Side effects of il2.. where’s the paracetamol?

It was the first day of the injection yesterday. I collected my il2 injections as usual from St George’s. This time it was different. The lady that was giving them to me happened to ask a research nurse for some alcoholic wipes for me. The nurse objected to the lady giving me the injections as they had to be handed over by a qualified nurse. That led us to trekking across the hospital to the oncology ward to an unsuspecting nurse there that had no idea what to do. I asserted myself and said all you need to do is ensure I am that person stating on the package. Luckily I blagged it and get out of the sharpish. I am sure the research nurse meant well but come on… I have done it five times already!

I did the injection earlier than normal and started to feel the effects at about 8pm. I tanked up on paracetamol and then hoped I would sleep. I awoke about midnight and felt a bit iffy and waited a while before taking more paracetamol. I slept quite well and woke surrounded by fur; the cat and teddy bears that Pete had put in his place. It was lovely.

I dragged myself from bed and got on with my day as usual. I have a busy one today as we leave on Friday for a little road trip. We will be away a while on vacation in France. I am sort of looking forward to it but I find preparing everything a strain on my brain! And I am starting to worry about leaving the kitty behind.

I read up again on the side effects of il2 and why I feel like I do. It says that whilst taking it I could have lower blood cells than normal making me susceptible to infection. The ailments I feel such as aching, fever and generally crappy, are all perfectly normal. I also had a racing heart and on reading, notice that is also a side effect. I think like everything it is accumulating and the side effects come quicker and last longer. Prof D did say that I could reduce the dose myself but part of me thinks it must be working so stick with it.

What I would really like to do over the next few days is…nothing. I want to lie down and watch TV and then read some magazines. I know I will be able to do that soon but I don’t want to spend my holiday lying down the whole time. I like to be active and sight see.

I have been using the nebuliser today again with a combination of distilled water and bicarbonate of soda. It kind of tastes odd and sometimes takes my breath away but I want to keep going with it. In fact I am going to have another hit of it now to finish of today’s dose.

After Thursday I won’t be having any further injections for about a month, due to being away and timings. I feel a bit apprehensive but hope that some time away with family and friends will be enough medicine for me.

As we are driving I am taking everything that will benefit me such as my juicer, nebuliser, yoga mat and more. I hope it all fits in the car!

I can’t wait to spend time with my Bear… Happy thoughts. X

Tomorrow we run in memory of Leanne….

I went down to London yesterday to the London Clinic to have the next IMM101 injection. I am getting used to hopping on the train and underground and have it timed to perfection. Yesterday however despite my fine tuned plans I arrived to find that all the trains to London were cancelled.

Oh no… This was due to someone throwing themselves into the path of an oncoming train. How awful. My initial thoughts were how am I going to get to there in time so I hopped on a train to Reading. Once there I noticed a train just about to pull away and it said it was going to Paddington even though it passed through Slough where the poor soul had taken his life. With everything crossed I hoped that I wouldn’t be stood on that train with hundreds of others for hours on end. Thankfully the Universe was listening and we got there with not much delay.

Whilst travelling I spent time thinking about how confused I felt. I felt obviously put out by the disruption this one individual had caused to thousands of people that day. I felt so very sad that he decided that his life wasn’t worth living and what an awful way to end his life. I felt absolutely gutted for the train driver (whom I was told was his birthday yesterday) who had to witness the horrible mess made by a speeding train and then I thought how life is so crazy. Here I am trying desperately to stay alive and well, doing everything in my powers to find a cure or at least something to extend my life.  Then there are those who simply cannot cope with their life and want to end it all in an instant.

I have never understood depression and it has been bought into the spotlight this week with the death of Robin Williams. I don’t think I will ever understand it. I didn’t understand it when my ex boyfriend decided to hang himself and I lived with him for over 6 years.

That’s life I guess…..

Since the injection my arm has as usual gone into an explosive mess. It has reinfected one of the old sites and I currently have huge blisters which will open up and become all pusy again. The price to pay in the quest for wellness.

 

Tomorrow Pete and I along with his colleagues and about 150 other people will be doing the Colour Run in Birmingham in memory of our friend Leanne Muir who passed in June. We are also raising much need funds for our chosen charities; Breakthrough Breast Cancer and The Cancer Vaccine Institute. 5 kilometres may not be that much a challenge and having paint thrown over us does seem fun but every step of the way we will be thinking of a wonderful women whom we miss every day.

If you would like to support us by donating please go to the link below and leave message when you donate.

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=makingtriplenegativeapositive

 

Thank you in advance and I will post photos of our antics after the weekend.

Happy Friday everyone!

 

I feel all.. floopy.

Wednesday morning I headed down to Tooting to St Georges again, this time not only to collect interleukin 2 injections but also to see Professor Dalgliesh. I left myself plenty of time but unfortunately my train was cancelled. I was too worried though. I got to the hospital half hour late and I expected to wait like I would at the Churchill in oxford. They are always running late there but I walked in to an empty waiting room! What a novelty. I was seen by Nneka who provided me with the injections and then Prof wanted to see me… for all of about twenty seconds. He asked if I had any symptoms, No. I chatted about the lumps in my tummy that the il2 injections leave. Apparently that is normal but if I was to let the injection warm up to body temperature before injecting then the lumps wouldn’t occur. Oh, now they tell me!

So as quick as I arrived, I then left. Pete had messaged me earlier to say that he was having meetings in London that afternoon so I hopped on the tube and went over to Knightsbridge to meet him after. It was a great afternoon mooching around the shops trying not to buy anything and then I had a message from a friend saying her partner was in the vicinity and he was on his way to meet me!  Don’t you just love spontaneous events? We sat in the sun having a few cheeky Pimms and lemonades whilst we waited for Pete. Then along he came and afternoon went into evening. It was just lovely. I had a really good day.

I did my injection in the car on the way home and by the time I got to bed it was nearly midnight. It was worth staying up late for though. Unfortunately the injection gave the same side effects as before. I had a fever that woke me up about four hours later. It’s hard to describe because not only do I feel hot I feel like there is a hole in my back; a pain deep inside but towards the back of me. I imagine a hole in my spirit, my chakras. It’s so weird. I can’t lie still and I feel utterly awful. I popped a few paracetemol as usual but they didn’t have any effect.

Needless to say yesterday wasn’t such a good day. I felt just rubbish. I felt drained, sickly and just plain achy. I walked so much on Wednesday my legs ached (but on my UP app it said I had walked 22,000 steps! Yay!) And I just couldn’t snap out of it. I had a day of clients too until 7.30pm. The good thing though, was working did take my mind off it and I didn’t wallow in self pity but the end of the day couldn’t come quick enough.

I cooked us an omelette for tea. Something nice and light and even that I couldn’t stomach. I am such a moaner. All day I felt teary and just absorbed in my own self pity.

It probably doesn’t help not knowing what my scan results are. I am not sure why I let them define me? It makes no difference really what the results are. All they do is decide what my next step is. But I can’t help but wish for an exceptional outcome. Am I being too unrealistic to expect that?

With all these aches, pains and twinges part of me thinks it’s great because my body is responding to the injections and vaccines. The other part of me thinks that there is something profoundly wrong. But my little body is going through quite a lot. I mustn’t be too hard on myself.

I do feel though the last month or so I haven’t been on an even kill. I can decide if I have had more off days than good ones. I miss feeling awesome all the time. Most days I have plenty of energy and always exercise. Today was different. I simply couldn’t muster up the energy. Last night I did sleep better, I didn’t take any paracetemol after having my il2 injection and I felt a tiny bit better. I did have a hot, sweaty night again and I did feel achy and odd. Thankfully not like I had a hole in my back.  It’s hard to describe. At the moment I feel my spirit is off. I know I haven’t been having as many treatments from other therapists but I am not sure they could help.  I feel all, like Phoebe from Friends would say floopy. I am in need of being in balance and I don’t know what will do that.

Update on my arm: The vaccination I had last Thursday has now erupted and looks like a volcano. It is sore and pusy. It’s so unattractive but in the scheme of things, who cares, right?

On the plus side, Pete is being an absolute diamond as always. Every morning he brings me a hot lemon drink and tucks me up whilst he leaves for the gym or work. An hour later he calls to see how I am. I couldn’t ask for a better way to start the day. I am really enjoying my morning rituals. I even love the green juices now. I always knew they were beneficial but having vegetable juices is quite hard to stomach. I don’t know what has changed but I really love them.

My life is brilliant. I just wish I could sleep soundly and feel replenished in the mornings. I want to be full of energy and have a zest for life.

I am still waiting for scan results. Despite the secretary saying she would email them, the radiologists haven’t actually done the report yet. Really? Well if by Tuesday they haven’t been done I won’t be going to see Professor Harris. I know they will be ready then and I just can’t stand sitting in the clinic waiting room dreading what he will say.

I know this is playing on my mind. As I said it really doesn’t matter what they say but I so want good news. I need to shift this living every three months. It isn’t good for my health. Or Pete’s.

When I’m feeling tired and emotional I just wish I could worry about other things like normal people do, like where to go on holiday , or having to save up for home improvements. Living with bloody canSer gets so boring. To be honest I wouldn’t mind, thank you very much, if I could just be told it was all over and then I could focus on helping other people. But… that’s just life. My life.

Blah, blah, blah… I bored of moaning. I have so much to be thankful. This morning I opened the door to receive a package. I opened it up and it was gift bought for me by Pete. It’s a stylus pencil for the app I use to make my drawings. We have been waiting for months for it to arrive in the UK. Yay! I am so chuffed. Also i have a man here right now. Sounds odd right? J He is measuring up and designing my kitchen. I have wanted a new kitchen for years and we decided to at least take the first step and get someone in to design and price it. Then we just need to see if we can afford to have it done. Gulp. Anyway, these are all things to look forward to.

This weekend we have lots to look forward to, seeing friends, laughing and joking. Just what we need…..Happiness….

A wonderful surprise to start off the week…

Last week was supposed to be a week of chilling out. Under orders from Pete who cleverly suggested that avoiding close contact with lots of clients would be beneficial straight after surgery. I felt initially like I should work as I felt well enough but then I actually felt rubbish all week. Typically.

I couldn’t put my finger on it. I felt incredibly teary, maybe from hormones. I ached where I hit my head and my arm/ vaccination site was causing me issues at night too. I started the interleukin two injections Wednesday, Thursday and Friday and as Prof D informed me I did feel quite fluey at night. This didn’t help sleep either. I just felt pretty miserable and off beat.

I kept myself busy instead of sitting around which wasn’t what I was supposed to do but it meant I could get things done and visit people that I don’t normally get a chance to. In that respect last week was great.

But then I visited Ray, the old man that we have taken care of for too many years! You might remember me mentioning him. He has moved to a lovely, care home where he will never be lonely, without food or a doctor near by should he need it. Peter has been brilliant in visiting him regularly and unsurprisingly Ray is unhappy with his new home. It would be too much to ask for him to be grateful or happy.

Trying to help Pete last Friday I offered to pop in to see him. Pete was maxed at work and I wanted to do something to help the load at least. Well, I skipped into the lovely residence only to be met by Rays locked door and told to bugger off! How nice. He didn’t realise it was me but when he did he seemed really happy to see me. It felt good and I was pleased I had made him smile. But this lasted about ten seconds. He realised he had an audience and proceeded to moan, make up stories and slate me and Pete for about an hour. Now I know old people can be that way but I don’t think is any excuse for that behaviour. Reluctantly I told him I had to leave when he was pointing his finger at me telling me people don’t like me. What can you do eh? I left feeling violated as I had sat there trying not to comment or defend myself. I was red and flustered and poor Pete felt terrible when I told him.

I got home and had some more tears… It must be hormones! It was ok though because soon I had a big cuddle inbound from the Bear. The weekend was chilled as we visited Pete’s sister and then yesterday did some gardening. I felt really happy and could feel the cloud lifting.

We have tried to work out what people like Ray are trying to teach us and why they are still in our life. We have come to the conclusion that you can’t please everybody no matter what lengths you go to.Then I saw this article this morning;

http://www.mindbodygreen.com/0-6934/Are-We-Meant-to-Meet-the-People-We-Meet.html

 

Today I am back to work. I have four new clients and I will be working into the evening. I feel better in myself and I am looking forward to working.

I had a great start to the day when I opened my front door to find a bunch of beautiful flowers and a card from client. She said that after wallowing in self pity all weekend she thought of me and that inspired her to pick herself up and get on with things. I am glad I helped give her a kick up the bum. Sometimes it’s ok to wallow but moving on and getting on with things is the way forward.

The interleukin 2 injections have left quite itchy raised lumps in the injection sites on my tummy. This is a good sign that the immunity is responding. I so hope that it is being reflected inside. My next ct scan is booked for the end of July, so I will find out then.

Right, off I go to get started on lots of pairs of eyebrows!

Light and love!

X

The scab and goop stuck to my bed… Gross!

Didn’t really sleep last night mainly due to worrying about waking up early this morning. Why do we do that to ourselves? I got on the road to Tooting ultra early mainly because I know how long it took Pete to get there last week when he was visiting me.

I arrived by 8am and my appointment wasn’t until 10am. I guessed ghee time would fly catching up with Pete on the phone and having a cuppa at the cafe.

I checked into reception at 9.30am. It seemed like quite a small oncology department but was clean and new. I was greeted by a lovely nurse who seemed to know all the patients and was rushing around ensuring that the Prof had everything he needed. I was quite impressed. It’s very interesting seeing how different hospitals operate.

I was seen about half hour late but this isn’t anything compared to the Churchill in Oxford which has delays of up to two or three hours sometimes.

Prof Dalgleish asked how I was doing and discussed the vaccine site on my arm. It has been a week since I had it done and now it was hugely open and pusy. Last night I must have slept on it when it had a scab and was like a volcano. When I woke this morning all the scab and goop inside was stuck to my bed.. Gross. The volcano lump has gone and now I am left with a gaping hole like before. It’s really sore and I aim to keep it dry and untouched.

Prof explained about the injections I was there to pick up and start administering. He has provided me with three syringes containing interleukin 2. I have had this many a time at Dr Nesselhuts. The syringes contain a tiny amount and I am to inject myself in the tummy every night for three nights. I may experience flu like symptoms but they will pass very quickly like a light switch. I have never experienced flu like symptoms before but you never know? He also told me that the vaccination sites on my arm may be deactivated and become very pusy again. Oh well that’s the way it goes.. But he said that is great because it shows my immunity is really active.

He said he doesn’t really know what’s going to happen. This is a trial of sorts and he mainly deals with melanoma. So we just have to wait and see. I told him that I have a scan booked for the end of July so it will good to see what is going on since the ablation and all of the immunotherapy.

The idea is that the il2 stimulates my own natural killer cells. So that will enhance the ablation and the IMM101 vaccinations.

He told me that he had a melanoma patient who had some lesions ablated and that the imm101 and il2 combined made the other lesions in his body die. I am not sure if he has more than one success but here’s hoping so. He says he knows this works well in lung canSer patients too.

I don’t mind being a guinea pig. I have been for two years I just had it combined with conventional treatments too. But from what I know so far from my last scan is that having just these treatments the canSer isn’t progressing hugely and in fact some of the tumours were actually declining.

I left with an ice box containing the injections and set off on my way home. There was plenty of traffic because of the Wimbledon tennis tournament. Oh how I would like to be there watching a game.

It took me what felt like ages to get back. I felt pooped when I got in so I grabbed a blanket and sat in the back garden doing some homework.

This is where I am typing this blog from. It’s nice, clouds to break up the heat and a slight breeze.

I am making my second batch of Bravo Probiotic yoghurt or in the process of it. I started it yesterday and it is currently fermenting. I have run out of the last batch and I am getting used to its funky taste. My kitty loves the stuff. She has been licking my bowl clean every day. Pete has even tried it and says he doesn’t think it even needs sweetening of any kind. I definitely think it must be doing some good. I like to think my gut health and immunity are loving it.

I’m going to make some guacamole and a large mackerel salad for our tea then I’m not watching any football! I am putting my foot down! Ha ha! Oh who am I kidding.. I can’t say no to the Bear.. I’m going to have an early night.

Night all. X

What? My procedure will be cancelled if there aren’t any beds available?!

I was asked to call St Georges hospital first thing yesterday morning, the day before my ablation procedure to see when they wanted me to attend in preparation. As I said before I was reluctant to attend the night before if I didn’t have to. What I wasn’t prepared for was being told on the phone that weren’t any beds available and to call back later. I asked what if there aren’t any beds later? They said the procedure would be cancelled. WHAT?  Oh my goodness. I felt sick. I said it can’t be cancelled I have been waiting for this for months and my life depends on it. That might sound extreme but it’s true.

I was asked to call back an hour and half later and when I did I was transferred to the junior consultant who reassured me and said don’t worry I will ensure you get a bed. I told her I was going to have my vaccination injection at the London Clinic that afternoon. She said to go straight from there to St George’s in Tooting.

Gulp. I kind of thought they would say that. I knew that if I didn’t go I wouldn’t get a bed. So I rearranged my travel arrangements slightly and quickly packed a bag for staying overnight at hospital. I caught a taxi to the train station and hopped on a train London bound.

Pete reassured me and said that he would drive down later with my bag, save me carrying it. Perfect.

I felt very floopy and unsettled. The fact that the bed wasn’t a certainty made me feel sick. For a short while I thought oh dear god, what am I going to do if it’s cancelled? Then I thought… No. I will be having the procedure. They will have to throw me out of hospital. Grrrr.

I got to the London Clinic in quick time and the service there was impeccable. Well you would expect it to be for the charges incurred. The doctor was happy with the state of my current vaccination sites, which have healed up really well in the last week. They decided that I should have half the dose than before and that it will now be done monthly.

Almost within half hour the site which is about an inch from the other two had already affected them. A hard lump has come up right next to the second site. Very strange but curious. It’s currently very hot and itchy.

 

I got to St George’s, the Oncology ward and it was complete bedlam. The Churchill in Oxford is busy but this place was, well awful. Mess everywhere. The toilets in a right state and I was told as expected that there was no bed available and that I was to wait. In the mean time they would take bloods.

I sat and waited for a few hours and then asked if I could venture outside and sit in the fresh air. It was so hot and stuffy I felt like I was being infected with everyone else’s germs.

Off I went and waited for Pete to arrive. The problem was the traffic was terrible and it took him two and half hours… Poor boy. By that time it was 7pm and I was back in the ward which had now quietened down. I was told by the very flustered junior consultant that they were going to try and free up a bay which was currently being occupied by men, which needed to be cleaned. They decided that it would be better for me to be on that ward in case there were difficulties after the procedure. Ok, I thought that sounds great.

All during that time, I had been contacting Prof D, Dr Gonsalves and anyone else that would listen. I figured I’d get on their cases to ensure they got me a bed! I had a few replies and they all said they were sorry but there was no private wing at St George’s and that unfortunately that is how it is at this hospital.

By 7.30pm Pete arrived and we were told to go out for a while. I had a plan. Let’s go off site and have a tasty dinner. I had seen a great little bistro on my way to the hospital. We weren’t disappointed. We ate more than enough. I figured if I was to be nil by mouth from this morning I may as fill myself up now!

We got back to the hospital ward at 9.30pm and were told that they hadn’t moved the men from their ward and that I was to go where there was a bed available- across the hospital in another ward.

A nurse took us on a ten minute walk and we arrived at the Amyland ward. A ward for geriatrics, people with Alzheimer’s and rheumatoid arthritis. My heart sank when we walked in. The hospital is old and the lady opposite was clearly not with it and was crying and asking the nurse where she was over and over again.

 

I unpacked and got settled in and walked Pete to the door at the end of the ward… I so wanted to go home. I was told to try and sleep but that was never going to happen. Not because I was worried but because of the old lady across from me. She called out for Ivy, Edna, Maria and anyone else she could think of. She asked for forgiveness, the need for a poo and so much more. The whole bay was kept awake all night. Seriously I wish they would give her something to sedate her. Bless her. It just made me think, I don’t want to get that old! Which is ironic since I am doing my best to stay alive for many decades to come! So weird. I kept thinking what is this trying to teach me? I came up with nothing.

 

At 5.20am I decided I would have a shower and eat something before I was told be nil by mouth. The nurses here are lovely and I have since had an ECG and have a catheter fitted with IV fluids on a drip. The procedure is due this afternoon.

That’s the only details I have.

I am seriously missing Prof Harris and the Churchill hospital right now. That hospital rocks compared to this. It’s chaos here. I will forgive everything providing the ablation goes to plan.

I just hope I can go home quickly. I will never heal here. I won’t get sleep, I feel like I will catch every bug under the sun, especially when I am greeted by sick and faeces in the toilets on my very first visit to the loo…

 

Pete has been amazing as always and has insisted he will be here when I wake up. It’s such a gruelling car journey. It’s not necessarily far it’s just horrible on those particular roads.

 

So here I am sitting on my bed, feeling very spaced out due to no sleep and a little bit anxious. I hope it doesn’t hurt too much. I want to go home!!

Making Bravo Probiotic…have I done it right?

I recently received the order I placed for GcMAF Bravo probiotic kit. I have been storing it in the fridge as instructed until two days ago when I followed the simple instruction book and went through the process of making and fermenting the probiotics. It is currently sitting in a bowl in the kitchen. I decided to use whole goat’s milk, which on the instructions it said i could do if I didn’t want to use cow’s milk. I have been gently prodding the bowl on the outside and as we approach 48 hours, which in the booklet, it says it should be set and ready to go into the fridge. I fear that it still has far too much movement… Oh no… Have I done something wrong? I couldn’t have, it was so simple. Not even I could get it wrong. Well once we arrive at 48 hours I will be dividing it into 100 ml bowls and storing in the fridge. I have everything crossed its right…

 

Bravo Probiotic Easy Starter Kit
Fermenting the milk with the ingredients from the kit… waiting 48 hours.

I’ll let you know how it turns out.

I’m quite excited to start eating it. I really think gut health is of huge importance and I am keen to ensure I can get as much help as possible in making my immune system stronger and hopefully correcting it to help kill the canSer.

I though this week was going to be a little less busy. In my mind I had planned on reading and drawing and so on but then I checked my diary and realised I had booked it out with clients! Ha ha! I don’t mind. I love my work and I could do with the money. (Not for spending on me… honest J)

I have today been emailing Prof Dalgliesh and asking if it’s ok to have my next IMM101 vaccination since the injection sites are far less inflamed and seem to be finally healing. My worry is that should I wait until after going into hospital for the ablation procedure?

I got a reply and was told as long as they are not oozing then going before is fine. If they are oozing then Prof Dalgliesh will check them out whilst I am at St George’s next week and decide from there.

OK, well I will call the London Clinic and book myself to go next Wednesday. The day before… I think.

Like I said my arm is finally not giving me any trouble. The injection sites look smaller and are definitely not oozing at night. My concern is that they will be triggered off again when I have another shot. And the last thing I need is for them to get infected in hospital. I have concerns about coming home with more than I went in there with! I guess it’s a judgment call I will have to make. It has been a month since my last one and I feel that I should keep the immunity doing something seeing as I am not having any other treatment.

Today I am feeling all a bit uneasy. I just think some days are like that and I start doubting myself. I feel better when I am immersed into things. I have a client arriving any minute for a facial so that will be lovely for me too, lots of frankincense oil to calm me down… Ahhh. I feel better already….

 

X