Wednesday, 23 November 2011

Starting the treatment

I forgot to mention in an earlier post, after my diagnosis, he wanted me to go for a PET CT scan, which is a very specialised scan and injects a radioactive substance into your blood and can detect the activity of the tumours and show you exactly where they are. After having the injection, I had to lay down for an hour for it to kick in before I could have the scan. Apart from the radioactive injection (to which I was fairly disappointed when I didn't glow after) it was very similar to the previous CT and MRI scans I'd had before. The results from this were sent straight to the haemotologist who discussed them with us. There were tumours down the whole right side of my body, between my neck, chest and my arm-pit (right near where they removed the lump). It had been classified as stage 2a which was not the worst, but not the best. The Dr also told us that the cancer hadn't spread to my bone and bone marrow (some good news).

I had originally been up to the chemo ward before for a blood test and my bone marrow aspiration. It was not a place I would have chosen to go back to too often, as from an on-looker, it seems very depressing. Lots of bald people hooked onto drips. Now that I'm used to it, and fit in quite nicely was the bald, I quite enjoy going and feel very relaxed there.

From the three steroid infusions which I had previously undegone (from the dermatomyositis), I kind of knew what to expect from the chemo, being hooked up to a machine and waiting for the drugs to go in, so it wasn't such a traumatic and unexpected experience. Every time I have been, which is now four times, I have been the youngest there by quite a few years. Before each chemo session, I have to have a blood test to check the levels in my blood are ok to proceed with the chemo, because if not, then they have to delay it. So far they have been fine, apart from when the nurse misses the vein with the needle, which is a right pain, but nothing you can do about it unfortunately!

A lot of people have been asking me, so what is chemo actually like? And it is how you picture it in the films. Lots of ill looking people, hooked up on machines, waiting for their drugs to pour in, so that they can continue with their lives. Although, it has to be said, for a pretty depressomg place, the atmosphere is quite buzzing! The patients (and their visitors) are always talking to eachother, the telly is on, hot drinks are always being made, chocolates and biscuits are always being passed around (my favourite bit) and the nurses try to make it as pleasurable experience for the patients as they can.

My first chemo session went really smoothly. They administer four different drugs (all with really long, complicated names) through the IV drip, plus anti-sickness-plus saline (to help them all flow through) and I have to take steroid pills as well. I'm also lucky enough to go home with a nice collection of pills (anti-sickness, steroids and a couple of others of which I'm not sure what they're for...) plus an injection which I have to have 24 hours after each session. It starts off with about 14 pills a day for the first week, then reduces to about 3 or 4 towards the end of the two week cycle. I did have to buy a pill pot (made me feel very old) to keep them all organised as they all have to be taken at different times of the day... I didn't feel any symptoms between sessions one and two apart from tiredness, but I was feeling very tired anyway, as fatigue is a common symptom of dermatomyositis.

Session two came around very quickly. I sat next to a girl, who turned to me asking my age, saying that I was the youngest person she had ever seen there before (she was in her fifth cycle) and was only 26. We got to talking and it turned out (completely unrelated to her cancer) that in her final year of university, she sleep walked out of a fifth story building, breaking both her legs, her arm, jaw, cracking some teeth and God knows what else! Either she had done something incredibly bad in a past life or was just extremely unlucky! Amazing the people you meet in chemo! I remember saying to someone, that I had a weird feeling my hair was going to fall out after my second chemo session. And noch, it did. It started to fall out quite quickly and it patches. At first it looked like bad recedence and that it was thinning, but it started faling out fast. Losing my hair didn't seem to bother me too much, as I think it's something you expect to happen with cancer. The only thing that slightly bothered me now, was the fact that I looked like I had cancer. Although I'd now known about it for almost a month, you coulnd't tell, but now looking like I have cancer, felt worse. When the hair started to fall out, it was incredibly itchy, prickly and uncomfortable. I therefore had it all shaved off (for the first time I'd ever had my head shaved...) to a number one. It did look slightly better, albeit quite aggressive and thug-like, but more under control and cancery. I was also not used to having short, thin hair as my hair was always really thick and jewfro-esque.

Thursday, 17 November 2011

A final diagnosis

It was now time for me to go back to university. I had to miss Freshers Week due to recovering from the suregery under my arm and went back up on the Monday of when lectures were meant to begin. I had arranged a lift back home to London for Wednesday afternoon for the Jewish New Year. However, on Tuesday morning I received a phone call from my parents. The rheumatologist had rang and wants to see us Wednesday early afternoon. The nerves start to kick in. I booked a train instantly for the Wednesday morning to arrive back at Edgware around 2pm and we went straight to the hospital. The atmosphere in the car on the way there was tense. Both my parents and my sister were in the car and I went expecting the worst with the assumption that any good news would seem really great, and if it was bad news, then I would be prepared.

We arrived in the rheumatology clinic, now a familiar location and waited to be seen. A nurse called me over to take my blood pressure. For the first time, my pulse was slightly racing, which showed up from my blood pressure and was very nervous.

The doctor saw us, and called us into her office. My heart was racing and my palms were sweating. She sat us all down and told us she had my test results back from what the surgeon had removed the previous week. By now I was a bit of an uncontrollable mess and she opened her mouth. "You have lymphoma", were her words and at that point, the tears that had built up inside me burst out. This was the first point through this whole ordeal I'd shown any emotion. All the needles, countless appointments, scans, uncertainty, consultations, biopsies, operations, pills hadn't phased me in the previous six months, but hearing I had cancer for the first time brought out a completely different side to me. I tried to compose myself as best as I could and looked over at my family and could see a sea of tears and emotion. Even though I had entered the room assuming the worst, nothing could have prepared me for that.

The doctor was handing out tissues left, right and centre and once composure had been regained, she carried on. She went on to explain how dermatomyositis is often driven by something, and when the steroid infusions had no effect and my neck scar wasn't healing, she thought there must be something else as well. Although when they tested what they had taken from my neck for lymphoma already, it didn't show. She said the sample they took must have been too small and had they taken more, we could have found it earlier. In your body are millions of lymph nodes, and you just have to find the ones with cancer in order to diagnose. There is no direct way to tell from your blood.

She had arranged for a Heamotologist to come talk to us, who was going to take over the cancer care, as this was now out of her speciality. She went to get him and she still sat with us through our whole meeting with him. He explained that my case was very confusing and that there are two types of lymphoma. Hodgkins and Non-Hodgkins, which can again be sub-categorised and it was taking a while for them to work out which type I had. Once they knew that, they would be able to tell me more about the exact treatment I would need. Either way it would have been chemotherapy, but they are slightly different depending on the type. He said that his team of Haemotologists were having a meeting about me at the end of the week and wanted to see us the following week. He had been positive about the prognosis and being young and relatively healthy was on my side.

We came home from the hospital and the phones didn't stop going, as friends and family knew we had this appointment. We went straight to tell my Grand-Parents, who were naturally heart-broken and very upset. As we got home, my mum's sisters, brother-in-law and one of my cousins were waiting on the door step to console and comfort. The Jewish Holidays continued as normal. I found it rather difficult telling people, as it is a really big thing, but the more I got used to it, the easier it became.

We went back the following week to see the doctor. My haemotologist was ill, so we saw his colleague who also happened to be at the meeting and was fully aware of my situation. She told me that I have Anaplastic Non-Hodgkins lymphoma, which is one of the rarer types and also talked me through the chemo, all the side effects etc. A few days later we returned to the hospital and saw my haemotologist who explained exactly what was going to happen. He also told me I would need a bone marrow aspiration, to check if the cancer had spread onto my bones and into the marrow. This was probably one of the most uncomfortable experiences. Ever. We met his beautiful registrar who was going to perform the procedure. I had to lay on my side, trousers pretty far down whilst she shoved (and I say that quite literally) a MASSIVE needle into the back of my hip. They can anaesthetise the area, but are unable to anaesthetise the actual bone. At this point she said I could scream/swear, whatever. And I did. One huge profanity later and it was all over. She showed us everything she took. It was quite grotesque, yet really interesting. With that, chemo was due to start the following week!

Wednesday, 16 November 2011

The saga continues...

I had also been back to the chest physiscian, who had all my TB results back. I didn't have TB. He'd ordered a very specific blood test for TB and other rare tropical infections, all of which came back negative. He did assure us it was the right thing to do (starting all the TB meds), just in case, because, as I mentioned before, had it been TB and gone untreated, who knows what would have happened in my neck. He signed us off, and handed us to the new dermatologist and rheumatologist. Had it not been for him though, connecting us to the new doctors, God knows what would have happened as they seemed to have gotten into a rut.

Meanwhile, the muscles in my arms and legs were still really painful and the rheumatologist, although had already put me on anti-malarials (treatment for lupus), the chest physician and new dermatologist weren't convinced of this and wanted my to see their rheumatologist friend (these three consultants are all friends and work at the same hospital). Off we went to see the new rheumatologist...

We went to her consultation suite to meet her and began to explain the whole story again. She did look very young, but definitely knew what she was talking about. She'd already spoken to the dermatologist and chest physician and had ordered for me to have more blood tests before we saw her. She was convinced of a diagnosis before we met her. She performed a couple of tests on my muscles and told us that it definitley wasn't lupus and almost certainly dermatomyositis (which literally means inflamed muscles and skin and is caused by problems with your immune system...probably should have mentioned that earlier). She asked if I had been sent for a muscle MRI (which we'd never heard of) and was shocked the other rheumatologist hadn't done so. I'd had an MRI on my neck and torso, but not the muscle specific one.

For those who haven't had an MRI before, they are not the most pleasant or relaxing of experiences (and this was now to be my second). It's like being in a coffin underneath a pneumatic drill. The first one they gave me headphones and some music, which I could barely hear, but this one they didn't.

We went back to the rheumatologist the following week, and she had the results from the scan. They confirmed that my muscles were inflamed, particularly those in my thighs and we are getting even closer to a final diagnosis. What she then wanted to do was give me three batches of steroids intravenously (through a drip) to relieve the pain. She said that this would greatly help the pain, and relieve the redness and itchyness on my arms and face. After the first one, she called us back in to see how it went, there was only a very mild pain relief, and my arms and face were both still itching. This is not what she wanted to hear. She then suggest I go for a muscle biopsy, where they remove some of the muscle under a general anaesthetic from my thigh, she also reccommended a plastic surgeon who was able to perform this, and it would also give a clearer confirmation of the diagnosis.

After another day in hospital and another general anaesthetic later, the results came back confirming inflamation in my muscles. I had the second and third dose of steroids before going back to the rheumatologist.She started me on the Dermatomyositis medication, immuno suppressants, which are meant to knock out your immunue system, so that it can be "re-built". The steroids still hadn't kicked in...

Whilst all this was happening, to add to all the enjoyment, the scar on my neck started playing up. It had grown a cyst and kept leaking (was disgusting) and wasn't healing properly. The rheumatologist who had seen it, told us to go back to the original ENT surgeon. He said it could be infected and gave me anti-biotics and told me to come back in two weeks. Two weeks had passed and nothing had changed. It was still leaking, and pretty horrendous in appearance. He then put silver nitrate on it, which is meant to help the healing.

Things then went from bad, to worse. I felt another lump under my right arm, and was rather uncomfortable to touch. The ENT surgeon and the rheumatologist both had a feel, and suspicions arose, thus sending me to a further surgeon who specialises in that area. He again had to hear the full story and gave me a thorough examination. He wanted to remove the lump under my arm, and said he could do it that very day. My third operation and general anaesthetic in three months, we returned to the hospital later that day with over night things knowing the surgery would be late. He removed two lymph nodes, one large and one small and said the surgery went well. He sent the nodes off for testing...

Tuesday, 15 November 2011

From the beginning

When I was living in Berlin last year, around February/March, I started to notice my hands didn't look right. Underneath all my finger nails on the skin were deep, red patches and what appeared to look like a rash appeared on my knuckles on both hands. I had arranged to come home to surprise my parents the following weekend as I hadn't seen them for three months, and whilst I was home, I went to see the GP. He took one look at my hands and was baffled. He gave me a couple of creams which he thought might help and told me to come back in a months time if they hadn't cleared. I went back to Germany with my new ointments and proceeded to use them for a month. Nothing changed and I had also developed itchy rashes upon both of my upper arms and my face around my nose and eye brows was also red. I then came home again for Passover and went back to the GP. Also baffled by my hands, he looked at my arms and said that it was Folliculitis, a common skin rash in young males, and prescribed me the normal treatment for this and also proceeded to refer me onto a dermatologist.

About a week or so later, we managed to make an appointment to see the dermatologist the GP had reccommended. We sat with him for a while explaining the "story so far". He wasn't the most talkative and was rather awkward. He ran some blood tests and told us to come back tomorrow. After a very nervous evening, we returned the next day to find the bloods were all clear. Phew. He did prescribe some more creams. He also arranged for me to have a skin biopsy above my left eye brow. I returned to Germany for my final month where I had taken up yoga a couple of month ago. I did however stop because the muscles in my thighs and arms started to really ache and it was quite painful to move and about a week or so before I was scheduled to finish my time in Germany, a large lump formed in the right half of my neck....

Back to the GP we went. He felt my neck, said he didn't think it was anything TOO serious and told us to go to an ENT surgeon, and also a rheumatologist about my muscles. Both appointments made. Back to the dermatologist for the first of what was many biopsies. He took some of the skin using a local anaesthetic and what looks like a tiny cookie cutter from above my left eyebrow and sent this off for testing.

Meanwhile, the rheumatologist had ordered scans on my neck, the CT scan came back inconclusive, so the radiologist performed an ultrasound where it was much clearer what was there. It was a lymph node and he decided to perform a fine needle biopsy. This involved a very large needle being inserted into the lump in my neck and extracting the fluid from inside to be sent for tests. By this point I was being called  medical phenomenon, and this is still very early days! Yet again, this came back inconclusive and we went to the ENT surgeon. At this point, they were talking about Lupus and Dermatomyositis, both rare auto immune diseases, also difficult to diagnose.

Also slightly baffled, the ENT surgeon performed a couple of tests, including shoving a telescope up my nose to have a look at the lump. He wanted to excise it for testing. A week or so later, I was back in the hospital prepped and ready to go for general anaesthetic one of three in three months. We were told the surgery would last around half an hour, and there should be little or no complication with around a 2cm incision Wrong. Nearly two hours later I returned from surgery. The mass in my neck was tangled around my jugular vein and carrotted artery, and the incision made was around 7-8cm. I stayed the night in hospital so they could monitor me over night. He came back and saw me the following day, saying that he thought it looked like TB. Off to the next doctor...

We met the chest physician who had been reccommended by my grand-parents next door neighbours, whose son had TB a few years ago. From what we had told him, and what the ENT surgeon had told him, he also believed it to be TB. He'd also ordered more blood tests and asked us to come back to his TB clinic to meet his team, the nurses, and start me on the medication ASAP, because he said that if it was TB and wasn't treated straight away, the mass in my neck would rupture and burst. The TB medication involved 11 pills a day, for around 6 months. Fun. I started the medication and waited for the test results to come back. Meanwhile, he wasn't happy with the tests the dermatologist had performed, and said the rashes on my arm were not consistent with TB and looked like nothing he'd seen before and suggested we see another dermatologist who he highly reccommended.

I think this is now consultant number 5 or 6... We went to see the new dermatologist, a very nice lady, who also wasn't very happy with what the previous dermatologist had done. She said my rashes definitely look auto immune, and the chances of having both TB and an auto immune disease was EXTREMELY rare. She wanted to perfom more biopsies and decided to biopsie some of the skin on my knuckle and on my lower arm. She did these the same day, both under local anaesthetic. She also prescribed some strong steroid creams for the rashes.

We went back a week later where she had the results of the biopsies, and they were confirmed auto immune rashes. This was one of the weirdest consultations to date. We were with her for nearly 2 hours, she was on the phone for most of it speaking to the labs who had performed the tests and other doctors. Another dermatologist was also brought in to look at me, as my case had seemed to puzzle many a consultant. Both her, and the TB doctor wanted me to see another rheumatologist who they both knew, to get a confirmation of the diagnosis for an auto immune condition, either lupus (which was looking less likely) or dermatomyositis.

More to follow