It’s been a while since I’ve written an update and it’s getting increasingly more difficult to find the time to. I thought I would have time over Christmas and New Year to do it but I didn’t, then I thought I’d have time to do it in Hong Kong but I didn’t, so I after much pondering, I’ve decided to call it a day and finish my blog.
I started my blog way back in September 2012 after my cancer diagnosis to help me, Ade and my immediate family. It was such a sudden diagnosis that we had trouble keeping up with what was happening, never mind coming to terms with it. It was actually Ade’s idea and the whole purpose was that it was a way to keep all our loved ones informed on what was going on without the need for them to come directly to us. The original purpose of the blog changed very quickly, it soon became a way for me to cope and get through the hell, but most importantly, it became a tool for other cancer patients, their loved ones, and even members of the medical profession.
If I’m honest, I didn’t think the blog would last, but when people started contacting to tell me how valuable the information and insight I provided was, I carried on, it then became one of the few things that kept me going. I found the blog therapeutic and it was mainly because I knew that it was somehow helping others. Cancer is really awful and if some good could come out of it, then I was happy to have made a difference.
I realised my blog meant something when I was nominated by several people around the world for the Lymphoma Association Beacons of Hope Award 2013 and won. I’ve read some of the submissions and it was really odd seeing words like courage and inspiration being used to describe me, they weren’t words I had ever associated with myself but it made me feel proud. It made me realise that writing the blog and committing to it was the right thing to do. I’ve somehow taken a really horrible period of my life and created something good.
I’m now 1 year and 8 months into remission and although I still have some ongoing health issue, there’s not much more I can add to my experience, hence the lack of updates. All I can hope for now is that my remission continues, so please hope with me and pray you never see me blogging about cancer ever again!
So now, I will sign off for the last time, at least on this particular blog. Thank you for all your kind words, your encouragement and the faith you had in me. Thank you for reading and being my audience. It’s now time for me to do what I do best, move forward, live and enjoy my life! I hope you all do the same too!
As usual, some recent random photos below for you enjoyment!
Much love and good health to you all!
Goodbye – 再見 – Sayōnara – Au Revoir – G’day – Hejdå – Auf wiedersehen..
Ade and I at BBC Sports Personality of the Year Awards 2014 in Glasgow
Big Bear Lake in California. Spending quality time with friends and Ade at the log cabin in the mountains Dec 2014/Jan 2015Santa Monica Beach, Southern California. Dec 2014/Jan 2015
Hanging out with friends on Sunset Blvd – Dec 2014/Jan 2015Thailand Jan 2015
If you really want to know what’s happening in my life, then you can follow me on Twitter @ – though I must warn you, I talk a lot of rubbish!
So.. I’m back in hospital as planned to have my second session of chemotherapy and as I’m sat here in my hospital bed, I’m listening to Metallica (Prince Charming on the Reload album if you’re interested) and willing the Rituximab to finish filling my veins. So far it’s been going for about 7 hours or so and I have another hour or so to go. My consultant said that a lot of patients get this administered in 2 hours so it goes to show how rubbish my tolerance is! For those of you who haven’t a clue what Rituximab is, it’s an antibody (one of the monoclonal antibodies) and is used as part of chemo treatments for cancers such as the one I have and has been around for around 10 years or so. What this antibody basically does is tell my body which cells are cancerous so it can destroy them, so even though it cripples me if administered too quickly, it’s actually my friend! I was meant to be staying in hospital overnight, but the doctors and we have pretty much decided that once the Rituximab has finished and my cannula is removed, I should go home to rest as I have a bit of an upheaval tomorrow.
As most of you know, I’m not the straight forward type of girl and that at times, there has known to be some kind of twist, today has given me that twist. From tomorrow onwards, my main consultant will change and I will no longer be treated at my local hospital, which is sad because I’m in one of the best hospitals in the area for cancer and the team here are amazing. But on the flip side, my care will be transferred to one of the leading hospitals in the country for cancer care – University College London Hospital Macmillan Cancer Centre (UCH). I’ve since found out that UCH is where my current consultant here trained at.
I was told of this transfer when I came in this morning, my consultant came to see me, then explained that his team and the team in London studied my notes, scans and test results and discovered that my lymphoma was more advanced than they originally thought. I’m not 100% sure of what they found exactly as the moment he said “more advanced” my brain started filling with dread, worry and worse case scenarios, but I understood that my DNA is involved and that there was an abnormality in the B cell which they found either poking around my bone marrow or the spinal fluid they took a couple of weeks ago. I also understood that I do have Non-Hodgkins but it’s a type that is hovering somewhere between Non-Hodgkins and Burkitt’s lymphoma. This means that the R-CHOP chemotherapy I’m planned on isn’t strong enough and that I will now be getting a different type and stronger chemotherapy which is best suited to targeting this type of lymphoma. My consultant explained the strength of this type is similar to what is used to treat leukaemia, he also said that this treatment isn’t widely administered due to the precision nature of the dosage required and that UCH being specialists in this field means I would need to go there for treatment. Well if that is the best place for me, I’m going in for the fight.
When I get to UCH tomorrow and see my new consultant who I incidentally met when I went for a visit last week, I will find out more about this type of lymphoma and its proper name for you. Maybe give a better explanation as to what it is.
So there you have it.. An upheaval before my second treatment even started.
Before I sign off for the day.. Update on my hair.. It’s continuing to thin but rather than being upset, it’s making my OCD at home worse.. I’m a clean freak so I’m constantly picking hair out of the carpet.. Oh dear.. My mum does that and I appear to be turning into her 🙂 I’m wearing my hair with my favourite scarf today which most of you know is my Alexander McQueen skull scarf, it actually looks ok as a hair band around my head, it’s certainly preventing me from fiddling with it which makes the hair falling out worse. I had my wig fitting yesterday and because I have a big bonce (head – to anyone not British), it needs to be stretched, but it should be ready next week.
46.9ml at 36ml an hour of Rituximab to go, then they can ‘flush’ the line (clean it out with saline solution), cannula out and I can go home and get ready for 2 days at UCH. It’s a stronger treatment so I will probably feel like hell for a week after that.
Wish me luck!
It’s been a funny day today and very busy. I had a hospital appointment at University College London Hospitals (UCLH) so spent a good part of the day in Central London. In a previous blog I briefly mentioned that my consultant at the hospital was sharing my medical notes with another hospital in London for a second opinion regarding my treatment. He felt that I may benefit from a stronger treatment to increase my chance of a cure and that my age and fitness means I will probably be able to withstand it. When I got the letter through the post about the appointment, Ade did some research on UCLH and it turns out that they are the leading centre for cancer in this country and that all their doctors and consultants are not only renowned in their field for excellence in this country, but also internationally too. You see this is what I wanted when I first went to the doctors 6, 5, 4, 3 etc months ago.. for someone to take me seriously and help me.
Anyhow, we travelled into central London for the appointment and it occurred to me at the train station that I hadn’t been on a train for exactly a month which means it’s been exactly a month since I was diagnosed with cancer. When we got to UCLH I was staggered by how amazing the facility is. The building is called the UCLH MacMillan Cancer Centre, all shiny, hi-tech and brand new. Very sophisticated and a far cry from the bland, sterile old hospital buildings I’m use to. I checked in using a fancy scanner and was pretty much told immediately that the doctors were 1-2 hours behind so I prepared myself for a long wait in a building full of very sick people. My name was called and all they did was move me from the ground floor waiting area to the first floor waiting area. After about 1 hour and 30 minutes, my name was finally called. The actual appointment lasted about 30 minutes, the doctor went through details with me as to how I was diagnosed, how long I had been feeling unwell etc. Then he went through all the notes and scans with me that my consultant gave him. He then showed me a frontal image of the PET scan I had before I started my first course of treatment and I was absolutely shocked by the extent of my lymphoma.
If you look carefully you can see that the dark round-ish area at the top is my head or rather my brain (Ade said – a big black hole for a brain – thanks love). You can see that either side of my brain my arms are raised. The dark area at the bottom is my bladder and there’s a couple of bits in the middle which are my other organs. Those dark areas I mentioned are soft tissue and fluids, hence why they are dark.
HOWEVER.. the other dark bits show the Lymphoma, or rather the cancer.
-On the right hand side of my neck as you look at the image, the dark areas are my enormous inflamed nodes which I complained to my original doctor about. These nodes were filled with the cancer/tumours.
-The dark blotches in my underarms are also lymph nodes where the cancer and tumours were present.
-Some of the dark shaded areas in my abdomen are also lymph nodes where cancer and tumours were present.
-Now here’s the shocker – the really large dark area on the right of the abdomen on the image is my spleen! (the left lighter shaded area is my lung) Yes.. my spleen. Bear in mind the spleen is about the size of a clenched fist, on this image, it shows that my spleen had swollen to at least double the size of my liver. No wonder I was in so much pain. It was pushing on most of my vital organs. The spleen is regarded as a gland and the biggest organ of the lymphatic system, and mine was pretty much riddled with cancer and tumours. I assume that was where 3kg worth of tumour was present.
After the doctor explained the PET scan to me, he gave me a physical examination and he was shocked how much my glands and nodes had gone down. He could barely find anything in my abdomen from the surface which is the first time in months a doctor hasn’t been able to and there’s a lot less fat to poke through this time!!! The doctor said that this was promising as it looks like my body is responding well to treatment. After the examination, he went through the details from my consultant and said that he has ranked my case to be at low to intermediate risk despite the fact that I have an advance aggressive form of stage 4 cancer which meant he was more than happy with my current treatment and that in his opinion, I wouldn’t benefit from a stronger treatment. He said those who are high risk would benefit. When talking about risk, low to intermediate is the likelihood of the cancer progressing or returning after treatment, and obviously high risk means chances are greater. He then went onto say that I should carry on with the treatment as planned and that after the 4th cycle, I should get another PET scan, and another at the end of my treatment to see if any of the cancer remains. The doctor then talked about the ‘what if’ scenario. He assured me that they have a plan just in case the cancer was still present, and a plan after that and a plan after that too. He touched on stem cell transplant as well, but said that he hoped that it wouldn’t come to that. The doctor also said that he will study my scans and notes with the board of doctors next week to discuss my case in more detail and assured me that if something different comes out of that, he would contact me, but otherwise, he didn’t feel that I would need a follow-up appointment with him, although I would be welcome to come back if I wanted to. He then gave me details of a specialist Lyphoma nurse I could call on anytime if I had any concerns or questions.
Ade and I left UCLH very impressed but also relieved that what was discussed was somewhat positive. Obviously we’re far from celebrating as I still have an immensely long road ahead of me, but hearing from a doctor at UCLH saying he was satisfied and made me feel a bit more confident about beating this. What was more positive was that he had nothing but praise and respect for my consultant too so I know I’m in the best possible hands.
When we left UCLH, Ade and I wandered around the west end before heading home for what I thought would be a relaxing evening. WRONG! My Uncle John must’ve just found out about me as he’s back home from working in Paris. He was so upset that he insisted on coming round, so before I knew it, I had what felt like half my family in my living room. He left feeling a lot happier that I appeared healthy and well, I think he just wanted to see for himself rather than taking my parents word for it. I love my family but seriously, they are mental!!!!
My hair.. I’m sure if you’ve been following my blog, you’ll know how upset I am about losing it. I’ve been terrified to wash it but after 3 days I can’t wait any longer, so after I post this blog, I’m going to wash it. I’m going to put the plug in the bath so the hair doesn’t wash down the plug hole and I’m taking a carrier bag into the bathroom with me to collect the hair. Today is day 3 since my hair started thinning and each day, more and more hair has appeared in my hand every time I run my fingers through, so I know for sure that a huge amount will come out tonight. I think once it’s all gone, I won’t be as upset, but the whole process of it coming out is really traumatic. As I said before, another necessary evil. So wish me luck. I will try and blog again tomorrow and let you know how it went.