Thursday, 21 April 2011

This weather is not good for baldies

There are many reasons why I am not loving the weather at the moment (yes, I am aware I am probably the only one). Firstly, I don't like the heat. Mainly because I burn SO easily and it makes everyone smelly. Secondly, it is so much hassle having to figure out what to cover my head with! It was so easy in the winter when I could just chuck on a woolly hat but it is definitely far too hot for those bad boys now. Headscarves are alright I guess but are a total faff to put on and I'm always paranoid the wind it going to blow them away. Also, the wig makes your head roasting so is not the best option either. Basically, it's rubbish being a bald girl in this weather. I cannot WAIT for my hair to come back. It is taking it's sweet time!

Last week was rather busy so here are some snaps. Mum and I went to pick up James in Edinburgh and managed to pop into Armstrongs for a look about. I managed to buy a pretty fierce hat (none of the ones pictured unfortunately..).

On Friday I had the Beatson all day and on Saturday it was my friend Eilidh's wedding in St Andrews. It was simply wonderful! Rona was out on Saturday so I had to put my eyelashes on myself (she is normally my eyelash helper).. It took a while but I got there in the end. Eilidh looked beautiful and I'm so glad I could go.

Mum and I flew to London on Sunday and on Monday afternoon (after the hospital) we went straight for Liberty's (my favourite shop in the world). For some reason I bought an elephant shaped teapot... I'm not sure if I'll ever use it but it's cute yeah?!

We went for a wander down Carnaby Street (fish & chips with a glass of prosecco for lunch!) and then went back to Daphne's as I was wiped. This weekend is busy too - it's Jamie's birthday tomorrow and I have Jemma's hen weekend! I'm so excited! It should be great. To finish, here is a snap of Teen and I posing today (after Mum's car broke down just before a roundabout... Awkward).

As you can see, hair still not here. Hopefully it will be back soon...

Tuesday, 19 April 2011

I hate chipped nail polish

I am rather obsessive over my nails and cannot stand it when my nail polish chips. I have also never been one to 'pick' at my nail polish. Since the high dose my nails have been in a terrible state - very brittle and sore - my solution is to COVER them in nail polish! While I was waiting to be scanned on Monday morning I was pick, pick, picking at my nail polish.. I didn't realise I was doing this until about ten minutes in and five of my nails were completely demolished. As I am not a nail polish 'picker' this shows how nervous I was yesterday! I had my MRI at 8.15 and my CT about 9ish. After this we headed up to get my blood checked then went for a coffee (and a slice of carrot cake for me - nice healthy breakfast). At about 10.45 we returned and went in to see the Prof. We chatted about how I have been feeling since the high dose and how long recovery will take. He then popped my scans up on the screen so we could have a look at them. He pointed out every part of my body and was very clear and concise when talking to me. He paused over the pictures of my liver as there looked like a slight mark there, however, he said this is a haemangioma (explained to me as a birth mark). He said there was no sign of tumour growth in my body and the scans look to be clear. This is obviously very good news yet he was very sure to say this is not the all clear. He stressed that I will have to be closely monitored for two years (blood tests every two weeks and regular scans) to be sure the cancer has gone. I asked him what the likelihood was of it returning and he said with normal germ cell patients its quite a small percentage (less than 10%), however with me it is a different story.. He said as my tumour was so unique I can't compare myself with others and he really doesn't know if it could return. He continued by discussing my recovery and that I can't expect too much, too soon. He was very positive regarding recovery and feels that I am progressing well.

Overall, it was a good meeting and he was very happy with how I'm doing. I left feeling happy (obviously) but also there was a sense of anti climax. I am well aware this news is good but I know I still have a lot more to go through regarding my operation (hopefully mid June) and I don't think I will feel this is over until then. There is also the constant worry that this isn't the end and that the cancer could return. I've been told there is no point worrying about this but the life of a cancer patient is constant worry! Even though there is technically no sign of the cancer in my body at the moment, I don't feel secure in this at all. I don't think I really ever will. Even though I was nervous about the meeting (OK, terrified), I think I knew he was going to say this - my HCG has been below 5 since November and all recent scans have been good. We've been lucky having the HCG as a tumour marker but I know I can't become too hung up about it.

I don't mean the above to sound like I'm feeling bleak about this news, I'm not. I am pleased I don't need more chemo, I think I'm just so aware that I still have so far to go. The after effects of the chemo are not nice and still here. As mentioned above, my nails are horrid! Hopefully they'll get better soon. My hearing is dreadful and I am planning on going to see someone about this soon. I also have constant tinnitis which is incredibly frustrating and the numbness in my hands and feet is still here. These are just a few and of all these things, for me, the worst side effect has been my energy levels. I know I have mentioned this constantly but I really can't stress enough how rubbish this is. I find it hard to explain how tired I am and have absolutely no sympathy for anyone who says they're 'tired' as I'm convinced I have it so much worse (petty and daft, I know)! So, if you do feel tired, don't mention it to me as I will hit you.

I was rather busy last week (for me busy is going out for lunch, then the rest of the day is a write off) and have been feeling knackered every day! I was in the Beatson all day on Friday for Magnesium and forgot how rubbish it was to have to get a venflon in your hand - not that I miss my Hickman Line though. The day passed by rather quickly with visits from Julie and May and reading a lot of magazines. On Saturday it was my friend Eilidh's wedding in St Andrews which was lovely. Mum and I flew to London on Sunday evening and arrived back this afternoon.

In brief, the above is positive but I'm keeping in mind that I'm not out of the water yet! Thanks for your messages, you have all been so kind.

Tuesday, 12 April 2011

Hickman dramz

As I have mentioned previously, once I am psyched up for something or get my head around the idea I cope with things fine. I do not cope well when things are changed at the last minute. However, over the past year I have had to do this many a time and it still doesn't get any easier. Well, yesterday things were changed at the last minute.

Mum and I turned up at the Beatson at 12 to get my blood checked and we were told at 1 it was all fine (magnesium still a bit low though). So we went up to the Hickman Line bit at Gartnavel and spoke to the nurses about the procedure. Even though I have had quite a few Hickman Line procedures, I still get incredibly nervous. The team of nurses are really nice and tried to put me at ease. I showed them my line and they said it was higher up the chest than normal and they would need to make another incision (ie another scar on my chest, 6 and counting) to remove it. So, I changed into a gown and was lying on the table in the ward waiting for them to administer the local anaesthetic... I was lying on the table for about half an hour while they debated around me whether they could perform the procedure or not (all of this time I was covered by a sheet so I think they forgot I was there...). After much discussion they decided they would be unable to remove the line as it was too far up my chest and it is larger than the lines they are used to. The nurse who was about to perform the procedure kept saying, 'this is the highest line I've ever seen' - this phrase means absolutely nothing to me so I am not sure what she means. Anywho, they didn't feel comfortable taking it out so called down to Radiology to see if I could get it done there. As it turns out, they had a slot at 4.30 which would mean more hanging about but I would be able to get it out.

So Mum and I went for a coffee to wait.. I was not in a good mood at all and I could tell I was being incredibly grumpy - sorry Mum. When we turned up at Radiology we found out it was the Professor of Radiology performing the procedure. He was really nice and seemed very confident in his own ability which is obviously good! When I was on the table, it only took about ten minutes for him to do and the worst bit (as always was the local anaesthetic) was over quickly. He said one of the difficulties with mine was that there were two cuffs on it which meant he had to do a lot of tugging. It's a strange experience as you can feel pressure under your skin and you're aware that someone is pulling at something but it is not painful. Well, I say that but at one point he pulled very hard and I felt a huge pain in my neck! One of my nurses from Weston Ward said I should take my line home so I could look at it properly... So I did. I asked them if anyone had asked for their line before - apparently I'm the first! I'm not quite sure what to do with it now. I only really wanted to take it to show my Dad but it's rather creepy eh? One of the nurses asked me if I was going to perform some sort of voodoo type thing on it - ermmm no. It will most likely end up in the bin. If you are of a squeamish disposition look away now... Here is a snap of the line that was in my heart for four months.. Weird.

I have a couple of stitches which will hopefully be removed next Monday. So, bye Hickman Line! I won't miss ya. Well, I thought that until I was told I need to have a Magnesium infusion on Friday.. Typical! So, now that my Hickman Line has gone they have decided it is the right time to take me in for an infusion. This means that I will need to have a venflon put in my hand to administer the Magnesium and it takes six hours! Friday will be well boring.

My neck is pretty sore and I was told it will be for about a week. I'm not making any sudden movements or lifting anything heavy so it's not too bad... I've not done much today, a little walk in the garden and some piano playing. I might even paint my nails - pretty hectic stuff. So that is the tale of my third (and hopefully final) Hickman Line!

Sunday, 10 April 2011

How did I forget...?!

The most exciting thing to happen at the weekend was a letter that I received in the post... I bet nobody can guess who this letter was from.. Well it was none other than JK ROWLING! I am a total Harry Potter fan girl and was so surprised when this package turned up!

It turns out Teenie wrote to JK Rowling, saying that we have all read and loved the books for years and she wrote back! Teenie received a letter from her assistant and we also got a fact sheet saying she doesn't send personal letters or autographs.. Eh hello I got a letter, an autograph AND a Hedwig! I think Teenie did spin a bit of a sob story but I'm well chuffed. Anyway, that was Saturday's big news.

Also, a big Happy Birthday to my pal Will who turns 24 tomorrow... Mid 20's.. Sick. Furthermore, I am so aware the above post makes me look like a 13 year old geek and I couldn't care less!


So, the plan is tomorrow, to take my Hickman Line out. My blood was checked on Thursday and my white count was up so hopefully I won't be neutropenic tomorrow! I'm getting my blood checked at 12 then my line will be taken out at 2.30. I AM TERRIFIED. I only really remembered about it today so I've been freaking out about it ever since. I've been through it twice before so I should be fine but it's just really sore! The worst bit is probably the local anaesthetic so maybe I'll feel a bit better when that's done. The nurses are all lovely so I'm glad I'm getting it removed at the Beatson. My magnesium is still quite low so I've been taking stuff to kick that up a bit. Hopefully it will be behaving now.

I've had a nice day today but I am still so tired. I've been out of the hospital nearly three weeks now and I thought I'd be feeling a bit more energised. Unfortunately not. Last week I got very frustrated as I didn't really do anything because of my cold and my lack of energy. After the Beatson on Thursday we went to return something to Topshop and I had to keep on sitting down as my legs felt like they would give way. I've been told this will get better but at the moment it feels like it never will. I know I need to give it time but I am just incredibly fed up! I tidied my room a bit today and that even knackered me. I find it annoying that everyone around me can run about and if I attempt to walk up the stairs I'm totally floored. Basically, I'm insanely jealous of the amount of energy folk have! I just can't wait til I feel able to walk about more - I'm stuck inside missing all this great weather. OK, moan over.

The cards for my scan times came in the post last week. The prof is wanting to see me next Monday but wants me to have an MRI and CT before we see him. They're both booked for first thing in the morning then we'll see him after to discuss them. We've booked the flight for the Sunday night and we're coming back on the Tuesday afternoon. Maybe this time we'll be able to do something fun in London?! E.G. NOT SPEND IT IN HOSPITALS. OK, well Monday morning will be spent in a hospital but I'm sure we can find something to do in the afternoon... I feel quite nervous about these scans. It all seems quite final and I'm worried things won't be as positive as we hope. As far as we know, there is no tumour in my body (HCG has been below 2 since November) but you can't help but worry whenever a scan is booked. I guess it's just natural to feel that way.

Hopefully my next update will say that the Hickman Line procedure went ahead and everything went smoothly... Fingers crossed!

Wednesday, 6 April 2011

Blah blah blah

Good afternoon one and all. Well, I am still full of the cold but I think it is getting slightly better. I had my blood checked on Monday and I'm neutropenic again (down to 0.57 I think) which is rather irritating. If I'm still neutropenic on Monday they won't take my Hickman Line out. As of this, the prof has advised me to take a couple of GCSF injections to kick my white cells into gear. I hope this works as I am desperate to get this line out! As mentioned before, one of the side effects of GCSF with a low white count is a really sore back.. Cue lots of complaining from me this afternoon.. It comes in twinges and is rather painful but it normally goes away with painkillers. I've just taken a fair amount so let's hope that gets rid of it.

I've been sleeping a bit better but still feeling totally wiped. I can't seem to get out of my bed for hours in the morning as I just can't be bothered moving. Today I eventually left bed about 12 and Mum and I went to see Source Code starring Jake Gyllenhaal. It was really good! It was quite a short film but the time flew by. I wasn't overly keen on the ending but I thought the film generally was very well done. It was surprisingly funny at points and what girl doesn't like a film with Jake Gyllenhaal?! So yes, I would recommend this film.

My hands are still pretty tingly but they are definitely improving. Yesterday I spent the afternoon downloading some sheet music and I had a try of it this afternoon. I am rather messy when it comes to sight reading (mainly with rhythm) but I was surprised how much I was able to sludge through. I then thought I would try one of my favourite pieces and I managed to play it the whole way through! There were a couple of breaks to blow my nose (nice) and I made quite a few mistakes but in all I did OK. It was definitely the best I'd played it in months. One of the hardest parts is an ornament that leads into a chromatic scale and I managed to play it the whole way through first time! I was very pleased with this, first time in a long time.

There are still pictures of Teenie decorating the piano from her birthday. It's like Teenie's watching me whenever I'm playing...

I've been listening to the radio and my Ipod a lot recently and discovering how much music I had on my Ipod that I've never listened to! When I lived with Ruth and Amy I copied most of their CDs onto my ITunes so I've been going through some of them. I normally listen to the same stuff over and over again so I am quite enjoying listening to 'new' stuff.

At the moment my eyelashes are totally rubbish. They fell out AGAIN during the high dose and only some have grown back in. I'm hoping this is just a phase. Well it better be. I have had a love/hate relationship with make up throughout this past year. Some days I feel like I need to put it on as I hate looking 'ill' (kinda obvious when you're bald though). Other days I cannot be bothered and I feel like a total mess. I hated being in the hospital and having no make up on. I really don't like looking unwell. I guess it's a double edged sword though. When I'm out and wearing a hat I don't generally look unwell but I'm unable to stand in queues long or open doors. Sometimes when I really can't walk and I have to go in a wheelchair, I feel like a total fraud and that people are looking at me funny. I'm probably being totally paranoid but I think people do tend to treat you differently or look at you as to say, 'what are you doing in there?!'. This leads me onto shops and disabled access.. I guess you would never know until you have to but I've been quite shocked at the treatment of wheelchair users/shop layout in some places. One of my favourite shops, Topshop, has generally been quite good but when I was last in the Oxford Street Topshop in November it was dreadful. I had been out of the hospital a couple of days (after getting a round of high dose Etopiside) and had managed to walk a bit so we decided to attempt Oxford Street. After a wander round I was absolutely shattered and needed to sit down as sometimes your legs feel like they're about to give way. We went to the fitting rooms and asked if there was a disabled fitting room so I could get a seat. The girl just looked blanky and said she didn't know then walked away. I ended up sitting on the floor necking water as I couldn't hack standing any longer. She didn't seem to care at all. That REALLY annoyed me and I was getting ready to write to Mary Portas! I could go on about this for ages but will stop now as it will turn into an almighty rant!

Teenie has made cupcakes so I'm going to go downstairs and see if they're ready. I don't particularly have an appetite at the moment but I'm managing to eat at mealtimes. I have lost weight since coming home, maybe it's because I'm walking about more? I don't know. I can't wait til I have more energy and I'm able to actually GO on a walk! Right I'm off downstairs, laters!

Sunday, 3 April 2011

Happy Mothers Day

As most of you probably know, today is Mother's Day! Out of the kids, it was only Teenie and myself that were in. I think Mum liked her presents though.

Last year when I was diagnosed I moved home pretty swiftly and since then my Mum has done pretty much everything for me. It was about this time last year when I started going to the doctors regularly and nobody was really taking me seriously. If Mum hadn't stepped in and forced them to scan me I have no idea where I would be or what would've happened. I always knew she was good in a crisis but we never wanted to find out this way. She has attended pretty much every appointment, scan, test, hospital stay etc with me and has driven me to countless places! There have been so many things she has done for me, the list is probably endless. I think we've seen each other every day since last May, which was a big change for both of us! We've somehow managed it though... I honestly don't know what I would've done without my Mum and I only wish I could repay her in some way for everything she's done for me this past year. Her life has been completely on hold (like mine) so I'm sure she's looking forward to things going back to normal. OK, I'll stop being mushy now but you get the picture! So here's a snap of my wonderful mum - Happy Mother's Day.

Granny left today to go back to Fearn and we're planning a trip up there soon. We had a lovely night on Thursday with Auntie Dianne and co coming over for dinner.

I'm still choked up with the cold and the cough seems to be getting worse. I'm not sleeping very well so I'm not in the best mood. Oh well. Fingers crossed it will go away soon!