Saturday, 30 April 2016

The charity links!

I hadn't planned to blog again after the Picc line saga until the end of this week when I'll know more about what surgery will be etc and time frames, however once more I'm inspired and blown away by support again. 

It was a tough week finishing Chemo, but not being able to get the picc line out, after 4 days and 2 hospitals with 3 different friends at my side.. The line finally came out on Thursday meaning I didn't have to go to hospital on Friday 😊

By Thursday evening we were able to pop to the village pub for tea to celebrate phase 1 of treatment finally being over! Now I just have 3 more injections to give myself to boost my immunity, and then I'm  medicine free until surgery👍🏻

The things I have to look forward to over the next few weeks are regaining my taste buds (looking forward to that wine ladies!), less nose bleeds, loosing the bruised feeling inside my mouth, getting past the aches I've had each cycle and getting phase 2 of treatment mapped out along with booking our willow special family day! 

As I'm under 40 having a life changing illness I applied to Willow for a special day.. They are a lovely (local charity) and specialise in giving people in my situation a day/weekend to really look forward to! I decided as a family it would be great to do a London show and dinner with the boys, a treat I had always wanted them to be old enough to enjoy, and something they've not done before!  

Willow also host a 10k race in October in Welwyn Garden City so if anyone fancies the challenge it'd be great to see you there. Once the rest of my treatment plan is confirmed I am hoping to enter and get my boys involved in the event too. 

Yesterday we were up and out of the house ready for parkrun where I was tail running,  a way of getting me one step closer to my 50th parkrun without feeling the pressure of times 👍🏻.
Running during Chemo has been tough because my heart rate rockets up just walking up stairs at the moment, and with so many out of control side effects it makes it hard to know where to stop pushing yourself and listen to your body. 

It was also the plan to be there for Nikki's headshave and cake sale raising money for Macmillan 
Nikki asked me about 6 weeks ago if I would mind her shaving her head at parkrun.. 'Why would I? great idea, when are we doing it!?' I think was my response.. We got out heads together and looked at dates and knowing my last Chemo was on Monday said how fitting it would be to do it the Saturday after that.. Magically the dates all worked out and Ben the 401 marathon challenge guy was also with us at parkrun and took the honour of doing the shave, made even more special it's a cause close to Ben's heart too

And what an lovely and awesome chap he is, completing 401 marathons raising money and just as importantly awareness for anti bullying charities. 
The Langford gang were invited to join the lunch stop curtesy of Amanda and Malcolm, and we're delighted to take up the invite as we had no plans for the day👍🏻
Amanda also convinced me to join the gang for the 1st Mile of post lunch running... 
We had a blast yesterday, and most of the day cropped up completely unexpected! 

Tomorrow Adam and I are looking forward to marshalling at MK MARATHON,  cheering friends around the course once more, and I will be entering the ballot for that little race in London next spring! 

So that's me done until surgery plans have been made! 

Monday, 25 April 2016

Mission chemo nearly complete... ish!

So this morning I set off after the school run to get a balloon to celebrate my last chemo, collected my last chemo rainbow cake I had made for the unit, and headed off with Jo for my 11 am session. 

Chemo went quickly and smoothly and I was chatting to two new ladies who were having their 1st session today, telling them that aside from my 1st chemo it had all gone pretty smoothly.. Luckily they had both gone home by the time my picc line removal saga began! 

So Jo and I completed our chemo selfies (with Jo swapping sides for the last one!)

So the picc line, was put in on the 11th January at the start of my chemo, it's been used to delivery my chemo drugs, take bloods, and has required a weekly dressing change, I was so looking forward to getting rid of it as it's not the most fashionable accessory.. But has been a useful one for the last few months. 

So this morning I was delighted thinking I could get in the shower without having to use the special cover to make keep the picc line dry. 

Taking the picc line out is meant to be quick and easy, lie on the bed, undo the orange clip thing and pull out the 45cm of thin tube, however after getting most of it out.. The last 5cm and clips did not want to budge, another nurse was called.. Local anethestic, and more tugging, and the vascular specialist nurses where called.. 2 of them! More local anethestic and tugging got the clip things out but the rest of the tube was not moving.. Hot pads kept being applied to try to make the vein more agreeable.. Google was even consulted for ideas.. So after 1h 45 mins they sent me home with a knot in the tube still attached so it can't go anywhere.. And got to go back tomorrow morning to try again😳😳

I'm delighted to be over the chemo, but frustrated to not be rid of the line! 

Yesterday though was a fantastic day celebrating achievement of friends at London Marathon.. Seeing the boost that the cheering delivered was great. Absolutely awesome and the kick up the backside I need to start getting my fitness back on track, and actually can't wait to get control of my body back again! 

Roll on the end of next week when surgery decisions are made and dates set for phase 2 to get under way. 

Monday, 18 April 2016

Blood, sweat and tears..

I knew and everyone around me knew that last weekend was going to be tough for me.. It was going to be my first marathon which I booked a year ago! I was gutted when I was diagnosed that my big plan and achievement for this year was being taken away from me.. 

I won't lie I am jealous of all the wonderful achievements my running friends did in Brighton, the medals and the times.. But I have coped better than I expected.. I had some tears Thursday night and Friday morning, but feeling more in control again on Saturday we went to Brighton for Jake to do his mini mile which he smashed!! He must have been running for me as he stormed round the course in 7:15 knocking 44 seconds off his time from last year. When both Adam and I saw him he was struggling to pass other boys so with a bit more confidence to start further up the front he could have been quicker i'm sure! 

So anyway, moving onto the positive news, I had my last blood test this morning for Chemo on Monday and my PICC line will be removed, so no more having to consider what I wear on treatment and nurse days, no more dressing changes, and no more having to cover my arm when I get in the shower!  I also saw the oncologist today and my lump wasn't measured as it is now less than 1cm so has had a great response to treatment. 

I also now have my next big dates confirmed for the next stage of treatment which will be my ultrasound and mammogram on 5th May, and meeting with my surgeon on 6th May to confirm my date for surgery and what exactly that is likely to be! 

London marathon is this Sunday  and we're looking forward to cheering on friends on tower bridge. This is the weekend that became my revised target when I was told my marathon was off for this year.. It was my hope that if I could stay well and have a smooth ride through Chemo that I would tie in finishing Chemo with VLM,  so after much blood (pre chemo tests), sweat (terrible night sweats!) and tears we're here and want to just get over that line to finish stage 1 of treatment. 

Oh yeah.. And I must remember to keep applying the sun cream to my folically challenged head😚

Thursday, 7 April 2016

6 Months since diagnosis!

So the day all this started will of course be etched into mine and Adam's mind forever.. Less so for my new next door neighbour who was there at the time doing my biopsy it seems😳
15th December 15, we were off to Adam's work Christmas do, as he was new to the company I wanted to look the part so arranged to get hair cut, coloured and pinned up for the event.. When I got asked to go for my referral to the hospital on the same day some quick rearranging meant I was still able to glam up for the evening.. It just meant having my hair done at 9:30 in the morning. The hospital staff must have wondered what kind of Diva had just walked in when I didn't want to put my head flat on the bed during my tests for fear of ruining my hair for the do they probably assumed we would no longer go to! 

We did still go to the oxo tower for the do, the boys were all set and being taken care of, what was the point in staying in wasting having childcare and hair dos! We still had a good (if not slightly surreal) night! 

So since then I've completed my 6 sets of Chemo, lost my hair, eyebrows, nose hair, eyelashes.. (Who knew they were all as useful as they are!) for several months I dare not leave the house without a packet of tissues for eyes and nose just running constantly.. The amount of clothes that got rewashed due to rogue tissues was not even funny!  My hair is growing back now, and starting to thicken up almost in front of my eyes! (Thank goodness) and my eyelashes are also starting to come through. 

Surgery was 6 days ago now. I was the last one into theatre so it seemed a very long day waiting around, and getting back up to the ward so late did mean all my checks had to be done all through the night.. In the end I gave up on sleep and watched a film I had loaded onto my iPad! 

I was signed off to go home on Friday and spent another 5 hours waiting for the drugs to come up from the pharmacy before I could go. I made a hasty escape but my the time I got down to the pick up bit to meet the boys I was in a fair bit of pain, but assumed at was just where I was due another dose of tablets. 

By the time my amazing friend Jo came round to visit I was in serious pain and she grabbed the phone and started trying to get me some support, the outcome was going back to A&E where I was sent back up to the surgical wards for re-admission. After very painful examination (by dishy Doctor Matt😘) he prescribed some anti spasm drugs, but none of the wards seemed to have them available so I was just given more morphine which wasn't doing anything for the pain. Another night with not too much sleep followed. At 7am when they did the drugs round they spotted that my drain wasn't working and needed changing, they gave me my tablets and went off to find a new drain. Once they came back with the new bottle and fitted it with in 10 minutes the pain had completely disappeared.. It was such a relief.. By 9:15 I was declared fit to leave again and was out of there in record speed! 

So far the rest of the week of recovery has been uneventful thankfully! I've been doing what I'm told.. (mostly😘), I've spent lots of time waiting for the nurse to come and see me each day, but have also managed to do the school run each day too. I've been taking it easy and have be enjoying visits from lots of special people. Including my cuddles with 10 week old baby Noah💗
Seeing our biggest and littlest boys together was such a special moment.. And definitely made me realise how grown up Jake is getting! 
Our special (crazy) day of visitors from Scotland, Stafford and over the road was only possible because I knew everyone would pitch in and do their bit. So thanks to Pops for feeding us all and all so I wasn't stressing about anything! As Pops always says "If you love them, feed them!" And he sure did 💗

Also thanks to Urvi and Anna who have helped keeping us all fed this week! 
As always Jo has been my superstar, taking me back to the hospital and helping me wash the sticky bits and pen off the shoulder where I had no hope of reaching! 

Yesterday It was lovely to catch up with an old friend who we had lost touch with. It was great to reconnect, despite the naff circumstances, and certainly didn't feel like so much time had passed.

Today was a step forward with one of my drains being removed. The other drain isn't ready to be removed yet, but it's all steps in the right direction. I see the consultant again on Friday to check on my progress, but on the whole I feel ok, and I'm being careful not to over do it.. Even if that does result in major boredom🙃

Round 5 - Done!

So in just 10 days I should have been running my 1st marathon.. And yes I know my time will come but it still doesn't take away the bitter taste of disappointment of not being able to do something I was working so hard towards! 

The other bitter taste is possibly all the drugs making everything tastes nasty! I can't believe after a last minute call to arms to console a friend last night with drinks resulted in me drinking 1/3 of a fruit cider, half a mug of hot chocolate, and a cup of tea!! Go me! Such a party animal but nothing tasted right.. My gaviscon chaser before bed sorted me right out and at least I could sleep🙃

So anyway, where am I at now? Round 5 of chemo is currently swarming round my system doing it's thing... Feeling tired this week but as ever could be worse!  

Jo was of course at my side for round 5.. We're nearly done with Chemo selfies! 

The boys are on Easter holidays and have been little super stars, it will however be good to get them back to school next week into routine and normality. 

When I saw the oncologist last time there seems to be more shrinking of POLAB (name given to my lump by my 4 year old!). Which is great news. I'll next see her the Friday before my last Chemo to review. (22nd April) then new images will be taken after Chemo to decide on my surgery plan. Obviously I can't wait to get to that point.. It really will feel like a big step forward and another milestone achieved.

Round 4 Docetaxel was definitely harder than FEC, I was tired, a bit grumpy and I ached and at times just felt 'odd'.. But for the 1st time in this I did allow myself some time out and accepted a bit more help.. It was great getting away to spend time with family for Easter and being looked after.. Pops fed us well and we enjoyed some good old fashioned games.. Even if the 9 year old beat us😂 

The Easter holidays have also seen us enjoy Jake's birthday treat to Shrek's Adventure which he really enjoyed.. Although Luke was not quite so blown away 

So for now I'll have another cup of tea, and try not to do too much!