A tough 2nd chemo...

2 down, 2 to go - but I have to be honest, chemo is tough ~ as much mentally as physically, hence no updates for a week and a half! A question I am often asked is, 'what is chemo like?'. I'll do my best to explain.
Firstly I need to say that everyone reacts differently, so this really is personal to me.
So far, on the day I've gone in for chemo I have felt reasonably well, the first time because I was well recovered from my op, and I was essentially in good health! The second time I had totally recovered from the effects of chemo, however I was still fighting off the cough virus, so wasn't 100%. That said on both occasions I was well.
So, day of chemo you feel well, however I must admit second time around to feeling sick on arrival - anticipation of what is to come. You go into a small bay containing 4 reclining chairs and 3 other patients - all attached to their drips and various drug concoctions. You take your seat, confirm your name and DOB and in put your hand into a container of warm water in preparation for canulation (where they put the main needle into the back of your hand). Eventually the nurse that administering your chemo greets you - you have the same nurse for everything that day (you and several other patients) and finds a vein not previously used and after some discomfort the needle is in and firmly stuck in place. I do not like this bit. I have no problem with needles, but I've never once felt comfortable with one in the back of my hand - it always catches or hurts (mental note to self: do not wear jeans next time, makes going to the loo a difficult experience due to needle in right hand).
Anyway, the cold cap then goes on - definitely more painful second time around due to lack of hair - at this point the ipod goes on and I try to zone out to my yoga music!
20 minutes later, numb from the now -6 equivalent of a cycle helmet filled with freezing tubes on your head, you are now ready for the cocktail of drugs to be syringed into your vein! This is the worst bit, because at that point in time you still feel well, BUT you know as the large red syringe (X2) comes in your direction that it is only a matter of time....
My lovely friends Diane and Lynn kept me company this time and it did make the whole process easier, infact it would've been fine except the first and most poisonous/ dangerous drug damaged my vein, which meant that when the nurse tried to syringe in the second drug my vein and arm went into spasm, this made it a particularly painful and slow experience as she had to keep flushing the vein with saline. By this point you just want it to be over - you know you have one more drug, but this one comes in via the drip - but another 2 hours of the cold cap still yet to pass. Final drug administered and a final flush of saline and all the drugs are on board! The only relief at this point is that the needle in my hand is taken out promptly at my request.
Blankets! Blankets! Blankets! I am now freezing and tired - I recline the chair and try (unsuccessfully) to sleep - I am starting to have that queasy feeling in my stomach by now. Oh, and your sense of smell is heightened to beyond anything I've ever experienced - I can smell the tape they've applied to needle wound, and it is as intense as it is unpleasant.
Count down to cold cap removal, the 2 hours pass fairly quickly, the machine is turned off - 10 minutes more to let my hair unfreeze and I am then able to remove the cap without risk of my hair being iced to it!
Home time. Already feeling slightly unwell, but not too bad. It is a relief to get into the car and return home. I force myself to eat a small dinner, usually jacket potato and chicken and then I go to bed and wait...
It does not take long, it's now about 8pm Wednesday evening - for the next 2 1/2 days I leave this world and enter chemoland... no actual sickness but I feel like I have a sack of stones in my stomach, my thighs turn to jelly - the 5m journey to the bathroom is a long one and my bed is the only place I want to be. My body feels heavy and at times I do not even have the energy to string a sentence together. Then follows the 60 hours of what I call "wake/sleep/wake/sleep" because that's exactly what happens 24/7. Day and night do not exist, I just sleep for an hour, wake for an hour, usually to a hot flush and racing heart - drink my soda water, and when possible force myself to eat very small portions of the equivalent of breakfast/ lunch/ dinner. At night I am only aware of the time by the news updates on BBCNews24 and during the day by the mind numbing array of daytime TV programmes - Homes Under the Hammer; To buy or Not to buy; Loose Women; The Great British Menu and Hell's Kitchen (I am now in love with Marco Pierre White!) and so it continues for the best part of 3 days, and I am pretty much unaware of anything that is happening around me or elsewhere in the world.
At times I cry, I just want the worst to be over and quite simply I do not know what to do with myself - nothing makes it better. Just time. I exist in my mind - my body no longer feels as if it belongs to me.
Finally, sometime on Saturday afternoon I emerge from the confines of my room and make it to the settee, and sleep some more - but I'm up at least!
Things then tend to level out for the next 5 days - don't feel great, still got a queasy feeling in my stomach and energy levels are very low, but I can function more like a human being again - phew! Day 7/8 are mentally my lowest - it's been a long week since chemo and I begin to wonder if it will ever pass this time? I don't want anymore chemo - I just want my life back! ... but on day 9 ( a day later this time) I am again human - the queasiness has passed, I can taste things, I no longer have an intense sense of smell and I feel vaguely normal again! Hurrah! Life is good once more....
I now have a week and a half to enjoy - must avoid coughs, colds etc at all costs so live like a bit of hermit until day 11... time to start planning and get on with the business of living... until the next time - watch this space!
So, all in all not an experience that I ever wish to repeat - role on July when the chemo at least should be over (I swear I will never put myself through this hideousness ever again!).
It's been pretty quiet since chemo, intentionally - I’ve followed advice this time and taken it easy - not even done that much in the garden. I have had visits from my lovely, lovely friend Heidi and it was a pleasure to see all her party photos since I was not well enough to be there in person - Good luck for the marathon on Sunday! It was also lovely to see Tracey - I am now the proud owner of a 'Willow' angel, she is beautiful! And a big thanks to Mia for cleaning my house!
So, there you go. I now intend to enjoy the next 12 days and will keep you posted about what I get up to!
Finally I must say congratulations again and send them half way round the world, to Kari - a mum to be in November - I now have 2 very good reasons to travel to the other side of the world - my oldest friend Sarah in Melbourne is a mum to be too! So that's it, out of all the friends I was at school with I am now the only one that's not a mum. Am I sad? Yes, but here is not the place to go into that - those of you that know me are all very well aware of the reasons in the last 4 1/2 years as to why that is, such is life! But that doesn't take away any of my happiness for my friends, quite the opposite. A precious gift and one that I hope to enjoy too - I will spoil them rotten!
This is a long one; I hope you are still awake! Must go, off to an exhibition at the Mill! (And lunch of course!).
As always, love you lots!

Chemo 2

Tempting as it was, when offered the option to delay chemo for a couple of days I declined on the basis that the sooner I have the dreaded drugs the sooner it's all over with!!! Booked in for 1.30 tomorrow, they're going to reduce the steroids so hopefully the hot flushes/ sleepless nights/ spaced out 'chemoland' will not be quite so harsh this time. Fingers crossed - will let you know! Lots of love, Terri xxx

Hospital & Hair

I spoke too soon! Last Thursday really was my best day. It’s been a bit of uphill struggle since then. The coughing fit I had whilst at the doctors on Friday morning was more than a one off (I was getting a prescription for mouth wash – no one tells you that one of the most vile side effects from chemo other than the nausea/ hot flushes/ hair loss/ bad taste in your mouth is incredibly sore gums and mouth ulcers. Please someone invent an alternative to chemo – it is barbaric!) Anyway where was I? The cough – I thought it was just one of those embarrassing tickles that you get from time to time, but no as the day developed – so did the cough! What didn’t occur to me as I sat in another garden centre, this time with my lovely friend Helen (once my driving instructor!) was that rather than a side effect (as in my confusion I thought it was) it was actually on the list of things to phone hospital immediately. This I didn’t realise until I got home and checked the list of side effects, discovered it wasn’t listed and then it dawned on me ( I knew I’d read it somewhere) that it was on my emergency card that I have to carry in my wallet. Checked my temperature: 37.5 ~ not good in chemoland! So, reluctantly made the call (I say reluctantly because I’d had a fab day and had purchased a tent! Just a small 3 man tent, enough for me and Brad (dog) & possibly A.N.Other and I wanted to see if I could put it up by myself (it’s that independent streak of mine)… dreaming of warm sunny days when I might be well enough to through it in the back of the car and spend a weekend at one with nature!
Anyway, I digress – the week that followed has been an interesting one. Had to go to the ward Friday night for bloods, but they said that although my blood count was low I didn’t have to stay if I didn’t want to. Needless to say I came home (it was the same ward that I visited mum on many occasions). I then spent the next 4 days trying to fight off the virus. Another trip to hospital Tuesday meant I was finally put on antibiotics and it was touch and go if I was allowed home as my blood count was very low at 0.4 (1 is deemed safe; 3 ok for chemo; 8 is normal) and my temp was 38. The deal was I could go home but would have to be admitted if my temp went above 38…
… So, 3 hours later when it reached 38.5 there was only ever going to be one outcome – admitted to the ward that whilst is one of the most amazing hospital wards I have ever had the misfortune to experience it is also a place that holds a lot of painfully sad memories for me and for my family. To get my head around the fact that 6 years on I am the patient is harder than I imagined and very difficult to put into words.
That was Tuesday night. Wednesday they put me on intravenous antibiotics as the worry is that when the immune system is basically wiped out the body can’t fight infection and although antibiotics themselves can’t do much to fight the cough virus they keep other nasties at bay – the main concern being it turns into a chest infection and/or pneumonia. They did their job and by Thursday my blood count was on the way up 1.1 and I was allowed home – just the 18 tablets a day to keep me going!!!
It is a relief to be home, the nurses are completely lovely and some even recognised me from when mum was there, but being a cancer ward it is a tough place to be mentally. On the one hand it made me realise how lucky I was ~ hopefully in remission, no tumours and no signs of secondaries – just the effects of chemo; on the other hand it reminded me what a cruel disease this is and it’s a lottery as to whether or not it returns – it does not discriminate. The lovely, positive and smiley lady opposite tells me that she has only a couple of months to live and the poor, poor lady in the bed next to me who was planning on going home, arranging for a bed to be put in the lounge and for the care of nurses to support her in her own surroundings, very suddenly (had been sat up chatting all day) succumbed to a chest infection (which is what happened to mum). I’d forgotten about the oxygen tanks and how hard breathing becomes once the lungs are infected, the panic experienced when it feels like you can’t draw a breath – the need for injections to calm you and injections to ease the pain – cancer truly is a cruel, vile disease. As I lay there overhearing the urgent calls to family members to get there asap I just cried – I cried for the lady who was in pain and who didn’t have long left; I cried for her family and their pain of seeing her like that – and for the pain of loss that was to come; I cried for mum and what she had to go through and I suppose I cried for myself. I am scared. Please God do not let that be me. This was my lowest point. In the end I had to take myself to the lounge just to get away from the awful bubbling noise that the chest makes with every breath taken and I suppose I knew that I needed to get myself together. I felt really selfish given all that they were going through, it’s just that for me it was very close to home. The battle for me now is as much a mental battle as a physical one.
When you are first diagnosed you think a lot about dieing and then somehow that gradually subsides as you get through the op and then tackle the chemo. But I suppose the truth is that there is always that element of doubt tucked away in a corner of your mind and it is a question that no one can answer (not even the oncologist). Getting your head around that is half the battle. If ever I needed a reality check with regards to fighting this disease I just got one. Next time when chemo does its worst I will remember all of the above and I will not allow myself to even consider that chemo is too awful to continue with. All I can say is that it had better be doing its job! The fact that my hair is now falling out suggests that it is at least working -this is as reassuring as it is distressing. I will keep you updated, as Ruth Picardie once said – watch this wig! (Or in my case as I do not want to wear a wig – watch this buff! ~ A slightly trendy alternative to a bandana!). XXX

A cup of tea and a bacon sandwich!!!

Hurrah - the sickness has finally gone (I hope!). Having felt thoroughly depressed yesterday at no real signs of improvement since Sunday I was starting to get VERY frustrated... there's so much I want to do and I just wanted to feel well again... (yes I did manage and enjoy a trip out to the garden centre, but it was tougher than I imagined - thank you Jackie and Roger, loved the stories you told whilst we relaxed in the conservatory after Rog - those were the days!!!)...today when I woke the queasy feeling in the pit of my stomach was no longer present. Hair still attached. Sun is shining... got the taste for a bacon sarnie! Having existed on porridge; tomato soup; chicken, jkt potato & sweetcorn for a week - as a could not bare the thought of anything else - oh, and bizarrely drank nothing other than lime cordial - I would just like to announce that although I still have to contend with a rather disgusting taste in my mouth I was actually able to enjoy a bacon sandwich and a cup of tea for my lunch!!! Small steps I know, but they are going in the right direction....