Sunday, 16 December 2012

Eyes and a small favour

So I went to see a new eye consultant for a second opinion at a specialist eye hospital. I was called in by a very nice, Greek optometrist who took all the vision tests, scans etc. She put in eye drops which was a mission in itself as I couldn't stop blinking. She even said, "oooh, we have a blinker here!" which didn't help much. She eventually got them in and I went back to the waiting room to await the doctor.

He eventually called us in and I think "posh twat" would be quite an accurate description. He didn't bring much to the table, he looked through the scans and had a check of my eyes through another machine. He said that I do have keratoconus in my left eye, but was a number 1 on the seriousness scale. He said to come back in 6 months for a re-scan. And that was it. Quite different from the last doctor, who said it was quite urgent and wanted to start a procedure almost instantly! So I will go back to him then, if I haven't noticed any obvious differences in my vision.

Now a small favour.

My future brother-in-law will be running the London Marathon next year and is raising money for an incredible charity. Chai Cancer Care. They work with not only cancer patients, but their families, to help them cope with a cancer diagnosis. They were, and still are amazing to both me and my family. If you could sponsor him to raise money for this cause, it would be very much appreciated!

Here is the link:

And here is the video again of the speech I made, high lighting why Chai is such a worthwhile cause:

Tuesday, 11 December 2012

An update and good news

Hello everyone! Sorry I have not written for a while, but here is the latest update!

Today I went to see my haematologist as a routine quarterly appointment. After waiting an hour and a half to see him (this isn't the longest I've had to wait for an appointment), I was called in to see him. I'd been sent for a blood test upon arrival, and luckily the phlebotomist got the needle in first time, so things started off well! He asked how I'd been, back at university etc. He looked at the results from my blood test and was really happy, saying things weren't only normal, but good! WOOOO!!

We started talking about the medication that I was still taking post shingles. These were anti-viral and he said I could stop taking them from now. This is the first time in 18 months where I've been on no pills or medication, so this felt like a great relief! After all the talking, he took me into a side room, to have a feel around for any potential raised lumps or lymph nodes. Always awkward in these sorts of situations, I started laughing when he was prodding under my arms. I'm not even ticklish. At least, I didn't think I was! After the awkward prodding and feeling around my neck, under arms and stomach, he said everything seemed fine! He wants to see me again in 3 months time!

That was the best I could have asked for to be honest! Tomorrow I am going for a second opinion to a specialist eye hospital about the blurred vision in my left eye. I will update my blog again later on in the week with the news from this.

Monday, 5 November 2012


This is a video of the speech I made in May, speaking about my experiences of cancer and Chai Cancer Care.

Friday, 28 September 2012

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 :)

Sunday, 16 September 2012

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.

Friday, 17 August 2012

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... 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.

Tuesday, 7 August 2012

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!

Wednesday, 25 July 2012

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...

Thursday, 12 July 2012

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...

Friday, 6 April 2012

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.

Thursday, 29 March 2012

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.

Monday, 5 March 2012

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

Friday, 2 March 2012


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!

Sunday, 26 February 2012

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.

Wednesday, 22 February 2012

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!

Tuesday, 21 February 2012

End of chemo, stem cells back

I have now finished the chemotherapy part of my transplant. My fanny pack of fun was also removed today woooooop! I have now come up in a rash all over my arms, legs and chest, but the nurses and doctors think that it's due to the chemotherapy drugs I have been taking and have prescribed piriton. So far each day I have been given the same drug, apart from today where I was given a different one. This was infused in half an hour, rather than over two hours. I also got to have an ice-lolly with my chemo (win! It was very tastey) because this drug is meant to make your mouth sore and nurses have a theory that if your're eating something cold whilst it's being infused, it helps. We shall see, either way, I got an ice-lolly out of it :)

Tomorrow I am due to get my stem cells back. They have been frozen and so will be thawed whilst I get them back. We were told the preservative that they are frozen in smells like sweet corn... Hopefully I won't come away tomorrow smelling of corn, but could be worse I guess! After I receive the stem cells back, which they need to canulate me for as they don't go through the line well, I don't receive anymore treatment, but still need to go in every day for observations and blood tests to monitor the levels in the blood. We then have to wait until I get too ill, that I will need to be admitted as an inpatient. My blood levels at this point will also be very low and I will be neutopenic (low number of neutrophils). They said this could take a couple of days, from when I receive the stem cells back, so probably around Friday or Saturday.

Other than the itchy rash and feeling very tired, I am feeling ok. For now... Will try and update again soon.

Saturday, 18 February 2012

More chemo and treatment

I have now had three days of chemo as part of my transplant. The first day was pills and yesterday and today were all intravenously through my line. They take blood before each session starts and they chemo drips in from two bags over two hours. Yesterday the chemo went well and I felt fine They also hooked me up to a sexy bum bag with chemo in it which drips in over 24 hrs. Today I had my treatment and felt horrendous. I got home from the hospital and completely flaked out. I could hardly keep my eyes open and spent the rest of the afternoon in bed. I felt a bit sick, but not that I was going to be sick... (if that makes any sense...). I didn't even have any lunch! And for me to miss a meal, something is definitely wrong! I'm feeling much better now typing this. Still a bit tired, but not feeling ill.

More to come over the week x

Thursday, 16 February 2012

More problems- Starting in hospital

I arrived at the hospital yesterday, expecting my new set of chemo to take place. Everything was going really well until the nurse took one look at my picc line and said it was the wrong one. I had one with one tube coming out of it, it needed two. Great. So all the palava I had been through the other day, all the bleeding, A&E, more bleeding had been for nothing because it was the wrong wire. They did say, that potentially I would have to wait til next Monday before they could find someone to do it and said they would call me to update on the situation. Thank goodness they found someone. Two hillarious nurses did the procedure. Which was quite bizarre, because a consultant, with two nurse helpers did the last one... The second team were really funny and made the whole situation feel a lot lighter then the mad man who did the last one.

The line is now in my left arm with two dangling tubes hanging from it. It's very attractive. They can give me two different things at once, if they need to. Because they had to take out the original line and change it for the correct one, my treatment was delayed for a day due to not being able to get the tablets from the pharmacy in time by the time it was finished... Not as bad as it could have been!!!

I went in today for the start of my treatment. Every day they will take blood to check the levels are ok. The doctor came around to make sure I was ok and that the line hadn't caused any problems over night. I also met the pharmacist who went through the side effects of all the drugs I have to take alongside my chemo (my old man pill pot has been topped up with around 19 pills a day...). My blood was taken through the line and my chemo today was just in pill form. Eleven pills. 10 of one thing and 1 of another kind. All in the name of fun...

Tomorrow the proper chemo starts!!

Sunday, 12 February 2012

More information on the transplant

Here is a link to more information on the stem cell transplant.
Happy reading...

Saturday, 11 February 2012

Picc Line fiasco and A&E

This week I was scheduled to have my picc line fitted. A picc line is a tube inserted into a vein in the upper arm, that makes taking blood and receiving medicine intravenously a lot easier, so they don't have to find a vein each time. Especially if, like me, you don't have particularly good veins.

We turned up for the appointment at half past three and at six o'clock I was finally called in. They explained that there had been a couple of emergencies who were rushed in and needed urgent attention and that was the reason for the delay. Nothing we could have done. The doctor seemed a bit on edge and not really with it. Brilliant. He took me into the room where he was going to perform the procedure, after having already put on a sexy surgery gown, I had to lay flat on my back with my right arm streched out on what looked like an ironing board. He performed an ultra-sound scan to find the vein and injected a local anaesthetic into my arm, which actually quite hurt! I couldn't see what he was doing, but could feel blood trickling down my arm as he was inserting the line. About half an hour later, it was finished. He put some very specialised bandaging on it and left the tubes hanging. He told me I could go. I asked him how I should take care of it and he said he didn't know. Again. Brilliant. He got one of the nurses to put a bandage around it so the tubes weren't loose.
What a fun experience that turned out to be.

We arrived home and within ten minutes of being home, the whole thing started pouring with blood.  Slightly pannicked, we called the GP who reccommend going to A&E as it is quite specialised. We then phoned the chemo ward to see what they suggested and they said the same thing. Back we schlepped to the hospital, but to A&E this time. We got seen by a nurse almost instantly, but she didn't know enough about it, put us in a room and told us to wait for a doctor. About 2.5hrs later, a doctor came in (he happened to look like Jack Whitehall, but that's not important). He had a look at it and said he would be right back. By this point it had already stopped bleeding. He lied. Another 20 minutes later he had another look and asked a few questions. He went off again. I then went to get a drink and bumped into him. He said he was sending a nurse to take some blood... After a while, a consultant came. Had a look, said it wasn't anything to worry about as the bleeding had stopped and they didn't want to change the dressing because it was too specialised. Six hours in hospital. The fun never stops!

Two days later we were back at the hospital for more tests pre transplant. In the chemo lounge they took my blood from my new line. It worked :) She also cleaned it up and changed the dressing, so now it looks beautiful (in comparison to what it did the other day anyway...) I also had to have a heart scan, which is just like an ultra sound but over my heart. She said that was all fine and my heart was good. I then had a chest x-ray, which will be sent to the transplant unit to check the line is as it should be.

Back to the hospital again to see the consultant who had all the results from my tests. My heart was good, my line was in the right place and everything was as it should be! He explained a bit more about what was going to happen in hospital. For the first week, every day, I will be having high intensity chemo therapy. At this point, I will be allowed to stay in a hotel near the hospital. After this week, once the chemo has kicked in, I will then be admitted into hospital, as the chemo is so intense, it is guaranteed to make me very ill. I will be admitted on Wednesday 15th Feb.

Wednesday, 1 February 2012

More cancer fun

Last week I had my extra chemo as part of the transplant. It was a more intense, higher dose of one of the drugs I used to receive in previous chemo sessions. I felt a bit funny for the first time whilst having chemo. It did take four attempts to get the canular in, a new personal record, and I just didn't feel right. I came home from chemo with a big bag of injections to have every day and feeling a bit sick.

The next day I woke up feeling pretty horrendous and for the first time, having already been through six rounds of chemo, I threw up. I went back to bed for a couple of hours and threw up again. Everywhere. My dad phoned the chemo ward to let them know and they suggested some stronger anti-sickness medication, which he went to pick up. After taking them, I felt much better and didn't throw up again. I didn't mind the whole vomming situation, as I think I've been very lucky not to have even felt sick or thrown up from my previous chemos so I wasn't too gutted.

Every day after chemo and before the stem cell harvest I had to have GCSF injections, which are meant to promote stem cell growth. I had two of these injections every day in my stomach and now have some nice bruises to show off. I even let my friend do one of the injections (she is a trainee nurse and the doctor was there watching!) In the stomach they aren't as painful as they would have been in other places. Before the harvest I also had to pee for 24 hours into a bottle, which was to check my kidneys were ok. (They are :)) I also had to go for one final blood test which they did on the chemo ward. One nurse tried and gave up after one attempt cos she was so scary I flinched. One of the regular chemo nurses took over and got it in on her second attempt, so only 3 goes... not as bad as last week... Damn my rubbish veins!

I had my harvest session today. It involved more needles, tubing and being hooked up on to a very large machine for four hours. One regular canular got inserted into my right hand, no problem getting it in, and one massive metal needle which doesn't bend was inserted into my other arm on the inside of my elbow. This arm could thus not be moved for the enitre process. They did tell me that once I was hooked up to the machine, they weren't unhooking it until the end, so if I needed to pee, it would have to be into a bottle... not so easy when you can only move one hand... I will spare you the rest of the details... The whole process of filtering the blood and removing the stem cells lasted about four hours. They collected 2.5million stem cells, which disappointingly only looked like a small sandwich bag not even half full.. Never mind! I am to see the consultant again next week, who will then decide when I will be admitted to hospital! Still more fun to come!

PS sorry for all the talk of vomit and wee...

Thursday, 19 January 2012

Good news :)

This week started off with the first of three appointments with the dermatologist as a check up. As I had mentioned before, my itchy ears were still really bothering me and the itching had spread to my face, mainly around my eyes and cheeks. She said that this was most likely being caused by all the steroids which I had been taking and gave me some more anti-biotics to help it stop. So far, they haven't worked, but it's early days yet.

My second appointment this week was with the haemotologist and he had the results of my scan from the previous week. He had good news. The scan showed that the cancer had completely cleared! WOOOOHOOO!!! This meant that they could continue with the next stage of the stem cell transplant. He gave us some more details of exactly what was going to happen from this point. Towards the end of January, I have to have one more session of chemo, but only one of the four drugs I am normally given, however, it will be a higher dosage. Straight from that for the next five days, I am going to have more of the same injections which I had been having after the chemo. These injections are to help stimulate stem cell growth. A week or so after the injections, I will have my stem cells removed. This involves being hooked up to a machine in both arms. They take blood from one and in the machine it seperates the stem cells from my blood and removes them. These will then be harvested and frozen. The excess blood is then put back in my body. This whole process should last about six hours...

A week or so after this (toward the middle of February), I will be admitted into hospital where I will undergo daily treatments of high intensity chemo. I have to be admitted due to the intensity of the chemo almost guaranteeing that it will make me ill, especially as my immune system is already compromised and have low blood counts from the previous chemos.

Although I am now in remission, there is still quite a long journey ahead!