Anniversaries as we know them tend to be occasions to mark and celebrate something joyous, or at least that’s what I use to think. But what I’ve discovered is that once you been through a life changing trauma, anniversaries serve as an awful reminder.
Today, the 28th of August is an anniversary for me. One I wish I could forget but has haunted me for exactly two years, the day I was told I had cancer. I still remember it like it was yesterday. I remember when I was given the diagnosis, I remember the excruciating walk out of hospital, I remember phoning Ade from the car – the hardest phone call I have ever had to make and I remember breaking down like I have never broken down in my life. I remember going to my parents house to break the news to them that evening, I remember the look on their faces and I swear I could hear the sound of their hearts breaking. To this day I can remember every single detail and sometimes when I close my eyes, I’m forced to relive it and feel that same pain all over again.
There’s a common misconception that if you’re as lucky as me, you come through and all is good again, but this awful disease leaves a legacy that you never get over. It’s like a death of a loved one, you never get over the trauma, it becomes easier to live and deal with. I’m ok now, I have my moments, mainly due to the consequences of the treatment I’ve had, but I’m handling it much better than I thought I ever would. But for my family, particularly my parents, it has taken much longer. My mum has been so strong and she still does so much for me to make sure I’m not overdoing things despite the fact I’m working full time and I’m back to being active – she treats me as if I’m made of glass. My dad still blames himself for my illness. It’s so irrational and off course it’s not his fault at all, I was just unlucky but I understand why he feels the way he does. Cancer doesn’t discriminate, it doesn’t matter if you’ve been a bad person or a saint all your life, it will get you if it wants to. But for someone like my dad, he struggled with the ‘why me’, he needed a reason as to why I was the one who got ill. I remember the day after I told my parents, I was admitted to Accident & Emergency at Southend Hospital, my dad came into my room and broke down, he kept saying that he had been a bad father and that he shouldn’t have disciplined me as a child, he should’ve been nicer to me and paid more attention to me. It broke my heart to hear him say that and to see that he believed what he was saying. I had an amazing childhood with the best parents anyone could have, but this is the nature of such an evil disease, it didn’t just screw me, it screwed my family as well.
It’s taken a while, but two years on, I have beaten cancer. I’m in a much better place now with a better outlook on life. My family although scarred, have recovered too. The ghosts are still there but we’ve all learnt to accept that they will never completely go away. I’ve just got over a nasty chest infection (turned up just after I got over the Shingles) and I feel fantastic. I had my best pool session in over two years, and I’m on course to do my first post-cancer triathlon next week. At the end of September, I should be exorcising the ghost that is the Ealing half marathon – the event that I had to withdraw from in 2012 as I was having my first ever chemotherapy treatment.
So, although this is an anniversary I wish I could forget, it’s here to stay but I’ve marked it by being “normal” (don’t laugh). I went to work today, I had a great session in the pool and I’m ALIVE!
As usual, I’m finishing this entry off with a few photos, but not before I thank my amazing family and friends for getting me through the last two years. Special thanks to my husband Ade for being with me every step of the way, to the donor who gave me a second chance by selflessly donating their stem cells to me, for my employers at the BBC for having faith that I would recover and return to work, and also my personal trainer for helping rebuild my strength, fitness and confidence.
I’ve decided, I’m going to be like the Queen and have two birthdays.. My official birthday which is the 4th August and a birthday on the 23rd March to celebrate my transplant.
It’s been two days now since I had the stem cell transplant and I guess I had better update you guys on how it went. The doctor said to me beforehand that it’s usually an anticlimax as the procedure is so simple and straight forward for a major organ transplantation, but to be honest, I think I felt too unwell and crap to even notice.
After my last session of radiotherapy, I was wheeled back to my room to start all the pre-medication. I was given an IV of steroids, a couple of paracetamol tablets and an IV of an antihistamine called Piriton which made me feel like hell. Piriton can knock people out but for me, it makes me feel incredibly drowsy but doesn’t allow me to sleep. After a short period, the bag containing the donor stem cells was attached to a line in my arm. The donor stem cells itself is infused with an monoclonal antibody called Campath, this is in the bag to suppress the ‘T-cells’ to prevent Graft Versus Host Disease (GVHD) which is where the body reject the cells. We all have T-cells in our body and these can be found in our white blood cells, they are a crucial part of the immune system and their job is to attack cells and destroy them – but in my case, the donor cells will not recognise my body and could start attacking cells they don’t recognise which is why they need to be suppressed until they get use to their ‘new environment’.
Anyhow.. After the pre-meds I was given the transplant. It should’ve only taken 15 minutes but it took over an hour as I reacted to the Campath in the infusion. The transplant had to be stopped after a few minutes as I had difficulty breathing. It felt as if someone had sat on my chest. The nurses administered hydrocortisone and more piriton to curb the reaction. After a period of about 15 minutes, my breathing improved and the transplant continued. However, not long after, I had another reaction and the procedure was halted again. The nurses put me on oxygen to try and steady my breathing, then I started wheezing and a steroid was added to my oxygen. After another break of about 20 minutes, the transplant started again and this time, completed. The team of nurses stayed with me for some time after the transplant but fairly quickly, my vital signs returned to normal. I spent the rest of the evening feeling like hell, but relieved that it was over.
Now it’s a matter of ‘watch and wait’! Although I’ve now had the physical stem cells, the actual transplant is ongoing. It will take another ten days or so for the actual grafting of the cells to take place. The grafting is basically when the stem cells actually embed in the bone marrow and start creating new blood cells – this is usually the point where the donor immune system starts to replace my immune system. The grafting is a really crucial period as this is where I will be most at risk of GVHD. For a period of three months after transplant I will be on an immunosuppressant drug called cyclosporine, then I’ll gradually be weened off them and it is then I can realistically start getting my life back together again.
Some of you are probably wondering what the benefits of a stem cell transplant is and why I need it. I need it because my own immune system failed and the cells started mutating causing cancer. To stand a chance of a cure, I need to kill off my immune system and adopt a brand new one. The theory is, the new immune system will be healthy and able to identify bad cancerous cells present in my body and kill them off. I can safely say that without this, I stand no chance of life at all. And it’s for this reason that whilst there’s no guarantee that this will work 100%, I will forever be grateful for my donor. I have no idea who my donor is, where they are from and what makes them tick, but they have restored my faith that humankind can be incredibly amazing and kind. Donating stem cells is an arduous tedious process and for someone to do that for a complete stranger makes them a saint in my eyes – I owe my life to them. And although I’m not out of the woods yet, it doesn’t change that. I’m expected to get quite ill over the next week or two from the effects of chemotherapy, radiotherapy and the transplant – it’s normal apparently – but despite that, I can see that beacon which tells me that the end of this hell is in sight. It’s been over nine months now since this fight started and I really do feel like I’m winning it.
Please keep your healing vibes and prayers coming, I still need you guys. The next few weeks will be rocky but I can get through it with your help.
I’ll end with some photos for you!
This is what stem cells look like!!!
Ade said to me before I was admitted this time around that he would buy me a present for every week I’m here! This is what he bought me for week two and I LOVE it! He knows I love Skulls, I have skull jewellery, the iconic Alexander McQueen skull scarf etc.. And somehow he found me a feminine skull bracelet! My husband truly rocks!
Day 5 of my stay in hospital and I can hardly believe how slowly the time is going. I want to fast forward 4 weeks so I can catch that glimmer of light at the end of my treatment. I know after the treatment I will need care at home for a fair few weeks but at least I be able to do the things I love or at least be closer to being able to do it.
The transplant procedure is long and tedious. Before I have the actual transplant, I’m put through a course of high dose chemotherapy and radiotherapy (or total body irradiation). So far I’ve had 4 days of chemo, I have another day to go and then the radiotherapy which will probably be the thing that completely screws the life out of me.
On transplant day, I will also get an antibody called Campath which the nurses think I will react to, so I’ve been warned I will have a rough night.. Lucky Ade will be here for that. There’s nothing scarier than reacting badly to a drug alone.
It’s been pretty uneventful since I been in, I’ve been poked and prodded by various doctors and had a feeding tube inserted which I’m less than pleased about. Apparently the radiotherapy screws patients so much it zaps their energy and causes the mouth to swell up causing mucositis. If you remember my previous blogs, I’ve had it really bad all along my digestive system but what they worry about most is what happened to me over Christmas and New Year where I was so ill I couldn’t eat or drink for 8 days, I got incredibly frail and thin. They are confident that if this was to happen again, the nourishment I’ll get through the feeding tube will help me recover quicker than if I just starved like last time, and may help prevent me losing all the weight I did back then. The tube itself is awful, I absolutely HATE it. The doctors and nurses have said that I will get use to it but more than 2 days on I still hate it. It’s a plastic tube that is inserted through the nostril and fed into the small intestines. The procedure itself was meant to be quick but guess what? I’m bloody awkward, the doctor couldn’t get the tube in properly and had to re-insert another one and then the inner tube got stuck and they had to pull it and it kept catching, it was so painful that I think I almost tolerated the bone marrow biopsy better. Now I have it in, the tube presses against my nose which is so sensitive and I have that ‘just about to sneeze pressure’ all the time. I can feel the tube down my throat all the time and eating anything solid pulls the tube downwards creating a really nasty sensation from my nose down towards my oesophagus. I’m on numerous tablets a day now and the larger ones get stuck in my throat to the point I have to choke them out, I’m now having to break them down as the tube is impeding me taking them. I have to have this tube in until I leave the hospital so now adapting my eating to very soft food and soups. I tell you what, the moment I’m out, I’m going to have a huge chunk of dead animal.. I will be craving it after 5 weeks or so.
Apart from raging about this feeding tube, I was raging at the nutritionist/dietician or whatever she calls herself. She’s the same one that constantly preached ‘Build Up’ beefcake shakes at me. When she was asking about my tube she actually said she knew it would be unpleasant at first and that patients get use to it and that she knows how I feel.. Does she? Does she really?!?!?
Anyhow, rant over. I’m just a bit riled up about it all, to be having a feeding tube is like losing control and I hate that. At the moment, there’s not a lot I have control of in my life and sometimes I feel that gradually I’m being consumed with everything to do with this illness, there’s nothing left to decide and do for myself anymore. I keep telling myself I have to do this to regain control again. I looked at myself in the mirror earlier on and thought to myself that I have never felt so unattractive in my life. I have dark circles under my eyes, skin has got darker from the chemo, peach fuzz as hair and a nasty looking tube coming out of my nose. I’m not saying this to seek compliments or anything and I’ve spent my whole life thinking I fell out the ugly tree but this is different. I would have my ugly tree days back in a heartbeat and appreciate that I was ok looking than have to look back at this image everyday. I guess the one thing this illness does do is enlighten you with a bit of perspective and that all the worries I had before all this weren’t important at all. After the treatment, I will carry this with me and embrace it.
Right now I need to get through this. It is tough given the risks but I need to regain control of my life and be healthy once again. Here are the issues that are a worry to me:
-20% chance of death – usually happens in the period after the transplant or the 3 months thereafter.
-Graft v Host Disease – where my body can reject the transplanted stem cells
-Infertility is a certainty (if not already)
-Catching a virus post transplant
-I’ll be at a higher risk of secondary cancers
There are loads more but those are the ones that worry me a lot. But my consultant has assured me I’m in the best care and they know what to look out for.
I can look on the bright side though..
-There’s an 80% chance I won’t die.
-If my body does show signs of Graft v Host Disease, the doctors can do something about it.
-Not being able to have children means holidays when we would like, not worrying about schools, saving for university fees, that awkward talk about sex, children going off the rails etc.
-Doctors can do something about viruses.
-Doctors keeping an eye on me more so if cancer does return they can catch it early or I may not get it again.
-I may not get depression because my friends and family are awesome.
I like the bright side much better!
I have much more to write about in terms of the transplant, but I’m here for a while so I’ll save that for another day. I just wanted to run with my mind today.
Thanks for reading! Love to you all and stay safe xxx
The lymphoma has shrunk to the point that I have very low levels which puts me into partial remission! This means that I get my stem cell transplant which will go ahead next week. It’s going to be a super aggressive tough procedure which will require weeks in hospital but it’s a step towards recovery I hope.
So I guess it’s happy anniversary to me and Ade today! I’m waiting for the dreaded bone marrow biopsy now but it’s a small price to pay for progress.
Tomorrow, I have an appointment with the radiotherapy team as I be having 8 doses of total body irradiation next week. I even get a tattoo for my troubles – unfortunately it will only be dots for the purposes of alignment and not a design of my own choosing!!
On that bombshell, I just want to say thanks for all your support and prayers. I’m not out of the woods yet but it’s a step in the right direction.
I’m home again!!! 🙂
Ade finds it amusing that every time I leave hospital, I always walk out of the building humming The Great Escape theme tune, but to me, that’s usually the part where my mood lifts and I start feeling a lot happier knowing I would be spending my time at home instead of the confines of a sterile hospital room. Since my great escape last Tuesday, I’ve enjoyed pretty much every moment of ‘freedom’ hanging out with friends and family.
I’ve only teetered on the emotional knife-edge once (so far) in the last week so I’m feeling quite proud of myself. My slight wobble was merely a pessimistic conversation I had with Ade. We were talking about my PET scan next week and how anxious I am about the result. Ade tried to reassure me that if the scan came back showing that my last chemo hadn’t killed the cancer, my consultant would have another plan and that it wasn’t the end of the road for me. I had a lapse in focus and all I kept thinking was that I wasn’t sure if I could cope with any more treatment and how I really didn’t want to become one of those patients who spend the rest of their lives fighting cancer. I then started questioning whether I would want to be buried or cremated, then tried to make Ade promise that after I had gone, he would carry on living life and not give up. It all got pretty depressing and I ended up feeling quite selfish for making Ade feel sad by thinking out loud. The odd thing about this particular wobble was it didn’t manifest itself into a full scale meltdown and I’m sure it’s because with the help of friends and family, I’m starting to cope better with the mental side of this illness.
Before cancer I always thought that it was the illness that screws you (well I guess it does if it’s left untreated) but it wasn’t until I started treatment I realised it’s the chemo that makes you suffer physically. It’s through this suffering that after a while it starts playing with your mind and your mental capacity to think straight. I can now completely understand stories I have heard where patients just want to give up and die because their suffering has left them with such a poor quality of life. I’m not saying I’ve wanted to give up and die, but I can relate to how lonely this illness makes you feel and how easy it is to go down that slippery slope. It just goes to show how no one should have to go through cancer alone and the sad thing is, plenty of people do.
In the past week, I’ve spent a lot of time with close friends and family. Not only have they kept me occupied, but they have made me feel more positive. They’ve reminded me that there is a place in this world for me and that I have so much to look forward to. For example, a friend told me yesterday that I’m missed at work, I had lunch with family including my grandparents who are over from Hong Kong and we talked about my next visit there, today I spoke on the phone to my brother-in-law and sister-in-law about their unborn son and next weekend Ade and I officially become godparents to a friends baby boy. I need to remember all this the next time I feel like crap as it’s so easy to regress into a negative state of mind, in fact to help me, I’m going to list all the things I have going for me, maybe I’ll share it with you in my next blog!
I’ll finish this post off now by saying that if you know of anyone with cancer, reach out to them, send them a message to say hi and let them know you’re thinking of them, because trust me.. It makes the world of difference to how people like me cope when you know there are people out there who care. I’m one of the lucky ones, I have friends and family who tell me on a daily basis, but there are so many cancer patients out there who don’t have what I do.
Way back in September last year, I started this blog to keep people informed of my progress and to document my fight. I have always said that it will be a ‘no holds barred’ blog and 100% honest, otherwise what’s the point? Before I started writing regularly, I was online all the time trying to find information of chemotherapy treatments, symptoms and personal experiences from those who have been there before, and although I had some success, to this day there are some areas where people just don’t tend to openly talk about. So I vowed I would no matter what and so far I’m happy with my honesty especially having read some of the comments from others thanking me for the insight and advice. I’m not embarrassed at all, after all, I’m now into my 8th month of hell and any dignity I did have has long gone now, I have nothing to lose!!!!
This brings me onto the subject of this blog, I must warn you that it’s one of those ‘too much information’ blogs. So if you’re prudish or just rather not read about really grim things people don’t tend to talk about, close this page right now!
Today is my 9th day in hospital and besides the intense boredom, I’ve actually had quite a rough time. I haven’t had any treatment and was actually brought in as I was neutropenic which makes me very vulnerable to infections that could potentially kill me. Being here means that the doctors can keep an eye on me and watch for signs of infection (neutropenia usually occurs around 10-14 days after chemotherapy). On Wednesday afternoon my temperature went up to 38.5 degrees celsius. As a result of the fever, I was given antibiotics through an IV drip. These antibiotics cover a range of bugs so it was hoped that it would work on clearing whatever it was that was causing the infection. Subsequent test results from blood cultures showed I did indeed have a nasty bug.
There’s no way of really telling without further tests where the infection originated from, but on this occasion, I’m quite confident it was from issues I’ve been having with my digestive system as these symptoms started the day I got the fever. Now this is the nasty ‘too much information’ bit. Chemotherapy drugs kills off bad and good cells, it leaves the body exposed to the elements – In my case, the final part of my digestive tract – rectum and anus. As with mucositis of the mouth and oesophagus, the protective membrane in effect has gone and causes immense pain when you go to the toilet (imagine passing glass when you go to the toilet) and due to the fragility of the tract, the lining tears causing fissures which leads to bleeding and indescribable pain. For a healthy person, fissures usually heal on its own and causes no problems, but for someone like me with low/no immunity, low platelet and white blood cell count, it doesn’t. This becomes tricky not least because it leaves me exposed to catching nasty infections and causes prolonged pain.
Between Wednesday and yesterday, the pain was so intense that I was put on morphine to manage it. I suffered from bleeding on Wednesday, Thursday and Friday and on those days, the pain was so debilitating I couldn’t sit or lie down, even standing up was painful. On Wednesday I was so frustrated with the pain and not being able to sit down I wound myself into a state and ended up on the phone to Ade in floods of tears, I was so upset I was pretty much indecipherable as well as inconsolable. He was so worried about me he left work straight away to come to the hospital. When he got here, he found me on the bed curled into a ball still in tears trying to sleep away the pain. That same day, I had the indignity of having my arse examined by the doctor who said that the good news was, I didn’t appear to have haemorrhoids but the bad news was, that whilst my immunity was non-existent there was nothing they could do for me except to try and manage the pain. I was prescribed morphine regularly which took the edge of the pain and enabled me to sit and lie down. After a few days, the pain intensified again, I’m not sure whether I was getting use to the morphine or whether the symptoms had got worse, but it led to two nights of no sleep with Friday night being the worse where I spent the whole night pretty much in tears from the pain. By Saturday I was so depressed that Ade asked the nurses whether they could give me more painkillers. On advice of the doctor, my dose of morphine was doubled and I was given paracetamol as well which did the trick. The doctor reassured me that once my neutrophils started growing, I should start to feel better fairly quickly.
Today I’m a lot better. The last dose of morphine I had was well over 12 hours ago and I’m almost pain free. The doctor this morning said that my blood test showed my white blood cells and neutrophils were on its way up. My platelets were slightly low so I was given a platelets transfusion earlier today.
Last week was pretty horrific, I can honestly say that the pain caused by the fissures was probably one of the worse and most debilitating pain I’ve ever had and trust me, I’ve experienced some horrors over the course of my treatment. It wouldn’t have been so bad if the pain only lasted a few minutes but it lasted days. Why I’ve only learnt about anal fissures now is beyond me considering how common it seems to be, not just with cancer patients, but with everyone. Since last week, I’ve learnt that at least 4 of my close friends have had them or are currently experiencing it long term. As I said earlier on, it’s because no one talks about it, it’s a ‘taboo’ subject. Stupid really.. People are willing to talk about the pain of childbirth, menstrual pain etc.. A pain in the arse isn’t any more embarrassing or unusual.
To end with, here’s a picture of a unit of platelets. A few of my friends have recently asked what they look like and how I get the transfusion. They are transfused the same way as blood (via IV).. After all, platelets are found in your blood! This picture shows ‘A positive’, my blood type is actually ‘O positive’ but O pos can take A pos platelets!!