Post Chemo

I feel a bit like all my wit and clarity has left me. If I had any to start with that is.


I had my last chemo on 9th June, that again knocked me for six.... bastard Docetaxel. But I was well enough by the 18th to go to Matt and Suzy's wedding party! What a blast that was! I even had my make up done specially.....

We made the most of my baldness, and whilst drinking prosecco with Mads and Emily I let them both loose on the back of my head! I think there was a cross design.........no on can remember!

I have some very VERY happy memories of that night! The perfect way to celebrate the end of the worst bit of my treatment! There was a lot of giggling, wine and gin that night!

These are my 'Sugar Free' girls! These are the ones that have kept me sane on the days and evenings that I've been too poorly to get up.... our WhatsApp group chat has really been a lifeline.....even though there's really only one properly sugar free bird there, the rest of us are hangers on!!


I started radiotherapy this week.......interesting! This week I have been mostly getting zapped at the tumour base. This has involved an extra attachment on the machine, needing for it to be practically touching me and having Franken-Tit covered with some sort of rubbery sheet of bubble-wrap whilst I'm cooked! It doesn't hurt, but it's weird having your baps out and having three.... yes THREE people jiggle you about to line you up under the machine! There's a lot of talking and discussing numbers too....100.3 here... yes er, I've got 83.5 sup.....left.......there.......


I took it upon my own self to make a nicer gown for my trips. They request you wear a radiotherapy top. This is to maintain your modesty between the changing area and the treatment room. But they are rather hideous.......plain blue with a zipped front and Velcro shoulders. So, I made my own, from a piece of left over curtain fabric!

I've drafted a pattern, I might make some more.....it was well received! I think women might like to feel a little less clinical when they're having their treatment!


5/20 tomorrow...one week down, 15 to go!

Ive been slack.....

Well, poorly and incredibly busy more like but you know want I mean. My head is a mess, I have so much I want to do and no energy it's rubbish.


Spending 3 whole weeks with my sister and her family was lovely despite the circumstances. Her kids are growing in to fine young people....a credit to her and her husband. A vast proportion of the time they spent here was spent sorting stuff out with mum. We started to clear the workshop......that's still a work in progress mind! Boxes and boxes of nails, screws and blades. Rolls of sander paper, piles of product catalogues. Heaps of sawdust, stacks of randomly shaped pieces of wood. A couple of half finished window frames and half a chair..........Not to mention three routers, numerous planes, chisels and saws......almost as if he may have misplaced something and just bought another to replace it!


We spent quite a cathartic day clearing and tidying.......it actually was like he'd just stepped out of the door and would return at any moment......


There was some wine too.....white wine and Dad was never much of a white wine drinker. We divided the boxes up and I thought no more of it, not wanting to crack any of it open until I felt better. Well what a good job I didn't......because it wasn't Dads!!!! Turns out he'd stored a few boxes for a friend and she had had the awful task of approaching us to ask for it back!  She must have stressed over what to say for ages. So our box was still intact and could be returned to its rightful owner, but the boxes that Mum and my sister and brother in law had taken were no more.......Ha, they were delicious by all accounts! Now that really did make me laugh!


I hate what a cancer diagnosis does to your mind.


You become paranoid about every little ache and pain, and as such I had taken myself back to the GP to see about a mole on my face. Liam had been on at me for a long time to get it checked out. I wasn't overly concerned about it before but now everything that might be sinister takes on a much bigger presence. I love the sun and the idea that I might have developed skin cancer started to grow in the back of my mind.


I was referred to Darent Valley (charming) Hospital for a clinic with a dermatologist. Again, I can't fault the speed of referral and it slotted neatly with my chemo. I asked Katie to drive me up there, didn't think I could cope with the anxiety of the appointment and the drive! Anyway.......it's nothing sinister, and I asked her to look at one on my back too, nothing sinister there too. Can't tell you how relieved I was. Obviously....... So I emerge from the consulting room and tell Katie that it's just an age spot (again, charming I'm 42 FFS) ......... or more precisely that I have ''AGE'' on my face.
Her face fell...... ''AIDS, you have AIDS on your face?'' Then a smile and laughter......just what the doctor ordered!


So now, the end of May 2016 sees me with 5 chemos down (three FEC and 2 T) and one to go. I'm not entirely sure how I have got this far. This last round of T has been really hard. I was lucky to have a friend take me last time. REALLY LUCKY......She drove all the way from Salisbury just to take me to my chemo session. I think she likes me, which is good, because we LOVE Nina! (and the girls and Miff and Retired Major Matt) I'm only just feeling human again on day 8, it seems to take me longer and longer to get over each assault on my system. Onwards and upwards though. I spend my time planning nice things to do when I'm fit, thinking about days out and trips away......I've even been planning decorating the hallway. And I HATE decorating! I've been sewing a bit too, bits and pieces for friends and a couple of things for me.


 I've applied for a Honey Rose Foundation special wish, which organises nice things for adults over 40 who have a life threatening illness. Plus we've been offered a cottage in Dorset for a few days in the summer. If the rest of my treatment goes to plan we may still squeeze a holiday in before the boys head back to school and college in September.


Next milestone will be my last Chemotherapy, on June 9th. I cannot wait to get it over with. It's robbed me of far too much time. Then I will be celebrating by partying long into the night at Matt and Suzy's wedding party the weekend after! I decided to treat myself and am getting my makeup done and am planning to go bald too............I will post pictures, I promise, Its shaping up to be a marvellous evening.........!!!




c xx

Cycle 2 day 7........ugh.

FEC FEC FEC


There....I suggest you read that aloud in the voice of the old stinky priest from Father Ted.


This cycle has been particularly hard, but more on that later.


Last cycle, as I am surrounded by such lovely friends and family I decided to include them in my experience. In particular, my hair loss experience....... whether they wanted to be included or not!


The hair started coming out on day 13, just as the wig lady had predicted. Just slowly to start with, a few strands here and there. Day 13 for me was a Tuesday (I think). By the Saturday I had thinned so much had resorted to a hat and had arranged the big shave for the Monday evening (day 18).

 I'm fortunate to call my hairdresser a close friend so I asked her, and a group of friends over on the Monday night to do the deed, clipper me to stop the awful hair ache that you hear about but cant quite imagine how uncomfortable it is.


So they came, we drank champagne, we laughed, cried and hugged and said goodbye to my hair.

 

It was cathartic....

I can't tell you how weird it felt to have it all gone, I've always had very long hair and to have the decision of whether to cut or not taken away from me felt very hard. But having no hair ache, no wispy bits in my face, no lengths all over the floor and in my dinner........strangely liberating!

I have to thank..... Mum, Anna, Louise, Lianne, Emily Mads Lou and Suzy for being there and helping me through, couldn't have done it without you all....can't do it without you all xxx



Then there was cycle 2......

Thursday 17th March 2016

Obligatory Wonder woman photograph....... My hat hurt, that's why the ears are out, I look a treat don't I? This session went well, quicker than the first lot and less of a headache, but maybe as I knew what to expect....anyway Thank you Suzy for the lift, and the hot chocolate and the chat..

Earlier that morning, I'd been over at Maidstone hospital. My daddy who had bladder cancer last summer had been taken in around the time of my first session, with acute pain and infection. He'd not really recovered properly after his big op in November and we had limped through Christmas and the new year. We learned early in to his stay that the cancer had returned......well, that it had never really gone away and that he was now stage 4. He had metastatic cancer in his spine, pelvis, kidneys and liver. He also had pneumonia. Seeing him that morning, completely unaware that either Mum, me or his brother Bud was there was heart breaking. His breathing was laboured, he was hot and restless.

We all feel like we have been dumped on, from a height. And sadly, on Thursday 17th, whilst I was hooked up to my second chemo he slipped away. Fucking unfair. My sister didn't get here in time........but she's here now, and we're ok.

I love you daddy xxx

 

You couldn't make this shit up!

So yesterday was day 62 after diagnosis.


And day 1 of chemotherapy.


I was seen to by Lamin, a cheeky Ugandan nurse who does a good line in dead pan dry humour! Drink plenty he says...............not wine though! Bastard. Party pooper! Today I feel a little hungover, not sick, I am keeping on top of my meds and doing self obs regularly (temp).......I was treated to lunch out today with my lovely friend Emily!



So here I am, sporting my lovely Wonder Woman T-shirt, sent to me by a friend......now to be known as dirty Jennie.......a filthy mind is a terrible thing to waste! I changed my FB profile pic to WW too, although the one Jennie sent me was hilarious and very saucy, I used the one Kerry suggested!

I received this later in the day too, all the way from friends Salisbury.........I can't wait to get down to see them all! Thank you Matt, Nina, Kitty Pippa and Fernie

And I received this all the way from Shanghai, you have to love free hospital wifi! Thank you Matt Emma and Birdy x

Now the crap news.......


My Daddy, whom I spent the summer ferrying to and fro form his chemotherapy sessions for bladder cancer is back in hospital with acute pain. It seems like the COCKWOMBLING cancer has hung on, hidden and spread. This is gutting and frustrating and scary and saddening and I am just numb.
My dear sister and her family were coming over this year, to visit from Australia. On advice from the Drs, they're  coming sooner.......


Enough already, my poor family is exhausted xxx


c xx

Cake or Death?

So, I got ma hair did on Saturday!


I have, like forever had long hair. The last time I had a 'proper' cut was when my youngest was born. I think I had it about as short as it is now, and this is SHORT for me!! My hair has been something I could hide behind, something to express my individuality.....it was me.


It was actually, an easy decision to make, I know I'm going to lose my hair. There are cold caps you can wear during chemo that reduce the blood flow to the hair follicles. Which in turn limits the amount of drug that gets to them, reducing hair fall. It would still thin though and I am of the opinion that I'd rather have no hair than a patchy comb over!


Liam and I also discussed the options on offer......no chemo full head of hair almost certain death sooner than we would like, chemo.......bald and I get to live......I already told you the stats!


So it was a 'cake or death' scenario......... (insert bald for cake) no brainer really!

I always think a big cut is a waste of good hair. A couple of friend's daughters have recently sent their hair to a charity which makes wigs for children suffering chemo related alopecia. I thought I'd do the same.

Lovely Louise, managed to get 9" off!

 I owe her two hair elastics........I forgot to bring any!


I'm posting the hair off today. I feel good!

c x

3rd Boob!

It was my 42nd birthday on Friday, in years past, Liam would take the day off and we'd have a day out. This year, with my diagnosis hanging like a black cloud over us we couldn't do our usual grown-up jaunt down to Brighton for a boozy lunch and a wander through the lanes. I'd had an appointment on the Wednesday before, the one where I received the marvellous news that technically I was cancer free....... so Liam had had a half day then.


We decided to do birthday doings on the Saturday, Liam's brother and I have birthdays in the same week and by luck, both he and his GF were free on the Saturday so we met up. We had a fabulous walk up on Devils Dyke, the weather was kind and it really blew away the cobwebs! We ate at the pub there and I could barely move by then end, completely full of chicken pie, and sticky toffee pudding (sorry to my sugar free girls, Suzy, Emily, Mads and Lou).

I had a niggly feeling under my arm, where the scar was, felt my seroma was filling up. I took my painkillers and drank my wine, but I had to loosen my bra strap by the end of the meal because I was so uncomfortable!


Over the next 4 days it got bigger and bigger, until yesterday..........it was the size of a tennis ball! My scar was tight, and getting redder and redder, I couldn't put my arm down, I looked ridiculous, remember the nursery rhyme...'Im a little teapot'? It was becoming like a 3rd boob!


Thank goodness I had an appointment at the hospital already planned. I was seeing the oncologist at 5pm to discuss chemotherapy and I had rung ahead and asked (was prepared to beg) for one of the lovely breast care nurses to look at my 3rd  boob.


So I met the oncologist, I start FEC-T shortly. You'll all be thrilled to know that with treatment, I now have a 90% chance of surviving to 52!


Back to my 3rd boob. The nurse took a look and agreed it could do with draining. Didn't hurt as the whole area is still largely numb. So she's pulling at the plunger on her syringe, chatting away about the biggest ones she's drained........around 300ml and I'm not really keeping up with how many times she's emptied it........I am very proud to tell you that I had collected 200ml of fluid! That's almost two thirds of a can of coke. The nurse then proclaimed the understatement of the day.... "well, that was worth doing!"


I'm going back next week, so that they can look again as I've been warned it'll probably fill up again even if it's to a lesser degree. What's nice though, is that I can sleep on that side again and I feel like I can drive, now I'm not having to stick my elbow out all the time!


It still hurts, well, sort of tender, but I am now making myself busy catching up on sewing and seeing friends and thinking about getting in to work before Chemo starts!




c xx

Birthday swellings!

Ick Warning!

I've included a photograph!

It's my birthday today, 42!

I've been spoilt, which is lovely, lots of cards and nice little goodies fill the kitchen table. Mum and Dad are coming up soon for a bit of breakfast and coffee. I am incredibly fortunate. I am.

At the appointment on Wednesday the nurse mentioned that I might have a bit of fluid gathering (for a party?) under my arm. I have to admit to it still feeling weird there. Scars are healing nicely, even the consultant exclaimed in delight 'oh that looks lovely' and my amended boob!

But, I'm incredibly uncomfortable under my arm, and look what's there!

This is a seroma.

I've read about them, I even googled images of them to double check I wasn't imagining it! They're harmless apparently and the body should reabsorb the excess fluid over time. But then sometimes it doesn't....and I have visions of it getting bigger and bigger and being unable to do anything because I'll have a football under my arm!

I'm going to keep well away from Suzy, who looked delighted at the prospect of having to have it drained.... or popped as she put it! Freak!

I'm back on Wednesday to see the Oncologist and I'll see if the nurse can look at it then......if I can last that long!

So tonight, I will be sipping prosecco, eating tiramisu and feeling contented by the fire, with my boys........and my little swelling will join me! Wonder if when it does get drained they find G&T in there!!!





PVA glue, wine and mock exams

My eldest boy has had two weeks of mock GCSE's to contend with, all coinciding with my surgery date slap bang in the middle. Bloody charming! Awesome timing! Still, they seemed to go along without any major hitches. A huge achievement for him as he'd been far too anxious to attempt any back in July last year.


His results (EPIC) are coming back in dribs and drabs, and we are so very proud of him. College is on track for September!


We decided to go out for dinner last Friday night, partly in celebration that the bleeding exams were over and also because I was 7 days post op at that point and feeling pretty good, if a little sore as the feeling was coming back in my skin near where all the action was. Dosed up on paracetamol and ibuprofen we went to a local Pub that has just reopened with new owners. It was lovely to be 'out-out' as Mickey Flannigan would say! The place was super busy and even at 6.30pm all but one of the tables had reserved on them!


We sat and ordered, both boys eagerly perusing the menu! I ordered, on recommendation from my friend a large glass of rioja. Oh My Gawd........ it was delicious! And I was instantly warm, fuzzy and a bit giggly! The food, came and went, lovely and we discussed what would happen next with my treatment..........


At this point we don't know exactly what I will need, apart from definitely radiotherapy, but possibly chemotherapy too. That's for the Oncologist and I to decide next Wednesday. So we talked about my hair.....and that if I have to have chemo that it will most likely fall out. Fred offered this up.


'Why don't you shave it all off and then get it made into a wig'

Nice!


'We could cover you head in PVA glue and just stick it to your head each morning mum'


Awesome!


'You could peel it off at the end of the day like when it's on your fingers in class.......'


Starting to realise he's taking the piss!


Good job we were all laughing because when the bill came for the meal and drinks we were horrified to discover my one glass of wine had cost £8.30!!!!!!


Ouch!


So back to now.


I saw the consultant yesterday, he must be an absolute genius because he managed to get all the cancer and leave me with a decent sized boob! Also, he took 13 lymph nodes from my armpit area and only one had cancer cells in! Feel a bit peeved that I had to have them all out.......but I am trying to counter that with the knowledge that if they'd only taken a couple, I may have needed a second surgery to get more later on. So no more surgery. I'm done.


I see the oncologist next Wednesday to discuss further treatments. One step further, closer to my future!


c x

Freedom,

This week, I have mostly been 'being annoyed with my drain'.


Let me explain.


I was discharged on Saturday morning, not a moment too soon after a very disrupted night in Maistone Short Stay Unit. I can't fault the care, but when the night staff do your morning obs at 6.30am and offer you digestive biscuits for breakfast because they don't usually have overnight guests......you start to wish you had actually gone home the night before.


My neighbour opposite was an older lady who had huffed and puffed and effed and jeffed at every opportunity after her procedure on Friday afternoon. I'd had the privilege of being first down on Friday morning and as a result had been back up on the ward by 11.30am. Anyway, this dear soul opposite me, once she had found her bearings, muttered away to herself for most of the afternoon. I was fortunate enough to have had a couple of visitors come and entertain me until about 7pm so I didn't notice her much until they'd gone. It seemed then that I was fair game.


She managed to catch my eye, I was polite and smiled over to her. Big mistake! I am now a theoretical expert in how to crochet a granny square, how to turn that into a blanket, how to knit a striped scarf and all about her husbands diabetes. All the details, missing toes, pacemakers and her fertility problems and when they lost their house because it was a tied cottage........... Another lady opposite me gestured to me to put my earphones in at this point, which worked like a charm!


So, apart from feeling quite uncomfortable and the ward being noisy I didn't sleep much and my neighbour was still muttering away to herself at 11.30pm.


Once I was home I retreated to my own bed, all smooth sheets, hot water bottle and snuggly duvet. Utter bliss!


And now to my drain, as I'd had a level 3 axillary clearance....sounds like some military security thing, I had to return home with a wound drain in place. On the whole this was ok. Apart from it looking like some sort of urine catheter bag, bulb thing. Going to bed every night with it was a challenge, trying to not get too tangled up, trying not to let it dangle out of the bed, hoping it wont spring a leak!


I had to measure the fluid every day. I have been draining around 70ml of lymph fluid every 24 hours.  Consistently.


(I wont mention the long strings of pink jelly.....think Colin the caterpillar from M&S)


When I went to the surgery to see the nurse to have it removed they didn't want to as it was still actively draining. Even though I was on my 5th day, the day it was supposed to come out.


So I come back home and have to ring the Breast Nurse at the hospital. She confirms it must come out, so back I went this morning to have it removed. Now, a friend..........the one who eggs me on to write this, decided not to tell me that it might hurt. To be fair, I had thought it might pull a bit, when they snip the stitch but it didn't.......although, as she was pulling the tube out it did feel like there was about a mile of it under my ribs!


I was beginning to get a bit stir crazy, yes even after only 5 days. So I asked Suzy if she would take me out on Thursday morning. Just to Beals for breakfast. It was perfect! Put it this way, I didn't have to beg and as she's such a regular there our coffees were on our table pretty much as soon as we'd sat down! It was exactly what I needed!




So, I'm patched up, and released from my tubing which had felt like a useless third arm, I feel like a new person.


Still mostly numb, the odd shooting pain but my range of movement is improving every day. Plus people telling me how well I look helps, I do feel well.


Still feeling the love!!


C xx

Surgery

I love our NHS.


Now that I am home, after my op the 4 week wait for any action on my disease seems to have gone in a flash.


I'm sore, and my entire left armpit area and part of my upper arm is completely numb. Have to admit to not expecting that. I knew I'd lose the feeling in part of my upper arm, but I'm hoping the feeling will come back in the rest of it over time.


The district nurse turned up at an ungodly hour on Sunday morning. I wasn't dressed, washed or anything. It had snowed overnight and I think she wanted to get her rounds underway in case the weather worsened. Poor lady.....I hadn't even brushed my teeth.


I have a drain in, which I have to empty and measure (icky) and there are some very suspect stringy items in the tubing.......bleurgh! This wont come out until it's draining less that 50ml in 24 hours.......unless a miracle happens...I'll be with it for a while yet!


I am also trying hard to remember to do those bloody exercises. Its so frustrating when it hurts, but I must do them.


So, I'm being looked after well, I'm knackered, but on the up!


xx

Melt down

I think I had been coasting, since the diagnosis I mean. Two weeks of distractions with Christmas and family. Eating, drinking and attempting to be merry.


And then the crippling anxiety that I had suffered from in the past returned.......I now realise that before, this anxiety that I had overcome was around a completely irrational and self fabricated fear.


New Years Day is typically a pretty depressing day, unless you're not nursing a hangover .....I sat on the sofa all day, ploughed through film after film on the tele, in a bit of a daze. We should have arranged to do something, a walk or a lunch or something. Liam stayed in bed and the boys in their rooms playing on their new gadgets.......it was a lonely old dreary day. Great start to 2016!


We limped through the weekend, I stopped eating, started feeling restless at night and found myself making a bed up on the sofa most nights around 2am to avoid disturbing Liam. Monday I took myself to the Dr to get back on the antidepressants I'd successfully weaned myself off two years prior. Knowing I had a stiff ten days or so ahead as my body adjusted to the drug, but very glad to be able to actually do something to help my mind.


That feeling of being trapped, not being able to escape is how I felt. I felt trapped in my mind which was already starting to race ahead.......the op wouldn't work, The cancer was detected in my sentinel lymph node after a microbubble biopsy, so we already know that I have to have all my nodes removed. My mind had decided that I was going to die, that it had spread beyond already...... And that was agony.


By Friday of that week I was almost unable to function at all. An emergency appointment with the Dr and my lovely Mum was a revelation. Having my fears validated even if not quelled as such helped hugely. My GP had read through my notes briefly before she'd called me in. She agreed that I needed something else to get me though the next week, to the op. Without me having to ask........I was sobbing hard most of the appointment, Mum speaking for me (who'd think at 41 you'd need to take your mum to the Drs with you?) she offered me valium and sleeping pills.......to take as and when.


To date I've only used one valium, but I am making the most of the sleeping pills. Something about waking up in your own bed after a reasonable amount of kip makes it easier to face whatever the day throws at you.


I go in on Friday, unless there is some hideous problem with an over booked list for the surgeon. I'm looking forward to it.......in as much as its the start, the start of getting better.


x