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.

Update- Last days in hospital, coming home

I have just got back from seeing my consultant haematologist, who we hadn't seen since before I went into hospital. I had a blood test and he was happy with all the levels and with my general progress since having the transplant. He said that my itch was probably to do with the chemo still in my body and should just wait for it to go, tiredness was expected still. I am due to see him again in two months time.

The last couple of days in hospital were ok. Was obviously very itchy and tired, but apart from that, much was the same. On the Tuesday morning, very early, a whole team of doctors came to see me. The consultant, two or three registrars, a couple of juniors and two medical students. Never have I felt more intimidated in my entire life whilst I was sprawled out on the bed in my pyjamas. The consultant did all the talking and checks, whilst all the others just stared and took notes. He said that he was happy enough for me to go home in the next couple of days, which I was naturally delighted with, having been in hospital for over a week.

On the Wednesday I was allowed home. WOOOOOO. It was a bit of a shock to the system as I had been away now for exactly three weeks. I was shattered. I got home and went straight to bed. It was the day of Purim, so my sister and a good friend had organised a Megillah reading at our house for that evening which was lovely, although I fell asleep half way through. The next couple of days my routine hardly changed. I still wasn't eating at this point so was literally sleeping, watching telly and sleeping some more.

A couple of days later I had to go back to the hospital for a routine blood test and to see the chief  transplant nurse. My blood levels were not good and had dropped quite considerably. They sent me back home with the same injections to boost the level of white blood cells and told me to come back next week to see if these had made a difference. They had and my levels went back to normal and the nurse called and said they weren't too concerned to call me back again and should wait until (today) when I was due to see the consultant again.

Not your average Friday...

I hadn't felt great most of Friday morning. Very light headed and my blood pressure had been pretty low, as well as my temperature on the increase. I had been  given an energy milkshake to compensate for lack of eating and to try and boost my energy. This resulting in most of it being thrown up, luckily caught in a bowl, but none the less... This was the first time I had thrown up or even felt nauseous since starting the transplant. Not a bad record. Eventhough I felt slightly better after having thrown up, I felt that the day wasn't going to end very well... And I was right.

From this, I had felt pretty rough for the rest of the day and spent the rest of the day in bed trying to sleep, which is really difficult when you can't stop scratching. I later got up to go to the toilet, came out feeling very light headed, my mum saw and ran over, shouting for my dad who caught me as I fainted. Next thing I know, I'm sat on the floor with my arm stretched over the doctor's leg, six to eight nurses running around trying to get me to come around. After a couple of minutes, I'm aware of what's going on, I had to wait on the floor for a few more minutes. They then moved me to the bed where I had to lay with my legs in the air to get the blood flowing back to my head and was hooked on to drips of fluids and a jelly like substance.

After coming back to slight normality, the doctor came me a full check over, put me on another platelet infusion had a look at my picc line and was not happy, She thought it looked infected and wanted it taken out straight away. There went picc line number two! The nurse removed it and it did look gross. She sent the end off for testing to check whether it was infected or not. Now that this has been removed, anuthing IV goes through a canular and they can take blood the normal way. This is not ideal, but the best they can do, and I'm not sure they want to fit a third line.

As for the rash, which is still quite dominant, they assumed it was an allergic reaction to anti-biotics (penicillin) and have subsequently taken me off it, but now they might think it is to do with the GCSF injections I have been having to top up stem cells (the same injections as before the stem cell harvest) but I had my last one of these today. We shall see what the result is. As well as this allergy, my skin has become very sensitive to the dressings used to cover up various wounds and has blistered around the areas the plasters once were. They're pretty minging, just have to wait for them to go on their own.

My hair and beard which had also started to grow back, are now falling out again. Going to need some more hats...

Right, I think that's it for the meantime! If there is anything I have forgotten, I shall add it to the next post! X

Update

I have now been in hospital since Sunday and am completely neutropenic which means I have no white blood cells, so am very prone to infection and basically have no immune system. Since being admitted, I have completely lost my appetite (totally uncharacteristic I know!) and haven't eaten a meal in over a week. I pick at meals, but can rarely eat more than 2 or 3 mouthfulls. This is in addition to having a really sore mouth and being in a lot of pain when I swallow...

I have also come out in a rash all over my body, you'd think I'd be used to rashes by now, but this is like no other rash I have ever had. It is so itchy, red and hot. They have been giving me piriton and other anti-hitamines, but they don't really seem to be helping. Unfortunately. There is nothing worse than being constantly itchy! They do think that this rash is being caused by an anti-biotic I had been prescribed. They have since stopped the anti-biotic to see if this was the cause.

Since being here, I have also had to have 2 platelet transfusions, where they have been so low, that they have to give me more. They have also put me on drips for de-hydration (despite the fact that I have been drinking) but this causes low blood pressure. My hair and beard are also starting to fall out again :( but that was to be expected even though they had started to grow back. Will try and update again soon!

Being admitted into hospital

The last couple of days I had been feeling ok other than tired. My mouth had started to feel sore, hurting when I yawned. I had been given a special mouthwash to counter-act this, not entirely sure it's working! My blood test were also coming back ok and hadn't started to drop until yesterday. Today I got classified as neutropenic, which means that my blood isn't producing any white blood cells and therefore means that I am particulary prone to catching infection and must be really careful.

I got admitted into hospital today. My blood levels were really low and I started to feel really exhausted and my stomach was hurting. I had gone to have my morning bloods and my blood pressure was low. They said to come back in the afternoon to double check. However, I got admitted before that. We went back to ambulatory care, got checked by the nurses and the doctor and they decided it be best for me to be admitted. They thought that my low blood pressure was due to being dehydrated, eventhough I have drunken loads due to my dry mouth. They hooked me up on to a drip of potassium something to re-hydrate me.

Stem cells and sweetcorn

Today I received my stem cells back which were taken a few weeks ago. I had to be canulated due to the stem cells being quite thick and gloopy and wouldn't have flowed well down my picc line. The nurse got the canular in in one attempt! Albeit quite painful, but one attempt is better than four! Once I had been canulated, the stem cells arrived, in what can only be described as industrial looking bin (others have said dalek... I like both comparisons). They had been stored in liquid nitrogen and preservative which smelt like sweetcorn. I had my pre-meds which included piriton and anti-sickness. I also had a blood test and pressure test before they started.

The stem cells, which just appear like gloopy blood, had been seperated into five bags and all had to go in with saline to help them flow. The nurse had to stay with my at all times and thaw each bag of cells in a water bath before they could go in. Once melted, they were attached to the canular and allowed to flow. Because of their thickness, they sometimes needed extra help going through. At which point the nurse had to inject more saline to clear the blockage. This was more painful then the actual needle going in, as the saline was literally shoving the thick blood into my veins. Ouch :( This only had to be done twice though. Phew. We arrived at the hospital at 10.30am and left around 4.30. I had to wait around for an hour or so after they were finished to make sure I was ok and that my blood pressure had reduced from pushing the new cells in. It had reduced, although it had been raised earlier during the process.

The whole process was rather exhausting. It took a lot longer than we thought, because it had been seperated into five bags, when they only took one originally. I can't smell the sweetcorn at the moment but could smell it in the hospital. My dad is convinced I smell like sweetcorn. I find it hard to believe. If so, I hope the smell disappears soon!

What happens now is that I just have to wait! There is no more treatment as such. The chemo is finished and I now have my stem cells back. I still have to go to the hospital every day for blood tests, check ups and to be seen by the doctor, but until the point that I get too ill, I'm allowed to still stay in the hotel and do normal things. They say that it takes a couple of days for me to get ill from receiving the stem cells. So now, all I can do is wait!