I last wrote three weeks ago, when I had finally made the decision to get on with the chemo. I think there was a collective sigh of relief that I had made the choice that probably seemed so obvious to everybody else. It might seem hard to understand why anybody would turn it down when it is the only available option, but in my mind, I needed to be completely certain. I needed clarity that all other options had been ruled out and a clear understanding of how the disease was progressing. Once I had those answers I actually made my mind up pretty quickly.
Time will tell whether turning down the chemo in May when it was originally offered will prove to be detrimental. Whatever that answer proves to be, I don’t regret my original decision. I had the most brilliant summer making special memories with special people. Which was always my plan. Quality over quantity.
As we know, we can change our minds. I recommend you do so frequently. If I have learnt anything these last few weeks it is that we should not cut off our noses to spite our face, be too proud, to say actually, I’m overruling myself. I went to meet The Prof a couple of weeks ago and gave him my decision. I have to say he seemed a little surprised. This is understandable given that I was so vehemently against his original plan. He talked me through what was to come and sent me off for yet more blood tests. He has prescribed 3 chemo cycles for now, with an MRI and review after the third. I told him I was only committing to one, and if I couldn’t tolerate it at all, I would not be back for more. He told me what he told his students; if the treatment is not working or the patient can’t tolerate it, then stop. Seems obvious right? I told him I could not do the steroids again, which is normally part of the regime, as they made me a borderline psychopath and he agreed to let me try with just anti-sickness. The cycle is one intravenous dose every 3 weeks. Before that I had to have a portacath (port) fitted.
Once we had the port fitting date we could schedule the first chemo. I had asked my sister to be with me for the first session so I collected her from Leeds train station on my way back from North Yorkshire, the day before. She stayed with me for nearly a week through all the grimness and me being very tired and grumpy and refusing to eat any hot food, despite her offers to chef. She did all my chores, shopping, cooking, changed my dressings and generally kept a watchful eye. She has been an absolute hero and I love her.
A port is a small device implanted beneath the skin, mine is by my left clavicle. It is the size of a large button and has a catheter leading in to a blood vessel. It allows the chemo nurses to easily deliver medication, saline etc, and take blood without having to find veins in my arm, which will probably become damaged by the chemo. I had mine fitted the day before chemo was due to start. It meant spending the whole day at hospital and was inserted with the help of local anaesthetic and sedatives. Not enough mind you, and I spent the entire time wincing and saying ouch, but they didn’t seem to notice me complaining under the oxygen mask. The wound will take a couple of weeks to recover but after that I’m told I will barely know it’s there. I can see it and feel it though. You can read more about it here.
The next day we set off to Elstree. As we know I had had a lot of negative emotion about chemotherapy. To say I didn’t want it would be to put it in the mildest possible of terms. I saw it as poison. I imagined it to be the darkest of the dark. In truth, I thought it would be the thing that would finally break me. I knew that I could tolerate pretty much anything physically but I had no idea how long I could maintain my positive outlook, because that gets harder as time goes on. With this in mind, I knew I needed to have a serious word with my attitude. And so I did. With the help of a new, and frankly brilliant, cancer buddy, I ditched the dark and accepted the light. She gave me a healing prayer and she lent me a book about EFT. This is a tapping technique and requires a lot more explanation than I have time for here, I will maybe cover it more in a future blog. In the mean time, google is your friend. She also gave me her chemo/meditation playlist. With all these tools, and a lot of encouragement from lots of sources, I arrived at the cancer centre in a truly positive frame of mind. I don’t care if I sound like a hippy. At this point in stage four cancer my mind is the only thing left I have any control over.
Before the chemo, came the cold cap. The cold cap is a hat that is clamped on your head and chilled to minus 5. The hope being that it will prevent the chemo getting to your hair follicles and stop the hair falling out. Like all things, there is no guarantee and it doesn’t work for everybody. I had been warned that it would be painful. And yes, there is a reason why they give you sedatives and IV paracetamol before the chill starts. It’s almost impossible to describe how it feels when they first plug you in, because it’s not like anything I have ever experienced. It’s an intense burning pain that gets worse and worse until it suddenly stops and because your head is frozen, you can’t feel it any more. That happens after about 15 or 20 minutes and then it is unfeasibly tight and uncomfortable, but bearable. You have to really, REALLY want to keep your hair. I repeated my healing prayer a few times, listened to the playlist and went in to a silent and deep meditation in order to survive. I thanked my lucky stars, once again, that I had learnt some basic medication skills a year or so ago. You can learn more about the cold cap and the science here, at my centre they use the Paxman. The cap goes on for 30 minutes before chemo then an hour and a half after, but your head has to defrost before it can be removed, so it’s about 3 hours in total. Time will tell whether this is worth it or not.
After that, the chemo was really easy. They push it through the port and you wouldn’t even know anything had happened. Except then I started to feel sick, but that’s hardly surprising. Eventually I was sent home with a bag full of drugs for possible side effects, anti nausea tablets, anti poop pills, mouthwash for sore mouth. I was given instructions only to wash my hair twice a week, not use any product, heat or styling tools. For me this is not awesome but I shall embrace my natural hair the best I can. The hair can fall anytime between day 7 and day 20. For the time being, it is hanging on in there, but I am open minded about the fact that it may not last.
The first week after chemo was a bit of blur. Utterly exhausted, a bit queasy, weird appetite, horrible dry and furry mouth. But mostly, better than I was expecting. My sister did a handover to my parents so I had carers for that first week. Despite everything, I managed a few short walks and a few lunches out. So I guess you could say I was pleasantly surprised. Energy is a problem and it disappears without warning. Literally falls off a cliff. Which is difficult to get used to. I was busy congratulating myself on how well I was tolerating it when I realised I was breathless and wheezing and developed an unpleasant pain in my liver. I was sent off to a CT scan to investigate pulmonary embolism. Ticketyboo. Thankfully, it’s not that but I do have a chest infection so am on antibiotics. The cause of the liver pain is not clear, but they have given me codeine so I can at least pretend it’s not there.
I will be back at the cancer centre for more caps and chemo on the 24th. All positive vibes gratefully received.
Fun stuff since last time has included a quick trip to North Yorkshire to celebrate an 80th birthday, a last hoorah trip to the pub with my sis and a few strolls. There has, as always been an incredible deluge of good wishes, cards, gifts and floral delights. I can’t explain how this helps me and I am grateful beyond words for everybody’s support.
Please, please, please feel your boobs and bits.
Big Love, AG xx
Another of potentially my favourite all time songs, it’s a huge tune:
The Waterboys / Michael Scott/ Whole of the moon
I pictured a rainbow You held it in your hands I had flashes But you saw the plan I wandered out in the world for years While you just stayed in your room I saw the crescent You saw the whole of the moon The whole of the moon Hmm, you were there in the turnstiles, with the wind at your heels You stretched for the stars and you know how it feels to reach too high Too far Too soon You saw the whole of the moon I was grounded While you filled the skies I was dumbfounded by truth You cut through lies I saw the rain dirty valley You saw Brigadoon I saw the crescent You saw the whole of the moon I spoke about wings You just flew I wondered, I guessed and I tried You just knew I sighed But you swooned, I saw the crescent You saw the whole of the moon The whole of the moon with a torch in your pocket and the wind at your heels You climbed on the ladder and you know how it feels to get too high Too far Too soon You saw the whole of the moon The whole of the moon, hey yeah! Unicorns and cannonballs, palaces and piers Trumpets, towers and tenements Wide oceans full of tears Flags, rags ferryboats Scimitars and scarves Every precious dream and vision Underneath the stars, yes, you climbed on the ladder With the wind in your sails You came like a comet Blazing your trail too high Too far Too soon You saw the whole of the moon