A wee update

Good afternoon all! I thought I should post a little catch up blog to let you all know how I got on in London! I went with my friend Amy who had to put up with a very nervous Mairead all day on Wednesday.. I couldn't even eat! On Thursday morning I was still feeling a bit sick but not as stressed.

The event wasn't until 1pm but we arrived early so I could have a run through of my speech. After that I felt grand! Everyone was so supportive and kind so it really put my at ease. Amy managed to sneak a little snap of my run through..

I actually really enjoyed the speech and felt so honoured to be invited. Lots of people came to speak to me after and were really complimentary - so that was nice! There's more information about the event here... http://www.teenagecancertrust.org/what-we-do/health-professionals/blueprint-of-care/

Afterwards, Lord McConnell took us on a tour of the House Of Lords - it was great! He has been so supportive of the Teenage Cancer Trust and was a very good tour guide. Here's a picture of me next to Queen Victoria's Throne.. Oooh!

Amy and I managed to fit in a trip to see Matilda, dinner and drinks with friends and visits to the National History Museum and the V&A! Currently, the V&A have an exhibition of ballgowns on (swooon), so that was our first stop. Unfortunately we weren't allowed to take any pictures but I can confirm that the dresses were AMAZING. One plus of having a disabled badge is that I get a reduced rate for expensive exhibitions.. I have definitely taken advantage of that! I was so knackered after the trip so went to bed as soon as I got in on Friday!

The past few weeks have been rather busy with birthdays, meetings, hen do's and the like. All good fun really! I had a bone scan on Friday at 9am (GAAAH) which was OK too. I was expecting it to be like an MRI but it was fine. It was also a good excuse to get a nice West End breakfast after.

On Saturday, Rona, Teenie, ML and I ventured to Aberfeldy for Cat's hen do - it was SO much fun. ML organised the whole day and did an amazing job. I am now so unbelievably excited for Cat's wedding on Saturday. It is going to be a wonderful day. (I stole one of your pictures Judy - hope you don't mind!)

Here are a few other pictures of recent times. First up, myself and ML looking very cheery.

My wonderful Music Girls who always put a (rather large) smile on my face.

We had a lovely cousin fuelled few days for Grace's birthday a few weeks ago. It was so nice to spend some time with them all. Also, as Eurovision was on, it gave Teenie and I an excuse to dress up as Jedward!

We had an 'ironic' Jubilee Party a few weeks ago - it was ace! We ate a lot of cake..

This first picture is a few weeks old but I love it. The kids discovered Instagram on my phone and seemed to enjoy it. It's James' birthday today so they came round to drop off a card for James and help eat the amazing cake Mum and Teenie created! 

I can't quite believe James is 20 - crazy. His back is still pretty bad but will hopefully improve soon as he is getting rather intense physio every week. So, it's a rather miserable birthday for him so his 21st next year will have to be immense!

Healthwise, I'm going grand. Blood levels are still a bit low but not worrying. My energy levels are still a bit rubbish but I know it's something I need to build on. After the crazy weekend, I have felt absolutely shattered! I'm still aware that I need to conserve my energy and that it will take a long time to recover. As I've said before, it's a gradual process but I can definitely see improvement - even if it is taking a while!

I'm really looking forward to the Summer - weddings, hen do's, a trip to Keswick, the induction at Coatbridge (YAY) and some voluntary work for Macmillan. I'm excited to actually 'have' a Summer so I want to try and pack a lot of things in. I hope everyone is having a cheery Wednesday!

Young Voices

Hello all. I hope everyone is having a lovely day! At the moment I am feeling rather sick and nervous.. I'm going to London this afternoon as tomorrow I'm speaking at a Teenage Cancer Trust event in Westminster (EEEEEK). I'm really excited but also TERRIFIED. I've to speak for about five minutes all about the Young Voices campaign that I contributed to last year. I thought I would share with you all what I'm going to say. So, here goes...


Hello. My name is Mairead Macleod. I am 26 years old and come from Uddingston, just outside of Glasgow. I wanted to contribute towards the Young Voices report as I thought it was very important for the Government to know the difficulties that young people with cancer face.

I was diagnosed with a non gestational choriocarcinoma in May 2010. In hindsight, it is clear that I had typical symptoms of a young person with cancer - tiredness, weight loss, nausea, loss of appetite etc. I had been to my GP on several occasions and just been fobbed off. My Mum, who is also a GP, then stepped in and forced my local hospital to scan me. After a number of scans, a tumour was found in my bowel with mets on my liver. I had my first operation in Wishaw and was then sent to London for further treatment. I had four months of constant chemotherapy, another operation, two rounds of high dose chemo and one final operation in January 2012. 

Firstly, I would like to focus upon the delays in my diagnosis. It took two months of too-ing and fro-ing to my GP surgery to finally be sent to the hospital. When I was diagnosed, I was told that my tumour was very fast growing so we are lucky we didn’t leave it any longer. On all the occasions I went to my GP, I was made to feel like a nuisance and was sent away with medication. From reading of other peoples experiences in the Young Voices campaign, it is clear that this is very frequent and unfortunately for some people, diagnosis is too late. I completely appreciate that for a GP a young person with cancer is very rare, but I don’t think this is an excuse for not responding quickly enough to the obvious signs. 

In total, I have been in five different hospitals and each have been very different. I was initially sent to London for treatment and was very lucky when the concept of shared care between London and The Beatson, which is in Glasgow, was introduced. I was not on a Teenage Cancer Trust ward whilst I was in London, and I noticed a huge difference - mainly in staffing levels. One night, the lady opposite me was struggling to breathe and I had to run around the ward attached to my chemo, looking for a nurse to help her. I was in unfamiliar surroundings and had no knowledge of cancer or chemo. There were only two nurses on for the whole ward that night - it made me feel even more frightened. 


It was a huge contrast when I was in the Beatson, on a TCT ward. On my first night, once my Mum left, a nurse made time to bring me a cup of tea and have a chat with me. I felt so welcomed and it really put me at ease. It was the little things like this that I really appreciated. 

In my room I had a TV, DVD player, computer with internet access, lots of storage space and my own bathroom. I was also next door to the ‘Chill Out Zone’ which had access to a pool table, sky TV, even more computers, and most importantly - a kitchen with a toaster, kettle and microwave! I know a lot of focus is made on the ‘things’ TCT give to patients, all of which are very important. However, for me, it was the support of my specialist nurse Julie that was incredible. She introduced herself to me on the first day I came in and visited constantly. She dealt with all the organisational aspects that come along with treatment that I would never have considered. She also provided support for myself and my family. It was great to speak to somebody who understood everything I was feeling and could answer all my stupid questions. It is clear from reading the Young Voices campaign, that being on a TCT ward dramatically improves young people’s experience in hospital. It is pretty miserable being away from friends and family yet the TCT tries to keep surroundings as normal as possible in an abnormal situation.

After my treatment in the Beatson, I was sent to London for my big operation. Once again, I was not on a TCT ward and it was very strange not being in one! Visiting hours were very strict and infrequent and it was horrible being in so much pain and not being around my family. For my high dose chemo, I was at another hospital. As I was in over Christmas, staffing levels were very low and my Mum and sister did most things for me - they dressed my hickman line, changed my sheets, help me wash etc. I completely appreciate that nurses are very busy, particularly in a ward where there were a lot of very sick people. However, from being on a TCT ward and then a general ward, the difference in the amount of nurses is very clear. 

One thing has remained the same throughout my hospital visits - The food. I know it’s a terrible cliche to say that hospital food isn’t great - but it’s the truth! It probably sounds very odd to say, but whenever I left hospital, I was craving a salad! When I was getting my high dose treatment, I saw a nutritionist most days. At that point I had terrible mouth ulcers and nausea so was struggling to eat anything. It was incredibly difficult to try and eat well with a limited menu filled with stodgy food when I wasn’t wanting to eat a thing! 

Through the TCT, I have also made some great friends. When I was first diagnosed, I presumed I was the only person in the world to be going through this - even though I was constantly surrounded by friends and family, my situation felt very isolating and I wanted to meet someone going through a similar experience. Occasionally, I found it difficult to say exactly how I was feeling around my closest friends and family - I felt if I vocalised these feelings, it would only make things more difficult for them. However, with the friends I have made through the TCT, I’ve found that I can be as open and honest as I want as they’ve been in that situation too. 

Furthermore, I have had wonderful experiences through the TCT. I have been off work for over two years now, so evidently have a lot of free time! However, I have been offered tickets to Music Festivals, events, Scottish Parliament and now here! I have also held my own fundraising events which have raised money for the charity.

It is over 2 years since I was diagnosed and I had my last operation in January. I feel very privileged to be involved in the Young Voices campaign and I hope it gives those who read it an insight into the trials that young people with cancer face. I’d never really thought about cancer prior to my diagnosis - I guess I just thought you’d lose your hair! Unfortunately now, I know there is a lot more to it.


If anyone would like to know more about the Young Voices campaign, just have a look here... http://www.teenagecancertrust.org/workspace/documents/Young-Voices-report.pdf

Well, I best be off and finish packing. I'm so scared that I'm going to forget something! I shall report back with how everything goes. Laters!

Two Years

So, obviously the title implies that this post relates to something to do with 'two years'. Well, congratulations if you worked out that code - that is most definitely correct! Today is basically two years since I was diagnosed. May 21st 2010. I do enjoy birthdays, anniversaries and Christmasses etc but I really don't want to make this into a 'thing' to 'celebrate'. However, it's difficult to get the 'date' out of your mind when it is so firmly there. It is so strange to think that this time two years ago I (well my family and close friends!) had started telling everyone I know what was going on. It's only recently friends have told me how they reacted at the time and it is so odd hearing about it from another person. As this date will forever more have a bit of a CRAP quality about it, maybe I should make up a holiday? Like, National Clean Your Car Day or National Make Pasta From Scratch Day - as in dull things, people say they will do and never will? Hmmm.. That probably won't take off so let's scrap that idea.

So, I'll just be self indulgent for a few more minutes and say I want to thank each and every person who has helped me, talked to me, been there for me, acted normal around me, invited me to do something FUN, made me a cake, talked about trashy magazines, brought percy pigs, provided me with a new Andrew Lloyd Webber piano book, got their class to make me an Annual, made a mash up of John Torode's face, those who introduced me to Community/Mad Men/ Greys Anatomy and any other show that helped me through the DULL DULL DULLNESS of hospital stays. I obviously have so many more people to thank but anyone who prayed, sent a card, message or even a lasagne - I just want to say Thank You.

I feel now I should have some knowledge in how to speak to someone going through a similar thing to me - obviously practical things like, don't wear long sleeves in hospital (it's a nightmare with getting blood/venflons), take lots of moisturiser/lip balm/hand cream (the air con makes you feel very dry), take quite a few pairs of pjs (one night stay will almost definitely be more) and make sure you have enough entertainment so you can drown out the noise of the constant beeps or chitter chatter. Larger headphones help with this venture.

I think if anything, I've learnt that cancer patients want their normality. For example, it's horrible when your morning routine is taken away from you and you are woken at 7am with a slice of cold toast and some really disgusting coffee. I also wanted people to be normal with me. I can understand why it is an uncomfortable situation but the patient has never changed - I had never changed. I'd like to think I kept my sense of humour throughout (debatable I'm sure), my need to change my nail polish every second day (difficult, as I was normally told off for this) and my love for smelly cheese had definitely not diminished - well it did when I was told not to eat them. Humph. Back on the Cheese Train now though! Hurrah.

Two years down the line.. Hmmm I'm not sure if I've changed. At the moment my Dad would disagree and probably say, I'm a 'lady of leisure' - which I guess is partly true! I'm giving myself to the summer to have a proper BRAINSTORM about this silly old life of mine. I'm sure something will strike me soon.

Obvs, I don't want to be banging on about cancer all my life - it already feels like a long time ago. However, if anyone wants to talk to me about it, that's cool! I hope folk don't feel uncomfortable if I'm too open with it - sometimes I should learn to shut up.

Right, I think I should round up this (rather long!) blog. I had no idea where I was going there so may continue another soon. Night y'all.

London Lolz

This post has been a long time coming - I really have absolutely no excuse at all. Basically, I'm just incredibly lazy. I kinda miss my little corner of the internet so thought I would post a wee update for y'all.

Since my last post, I've managed to fit in two trips to London - one to visit the prof and one to go to a Teenage Cancer Trust event at the Royal Albert Hall. Everything was grand with the prof - all scans were clear and no scares like the last time. Mum and I had some prosecco and macarons to celebrate and met up with some London friends for dinner. Any excuse huh?!

Well, now I'm basically going to BANG ON about how awesome the Royal Albert Hall was! I am a HUGE fan of the theatre but had never been to the RAH so I was so excited to be invited by the Teenage Cancer Trust. It was an all expenses paid trip (holla) so that was pretty ace! We were at the RAH all day with other folk from the charity - we got involved in a Music Workshop, had a tour of the hall, a champagne reception, a lovely dinner, amazing goodie bags, wonderful seats and then got to meet all the comedians! Here are some snaps for y'all.

We had some time on Tuesday for tourirsty stuff so went to the big Topshop, an Italian for lunch then hit up Liberty's - standard. It was a wonderful trip and it was great to go to London and not have to go to hospital!

The past couple of weeks have been filled with birthdays and fun happenings - April always seems to be very busy! As of this, I seem to have contracted some sort of awful cough. It's starting to disappear a bit thanks to some antibiotics. In the words of David Cameron, my body was telling me to, 'calm down dear'.

Here are some pictures to prove why I am so run down.. THANKS FRIENDS FOR BEING SO FUN.

I have also been involved in a few other Teenage Cancer Trust events recently. A few weeks ago, I attended the Managed Service Network Launch. At the event, Nicola Sturgeon announced that the Scottish Government will back age appropriate care for young people going through cancer. Great news! A lot of work had gone into this and we were all very happy with the result. I have also been invited to a parliamentary event in Westminster in June which I am rather excited about. I think I've got to say a few words so I am already pretty nervous. More about that when it happens though!

Aside from all the above, I am now at the stage where I really need to think about what to do... With my life... I have officially left my old job (I'll miss you guys!) and I could not have asked for a more supportive and caring group of colleagues. However, it has now left me in a quandary! By now I feel I should have come to some sort of conclusion/had an epiphany yet nothing has fallen from the sky.. Hmm.. I have a few more things lined up with TCT/Macmillan over the next few months so I think I'll see where they lead to. It's all rather terrifying but I'm trying to look at what I can benefit from this down time - I'm sure there will be something out there for me. However, any suggestions - fire them my way!

It's coming up to two years since my diagnosis - I don't particularly want to dwell on it and I really don't want it to define me. I'm totally cool if it comes up in conversation, or something wants to ask me about it but I am so happy that it's not the only thing I have to talk about anymore.

I promise I won't leave it so long til my next update!

PS - thoughts on my hair? I'm still not convinced I like it. (That may be fishing for compliments - unashamedly).

Hair Twin

Oh hello there bloggy type pals. I hope you are all well. It has come to my attention that I now have a hair twin. Well, I have had hair twins for a while I guess. When I was bald, I was told I looked like Harry Hill, the guy from Eastenders, Voldemort (thanks Teenie) and many other men. How kind to be compared to such attractive guys.. At one point, with my skin head, I looked like various different neds. I have also closely resembled Mr Zelner from Friends. However, there have been none so similar as... Wait for it... Dan Humphrey from Gossip Girl! 'Who is that?', I hear you cry! Well, you are about to see the shocking similarity..

Yes, uncanny isn't it? Yeah? YEAH?! I know you're saying, 'No, not at all'. Well, I am sorry about this. I am very lazy with google images and totally rubbish with computery things so this is probably the fourth picture from google and a shoddy paint job. So basically, go and google him OK? This is now my reason for watching Gossip Girl - to compare my hair with one of the hunks from the show. If anyone can think of any WOMEN who have the same hair as me, please let me know. I feel like I'm overdosing on mascara, perfume and frilly tops so people are sure that I am female.

In other news, I am now 26. Hurrah. NOT. Honestly, I don't really care THAT much. The only downside for me is that I can't apply for another Young Persons Railcard. Well, that and the fact that I am now the dreaded 'mid twenties verging on late twenties' stage. That's not good. I had a very nice birthday actually. I asked some of my girly pals to come round dressed in their best black dress and crazy wigs for some karaoke and champagne - everyone looked marvellous! Here is the proof..

I, of course, went for a blue wig. Why break the norm eh?!

Tomorrow I am travelling back down to London for a check up on Friday. I'm hoping after this one they will become less frequent. I'm not expecting him to say too much but it's always good to check in I guess. However, I seem to have caught a cold from one of the million germs that are kicking about. I feel OK but sound like a very hoarse man (matching the hair eh?).

I am definitely starting to feel a bit stronger - no cartwheels just yet though! I'll leave them a few weeks.

Thank you Dr Li

This will only be a brief post (I promise) as I just wanted to share with you all something I have found out this week. My Dad is currently reading a book about the history of cancer (sounds fun eh?!) (The Emperor of all Maladies by Siddhartha Mukherjee) and he thought I would find one chapter very interesting.. I did!

We have found out about a doctor in the late 50s, early 60s (can't quite remember) who discovered the first ever chemo cure for adult cancer while treating a patient with a choriocarcinoma. The patient had a high hcg level and the doctor (Dr Li) realised very quickly that if he administered methotrexate (a chemotherapy drug) the tumours declined. However, he kept on giving the drug so the hcg hormone level would gradually decrease. The hcg was what they call a tumour marker. He continued the treatment until the hcg level hit normal and the patient was cured. Yet he was accused of experimenting on patients and sacked! Today though this has been hailed as the first ever cure of adult cancer through chemotherapy.

I have mentioned before how odd/weird/random/out there my tumour was, yet it seemed to behave like a germ cell tumour (ie a choriocarcinoma). Chorio's are normally in the womb and associated with a pregnancy - my tumour was incredibly awkward and had nothing to do with this and showed up in my bowel, yet still producing a high hcg. I still find the whole thing rather confusing.

Anywho, all I wanted to say was that I found this rather interesting and I guess I have a lot to thank Dr Li for. What a smart guy! (Also, how on EARTH do you figure something like that out?! BLOWS MY MIND).

Other than the above, I do not have much else to report. The staples are out of my tummy and I have another scar to add to my collection. I also turn 26 tomorrow and am already sick of 'old lady' jokes. How on earth am I this old?!

One week ago today..

... I was nervously awaiting my trip to theatre. Generally, I felt OK (think I got my freak out, out of my system a few days previous) but I was still terrified. It had been a bit of a manic few days prior to this so I shall fill you in.

On Saturday, we decided to go to the cinema (to see The Artist, which I did enjoy but think it's been 'over-hyped') and once we left I had a rather sore stomach. I decided to tackle this with peppermint tea and paracetamol but it would not budge. After a few hours of debating whether to go to hospital, we packed up some stuff and went to Wishaw. I was expecting the A & E department to be full of Saturday night drunkards but it was empty. However, it still took forever to be seen and a very cautious junior doctor only giving me 2.5mg of morphine.. After explaining countless times that this would do nothing and I know my own levels of pain blah blah blah, I got sent to the ward. This was a good move as I got all the morphine I wanted there! Hurrah! This meant no sleep at all due to all the itching from the morphine.. I chose no sleep over pain. By Monday morning, I was still pretty sore and hadn't eaten anything (which is unusual as this pain normally goes within 6 hours) so they decided to CT scan me. I popped down for one and when the results came back it appeared that I would need a larger operation. On Monday morning I was asked to decide if I wanted to go ahead with the op as planned OR to have a larger one which would involve opening me up again (nooooooo) and snipping away at any adhesions they found. I made the decision rather quickly to go ahead with this larger operation as I was told it was inevitable and it would need to happen anyway. So, Monday passed with me even MORE nervous about the next day. With the original op I was only going to be under anaesthetic for an hour but with this new proposal it was expected to be quite a few hours. In the evening, my surgeon visited me and said that she had reviewed my scan with a radiologist who told her I didn't need this larger op.. Talk about messing with your head! So, she left me saying she wanted to go ahead with the straight forward op and see what happens.

As you probably all know, I am not good AT ALL with things being changed last minute and always need time to get my head around a situation. On Monday I realised pretty quickly that I had to try to 'go with the flow' which I found very difficult indeed.

Now.. I have a rather embarrassing admission.. I own a pair of 'lucky pants'. I know, I know, this is RIDICULOUS and I have no idea why but I do OK! I am in no way superstitious, I don't believe in luck or jinxes, I think starsigns are rubbish etc but I still have lucky pants.. Don't worry, I don't wear them for all of my hospital admissions (one pair of pants for a month stay? No no), just the big things like scans or big check ups. I stupidly told the lovely nurse who was taking me up for my Op and she proceeded to tell EVERYBODY. She made sure the anaesthetist put them in a labelled bag for me and when I came back to the ward she wanted me to show the other nurses... I realise I am now telling all of you but that's only because she let my secret out of the bag. I now wish they were nice ones. Unfortunately they're very faded flowery ones. CRINGE.

When I came out of the op (after realising my pants were safe), I was told everything went well and my surgeon found an adhesion right at the opening so managed to snip it away without opening me up any further. Here's hoping that's the end of all my stomach pain! I had a morphine pump so was itching away like crazy and talking total jibberish. Mum took a picture to send to James as he wasn't able to come. Not my most flattering angle but oh well. I was attached to a million things - not fun when you need the bathroom.

I was transferred to a different ward (one down from high dependency) where the nurses were amazing. They were so lovely, kind, caring and made me feel like I was never asking a stupid question (even though I totally was). The day after, so many nurses, doctors, hospital folk passed and popped in to say 'hello'. It made me realise how many people I now know in the hospital.. It's A LOT! The nurse who was looking after me was great and made a comment that they don't generally see people who have done so well and come out of the other end of treatment - she then said that I touched a lot of peoples hearts.. AWWWWWWW. Totally gushy but I thought it was incredibly sweet of her.

After this wonderful ward I was transferred to a ward that I HATED. The second we walked in I felt really uncomfortable. It was a huge room with high ceilings and six beds. I remember going to sleep and feeling really unsettled as it reminded me of somewhere but couldn't think where. Mum made the comparison with Charing Cross Hospital and the ward I was originally in there. Bingo - that was it. It wasn't exactly the same but felt so familiar. I think, subconsciously, it brought back how much I hated it there, how scared I was and how terrifying the whole situation was. I was completely miserable, sore (morphine had been stopped.. waaaa), tired (hadn't slept for days) and surrounded by women discussing how many great grandchildren they had. Normally I love this kind of chat but I was just angry at everything. Mum phoned my surgeon to say I was a bit down and she said, 'if you think Mairead looks OK, take her home!'. Mum didn't hesitate so called me and told me to pack - hurrah! This really perked me up so then I started blethering to all the old ladies (who were all lovely) and getting everything gathered up. One of the awful things about Wishaw is the strict visiting hours - I am NOT used to this and hate spending so much time by myself. So, I had to wait until 3pm to be picked up and then off home we went! I was only out of surgery for two days and in quite a bit of pain but would much rather have my recovery on the couch watching Masterchef.

So, to end this very long post, I am now home and very happy. I tried to refrain from getting sentimental and mushy when I left/got home but I know everyone's hoping that was my last hospital admission and I will only ever need to go for check ups again. It feels completely mental. It's been 20 months since I was diagnosed and probably about 2 years ago since I was symptomatic. I'm not entirely sure what's next but I really hope it doesn't involve hospitals.