Chemotherapy and Jilly McWiggy
At the result appointment I was given the news that out of 20 glands removed, 8 were infected with cancer. I thought was okay really - at least it was less than half! I was then told about the course of chemotherapy - 8 sessions in total, recommended to have 4 then break for radiotherapy, then have the further 4 sessions. I was given exercises to do with my left arm to help disperse any build up fluid and possible Lymphedema and that unless I did present with fluid building up, Mr Neads didn't expect to see me until a year down the line for my yearly check up.
Chemotherapy was to be split into two different drug concoctions - the first 4 sessions a course of FEC and the second 4 sessions a course of Taxotere, both to be administered in three weekly cycles. Radiotherapy would be a 4 week, daily course except for weekends. The wonderful side effects would likely include - hair loss, menopausal symptoms, possible mouth ulcers and nausea. The three separate drugs in the sessions of FEC - fluorouracil, epirubicin and cyclophosphamide (you try pronouncing them!!!!). The epirubicin made the drug concoction red in colour and therefore in turn would cause urine to be a pinky/red colour on the first day of treatment - how lovely!!
With breast cancer, it may be what's called HER2 status positive, which then adds into the equation getting the drug Herceptin once treatment is done. My particular type wasn't HER2 positive, which basically put meant that my cancer wasn't feeding off hormones, so I didn't require either the Herceptin or Tamoxifen drugs after treatments were over.
Hair loss was still such a huge issue with me. The thought of my hair falling out in clumps around me was horrific. It was something I knew was going to happen, and I knew that I wouldn't be the type of person to just walk around with a baldy head and that I would choose to wear a wig, so I had to take control of that too. Alayne and I had a day in Edinburgh looking at the two designated shops for a wig. We also stumbled upon a wee shop called the Wig Bank which dealt with second hand wigs and ones which were brand new but sourced from abroad, therefore far more affordable! We decided to concentrate on the Wig Bank's selection and made it as fun an experience as humanly possible, given the circumstances.
Chemotherapy was to be split into two different drug concoctions - the first 4 sessions a course of FEC and the second 4 sessions a course of Taxotere, both to be administered in three weekly cycles. Radiotherapy would be a 4 week, daily course except for weekends. The wonderful side effects would likely include - hair loss, menopausal symptoms, possible mouth ulcers and nausea. The three separate drugs in the sessions of FEC - fluorouracil, epirubicin and cyclophosphamide (you try pronouncing them!!!!). The epirubicin made the drug concoction red in colour and therefore in turn would cause urine to be a pinky/red colour on the first day of treatment - how lovely!!
With breast cancer, it may be what's called HER2 status positive, which then adds into the equation getting the drug Herceptin once treatment is done. My particular type wasn't HER2 positive, which basically put meant that my cancer wasn't feeding off hormones, so I didn't require either the Herceptin or Tamoxifen drugs after treatments were over.
Hair loss was still such a huge issue with me. The thought of my hair falling out in clumps around me was horrific. It was something I knew was going to happen, and I knew that I wouldn't be the type of person to just walk around with a baldy head and that I would choose to wear a wig, so I had to take control of that too. Alayne and I had a day in Edinburgh looking at the two designated shops for a wig. We also stumbled upon a wee shop called the Wig Bank which dealt with second hand wigs and ones which were brand new but sourced from abroad, therefore far more affordable! We decided to concentrate on the Wig Bank's selection and made it as fun an experience as humanly possible, given the circumstances.
Fun at The Wig Bank
However traumatic, it was a job that had to be done. Alayne was absolutely the best person to help me with that job! I'd had another hair chop in preparation, so my hair was now really quite short.
When we got to the Wig Bank I started to panic. I couldn't do this!!! Alayne more or less shoved me into that shop!! Once we got started it wasn't actually as bad as I'd expected it to be though. There were loads of wigs in different shades, styles and lengths, all adorned upon polystyrene heads - that in itself made us start to giggle! Alayne had said she would keep me company in trying some on, so I took a deep breath, looked at her and said "okay - let's do it!". What an absolute blast we had in this wee shop! We tried various styles on - long, short, curly, dark, blonde, brown, red, up to date, old fashioned - and we made it into a good experience. I eventually had a short list of two. Both in the same style - long and kind of wispy in style - but in two shades - one a real auburn red and one a more natural lightish brown. Just couldn't make up my mind though. So we took a lunch break to go and discuss them and see what we thought. The shop was quite dark so when we returned after lunch we asked the owner, Jim, if he would allow us to take both wigs outside into natural light. Outside we went with Jim holding these two polystyrene heads with their respective wigs upon them, into a busy street, bang in the lunchtime rush! We didn't notice the two workmen sitting up on some steps having their lunch, when one of them shouted out "the red one"! Oh my god!! How embarrassed was I!!?? Before I knew it, I was trying both these wigs on, in the middle of the day, out in public!! I couldn't believe I'd been remotely brave enough to do that! Neither could Alayne, given the fact that an hour or so prior I was totally horrified about the whole concept of it all! Ended up buying the red one. On the way home in the car I popped it on my head to have a wee try out and practice with it and we nipped in to see Sue and show her. I was smiling so much, her husband commented that it was the first time in a while that he'd seen me looking upbeat about it all. That, you see, was because when I looked in a mirror I saw Jilly again - Jilly with long hair - Jilly looking normal once more - Me!!
Jilly McWiggy was created!
The first public appearance of the now Jilly McWiggy was at my girls' dancing class later that same day. An odd feeling indeed. I felt extremely self conscious but fairly good. Received some very positive comments from a few people who knew what I was going through, and from the people who didn't know - they thought I'd just put a dye through my own hair!!
Maybe, just maybe, I was going to get through this particular trauma!
When we got to the Wig Bank I started to panic. I couldn't do this!!! Alayne more or less shoved me into that shop!! Once we got started it wasn't actually as bad as I'd expected it to be though. There were loads of wigs in different shades, styles and lengths, all adorned upon polystyrene heads - that in itself made us start to giggle! Alayne had said she would keep me company in trying some on, so I took a deep breath, looked at her and said "okay - let's do it!". What an absolute blast we had in this wee shop! We tried various styles on - long, short, curly, dark, blonde, brown, red, up to date, old fashioned - and we made it into a good experience. I eventually had a short list of two. Both in the same style - long and kind of wispy in style - but in two shades - one a real auburn red and one a more natural lightish brown. Just couldn't make up my mind though. So we took a lunch break to go and discuss them and see what we thought. The shop was quite dark so when we returned after lunch we asked the owner, Jim, if he would allow us to take both wigs outside into natural light. Outside we went with Jim holding these two polystyrene heads with their respective wigs upon them, into a busy street, bang in the lunchtime rush! We didn't notice the two workmen sitting up on some steps having their lunch, when one of them shouted out "the red one"! Oh my god!! How embarrassed was I!!?? Before I knew it, I was trying both these wigs on, in the middle of the day, out in public!! I couldn't believe I'd been remotely brave enough to do that! Neither could Alayne, given the fact that an hour or so prior I was totally horrified about the whole concept of it all! Ended up buying the red one. On the way home in the car I popped it on my head to have a wee try out and practice with it and we nipped in to see Sue and show her. I was smiling so much, her husband commented that it was the first time in a while that he'd seen me looking upbeat about it all. That, you see, was because when I looked in a mirror I saw Jilly again - Jilly with long hair - Jilly looking normal once more - Me!!
Jilly McWiggy was created!
The first public appearance of the now Jilly McWiggy was at my girls' dancing class later that same day. An odd feeling indeed. I felt extremely self conscious but fairly good. Received some very positive comments from a few people who knew what I was going through, and from the people who didn't know - they thought I'd just put a dye through my own hair!!
Maybe, just maybe, I was going to get through this particular trauma!
Time for Chemo!
Monday 25th September. A message had been left on my answer machine with my start date for chemotherapy. Wednesday. Which Wednesday? This one!! Oh okay - oh my god!!! Talk about my head being all over the place! I was pleased to be getting started with it, scared about how it would make me feel, relieved that the sooner I got on the Rollercoaster the sooner I could get off it again...so many thoughts whizzing around my head. Once it had sunk in that this was really happening in a matter of two days I had a damn good cry. I just let the flood gates open and it all came out!
This was real!! This was happening!! Oh shit - I had cancer and was about to embark on a horrible course of treatment and would lose all my hair.
Hold on to your wig Jilly - this was it!!!!
This was real!! This was happening!! Oh shit - I had cancer and was about to embark on a horrible course of treatment and would lose all my hair.
Hold on to your wig Jilly - this was it!!!!
Session 1
Wednesday 27th September. The day treatment started. My stomach was churning at the very thought of it. Mum and Dad came over as it was an afternoon appointment and we had no idea how long it would last for. The kids were at school and I didn't think I'd be home in time for them finishing, so my parents were there for them and Sue came with me to the hospital for my first round of chemo. The staff were really friendly and I was assigned my wonderful chemo nurse - Linda. She talked me through what she was going to do and I filled out all the necessary paperwork before she took me through to a separate room to begin. I had to have a canular thing fitted, through which she would administer the FEC. She had me place my hand in hot water so as to encourage my veins to be a bit more prominent. With my veins not being overly obedient in such things, she took it very easy with me while inserting the needle and told me to think of something nice. Well no contest there - I imagined Bon Jovi being with me!! Back we went to the main room again and she was given a tray of big - and I mean BIG - syringes, full of the FEC drugs. 10 of the damn things!! 4 red ones and 6 clear ones, which she then had to sit and administer each one individually into the canular drip thing. She also gave me anti sickness tablets and a relaxant called Lurazapam. Within a short while I was feeling quite light headed in a sort of merry/pissed way. Sue was laughing her head off at me in my "pissed" state!
The whole process that first time took what seemed like forever! As we were ready to leave, I was given anti sickness pills plus a thermometer. If my temperature rose above 37.5 I was to contact my GP in case of any infection whilst my white cell count was low. Once I got home I slept for ages before having a bite to eat and I still felt quite light headed.
The pattern of the next three weeks seemed to settle fairly quickly. Day one I felt a bit out of it, Day two I still felt a bit groggy, Day three I lacked energy and was a bit agitated, with the odd wave of nausea, Day four the dry mouth kicked in and I still felt tired and Day five I felt like I was beginning to return to normal again.
Within those first few days my hair began to come away - not noticeably to others - but if I ran my fingers through it I had the odd strands coming out. That scared me again. I began to start wearing my wig when I was out and about so that I could get used to it but my confidence was so low. I felt like a drag queen when I put make up on and wore it, and not even a remotely attractive drag queen!! My scalp started to get sore and when I touched it, it was very tender feeling.
A week after each session of chemo I had to return to the hospital for a full blood count to check that everything was beginning to pick back up again and that there were no infections.
I began to withdraw into myself - I was screening phone calls, stopped answering the door, didn't leave the house unless I absolutely had to. It was a horrible, horrible feeling to go through, especially since I was a pretty confident and outgoing person before all this darkened my door! Within two weeks of the first session my hair had really started to fall out. My scalp was painfully sore and I became scared to wash my hair! I had visions of it all falling out in one go and disappearing down the plughole or all being in the towel when I rubbed it dry. I had to have serious words with myself about getting on with things and having a more positive mental attitude to everything. It seemed to work because I did start to feel better within myself after that. However, it was still quite a shock when I saw my reflection in the mirror and began seeing the odd patch of scalp showing through. I was beginning to consider having it all shaved off but I wasn't brave enough to take that step!
Tuesday 17th October. Day 21 of first cycle. I had to have a pre-chemo blood test done to make sure that the blood count had recovered enough to be able to get the second session done the following day. I also saw Dr Bowman, the oncologist, who told me that she wanted me to have a CT scan. What!!!! I thought I'd had every test and scan that I was supposed to have!! But she wanted to make absolutely certain that nothing had been missed and so I was booked in for one final test. She discussed the side effects that I was experiencing by that time and thought that the soreness I was having all over my scalp was due to the hair that I had left pulling on my skin and making it sore. She suggested that I have it chopped in as short as possible to alleviate some of that pulling and tenderness. Alayne came to my rescue that very evening and got the scissors out! We had to make it as funny as possible for the children. I had visions of this skin head or alien look and expected to feel really ugly, but I was pleasantly surprised with the result. Alayne told me that it was basically falling out as she touched it, but she was so gentle whilst cutting it in as close to the scalp as she could. I didn't look ugly at all and actually I thought I had rather a nice shaped head!
I felt quite upbeat and positive ready to start on the second session!
The pattern of the next three weeks seemed to settle fairly quickly. Day one I felt a bit out of it, Day two I still felt a bit groggy, Day three I lacked energy and was a bit agitated, with the odd wave of nausea, Day four the dry mouth kicked in and I still felt tired and Day five I felt like I was beginning to return to normal again.
Within those first few days my hair began to come away - not noticeably to others - but if I ran my fingers through it I had the odd strands coming out. That scared me again. I began to start wearing my wig when I was out and about so that I could get used to it but my confidence was so low. I felt like a drag queen when I put make up on and wore it, and not even a remotely attractive drag queen!! My scalp started to get sore and when I touched it, it was very tender feeling.
A week after each session of chemo I had to return to the hospital for a full blood count to check that everything was beginning to pick back up again and that there were no infections.
I began to withdraw into myself - I was screening phone calls, stopped answering the door, didn't leave the house unless I absolutely had to. It was a horrible, horrible feeling to go through, especially since I was a pretty confident and outgoing person before all this darkened my door! Within two weeks of the first session my hair had really started to fall out. My scalp was painfully sore and I became scared to wash my hair! I had visions of it all falling out in one go and disappearing down the plughole or all being in the towel when I rubbed it dry. I had to have serious words with myself about getting on with things and having a more positive mental attitude to everything. It seemed to work because I did start to feel better within myself after that. However, it was still quite a shock when I saw my reflection in the mirror and began seeing the odd patch of scalp showing through. I was beginning to consider having it all shaved off but I wasn't brave enough to take that step!
Tuesday 17th October. Day 21 of first cycle. I had to have a pre-chemo blood test done to make sure that the blood count had recovered enough to be able to get the second session done the following day. I also saw Dr Bowman, the oncologist, who told me that she wanted me to have a CT scan. What!!!! I thought I'd had every test and scan that I was supposed to have!! But she wanted to make absolutely certain that nothing had been missed and so I was booked in for one final test. She discussed the side effects that I was experiencing by that time and thought that the soreness I was having all over my scalp was due to the hair that I had left pulling on my skin and making it sore. She suggested that I have it chopped in as short as possible to alleviate some of that pulling and tenderness. Alayne came to my rescue that very evening and got the scissors out! We had to make it as funny as possible for the children. I had visions of this skin head or alien look and expected to feel really ugly, but I was pleasantly surprised with the result. Alayne told me that it was basically falling out as she touched it, but she was so gentle whilst cutting it in as close to the scalp as she could. I didn't look ugly at all and actually I thought I had rather a nice shaped head!
I felt quite upbeat and positive ready to start on the second session!
Session 2
Despite the basic solemnity of the situation, we always seemed to manage to find something to laugh at throughout each session. My friend Lemon came with me to the second cycle and having met her through a Genealogy Website online, we ended having a discussion with the chemo nurses as to how many fanny's people had in their family trees. The chemo nurses must have thought we were total nutcases, but with all the laughter going on, my nurse Linda thought that I had exactly the right sort of attitude to get through all this! I refused the relaxant pill this time around as I really hadn't been happy about how it made me feel during the first session, and I definitely felt better after the second load having not taken it, compared to the first time! I had a blood test to check on ovary function - apparently this was standard procedure due to the fact that the actual chemotherapy could throw me into either a premature menopause or cause menopausal symptoms.
Apart from the odd waves of nausea and general tiredness, I felt not too bad.
My taste was still intact and although my mouth was feeling slightly dry it was bearable.
Online friends Kaz and Babs came up from down south to visit me that weekend and Lemon and Sue came over, which ended up being a real tonic! We all had such a laugh and I got them to have a try of my wigs - I'd been back to the Wig Bank by then and got myself another wig (a dark brown, shoulder length, flicky out style). It must have been around 2am when they left, and although I was really tired by that time, I felt really good. They had cheered me up no end with all the fun and laughter that we'd shared during the evening.
I still hadn't redeemed the NHS wig voucher so Mum took me over to Edinburgh to visit A & A Studios to choose a fourth and final wig. The lady who was assigned to help me choose one brought lots of different ones for me to try on. One made me look like bloody Myra Hindley and another resembled an Ozzy Osbourne style. I couldn't believe that Mum liked the Myra lookalike! There was no way on earth I was having any of it!! Finally, I chose a lightish brown bob which I really liked.
During this 3 week cycle, Isobel (the lady I made friends with in hospital) and I were offered a place on a Look Good Feel Better afternoon. This took place at Maggie's Centre in Edinburgh and was really good fun. Andrew, the Centre Head of the Edinburgh facility, provided us with a bit of eye candy - very good looking guy!! We were given a goodie bag of make up and cleansing/moisturising products which was really fantastic stuff! It was all Clinique, Clarins, Estee Lauder products and must have been worth a fair bit!!
Wednesday 1st November. CT scan. I had to take this dose of some vile drink stuff before being able to have the CT scan. Two doses of it! One the night before and another on the day of the scan. And then I wasn't allowed to eat or drink for 2 hours prior to the scan. Yet another canular into my vein so that the nurse could put some sort of dye through me. I had to lie on the machine and they run it into what looked like a giant polo mint! The dye that was being given made me feel really hot and it also had the weirdest sensation of making me feel like I'd wet myself!! I felt like I had to try and hold my pee in which was good exercise for the pelvic floor muscles I guess!! Not that I was wetting myself you understand - it just made it "feel" like I was!! Not an overly pleasant sensation!!
The signs of menopause symptoms set in during this cycle too. I began to get hot flushes and my period stopped. I was also getting quite short tempered with the children. They were dealing with everything so wonderfully and we were getting through each day supporting each other, but I think with all the hormonal changes happening within my body, I was getting quite tetchy with them. I had been given some leaflets about breast cancer, chemotherapy, hair loss etc and had started reading through them. This was possibly not the greatest idea! There was a couple of mentions of having 5 - 10 years and maybe I was misconstruing the meaning of it but it completely freaked me out!
I wanted a damn sight more time than that!!
Apart from the odd waves of nausea and general tiredness, I felt not too bad.
My taste was still intact and although my mouth was feeling slightly dry it was bearable.
Online friends Kaz and Babs came up from down south to visit me that weekend and Lemon and Sue came over, which ended up being a real tonic! We all had such a laugh and I got them to have a try of my wigs - I'd been back to the Wig Bank by then and got myself another wig (a dark brown, shoulder length, flicky out style). It must have been around 2am when they left, and although I was really tired by that time, I felt really good. They had cheered me up no end with all the fun and laughter that we'd shared during the evening.
I still hadn't redeemed the NHS wig voucher so Mum took me over to Edinburgh to visit A & A Studios to choose a fourth and final wig. The lady who was assigned to help me choose one brought lots of different ones for me to try on. One made me look like bloody Myra Hindley and another resembled an Ozzy Osbourne style. I couldn't believe that Mum liked the Myra lookalike! There was no way on earth I was having any of it!! Finally, I chose a lightish brown bob which I really liked.
During this 3 week cycle, Isobel (the lady I made friends with in hospital) and I were offered a place on a Look Good Feel Better afternoon. This took place at Maggie's Centre in Edinburgh and was really good fun. Andrew, the Centre Head of the Edinburgh facility, provided us with a bit of eye candy - very good looking guy!! We were given a goodie bag of make up and cleansing/moisturising products which was really fantastic stuff! It was all Clinique, Clarins, Estee Lauder products and must have been worth a fair bit!!
Wednesday 1st November. CT scan. I had to take this dose of some vile drink stuff before being able to have the CT scan. Two doses of it! One the night before and another on the day of the scan. And then I wasn't allowed to eat or drink for 2 hours prior to the scan. Yet another canular into my vein so that the nurse could put some sort of dye through me. I had to lie on the machine and they run it into what looked like a giant polo mint! The dye that was being given made me feel really hot and it also had the weirdest sensation of making me feel like I'd wet myself!! I felt like I had to try and hold my pee in which was good exercise for the pelvic floor muscles I guess!! Not that I was wetting myself you understand - it just made it "feel" like I was!! Not an overly pleasant sensation!!
The signs of menopause symptoms set in during this cycle too. I began to get hot flushes and my period stopped. I was also getting quite short tempered with the children. They were dealing with everything so wonderfully and we were getting through each day supporting each other, but I think with all the hormonal changes happening within my body, I was getting quite tetchy with them. I had been given some leaflets about breast cancer, chemotherapy, hair loss etc and had started reading through them. This was possibly not the greatest idea! There was a couple of mentions of having 5 - 10 years and maybe I was misconstruing the meaning of it but it completely freaked me out!
I wanted a damn sight more time than that!!
Session 3
Wednesday 8th November. I was feeling really quite low again, and that may have had some bearing on the way that chemo went. My unobliging veins were playing up and Linda struggled to get the canular thing into one. Once it had been sited the FEC drugs wouldn't run through fast enough and it was all taking such a long time. After two syringes had gone through, over rather a long time, Linda decided that she wanted to re-site the canular, because of the time taking to run through and also because I was beginning to get quite uncomfortable with it. Off we went to the wee room to get it re-sited. My veins had decided they simply didn't want to play ball! Eventually the only place we could get a vein to play was on the inside of my wrist. Ouch!!! God it was so sore!! Linda managed to get the rest of the FEC through fairly quickly after that, but oh boy did it hurt. That night I was particularly washed out - probably due to the trauma of having the canular re-sited and the general problems of the day.
During this cycle I felt I could smell a weird aroma around me. I kept asking everyone if they could smell it too. But nobody could. I still think it was the smell of the drugs in my system oozing out of my pores!! By now my taste buds were gone. I couldn't really taste anything properly and I felt nauseous quite a lot. I craved taste!! I was desperate to have something to eat that was really tasty and began fantasising about food - even food that I knew I didn't like! Mum and Dad took me out for lunch one day in the hope I'd find something that would tantalise the taste buds, but oh god!! I was ill!! I had a lovely lunch and could taste a little of it, but then I got this gripping pain in my stomach and had to dash to the toilet. My lunch, which I'd actually really enjoyed for a change, went right through me! The sweat was dripping off me and I thought I might faint. We went straight home and I went to bed. I had absolutely no strength at all. I live in a third floor flat and during all the treatment I had I really have no idea how I managed to climb the stairs every day!! Sheer grit and determination I think.
My veins weren't coping very well with being poked and prodded with so many needles! They had become inflamed, which was apparently another unpleasant side effect caused by the Epirubicin. I was still shutting myself off sometimes - just didn't want to speak to people! I was physically sick for the first time during treatment. I possibly had some sort of stomach bug, which would explain why my lunch hadn't gone too well, and of course with chemotherapy wiping out your immune system, I'm surprised I hadn't been sick before. I had a couple of days in bed and literally didn't do a thing. The kids were so helpful. They knew when not to play up and when to just get on with things and help me out. They really were ever so good for me on the whole.
Friends from both online and "real life" sent me cards and flowers and gifts to cheer me up and let me know they were thinking of me and rooting for me! I got some absolutely stunningly beautiful flowers sent to me with a card saying "from a Well Wisher". And to this day I still don't know who sent them! I never found out - but they were the most gorgeous bouquet of flowers I've ever seen!!
At the end of November I felt well enough to go to an online meet down in Middlesbrough - the Boro Meet! Lemon and her husband picked me up and we drove down to meet up with the gang. It was just what I needed to give me a positive lift again! We had such a laugh!! The first night, the three of us stayed in the same room in the hotel. I slept on the couch bed. There was an adjoining door through to the bedroom next door, but it could easily have been a cupboard door. I was having a right nose around the room - checking out the bathroom and the desk and the tele etc. So of course I tried to open the "cupboard" door. When I opened it I realised that it wasn't actually a cupboard but this adjoining door into next door's room. When I tried it the damn thing flew open and there I went falling into a total strangers room in this hotel! Thank God they weren't in the room!!! I thought Lemon and me were going to wet ourselves laughing about it and we made a very hasty retreat out to the pub after making sure our side of the door was well and truly locked!! For the meet up itself we all met in the pub at lunchtime. I had made "bombs" (chocolate truffles) and "snowballs" (chocolate truffles with coconut) to take with me to hand round everyone. Our Em and Chewy (nicknames) took the total piss out of them all afternoon because they had kind of flattened out a bit. So they were now called turds and turds in a snowstorm!! After the pub we all headed back to Babs' house for some more drinks and a laugh. Her neighbour brought a Karaoke in which I took over!! Jilly Two Mics!!!
It was a great weekend and quite the tonic I required to perk me up again ready for the final session of FEC.
During this cycle I felt I could smell a weird aroma around me. I kept asking everyone if they could smell it too. But nobody could. I still think it was the smell of the drugs in my system oozing out of my pores!! By now my taste buds were gone. I couldn't really taste anything properly and I felt nauseous quite a lot. I craved taste!! I was desperate to have something to eat that was really tasty and began fantasising about food - even food that I knew I didn't like! Mum and Dad took me out for lunch one day in the hope I'd find something that would tantalise the taste buds, but oh god!! I was ill!! I had a lovely lunch and could taste a little of it, but then I got this gripping pain in my stomach and had to dash to the toilet. My lunch, which I'd actually really enjoyed for a change, went right through me! The sweat was dripping off me and I thought I might faint. We went straight home and I went to bed. I had absolutely no strength at all. I live in a third floor flat and during all the treatment I had I really have no idea how I managed to climb the stairs every day!! Sheer grit and determination I think.
My veins weren't coping very well with being poked and prodded with so many needles! They had become inflamed, which was apparently another unpleasant side effect caused by the Epirubicin. I was still shutting myself off sometimes - just didn't want to speak to people! I was physically sick for the first time during treatment. I possibly had some sort of stomach bug, which would explain why my lunch hadn't gone too well, and of course with chemotherapy wiping out your immune system, I'm surprised I hadn't been sick before. I had a couple of days in bed and literally didn't do a thing. The kids were so helpful. They knew when not to play up and when to just get on with things and help me out. They really were ever so good for me on the whole.
Friends from both online and "real life" sent me cards and flowers and gifts to cheer me up and let me know they were thinking of me and rooting for me! I got some absolutely stunningly beautiful flowers sent to me with a card saying "from a Well Wisher". And to this day I still don't know who sent them! I never found out - but they were the most gorgeous bouquet of flowers I've ever seen!!
At the end of November I felt well enough to go to an online meet down in Middlesbrough - the Boro Meet! Lemon and her husband picked me up and we drove down to meet up with the gang. It was just what I needed to give me a positive lift again! We had such a laugh!! The first night, the three of us stayed in the same room in the hotel. I slept on the couch bed. There was an adjoining door through to the bedroom next door, but it could easily have been a cupboard door. I was having a right nose around the room - checking out the bathroom and the desk and the tele etc. So of course I tried to open the "cupboard" door. When I opened it I realised that it wasn't actually a cupboard but this adjoining door into next door's room. When I tried it the damn thing flew open and there I went falling into a total strangers room in this hotel! Thank God they weren't in the room!!! I thought Lemon and me were going to wet ourselves laughing about it and we made a very hasty retreat out to the pub after making sure our side of the door was well and truly locked!! For the meet up itself we all met in the pub at lunchtime. I had made "bombs" (chocolate truffles) and "snowballs" (chocolate truffles with coconut) to take with me to hand round everyone. Our Em and Chewy (nicknames) took the total piss out of them all afternoon because they had kind of flattened out a bit. So they were now called turds and turds in a snowstorm!! After the pub we all headed back to Babs' house for some more drinks and a laugh. Her neighbour brought a Karaoke in which I took over!! Jilly Two Mics!!!
It was a great weekend and quite the tonic I required to perk me up again ready for the final session of FEC.
Session 4
Wednesday 29th November. Final session of FEC chemotherapy. I was so tense going up to the hospital after the palaver of the last one. I kept trying to psyche myself up for it! Lemon and her husband came over to go with me. Was all set for it and had my hand in hot water for ages to try and encourage the veins and was deep breathing and trying to stay focused and relaxed. This one though proved to be the worst one!!
The first attempt was in a vein at my knuckle of the fore finger. No chance!! The second attempt was on the inside of my wrist again and hurt like hell! No chance!! I was starting to get stressed and upset at this point and it was sore and just so not happening for me. Finally I agreed to take the relaxant pill to see if that helped and Linda sent me away for half an hour to chill out and get a cup of tea. When I returned to the haematology ward the third attempt was on the side of my wrist. Linda nearly got it but then the vein kinked and we couldn't get the canular in. The fourth attempt was on my outer forearm. Oh my god!! Bloody hell it was agony!! I couldn't contain the emotions any longer and started crying - out of pain and frustration. Linda told me enough was enough and refused to try again because I was becoming too distressed to continue. My arm was coming up in bruises before our eyes! Then came the suggestion that a Hickman Line may the best course of action for me because of the reluctance of my veins to co-operate. I really didn't want to go down that route but due to the trauma I was having, I agreed to think about it. I was told to go home and rest before returning the following day to try again.
Linda had sent me home with another relaxant pill and instructions to take it first thing in the morning and then to relax in a hot bath to help the veins. I didn't want to go through any of it ever again!! I'd had enough of it all. I was fed up to the back teeth of being a pin cushion and of the hospital and the treatment and I was fed up of trying to stay positive and upbeat all the time. I'd made the conscious decision that I wouldn't let my mum, the children and all my friends (especially online) see how upsetting it all was - I only wanted them to see me being positive and coping with it all. But now I was so fed up with it and I was so bloody angry that it was even happening at all!! It's not just the hair on your head that goes either - it's every hair on your entire body!!! Even nasal hair!! Every time I was looking in the mirror I could see more and more hair loss. My eyebrows were beginning to look sparse and my eyelashes were all but gone. I honestly wasn't sure I was going to get through all this horror and keep it all together. Imagine a jumper being knitted - I felt like I was that jumper and the wool was beginning to slowly unravel and fall apart and all I wanted was for someone to grab the knitting needles and catch all the dropped stitches and knit me back together again.
So off I went to hospital for take 2! Alayne came with me and we were there first thing in the morning. Thank God!! Linda and one of the other chemo nurses managed to get a vein first go - in my thumb of all places!
It was still sore but once the canular was in, it was the quickest session we'd had!
I was quite tired this session and quite nauseous too. I think the trauma of actually getting the chemo this time had some bearing on that.
Isobel served to be a tonic for me. We supported each other going through it all - her treatments falling approximately 2 weeks after each of mine - and she knew exactly how I was feeling and shared the same worries. We spoke on the phone and got together for lunch at her house as often as we could. One discussion we had was regarding the total hair loss! Oh god we laughed so much about it - because we had to! We spoke about our eyebrows and lashes going. Hers hadn't started to fall out yet and mine had. She told me that she had visions of putting on her make up and her eyebrows slipping down her face because of the hot flushes she was experiencing. The picture that conjured up in my head was hysterical and I couldn't stop laughing about it! I had this vision that I would waken one morning and when washing my face that I would wipe an eyebrow away but the other one wouldn't be ready and I'd be left with one eyebrow!! We also discussed the loss of pubic hair and I made her crack up laughing when I said to her that the young girls all go for the Brazilian look, whereas I was going for the total Gobi Desert look!!! There was nothing left there!! That felt very odd indeed!
Christmas was coming and I had to try and get into the spirit of things for the children. We put the Christmas Tree up and they decorated it - tacky as ever!! I loved it! The school had their annual Christmas show and both my girls had a part in it, singing. I was bursting with pride!
I had an appointment with Dr Yuille to discuss Radiotherapy treatment. She was friendly and put me at ease and told me she would arrange for radiotherapy to begin as soon as possible after my three week cycle was complete. She explained the side effects of the treatment, saying that tiredness would be the most prominent - not because of the actual treatment but more because of the travelling every day - I had to go to the Western General in Edinburgh for it. There was also the possibility of angina and increased risk of osteoporosis in 20 - 30 years time. I laughed when she said that - if I'm around in 20 - 30 years time I won't be caring about those problems; I'll just be relieved and happy to be alive!!!
Tuesday 19th December. I had to go over to the Western to get measured up for Radiotherapy treatment. I had to be marked out so that each time I went they would know exactly where to place the machine to target the area with the blast of radio. The nurse asked me if I wanted permanent tattoos or temporary ones. Eh!!?? Tattoos!!! I hate tattoos! The two options were explained thoroughly to me and as I didn't fancy the thought of having cling film attached me all the time to keep the temporary markings safe from being washed off, I opted for the permanent ones. Oh my god! I had to lie on this big laser machine while they moved a green laser beam around my left breast area and drew crosses on me to mark where they wanted the tattoos to go. It felt like they were having a wee game of noughts and crosses on my chest!! When they were happy they had marked everything out correctly, they rubbed this dye/ink stuff on me and then jabbed me with a needle thing to make the mark. Apparently this was very similar to getting a real tattoo done. No Thank You!!! Was bloody sore! There are 6 dark blue pin prick tattoos around my left breast area - my medals of honour at what I came through!!
Christmas ended up being really good fun. The kids were up early - old habits die hard!! We all received some wonderful gifts from my Australian friends - real treasures to keep. We went to my sisters for dinner and spent time with the family, before heading to Alayne's in the evening for a wee party night! We played silly games and had a brilliant laugh.
Considering I had been dreading the festive period, I had a truly fantastic day with my closest friends and family -
especially my wonderful children.
The first attempt was in a vein at my knuckle of the fore finger. No chance!! The second attempt was on the inside of my wrist again and hurt like hell! No chance!! I was starting to get stressed and upset at this point and it was sore and just so not happening for me. Finally I agreed to take the relaxant pill to see if that helped and Linda sent me away for half an hour to chill out and get a cup of tea. When I returned to the haematology ward the third attempt was on the side of my wrist. Linda nearly got it but then the vein kinked and we couldn't get the canular in. The fourth attempt was on my outer forearm. Oh my god!! Bloody hell it was agony!! I couldn't contain the emotions any longer and started crying - out of pain and frustration. Linda told me enough was enough and refused to try again because I was becoming too distressed to continue. My arm was coming up in bruises before our eyes! Then came the suggestion that a Hickman Line may the best course of action for me because of the reluctance of my veins to co-operate. I really didn't want to go down that route but due to the trauma I was having, I agreed to think about it. I was told to go home and rest before returning the following day to try again.
Linda had sent me home with another relaxant pill and instructions to take it first thing in the morning and then to relax in a hot bath to help the veins. I didn't want to go through any of it ever again!! I'd had enough of it all. I was fed up to the back teeth of being a pin cushion and of the hospital and the treatment and I was fed up of trying to stay positive and upbeat all the time. I'd made the conscious decision that I wouldn't let my mum, the children and all my friends (especially online) see how upsetting it all was - I only wanted them to see me being positive and coping with it all. But now I was so fed up with it and I was so bloody angry that it was even happening at all!! It's not just the hair on your head that goes either - it's every hair on your entire body!!! Even nasal hair!! Every time I was looking in the mirror I could see more and more hair loss. My eyebrows were beginning to look sparse and my eyelashes were all but gone. I honestly wasn't sure I was going to get through all this horror and keep it all together. Imagine a jumper being knitted - I felt like I was that jumper and the wool was beginning to slowly unravel and fall apart and all I wanted was for someone to grab the knitting needles and catch all the dropped stitches and knit me back together again.
So off I went to hospital for take 2! Alayne came with me and we were there first thing in the morning. Thank God!! Linda and one of the other chemo nurses managed to get a vein first go - in my thumb of all places!
It was still sore but once the canular was in, it was the quickest session we'd had!
I was quite tired this session and quite nauseous too. I think the trauma of actually getting the chemo this time had some bearing on that.
Isobel served to be a tonic for me. We supported each other going through it all - her treatments falling approximately 2 weeks after each of mine - and she knew exactly how I was feeling and shared the same worries. We spoke on the phone and got together for lunch at her house as often as we could. One discussion we had was regarding the total hair loss! Oh god we laughed so much about it - because we had to! We spoke about our eyebrows and lashes going. Hers hadn't started to fall out yet and mine had. She told me that she had visions of putting on her make up and her eyebrows slipping down her face because of the hot flushes she was experiencing. The picture that conjured up in my head was hysterical and I couldn't stop laughing about it! I had this vision that I would waken one morning and when washing my face that I would wipe an eyebrow away but the other one wouldn't be ready and I'd be left with one eyebrow!! We also discussed the loss of pubic hair and I made her crack up laughing when I said to her that the young girls all go for the Brazilian look, whereas I was going for the total Gobi Desert look!!! There was nothing left there!! That felt very odd indeed!
Christmas was coming and I had to try and get into the spirit of things for the children. We put the Christmas Tree up and they decorated it - tacky as ever!! I loved it! The school had their annual Christmas show and both my girls had a part in it, singing. I was bursting with pride!
I had an appointment with Dr Yuille to discuss Radiotherapy treatment. She was friendly and put me at ease and told me she would arrange for radiotherapy to begin as soon as possible after my three week cycle was complete. She explained the side effects of the treatment, saying that tiredness would be the most prominent - not because of the actual treatment but more because of the travelling every day - I had to go to the Western General in Edinburgh for it. There was also the possibility of angina and increased risk of osteoporosis in 20 - 30 years time. I laughed when she said that - if I'm around in 20 - 30 years time I won't be caring about those problems; I'll just be relieved and happy to be alive!!!
Tuesday 19th December. I had to go over to the Western to get measured up for Radiotherapy treatment. I had to be marked out so that each time I went they would know exactly where to place the machine to target the area with the blast of radio. The nurse asked me if I wanted permanent tattoos or temporary ones. Eh!!?? Tattoos!!! I hate tattoos! The two options were explained thoroughly to me and as I didn't fancy the thought of having cling film attached me all the time to keep the temporary markings safe from being washed off, I opted for the permanent ones. Oh my god! I had to lie on this big laser machine while they moved a green laser beam around my left breast area and drew crosses on me to mark where they wanted the tattoos to go. It felt like they were having a wee game of noughts and crosses on my chest!! When they were happy they had marked everything out correctly, they rubbed this dye/ink stuff on me and then jabbed me with a needle thing to make the mark. Apparently this was very similar to getting a real tattoo done. No Thank You!!! Was bloody sore! There are 6 dark blue pin prick tattoos around my left breast area - my medals of honour at what I came through!!
Christmas ended up being really good fun. The kids were up early - old habits die hard!! We all received some wonderful gifts from my Australian friends - real treasures to keep. We went to my sisters for dinner and spent time with the family, before heading to Alayne's in the evening for a wee party night! We played silly games and had a brilliant laugh.
Considering I had been dreading the festive period, I had a truly fantastic day with my closest friends and family -
especially my wonderful children.
