… sang James Hetfield some 11/12 years! Although I’ve stolen these lyrics from a song called The Unnamed Feeling, it pretty much summed up how I felt in the waiting room yesterday waiting to see my consultant.
My consultant was running about an hour late and that extra hour of waiting was probably the most agonising wait I’ve ever had to endure. I’ve had 9 PET scans in total over the last 2 years so I should be use to it, but the truth is, the more I have, the more anxious I get. Each scan seems to be more and more important.
In that hour, so much went through my mind. I was kind of aware that it was manically busy but in my mind, I managed to conjure up a different scenario. For example, I saw my stem cell nurse who has spent a good couple of years looking after me dashing from one place to another. She didn’t make eye contact with me or say hello like she normally would and she just looked so serious. Instead of seeing that she was incredibly busy, I read that to be that something was wrong with my results and she couldn’t look me in the eye. It’s completely irrational but at the time, in my mind, it made sense.
When I was finally called in, I was a wreck, I felt sick and I knew the moment I stepped into the office my consultant could see that. I was sat in a chair opposite her hunched over with my shoulders slumped as if I had a tonne of weight on them. That weight lifted completely when she told me, “the scan was good, it’s all clear”. The moment she said that, I sat up as if that weight had fallen off and I couldn’t stop smiling. I wanted to jumped up and do the Snoopy dance and punch the air and now I think of it, I’m not sure why I didn’t! Instead, in my head, I was screaming..
I’M STILL IN REMISSION! F**k CANCER!!!
I’m still screaming it silently as it happens!!
At the moment, life is good! My hair has grown a lot more, I just need to get my arse back to work having been off a few weeks and hope that my kidney function has improved. Results are die back today.
Love to you all!
Today was an interesting day. Having not slept that well the night before I actually felt fine this morning and this afternoon.
I had the usual visit from Dr Evil who came bearing the news that at some point I’ll be having a Lumbar Puncture. This is the procedure I mentioned before about extracting fluid from my spinal column. I got the information about it today and looks like another one of those horrific procedures that involves local anaesthetic and an enormous hollow needle in my the base of my spine. He said it shouldn’t be as painful as the bone marrow biopsy but we shall see.
I had some visitors today too, my mum came with my cousin Kathryn and 2 of my aunts. It was so good to see them and I’m glad that they saw me looking almost healthy with hair!!! They came with pictures my baby cousins Daniel and Emily drew for me.. So cute!
After they left, the chemo nurse came to administer the rest of cycle 1 of the chemo. We’ve pretty much established that my second cycle will mean another hospital stay as my tolerance to the first part is so low. The second part of the chemo involved more drugs bring pumped into me, felt ok during them but afterwards they left me feeling quite tired and unwell. Can’t remember what was pumped into me, but there were a couple of syringes worth of red stuff and a couple of lots of clear stuff. Apparently they’re quite dangerous if not administered properly so the specialist chemo nurse had to do them. If the drugs were to leak into my skin/tissue it can burn and do some serious damage to the point you would need skin grafting, so the nurse had to do proper checks to ensure the cannula is sitting in the vein fully before any of the drug is administered.
For curious folks, here’s the chemo kit for the second part of the treatment..
As usual I was asking the nurse loads of questions and apparently chemo isn’t ‘stock’. Each drug is prescribed and mixed based on my height, weight etc. Every patient (well at least Lymphoma) will have tailor made treatment for them.
After the chemo I went for a walk as soon as the nurse disconnected me from ‘Anna’ (see previous log) I think the constant beeping and the relentless annoying managed to wear me down to the ground because I became really ratty after that. The effects of the chemo really added to how low I started to feel afterwards. I still feel a bit ropey now and I’m exhausted so I’m going to try and get some sleep. Though I’m not too hopeful. The group of visitors that caused the kerfuffle on Sunday and led to a ward lock down are still here, in fact there’s about 12 of them now, they all seem to be mincing outside my room shouting down phones. I suspect whoever they are visiting are extremely poorly otherwise I can’t think why so many have convened on this ward today.
Before sleep, I want to thank everyone who sent me cards, presents and overwhelming messages of support. There’s too many to reply to but please be assured I have read them all and I really appreciate them and love reading them.
I’ll leave you with these awesome drawings my lovely family gave me today
Well, sequels are generally the blander, more tedious version of the original, but that’s not to say it wasn’t horrific.
Yesterday was a better day in general. I was kept busy having walks around the hospital grounds to get fresh air and get some movement in my legs. Ade came in all smart to see me too, though wasn’t for my benefit, he had a work photo so popped back to work at lunchtime which I’m glad he did. He’s spent so much time here in hospital with me so I was glad he was seeing work friends today, even if it was for a little while. Doesn’t he scrub up well?
I’ve had visits from my consultant and seems the haematologist who did my bone marrow biopsy is also on duty this week. I’ve nicknamed him Dr Evil and he seemed quite taken with it, he’s even started calling himself that on his second visit today. To look at you wouldn’t think he was evil at all, he looks like one of those geeky studious, public school educated guys, very young for a doctor. Main thing is he seems to know what he’s talking about despite my intense urge each time I see him to ask him if he’s had permission from his parents to be here.
Dr Evil went through some of my notes and reviewed my horrific experience from the night before and despite the set back, he seemed happy I was in good enough health for them to try again. He also talked a bit more about the whole brain thing too. After my first round of chemo, he plans to extract fluid from my spinal column for testing to see how much I’m at risk of the lymphoma spreading to the brain. My medical notes and the samples will be cross checked with another hospital in London for their assessment too so it may mean I need additional treatment. Dr Evil said because of how advanced my lymphoma had got, with my age on my side, further treatment is a good option.
This afternoon I had a surprise visitor. Ade came back with our good friend Irish Marc. Really cheered me up especially as we were able to joke about cancer. Marc has had chemotherapy before so it was good to be able to relate my horrors too. He stayed with me for the start of my next chemo attempt, I was a bit apprehensive at first but then thought it might be good as he’d been through it too.
Chemo attempt number 2 started late afternoon with the usual prep of anti-sickness drugs, painkillers and an IV of Piriton. This time the Piriton didn’t knock me out. The nurses started with me a flow of 18ml an hour for half an hour which I tolerated the previous day with blood pressure, heart rate and temperature tests at 15 minute intervals. After that, they moved me up to 36ml per hour which I was really scared about. When they moved me up to this dosage the previous day I was out cold but the moment it increased I had the reaction and the nurses and doctors had to stop the treatment for the night. This time all nurses were on standby for checks and I actually tolerated it. I’m not sure how long I was on this dosage for, Ade and Marc was still here taking my mind of it and trying distract me with their usual Irish tomfoolery! Once I was done with the 36ml, I was moved up to the 54ml and amazingly tolerated that until I nearly got to the end, then suddenly my body said ‘no’. I felt the cold, then the manic shivers kicked in like the night before. Immediately the nurses came in and switched the treatment off and went about getting the hydrocortisone to kill the side effects. Another nurse, Ade and Marc got me extra blankets to cover me to keep me warm, I felt terrible and wasn’t aware until Marc had said that my whole body had gone cold. Nurses did the usual tests and my blood pressure had dropped. Like the previous day, I was terrified all over again but luckily the nurses were much quicker to act and I didn’t quite get to the trauma of the previous day. Marc and Ade both helped me get my breathing under control and I’m sure they were a big part of keeping me focused not to have another panic attack. It took a little while for the shivering to subside and my breathe to come back then the doctor came in to check the vitals. She was happy I was recovering well from the reaction despite the fact it looked like I had done several rounds with Mike Tyson and that I was exhausted she was happy for the nurses to restart the chemo on the lower dosage of 36ml. After a break of about 20 minutes, the treatment was restarted. My blood pressure was still dropping so I had to up my fluid intake to increase it. Eventually the first part of my first cycle of the chemo finished in the early hours of this morning when I heard Anna* bleeping. As it was stupid o’clock, they couldn’t administer the other chemo drugs, I will get those today and hopefully conclude my first cycle of chemo today.
In case you’re baffled about the dosage, what the doctors do is that they like to keep you in hospital to administer your first cycle of chemo. They start with a low dosage of treatment, check you every 15 minutes, increase, check, increase.. Until they know how much your body can take. Obviously, the more your body tolerates the quicker you can get given it, but if you’re like me and can’t tolerate it, instead of taking say 4 hours to take in the treatment, it will take me probably around 12 hours which is a bitch because every time I come back for treatment, I would have to be admitted for chemotherapy for a couple of days as oppose to come in as an outpatient for a half day.
So as you can see, yesterday was hell but only half the hell of the previous day. My only concern now is that next time I have the chemo, the doctors will challenge my tolerance again. If I’m honest I rather stick to the dosage rate I can take and have it over a longer period of time, as long as I get all the drugs that’s the main thing.
*Anna – I’m one of those people who name things! I named my road racer bike Jenson, my SLR camera is called Fabio, but I never considered naming hospital equipment until Irish Marc said I should name my drip machine. The moment he said that I decided to call it Anna. Anna was the irritating lady I wanted to pull the plug on in my previous ward who didn’t shut up and pretty much acted like she was the only person on the cancer ward to have cancer, self-pitying martyr. Seeing as my drip machine likes to wake me up constantly through the night and stop working once every so often for no reason, the name was an obvious choice.
As expected, my first course of chemotherapy started yesterday. I was really anxious (terrified) about it so me and Ade went through all the material that the specialist nurse gave us and tried to familiarise ourselves with the possible side effects. If you’ve seen my previous blog, the second link I posted about the R-CHOP will list them.
I started the treatment around early evening, I was given my usual drip to help protect my organs and the usual steroids etc. I was then given anti-sickness drugs to help with the side effects of the chemo.
Once I finished up with the drip, a team of nurses came in to prep me for the actual treatment. I was given Piriton in my IV and immediately felt drowsy, then they explained that they would administer the chemo in tiny doses to see how my body reacted. To be honest, for the first half an hour I don’t remember much as the Piriton made me sleep, but I vaguely remember the nurses waking me up at intervals to test my blood pressure, heart rate and temperature. At this time I was only being given 9ml or 18ml of chemo in my drip.
The next increase was when things started to go wrong. I was still sleeping when they administered the higher dose of 36ml and within moments the side effects kicked in. The hot facial flushing hit me although the nurses said my temperature was fine. I remember needing to go to the toilet but when I came back my temperature went up, then I had difficulty breathing and chest pains. Ade hit the buzzer and the nurses came in and the treatment was stopped. I was then hooked up to an ECG and a doctor was called. Moments later was when the true hell begun. I went from burning hot to an extreme shivering cold, a feeling I have never felt before. I was shivering so much that I thought I was having a seizure. My whole body hurt, muscles stiffened and it was uncontrollable. Ade and the nurses threw as many blankets over me as they could. I then laid down in a foetal position, a position I have been unable to lie in for weeks due to my illness. I felt so awful for Ade, although I couldn’t see him I could hear him telling me I was going to be ok. I knew him seeing me like this couldn’t have been easy. The nurses stayed with me till the doctor arrived which helped a lot particularly as it seemed that as well as having the extreme shivering I was also having quite a bad panic attack.. Well that’s what they told me, I was too scared to know what was happening.
At some point the doctor came in but I must have been so far gone in my panic attack that I I don’t remember seeing her. She asked for treatment to be abandoned for tonight and for a shot of hydrocortisone to be given to me to get rid of the side effects. Ade said she told me not to be scared because these side effects are common and that is why patients like me are kept in hospital to be monitored. A small reassurance but I kind of wondered if she has ever been in this kind of hell.
I started to calm down and eventually the shivering stopped but took a bit of time to drag my body back from the depth of Hades to a more normal place. My oxygen was low but it was getting better, my heart rate which got quite high was returning to normal but my blood pressure was still quite low which eventually returned to normal. The nurse said I would have to use a bedpan or commode if I wanted to go to the toilet and I told her “no way in hell” – so I think my inner fight must have re-emerged, got my blood pressure back to normal and walked myself to the toilet!!! I want some dignity left!!
One of the nurses stayed with me all the way through and I wish I could remember her name, she was fantastic and helped me through this from start to finished. I really have no idea how nurses do the job they do.
After this, it was rest and trying to get my body back to normal. I was completely drained after the failed chemo attempt last night. The whole episode was terrifying. I had never felt so scared in my life, I have never felt that ill in my life and hand on heart, when the shivering, chest pains and breathlessness started, I honestly thought “this is it, the end, this is what dying feels like” and when I wasn’t thinking that, I was actually wishing they would put me out of my misery.
Today, they will try again.
Here’s the bag on my drip for the chemo.. Funny how all my drip bags were clear and this one is black.. Apparently there’s a £1000 worth of drugs in that.
This is my 4th day in hospital and I already feel like I’ve been here several weeks.
The day started like any other here, battling to pick myself up from the ground for the day ahead. I know I need to stay strong as this should be the day I get my first course of chemotherapy. I had a really frustrating nights sleep, the drip thing was a pain in the arse and kept going off every couple of hours claiming there was ‘air in the line’ so a nurse had to come in and sort it all out.
Just as an afterthought, do you remember watching medical dramas on tv or in the cinema and you see someone injecting an air bubble into someone’s drip tube and it kills them? It’s a myth. Apparently it will take a whole syringe worth of air to do any damage or kill someone..
Ade came to the hospital early today in case I was getting chemo early or in case I had a visit from the consultant to find out the plan for treatment. I had a little meltdown about my hair again so he got on the phone to my specialist nurse to get someone to come to talk to be about my options. I don’t want my hair to go to waste so I want to donate it or get it made into a wig for myself and keep in case the cancer came back. Silly to be honest because my number 1 priority is to get better.
In earlier blogs I’ve mentioned what type of cancer I have, I now have information on the sub-type I have. I have Non-Hodgkin Lymphoma, high grade, Diffuse Large B Cell. If you want to learn more about this type of Lymphoma, here’s a really handy link here:
I’ve already mentioned a bit about the treatment in earlier blogs.. Steroids to break up tumour bulk, stuff to protect my organs. The main bulk of my treatment will come from chemotherapy. There’s loads of different types of chemo and I have now been told I will be having the R-CHOP. All the letters in that stand for a different type of drugs. Here’s a link to the R-CHOP chemotherapy:
I’m expected to have 6 courses of treatment though I may be increased to 8 or they may change my course depending how I’m responding to the treatment. The first 2 cycles are expected to kill about 80% of the cancer but they won’t know until I get another PET scan in about 6 weeks time.
The treatment will take months but I’m hoping I will respond well to it. The consultant already said that blood tests indicate that the steroids I’ve been given over the weekend has reduced the tumour bulk from 10,000 to 8,000.
I may also need some kind of injection in my spinal column to reduce the risk of the cancer spreading to my brain, but unsure of the details of that as yet.
For the time being, I’m just hoping things go to plan. I just need to make sure I’m fighting all the time and falling apart a lot less.
Some other facts I learnt since my diagnosis 11 days ago..
*My cancer is dealt with my the haematology department as opposed to oncology as I have a blood cancer. Although I have tumours, the cancer cells are present in the bone marrow (where white blood cells are produced) and the blood. Oncology would specialise in more “lump” based cancers if you know what I mean.
*Average age for my type of cancer is 60.
*There are 4 main stages of my type. Unfortunately, due to being fobbed off for 6 months, I was rushed into hospital and diagnosed at the most advanced stage where i required urgent treatment meaning there’s no time to do anything like harvest eggs for the sake of fertility or anything like that. Stage 1 is where the lymphoma is in one area like a lymph node. In my case, probably the lump in my neck I discovered in March this year. Stage 2 is when other lymph nodes are affected. As I documented my ailments I know that a month or so after I discovered the one on my neck, nodes in my collar and under arms changed and swollen. Stage 3 is when the lymphoma are in the nodes under my diaphragm and into my spleen. My spleen started swelling a few months ago and subsequently ended up swelling to the size of my liver and started protruding out of my abdomen. Stage 4 is when the lymphoma has spread elsewhere such as bones, in my case, lymphoma is now in my bone marrow.
Insane isn’t it.. I was diagnosed 11 days ago, I started treatment on Friday and the day I should be starting chemotherapy I’m still learning about my illness.
Sunday’s in hospital wards like these tend to be quite quiet. Most the doctors and consultants are off so it’s just the usual buzz of nurses and visitors, but today was a bit more eventful. Even sat here in my room blogging, I can hear a bit of activity out in the ward with security. This evening around 6.30pm something kicked off with a patient and their burly looking scary visitors. Whatever happened, it led to a ward lock down, a policeman, 2 security guards and nurses in a flap. For once it wasn’t me causing trouble!
Ended up having my drugs, drips, injections a lot later than usual today. The anti-clot injection in my stomach was really sore today. They couldn’t get the needle in.. Ughhhhhhh… More purple dots on my abdomen.. Im a freak show.
Despite that, today was a good day, though it didn’t start that way but I am starting to accept that mornings are the worse and so long as I’m ill, mornings are an absolute misery. We’re not talking about getting up to go to work misery, I’m talking full on tearful emotional need to find mental strength to pick myself up from Hades misery. This morning was particularly bad as I had somehow hurt my spleen again last night doing some ambitious stretch to get comfortable. I was also on an overnight saline drip which bleeped at 1.30am waking me up, I was also up at 3, then 5 for a toilet break, then woken at 6.30am for my regular obs. I fell asleep again and miss breakfast and my cocktail of drugs. I was exhausted.
Once I wised up and stopped being a miserable shit, I got myself showered, dressed and checked my blog messages. Then my mum, dad, uncle and Ade came in with my home cooked lunch. It was so good to see them all especially my uncle. I hadn’t seen him in a while and was almost getting teary when he came in telling me how his heart broke when he was told that I have cancer. We talked a bit out what’s happening then slipped back into strange conversations us Tsang’s have. It was good to see my dad in better form, I have been so worried at how badly he had taken my diagnosis.
After they left, Ade and I took a walk round the hospital grounds, got a drink and just enjoyed the day, then came back to the ward and waited for Rich, Holly and Naomi to come. I was so excited I was getting really impatient! When they got here I was straight over to Naomi and my god, she is seriously tiny, a little heart breaker. First opportunity I got I had her!! Rich, Holly and Naomi’s visit really cheered me up and I swear I’m still smiling from it. They didn’t do that awful pitying sympathy thing I hate so much but I knew they wouldn’t anyway. What was extra special about this visit was that out of all the devastating news I’ve had, there’s happiness amongst it all and it’s the kind of thing that’s worth fighting for. I want to be around for when Naomi is giving Rich an enormous amount of grief 🙂 and I want to be the one to buy her her first shot of Sambuca when she turns 13!!!!
Here’s a photo of me and Naomi: