.. that’s what my consultant called it. Getting shingles seems to be part of the long-arsed merry-go-round that I’ve been on for the past two years. Just when things were going swimmingly, I’m struck down with something. What I thought was intercostal muscle strain from a particularly tough training session turned out to be a case of shingles.
So, what are shingles? Shingles is caused by the same virus that causes chicken pox and it is an infection of the nerves. The infection causes a huge amount of pain and also pox like spots to come up around the affected area. Shingles is contagious, but only to people who haven’t had chicken pox so on diagnosis, I was once again imprisoned in my own home to recover from it and not to infect the vulnerable.
(CLICK HERE for more information on shingles and its causes)
The turning point was when I was on the train to work in Glasgow for the Commonwealth Games. The pain on the right side of my back, side and chest got so unbearable that I had a breakdown on the phone to Ade. He convinced me to get off at the next station to seek medical help. I didn’t want any old doctor seeing me, I wanted to see my consultant as he knew about my condition and also because I have a distrust of doctors in general. So when I got to Warrington, I got off and caught the first train back to London. When I got there, I went straight to UCH where Ade met me to see my consultant. After an examination, he said I was in the early stages of shingles. As soon as he told me what was causing the pain, I immediately felt better and he did spend some time convincing me that the cancer hadn’t come back. I left the hospital with a bag of drugs:
Valacyclovir – a super strong anti-viral drug which helps fight off shingles.
Amitriptyline – this is an anti-depressant but prescribed to prevent nerve damage.
Co-codamol and Ibroprofen – strong painkillers.
Two days after seeing my consultant, I started developing pox like spots on my back and abdomen. Luckily the anti-vitals prevented a huge outbreak, I only had about 30 spots in total and most of which have now gone.
Nearly two weeks on, the bulk of the pain has gone and I’m just left with some residual nerve pain which I hope will disappear in time. I’m going back to work tomorrow and hopefully I can start my triathlon training in the next week too. I’ve been away from physical exercise for nearly three weeks and I’m starting to feel twitchy!
As the shingles came along at the most inconvenient time (not that there is a convenient time), I’ve had to withdraw from my first post-cancer triathlon, but I’ve already rebooked to compete in the Eton Dorney sprint on the 6th September. I made a commitment to my donors and pledgers that I will compete for Cancer Research and the Lymphoma Association, and I’m keeping that promise. So those of you who want to support me, you can still do it. Please CLICK HERE to do so 🙂
Aside from the shingles, my iron levels are still far too high, so I need to have a few more venesections – where I need half a litre of blood drained out of me every 3 weeks or so. This is what half a litre of blood looks like:
But apart from the health issues, I’ve had a good summer so far! Here’s a few photos of the summer for your viewing pleasure:
Wow.. Two blogs in one week! Last time I wrote two in such a short space of time, I was probably very ill, but not this time.. I’m using this entry as a shameless plug!
Since the start of my journey, the one thing that has stayed consistent is the overwhelming support I’ve received from everyone. Not just those who know me, but amazingly, those who have stumbled upon my blog – be it fellow cancer patients, friends/family of patients, medical professionals or simply those who took an interest. The thing that really inspires me is reading the comments and messages left for me saying that I’ve made a real difference. Whether it’s supporting them through their journey or simply raising awareness. I’m now at the stage where I can ramp up my quest to raise more awareness and I’m going to do it in a way that people will recognise it as being ‘very Kat’.
You see when I was really ill, I remember lying in the PET scanner clutching a jade Buddha tightly in my right hand praying in my head. I made a promise that day that if I came out the other side healthy and cancer-free, I will do something to help others as a way of redemption. So here I am, keeping my end of the bargain.
My next challenge is to go back to what I love doing most… Triathlon!
On the 2nd August, the weekend of my birthday, I will be swimming, biking and running my way to another goal at the London Triathlon in aid of the Lymphoma Association and Cancer Research. These two charities have helped save my sanity and my life. If you want to help others like me and give me a bigger incentive to storm this triathlon, please sponsor me! I know in these austere times, money is hard to come by, but even a tiny amount will go some way in helping many others affected by this awful disease. Remember, cancer is a bitch and it doesn’t discriminate.
So if you want to…
Feel free to tweet, email, forward.. etc.. Let’s nail this together!
“If I start to come undone stitch me together” – The Outlaw Torn by Metallica
I can’t believe it’s been a week since I last blogged. The past 7 days although haven’t passed that quickly for me has kind of melted into this one pain-filled frustrating hell.
I was warned by my consultant before my transplant that I would probably face some horrific side effects and some rocky times ahead before my donor cells graft and my blood counts to start going up. Some of the side effects include:
-Mucositis – this can happen anywhere along the digestive tract and at times it can affect more that one area at a time. Its characterised by pain and inflammation on the mucous membrane that in effect protects the digestive tract.
-Fevers – usually an indication of a secondary infection.
-Skin problems like dry skin, irritation and sensitivity
-Nausea and sickness
I’m now day 9 post-transplant and my neutrophils have been zero for days now and so far I’ve suffered (still suffering) from mucositis, fatigue and skin sensitivity. The nausea has passed now but I’m still on anti-emetics as I’m too scared to come off them completely in case it comes back.
The mucositis I have is the most debilitating of the my side effects. I have it in my mouth and my throat. A few days ago it got so bad I could hardly talk, let alone eat or drink. I was immediately put on a fluid drip to keep me hydrated and I started taking my medication in IV form. The feeding tube that I had inserted was poised to be used, except one of the nurses who was looking after me managed to block it when they attempted to use it. That day, the nurses spent hours trying to unblock it before I was sent to the Endoscopy department for a scan and to see if the team down there could unblock it. The blockage was in the stomach part of the tube and despite their equipment and their efforts they were unable to unblock it so the tube was removed. They couldn’t put another one in as my throat had gotten too swollen for the procedure (thank God). As I couldn’t eat and had no feeding tube I went without food for two days, by the third day, I was so hungry that I asked for a stronger dose of morphine and then forced down 250ml of soy milk to curb the crippling stomach cramps. It was incredibly painful but after I’d done it, I knew that I could do it again. Today my mouth and throat is still in agony and I’m still forcing food and drink down, I’m focusing on the fact that a quicker recovery requires some kind of nutrition so hopefully the trauma of it will be worth it.
I tell you what has really pissed me off, I hated that feeding tube from day 1, it has been uncomfortable and a complete burden. I had it in for two weeks and when I actually needed it, it was broken. Grrrr…
The other nasty side effect I’ve had is extreme fatigue and I can honestly say I have never felt anything like it. I’ve had my fair share of tiredness in the past from staying up all night partying, staying up all night completing university course work and from traveling, but that was nothing like this kind of fatigue. Not only have I been physically tired, mentally as well. For the past week all I’ve wanted to do is sleep and when I’m not asleep I’m usually very drowsy and feeling spaced out. For example – today, I’ve slept on and off all day and right now I feel like I’ve been awake for days. The frustrating part about fatigue has been my memory and my inability to think straight, sometimes I would say or sing something completely random and I have no idea why. The fatigue has affected my movement too. At times I have struggled to walk as my legs have randomly turned to jelly, this usually happens in the middle of the night, but perhaps the worse is that I can’t shower without any help at the moment. The last time I showered on my own, I came out and had to lie down to catch my breathe and slow my heart rate down, it felt like I had been for a run and left me even more exhausted, so the last few days, Ade has helped me shower. My consultant said it could take weeks and even months to regain my strength and fitness back after the transplant but encourages me to try and keep active as when I come out of hospital, that will help me recover quicker.
Despite the above, I haven’t really displayed any other side effects though it can still happen. My consultant said so far I am doing very well. A lot of patients are a lot worse than me and some have ended up in intensive care. I really hope that doesn’t become me and that I can get through this as unscathed as I possibly can. My counts are expected to come up after this weekend and when they do, that will be my new immune system doing it. My neutrophils are currently 0 so when it goes to 0.01 I will be so happy as it would mean the new cells are grafting and new immune system is growing.
Anyhow, I’m still plodding along and trying to do everything I can to make me better and recover. I haven’t had any meltdowns in a while and I put that down to all the positivity I’m feeling and the great vibes I’m getting from my friends and family. Don’t get me wrong, there have been tears, I was in tears a few times this week through all the pain but as usual Ade was able to pull me together.
So keep your healing vibes and encouragement coming, I’m sure my body is feeding off all the positive energy and it’s helping me stay optimistic. The light at the end of the tunnel is getting brighter and I can almost smell the air.. Kind of.. God I hate air conditioned rooms!!
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!
Last weekend was one of the best weekends I’ve had in a while. I didn’t do anything out of the ordinary, but it made me forget I have cancer. After a turbulent week of feeling like crap, I had energy, felt good and happy. My parents commented on how it was like having the old Kat back again. This had a knock-on effect on my parents too, it was the most normal I seen them in a while and they didn’t give me that ‘concerned’ look once! On Saturday, I went out for lunch with Ade, mum, dad and my aunt. We ended up spending a lovely day together eating loads and hanging out. On Sunday, Ade and I were invited round to Ade’s friends house for Sunday lunch, we ended up staying there till late in the evening, again just chatting and playing with their adorable dogs (photos at the bottom). Not my trademark rock and roll weekend, but a valuable one.
On Monday, I drove into London for my blood test. I was desperately hoping that my neutrophils were above 1 so I could stay at home, but when the blood test results came back, I was really disappointed to see that they had plummeted to 0.45. I was then told I had to be admitted to the ward for observation until my counts returned to normal.
To give you a bit of context about neutrophils, a normal range is 2.5 – 7.5. Anything below 0.5 is considered to be severe neutropenia. On Monday, mine was 0.45, Tuesday 0.4 and today 0.5. The levels are detected in a normal full blood count blood test which I will have daily now until I’m allowed home.
After I got my blood test results, I drove home and packed, then Ade drove me back to the hospital in the evening. He left at 9pm and I haven’t seen him since. Ade woke up the following day with a bad cold which put me in a bad mood all day because I knew with my lack of immune system, I wouldn’t be able to see him. It’s now Wednesday and he said his cold is starting to go, so I’m hoping and praying that by tomorrow it will be almost gone. If by the time I’m out he still has it, I will probably have to stay at my parents house until he’s well.
Being here alone can be difficult, mainly for reasons of boredom. But right now, I really miss Ade’s company, I know it’s only been a couple of days, but it feels like a week, I just want a big cuddle. At the moment, I’ll settle for any company!! The complimentary therapist came round this morning so I had some company for an hour and relaxing reflexology. Then at lunchtime, I had my room cleaned so had some more company. There have been times in here where I’ve felt so lonely that I’ve looked forward to the daily room clean just so I can have some kind of human contact, but the thing is, one of the regular cleaners looks like a zombie (she’s lovely though)! She has big dark circles under her eyes with a sallow complexion and occasionally I do envisage her trying to eat me!!!
On that bombshell.. Here’s a photo of the dogs I spent Sunday playing with! Please pray that my immune system returns to normal quickly so I can escape from the asylum before the Easter weekend.
Love to you all x
Ambulatory care is a nice calm environment, but if like me you’ve been spending more time there than anywhere else in the world, that calmness turns to boredom (occasionally despair) then it becomes an aggravation – hence the title of this blog. Ambulatory care has pretty much been an aggravation more so this week than any other despite it’s calm and vanilla surroundings. As you’ve read in my previous blog, Monday didn’t start well with all the delays meaning I got my chemo a day late, but yesterday took the piss – so to say. I was finished with all my treatments by 2pm but was told I had to wait for the doctors and consultants to do their ward round, I was told they would be with me between 2pm till 4pm. I was hoping they would see be around the 2pm mark as I was really keen to go for a walk. Since the weekend I’ve been feeling really grumpy, lethargic with my legs feeling like jelly and I figured it was because I hadn’t done any exercise – so imagine how annoyed I was that at 5.20pm, the nurse came to tell me that the doctors had forgotten about us and that there wouldn’t be a ward round?!? I wasn’t furious but I was miffed. By the time Ade and left the hospital, it was dark and we had to rule out a walk around Regents Park, instead we walked around backstreets of Regents Park. I was exhausted after an hour of walking but my legs felt the best they had done in days, they were no longer aches or jelly like.
Today was another pain in the arse. I got to ambulatory care early to get started on the chemo and when I got there, the nurse told me that the first part of my chemo was delayed because someone had put the Etoposide chemo in the chemo fridge despite the big yellow label on the bag saying ‘STORE AT ROOM TEMPERATURE’. When the nurse found the chemo in the fridge, she ordered a new batch to be made up for the afternoon. When I eventually started the chemo in the afternoon, the doctor who was meant to do the ward round yesterday turned up. He at least apologised for forgetting and all the patients he was meant to see got a box of posh chocolates as a way of an apology. I managed to just about get all my chemo done in time for my methotrexate intrathecal injection (chemo being injected in my spinal column to protect the brain). The spinal tap today was actually quite painful, this was the 4th or 5th one I’ve had since I was diagnosed and the local anaesthetic was the most painful yet. After my spinal tap, the doctor told me to lie down for a while and take it easy for the rest of the day.
When I left the hospital I did ponder about staying in my room and relaxing, but the thought of that depressed me. My mood this week after all the upheaval in my treatments, the side effects of the chemo and tiredness has left me feeling somewhat melancholic and I decided to go and occupy my mind and get some air. Sitting in my room watching repeats of ‘Man Vs Food’ would have made me feel worse and given me more time to think about how shit everything is. I ended up walking towards the direction of the British Museum and when I reached the entrance of this impressive building I decided to go in and have a look around. It’s been several years since I been there but I knew there were several free exhibitions in there. I spent a fair bit of time wandering around and having a good look around before I realised that I had probably overdone it a bit. It wasn’t until I left the Asia section of the museum I felt I needed to sit down, so I left the museum and headed to the Starbucks across the road from the front gates and had a big cup of English breakfast tea before making the walk back to my room.
Not long after I got back, Ade came back with dinner. Unfortunately, like other chemo cycles, my appetite has been terrible. My heightened sense of smell is now back and I can no longer walk past a restaurant or take away shop without my stomach turning at the smell. I’m still able to eat but just very plain food, this evening I could only stomach plain rice and a bottle of coke. Coke seems to be one of the few drinks that settles my stomach. I have my last day of chemo tomorrow and I really hope that the side effects will bugger off quickly after that. Good news is, I should be allowed to go home tomorrow afternoon for a few days until my immune system starts taking a dive, once they do, I have to come back in for observation.
Here’s what I plan to make more of when I get home..
Here’s what I’m hoping will be waiting for me.. (Obviously I’m going to get a pair and not just one shoe)..