Month: October 2015

Well, there we have it; I did not spontaneously combust or turn into dust when I crossed the Norfolk border without Phil by my side!

I simply had a fabulous time with Bryony, Chris and Amelie. They are such an awesome family, their home is beautiful and I really enjoyed being close to civilisation in Leeds albeit for a short burst of time. I think I will always be a country mouse!!

Bryony cooked some delicious, nutritious, healthy food and we had a truly relaxing and re-energising time. It was great to spend some time with Amelie too, getting to know her again, she is growing up so fast!

Bryony and I talked quite a lot about hair! Mine is now growing at quite a pace on my head, it’s really thick on my crown, less so around my face. It’s a bit like when I had the final cut; there was very little on the top and sides but still quite a bit on my crown. It is also growing back pretty much everywhere else now.

My leg hair (which had stopped growing but didn’t all fall out) is now growing again, my armpit hair had all fallen out and is now growing back softer than before… I’m not going to go through all my body parts but suffice to say it is making a phased reappearance everywhere!

There is one place this I’m glad to be getting it back and that is up my nose. There have been several occasions upon which my nose has run without warning or sufficient time to grab a tissue… I am hoping that is now a thing of the past!!

Talk to you soon

Lots of love Mand xxx

Yesterday my fabulous friend Gabi came to visit with her daughter (my goddaughter) Molly.  It’s always great to see friends and some will be surprised by this (because in the past I haven’t been overly excited by spending time with children!) but children are particularly refreshing to spend time with ?.

Young children have no conscious understanding of what’s happening in my body which results in completely different interactions.  The conversations and interactions are just the same as they were before my diagnosis, I’m no different from anyone else to them.  That’s nice for a while ?

Gabi told Molly they were going on an adventure.  The last time Molly went on an ‘adventure’ was with  daddy (Carl), when Gabi came to my birthday party.  They went to Peppa Pig World… So Molly who is a very grown up 2 & 1/2 year old figured it out… ‘Yay! We’re going to Peppa Pig World!’  I am relieved to say that she didn’t seem to be too disappointed when she realised they were coming to stay with us!  We did have a lovely time, especially getting soaked  splashing through the puddles with Dude this morning.

So, tomorrow I’m setting off on my own adventure; no, I haven’t succumbed to Peppa Pig World, I am going to visit my little sister Bryony, Chris and Amelie in Leeds.  I’m going on my own, on the train.  As you know, I used to travel all over the place on my own without batting an eyelid but since my diagnosis I have become less confident – especially if I’m not with Phil so this is quite a big thing for me.  I am a little anxious but as soon as I’m on the train I’m sure I’ll be fine.  I know I’ll have a fabulous time with them once I get there.

I will of course let you know how I get on ?

Talk to you soon

Lots of love Mand xxx

Whoop Whoop!

This morning Phil took me to the hospital to have my port put in and I am delighted to report that all went according to plan this time 🙂

It was lovely when I went in the intervention radiology team remembered me.  They already knew that they were responsible for detecting that I didn’t have a clot and they were thrilled for me!

A shiny new student came into the operating room to observe but she didn’t last very long! That was a shame because whilst she was there the surgeon was giving a very detailed explanation of what he was doing.  I could see the ultrasound screen as well as the x-ray screens and the heart monitor it was all very interesting.

Half an hour later I have two incisions, stitches, purple glue, steri-strips, and a port, all safely sealed behind a transparent dressing. Very modern!

I’m a bit sore but fine and relieved that it’s done.

Have a great weekend, talk to you soon

Lots of love Mand xxx

I received an email from Nikki at Big C yesterday to let me know that £190 had been donated on-line and I have another £90 here to pay in so we have a grand total of £280 for a stroll in the park… well the showground!  Thank you all for your generous donations.  I continue to be humbled by your support.

Those of you who have seen me have probably seen my stripy fingernails!  I have a stripe for each chemotherapy session due to the cell damage.  As the latest stripes are reaching the tips they are cracking and bending so I need to be a bit careful but otherwise, I am feeling better by the day, I just need my energy levels to keep up!

My Mum and Richie are back from their trip across the pond to see Aunty Joan and Uncle Herman and Booie and Dave and have come to stay for a couple of days which is lovely, so much to catch up on 🙂

Thank you again for your generosity.

Talk to you soon

Lots of love Mand xxx

 

As you may remember, Friday was a bit disappointing as I didn’t get my port fitted as planned (and because we had got up early unnecessarily!!).

The thing is, to determine whether or not it was safe for me to reduce the dose of blood thinning medication for a couple of days so that I could have the port fitted, a different radiologist was asked to review the scan which originally identified the blood clot.  This radiologist wasn’t sure and asked the opinion of another consultant resulting ultimately in the decision that what they could see on the scan was actually just how my blood flows (which is a bit unusual but nothing to worry about) and not a clot at all!!

Whoop Whoop – no more injecting myself and ‘cage fighter’ bruises on my tummy 🙂

Also no problem for having the port fitted this Friday but most of all, it is a huge relief to no-longer have that hanging over me.  Having a clot is really scary no matter how nonchalant we have all tried to be, it’s just really scary and if feels like we’ve had a big weight lifted.

This afternoon the grey lifted to reveal blue sky and sunshine, we did the ‘long walk’ to make the most of it.  Autumn really is setting in now, the change is season coinciding with a change in me. I know I can’t just pick up my old life however much I may want to and I know that it is going to take time and patience to build the new normal but somehow I feel more prepared for it now.

Talk to you soon

Lots of love Mand xxx

 

Well it wasn’t quite as I had imagined it when we signed up in January for the BlackLight 5k but we did complete it.

As I said before, Phil and I both gave up smoking in 2014 and we had put on the standard issue 1/2 a stone (give or take a little 😉 ) in weight so we decided that we wanted to get fit and lose that weight (and maybe a bit more!).

We didn’t want to set ourselves an unachievable challenge so when we saw this run in October we thought that would give us plenty of time to learn how to run and get ourselves ready to actually run it.  I have participated in a couple of 5ks before but always as a walker rather than a runner.  Some people may be surprised to hear that Phil used to run cross country for the county when he was at school but he hasn’t done any running he’s prepared to talk about since then!

We had begun the traditional ‘run a minute, walk a minute’ method of training and had a schedule planned out by one of my colleagues in Aberdeen.  And then I had my diagnosis.  I did carry on going to Zumba until my chemotherapy started but hadn’t done any running training since then.

I did want to do the course though, not least because we’d paid the entrance fee!  Then my friend Donna signed up and I knew we had to do it.  As you will know, I have been struggling with my energy levels and stamina so Phil took Dude out for his walks yesterday while I conserved my energy.  I know, it’s only 5k but that’s where I am at the moment!  I’m dealing with it and you have to too 🙂  Yesterday was a grey, dull day and as we got closer to our departure time of 17:00 it started to drizzle with rain.  I wrapped myself up in a long sleeved thermal vest, fleece, lightweight waterproof and my official run t-shirt, oh, and of course a purple tutu and we set off!!

There has been a bit of chatter on FB about the organisation and planning of the event, also the fact that the course wasn’t quite 5k…. however, we had to walk a kilometre before we got to the start line and then back to the car at the end so I’m comfortable that we did the distance!!  There was a big slow backlog but once we got across the start line, we reached the finish line in just under an hour which I was really pleased about.  We had also managed to get ourselves covered in magic glow powder so that we looked suitably horrendous in the photos but I promised you photos so…

We did have a lovely time, it was a really fun atmosphere and it did us good although I’m not sure that the celebratory KFC contributed to our wellbeing, we really enjoyed it.

A huge thank you to those of you who donated money to the Big C, I’ll let you know how much we raised during the week.

Talk to you soon

Lots of love Mand xxx

 

 

This week has been better.

I have managed to complete a few tasks including the veg garden plan for next year and resulting seed order.  I am still frustrated by my lack of energy but I am dealing with it better not least because of all the encouragement and support I’ve been getting from you guys.

Today hasn’t been the best day of the week though.

I was scheduled to have my port fitted this morning.  The 06:30 alarm was a very rude awakening but we were at the interventional radiology unit at 08:20 ready for my 08:30 appointment.  We went through the questions about allergies and then moved on to the current medication…

Nurse:  Any drugs to thin the blood?
Me:       Yes
Nurse:  Yes?
Me:        Yes, Fragmin, I have a blood clot
Nurse:  Oh!  Is it a therapeutic or prophylactic dose?
Me:       ???!

It turns out, I am still on a therapeutic dose, treating the issue rather than a prophylactic dose to just prevent a potential recurrence.  This of course presents a high risk of bleeding and the question is ‘should the risk be taken today?’.

Apparently, the answer is no!  So I have a plan to take a prophylactic dose on Thursday and Friday next week so I can have it put in on the Friday.

It’s all good though, I’ll still have it in before my next bone strengthening treatment and it means that there is definitely no reason for me to not do the BlackLight 5k tomorrow evening ? There will be photos!

I am a little concerned that yesterday when I went for my blood test the phlebotomist said that she wasn’t familiar with ports, she said she’d check it out with the nurses!  One of the benefits of having it should be for the ease of blood tests as well as the delivery of iv drugs.  I’m sure it will be worth having.  My arms still aren’t getting any better.

I’ll be back tomorrow with pictures from the 5k 🙂

Talk to you soon

Lots of love Mand xxx

 

I spent most of the weekend thinking about what needs to be done and what we want to do, how the latest developments in this situation impact the new normal or at least what I thought it would be and generally going around in circles in my mind.  Needless to say, it wasn’t very productive or good for my state of mind.

Becoming more and more overwhelmed I remembered the basics; If something seems too big to deal with, break it down into small, manageable chunks.

Some of the issues are ridiculous and I can get to work on them quickly like being able to get back into a routine.  In the beginning we kept a routine as much as we could, getting up to an alarm, morning walks with Dude etc. and we have slipped out of it, particularly since the last chemo when I had no energy at all.  So this week we are back to setting the alarm and getting back into a routine.  It still takes me much longer than before to get myself together in the morning (I’ve never been quick!!) but even without hair to wash, dry or style it takes me longer… even if I don’t put my eyebrows on 😉

The thing is, just typing this feels really pathetic!  Seriously… I’m getting stressed out about being able to get back into a routine – what is that all about?!

Pat, my Red Arc Nurse continues to be a brilliant support and have the intuition to know exactly when to call me.  We talked on Friday about how I was feeling and she had sent me an article by Dr Peter Harvey who is a Consultant Clinical Psychologist entitled ‘After The Treatment Finishes – Then What?  It is an excerpt from the full presentation but the basic concept is there.  He talks of three key steps in the recovery part of a framework to heal your body and mind; recuperation, convalescence and rehabilitation.  I think that I may be trying to nail rehabilitation before I have conquered recuperation, I have to remind myself that this time last week I was talking about feeling a bit sore before getting up to only be able to walk like an old lady and spending tomorrow morning in hospital!

So my mission this week is to be a bit less hard on myself whilst building back in some structure… wish me luck!

Talk to you soon

Lots of love Mand xxx

 

 

It really is amazing how quickly our bodies can fix themselves if we are given the right treatment at the right time.  Today I am feeling so much better, we ventured into the city to celebrate.

I had planned to travel up to see my sister Bryony in Leeds today (and Chris and Amelie of course!).  As I mentioned before, Amelie had her first birthday a couple of weeks ago and she is having her birthday party with her friend this Saturday.  Anyway the events of the past week have knocked my confidence again and Dad and Chris are already there and have come down with colds, Dad’s is more like flu so I decided that I had to postpone the trip.  I can however now show you what I made for Amelie!

Following a couple of grey and miserable days both metaphorically and physically, today the sky was a clear bright blue and the sun was shining.  After we had walked Dude, we decided that we needed to get out and I had my birthday money burning a hole in my purse so we went into the city.  We went to M&S as I had a voucher where I bought new underwear (what else?!!) which included some racy pink and purple animal print thermal leggings as I have been feeling the cold lately, then popped into Clarkes for new winter boots; it is a bit of a tradition that I have to buy either boots or a coat!  Just time to then pop into Pizza Express for a ‘superfood’ salad (for me, Phil had pizza 🙂 ) three hours well spent!

And my new thermal leggings match my chaise longue!!  This photo is for you Penny Black!

In other news, this evening my fingerprint worked to unlock my laptop for the first time in months… despite the recent setbacks, I’m definitely getting there 😉

Talk to you soon

Lots of love Mand xxx

 

Once again I am delighted to report that I am now feeling much better.  The antibiotics and steroids have done their stuff.  I have some residual pain in my shoulders neck and breast bone (and of course the pesky aching arms… seriously, when will that go away?!!) and I had a lovely sleep last night.

I am expecting to have another now!

Talk to you soon

Lots of love Mand xxx

PS I had lots of comments about my beautiful henna hand from the nurses so I thought I’d show it off again!!