paracetamol. What a joke. He also said the spot on my head was likely to be an inflamed hair follicule. I then went out for the day to Wimbledon, headaches still persisting despite the paracetamol.  After watching two matches and just after seeing Jo-Wilfried Tsonga win the first set, we headed home as my head felt like it was about to burst.

When I got home, uncharacteristically, I refused dinner. My head was throbbing, but only on the right side. It felt as though someone was trying to force my eyes out from inside my head. It was excruciating. I don't think I slept that night because I was in so much pain. As I awoke, I couldn't lift my head or open my right eye, fearing that it was going to fall out. My parents rang their GP friend and he said to take me straight to A&E. At this point, I had also thrown up twice. My parents bundled me in the car, still unable to really lift my head or open my eyes.

As I got out the car, I threw up again and we headed straight for the desk. We didn't have to wait very long to be seen by the nurse. I think I vommed again at this point. She found me a bed and I laid there motionless in between puking. Doctors came around quickly and because of my complicated past, they didn't rush treating me until they knew everything. At first they thought I was suffering from something called Cluster Headaches, which I later googled, and it sounds horrendous. I later found out that I was being checked for menigitis and they were seeing whether I had had a stroke... I was in A&E for a while rolling around in pain, throwing up and they sent me for an MRI scan, thinking it could be something to do with my brain. I threw up before (and after) the MRI, thank goodness not during!

My MRI came back clear which we were all really relieved about (not that I was in a very conscious state). I could hear what was going on around, but was in no fit state to reply. I was then moved to a bay on CDU (critical dependance unit) where I was being closely monitored and put on oxygen. Oxygen was meant to help relieve the pain, it didn't, it just made me throw up even more. I was also being given pain relief injections which weren't helping and was eventually hooked on to a morphine drip.

Once the pain had settled slightly, I was moved again. The next day, still unable to open my eyes, blisters started to appear on my face. Doctors were still slightly puzzled and being in hospital over the weekend is the worst time to be in because it's rare you see a consultant. It was eventually decided that I had shingles (a form of chicken pox). I then had to be moved again into a private room (luckily) because I was infectious especially around children and pregnant women. Also people that haven't had chicken pox. Even though I had had chicken pox as a baby, because I was still immuno suppressed with a new immune system, I was able to contract it again. And with my track record, it was bound to happen.

More to follow...

A big thank you

Firstly, I just wanted to say a huge thank you for all the kind messages I have received since the article was published in the JC and online. However, due to unavoidable circumstances and word limits, my piece was significantly reduced in size and I wanted you to see the full version. So here it is. Wishing you all a happy Pesach/Easter and thanking you all for your kind wishes and support.

Erev Rosh Hashanah. Normally a time spent getting the last few things ready for Yom Tov. However last Rosh Hashanah turned out to be one of the worst days of my life.

I had been ill since returning home from my year abroad in Berlin and I had undergone countless blood tests, three skin biopsies, a fine needle biopsy, three operations, possible tuberculosis, a diagnosis of Dermatomyositis (a rare auto-immune disease), two MRI scans, a muscle specific MRI, three CT scans, an ultra-sound, three steroid infusions, hundreds of pills and creams and seen ten consultants for innumerable appointments. Despite all of this, I had just returned back to Leeds University to complete the final year of my degree, I hadn’t even unpacked when my parents called me, and told me to get the next train home. The doctor had news...

Down I rushed from Leeds to London where I was met at the station by my family, all looking at me nervously. We drove straight to the hospital and waited in the now very familiar rheumatology waiting room to be seen by my consultant. She called us in. There was a long, awkward silence and I think we all knew what was coming. Although I had travelled down to London with the expectation of bad news, nothing could have prepared me for what she was going to say.

 
“You have cancer”, she explained. The tears and emotions which followed were unlike anything I’d ever experienced before. Nothing could have equipped me psychologically for those three words. All the negative connotations associated with cancer were dancing around my mind. The consultant kept talking, but nothing was really going in. The feeling in the room was very high and intense and the tears just kept on flowing. She gave us some time to regain our composure and then immediately introduced us to a consultant haematologist who was going to take over my care from now on.

Being told I had cancer was the hardest thing I have ever experienced. On the way to that appointment, I had in my mind that it was going to be bad news (just from googling recent symptoms) but no matter how negatively I thought, I was so emotionally unprepared for that diagnosis. I thought because it was cancer, that the prognosis would automatically be irresolvable, however, I have defied the odds and not only now beaten cancer, but suffered minimally in the process.

I have now completed all my treatment and am in remission. My treatment consisted initially of six rounds of chemotherapy every two weeks. Apart from losing all my hair and feeling very fatigued, I hardly had any other side effects. After the third round of chemo, I was told that due to the rare type of Non-Hodgkin’s Lymphoma that I have, I would need to have a stem cell transplant once all the chemo was completed to make sure I have the same outcome as those with more curable forms of lymphoma. The stem cell transplant consisted of the removal of my stem cells which were then frozen. A week later, for six days, I underwent high dose chemotherapy every day and then I received the stem cells back, at this point I was admitted to hospital for ten days until my immune system rebuilt itself.

As I was diagnosed only two days in to the beginning of my fourth and final year of university, I naturally had to put my studies on hold for the year as travelling up and down to Leeds in between treatments would have been too difficult and tiring and I would have had to miss a couple of weeks whilst having my transplant in hospital. On a slightly more positive note, it has delayed me deciding what it is exactly I am going to do once I complete my degree, as I am still ambivalent! The chemo didn’t affect my social life too much. I was still able to go out and do things as and when I wanted but was naturally more tired and bald than I was before. I also had to try and avoid heavily congested places full of people due to my immune system being weakened and compromised from all the treatment. I found telling some of my friends that I had cancer particularly difficult, as I just didn’t know how they were going to react. Most of my close friends I felt it important to tell them personally, rather than them hearing from someone else. My friends were naturally upset, but having a good, strong group of close friends has made the whole process easier and not so scary.

Having cancer put a massive strain on both me and my family. I found that the easiest way to get through it was to keep smiling and always think positively. I think that if I had let it get the better of me emotionally, it would have been much more difficult. You just have to go along with it, take the doctor’s advice, keep your friends and family close and not let cancer define who you are. I would like to express my immense gratitude to all the staff at Barnet General, UCLH and Chai Cancer Care, my amazing friends and family who have all helped to aid my recovery and make it as smooth and easy as possible.