Catch up with what has been going on in my life by listening to my ramblings here!
Please also find a small selection (carefully selected, may I add) of photos from my hen weekend 😀
Catch up with what has been going on in my life by listening to my ramblings here!
Please also find a small selection (carefully selected, may I add) of photos from my hen weekend 😀
As I am super late with this blog, I decided to do it in video form instead!
Watch it here:
Lots of love,
First of all, I find myself needing to apologise to those of you who do not follow my Facebook Page Inside My Head, as my Facebook followers have already been made aware of the results I received from my scan that was carried out on January 4th.
The sickness I developed through fear when waiting for the results absolutely consumed me. I think I was so used to continuously being knocked back by bad news that I struggled to remain hopeful for good news this time round.
As I have mentioned before, I have been told that treatment will not shrink Trev the tumour in either location. I am undergoing this lengthy treatment with the slight hope that it may halt or at least slow the growth of Trev. It is with this hope that I continue to battle on through.
The call came; I cried.
Tears filled my eyes; tears of joy. I turned to my Mum and managed to say,
“I am okay! I am okay, Mum! It hasn’t grown!”
Stable scan results – WOW! After sixth months of chemotherapy, let alone casting my mind back to the seven weeks of radio/chemotherapy, it all felt worthwhile. I have now completed my seventh month of this chemotherapy cycle and have more UMPFF than ever to remain strong and healthy through the final stages of the twelve month course.
The year has well and truly began with a BANG! Anna 1 – Trev 0.
Thank you to everyone who has contacted me before my scan, in the build up to my results and since the good news has been delivered. Over a year on from this journey beginning, I am still left in awe of the support and love I receive from not only my incredible fiancé, family and friends, but from people who would otherwise be complete strangers. It really does make a difference, and make me feel as though sharing this journey with you all is totally worthwhile, particularly when I hear it gives hope to others.
Stability really does feel like everything; with ‘everything’ I am very content!
On completion of my fifth round of chemo (almost half way there!!), I thought I would fill you in on all my recent moans and groans, antics and updates…
First, let’s tackle the nasty stuff. Chemo has slowly become slightly easier; knackering, but, touch wood, my anti sickness medication seems to be doing the trick! (I literally am touching our kitchen table right now!!). My headaches have become slightly worse – but I am trying my hardest not to let them take over my life and to not overdo it with the pain killers! Although, I had a really bad one last night, as I got into bed. A tired, grouchy Anna, with a killer headache did not lead to good things…thankfully Andy was there for me to have a good old weep on his shoulder! (which incidentally made my headache worse – darn it!!!). The only other thing to report is that I have had quite bad pains in my diaphragm region and my back (rib area). To begin with they left me feeling very short of breath and panicky. As they continued, I became much calmer, as I knew it would stop and I could breathe!!! Having complained about the pain to my Mum though, she said it could be something as simple as trapped wind – embarrassing! I told my doctor and she suggested increasing the dosage of Omeprazole (a drug I take to protect my stomach, particularly from steroids). She thought it may be related to the extended period of time I have been on the steroids for – so I am rolling with that one and not wind! Haha!
On another note, my hair is slowly growing back. Albeit it is growing back practically BLACK and what looks to be CURLY – newest nicknames are microphone head or Kammy (Chris Kamara)! To be honest, I am loving the wig life (words I never thought I would type!). I get ready soooooo much quicker now and my hair always looks “did”. Who likes having real hair anyway?!
In terms of the other side of my life, living…I am happy to say I have been doing a lot of that and have been a busy lil’ bee! And I can’t just tell you guys about the horrible stuff, right?!
So, rugby mad that I am, I was rather chuffed to be off work sick and be able watch almost every single match during the World Cup (every cloud…). What made me even happier was being able to attend not one, not two, but THREE matches! I hope this doesn’t put some of my readers off – but I am well and truly a Welsh supporter, as a consequence of my Dad’s upbringing. England vs. Wales at Twickenham; we were sat Andy (England shirt), me (Wales shirt), Mum (England shirt), Dad (Wales shirt). And for those of you who don’t know….WALES WON!!!!!!! I had such a brilliant day at Twickers!
Next stop, Millenium Stadium, Cardiff for Wales vs. Fiji; Father and daughter trip to Cardiff – bloomin’ marvellous; another victory!
Wales were through to the Quarter Finals WOOOOOOOOO! I simply had to get tickets! Twickenham; Dad and I; they may not have won, but the boys did us proud! Rugby outburst complete (well, not for long – back to Leicester Tigers this Friday!)
What else has been going on? – Jill and Alan, Andy’s parents organised a charity night that was thoroughly enjoyed by all. I loved seeing some familiar faces and meeting many, many new ones too. A special thank you for a fab night and to everyone who came out for it, over £700 was raised for BTRC!
I was also invited to attend the local Rotary Club meeting as their guest speaker. I spoke of my “journey” and my aims. I went in quite ignorant really to how these organisations work and, I have to admit, I was quite nervous. My goodness did those nerves fly away quickly! Everyone was SO lovely! I shared my experiences and enjoyed delightful company. Since my attendance, I have been contacted to tell me that they have decided to donate to BTRC as they were so moved by my speech – ever so grateful!!!
Next on my list must be a puppy update I reckon – she is as beautiful as ever, just slowly growing longer and longer legs! She definitely seems to have calmed down a lot and is enjoying more cuddle time now which I am LOVING!
Now, I feel I have saved the most important and encouraging news to tell you until last.
People who follow my updates on Facebook too, have hopefully already seen the e petition I shared a while ago, calling for more funding to be given to brain tumour research (still accessible to sign here, which I plead with you to add your names to – takes two tics).
As you can read using the link above, a lady called Maria Lester, who sadly lost her brother Stephen Realf to a brain tumour, aged just 26, set up an e petition in his memory to gain more funding into brain tumour research from the government. After reaching 10,000 signatures, the petition gained a response (can be read by clicking on the link), unfortunately, not the one we were looking for 😦 .
Thankfully, the newly formed Petitions Committee decided that this cause was worth looking into further – particularly as it was not on the agenda for the Health Committee. They wanted to gain perspectives and evidence from charity campaigners, clinicians, and patients alike to best decide if this issue should be debated in Parliament. This link highlights why they decided to launch their first inquiry as a result of this petition.
The Committee launched an online web forum for people to share their experiences and to show their support for more funding into research. This closed on the 30th October with over 1100 comments left on the chat; one of those comments being my own:
“In January 2015, at 23 years of age, I was diagnosed with a Grade 3 glioma anaplastic astrocytoma and was told I had, on average, 3 years to live. My whole world changed. Although I have been offered treatment and have undergone radio/chemotherapy and I am on chemotherapy again for a further 12 months, the future looks bleak.
Unavoidably, this awful disease will not only take my life, but will destroy the lives of my mother, father, sister, brother, partner, niece, nephews, aunties….my, the list goes on! And since being diagnosed, I have unfortunately come across and met young and older people in the exact same situation; and worrying what they will be leaving their families to deal with when they are gone
I chose to try and not dwell too much on this horrific news and to turn it into some form of positive; I want to make a difference to lives like mine and to those who are yet to be diagnosed. I decided to start writing a blog called Inside My Head (annaswabey.wordpress.com) detailing my life with a terminal brain tumour – I saw this as a way of helping myself, others alike, and to raise awareness of this severely underfunded cancer. Off the back of its popularity, I began fundraising for Brain Tumour Research campaign (to date I have raised £35k). Research into brain tumours is my only hope of living; in my eyes, I will not stop fighting for more funding into research until my last breath!
Forgive me, for I am not a doctor, a scientist, and I by no means profess to be an expert in the field at all, but if brain tumours kill more people under the age of 40 than any other cancer – why does research into brain tumours receive a mere 1% of national cancer research funding?! …It does baffle me.
My life has changed forever, the only other way I want other peoples life to change is that there will be a new found hope; different treatments, and ultimately, the best ‘C’ word I will ever have heard – A CURE.”
Since then, the Petitions Committee have invited 20 patients to a roundtable discussion at Westminster. I am delighted to say that I am one of those people.
Next Tuesday, 17th November, I will be heading to the Houses of Parliament to share my experiences with the MPs on the Committee. I sincerely believe this is a huge move forward for not only brain tumours on the political agenda, but also for democracy in general; obviously I feel very honoured to have been given a chance to be a part of that.
I was on Metro radio again today talking about it, and will be again around the time of my trip to Parliament – all fantastic awareness that has left me feeling more positive! Here is the link to the news item on their website.
Oh and on a happy, lovey dovey, personal note: Andy and I are moving in together! I will get a housewarming arranged ASAP and you are all invited 😛
I wrote this part of my post quite a while ago now, but never got round to checking it and posting it, but here you go…
(Written roughly w/c 29th June 2015)
Well, my break from treatment has flown. And I have had many of you asking if I am okay as I have been rather quiet since finishing chemo/radiotherapy on June 12th…
Truth is, I have struggled the past few weeks, and I want to try and be as honest as possible with you all, without being too much of a “negative Nancy”, as my mood has changed over the past couple of days or so and for my own sake I would like to keep steering in this more positive direction. And I am really late – I should be packing for my trip down south right now, so I won’t keep you for long. (That is now a lie – apologies!!)
I have had, like the doctor did mention could happen, severe side effects in terms of fatigue since completing treatment. I have found it hard to conjure up the motivation to shower, get ready etc. let alone go out. I have then found myself in a vicious circle; the less I do, the more tired I become; the less I do, the more I think; the more I think, the more negative thoughts that enter my brain.
The main thought that has been bugging me (in all honesty, scaring) me the most, has been that we are in JULY! It has been over seven months since I was taken in to hospital now. As much as I like to remain positive and hope that I will live a HELL OF A LOT longer than the average 3 year diagnosis, if we do take this 3 year figure – I have already fought through 7 months out of 36 months already. 7 months, gone, just like that!
Other times, I have been worrying about my scan that is scheduled for Tuesday. What if the tumour has grown?! I have been trying to play it through in my mind of how I will deal with the news if that is what I will be told; but nothing can prepare you for that. I try to remind myself of a previous blog post I wrote, when I spoke about how a session at the Maggie’s Centre taught me to deal with uncertainty and how not to try to worry about things that are totally out of your control; but I am most definitely NOT a pro at this yet! So, I sit here, begging for the best case scenario; I want to hear the word STABLE. I want to be stable. We always knew that Trev was not very receptive to radiotherapy treatment, so I am not being ridiculous thinking that I will be told it has shrunk or anything; just stable. No growth please!!!!!
Tuesday is also when I will begin my next load of chemotherapy; Temozolomide again, but this time on double dosage, for 5 days, and then off for the remainder of that 4 week period. Depending on my reaction to it, this could last for up to 12 months. A year; blehhhh! I am, again, expecting the worst; if you remember, I was very sick on my first day of chemo in the back end of April, thus, on double the dosage, I reckon it may be quite tough.
I have basically just felt a bit POOP! I have piled on weight, I have no hair, I have minging skin (all may seem so little and trivial in the grand scheme of things I know), and being completely honest, I don’t think I have ever got my head around the fact that I have cancer (nope, I certainly haven’t, as it still feels odd typing it out).
I feel like I need to apologise that this post is probably a bit of a let down and not very “Anna-like”, but I think it is important that you know that even people who can come across really tough on the surface, and put on a smile and a brave face, can be just as weak and vulnerable as someone who cannot hide it as well. Most of the time, I find I put on the brave face to save my family from having to deal with an emotional wreck 24/7. But if these down weeks have taught me anything, it is probably that this is not a good action plan. I need to let them know exactly how I am feeling; and I want to let you know too. And I should not apologise for having such feelings.
In actual fact, I found this quote online the other day, probably when I was stalking someone I do not know on Instagram (as you do….right?!):
Never apologize for how you feel. No one can control how they feel. The sun doesn’t apologize for being the sun. The rain doesn’t say sorry for falling. Feelings just are.
On the flip side, I have been on the radio again, BBC Tees had me on for a full hour show which was fab. I have been amazed by the on going fundraising support and ideas from so many people; it really is humbling and I am so honoured people have taken this campaign to their hearts and are willing to help try to find a cure to save my life and so many others alike.
I need to remind myself, and inform you, that since deciding to start fundraising on behalf of Brain Tumour Research Campaign, only at the beginning of March 2015, and, with the help of all of you wonderful lot, the total we have raised cumulatively has now ticked over £27,000!
TWENTY SEVEN THOUSAND POUNDS!
This is when I get a “kick up my derriere” and realise that I am doing good! WE are doing good! No, actually we are doing better than good! £27,000 is INCREDIBLE!!!!!!!
I am blessed that no matter how I am feeling mentally, I always have the support of so many; family, boyfriend, loved ones, friends, adopted families, brain tumour buddies, and people who have come across my blog and have made the conscious decision to help me on my journey, most without even knowing me at all!
I will be sure to let you know how I get on this coming Tuesday, I will just apologise in advance if it is slightly delayed, as I will be starting on my chemo.
But this is it; Fresh start; Positive Anna. Speak soon!!!!
My appointment was on July 14th 2015. It is now August 8th 2015. So I broke my promise to you all I am afraid.
Some of you who follow Inside My Head on Facebook also, may already have seen why this is the case. Please see below what I posted:
Trev, the bastard, had grown 😦 .
Hi everyone! It seems to have been a while, and yet that while seems to have passed very quickly for me as I have been so busy!
For those of you who follow my journey on Facebook as well, on the Inside My Head page, you will have seen that on Monday 27th April, I started my chemotherapy and radiotherapy treatment. I see this as round 2 of my fight against Trev – round one being my operation. DING DING! Let’s go!!!
I wanted, for selfish reasons and personal interest, to keep an almost “diary style” of my progress during the 6.5 weeks of treatment. But then I also thought, well, this may be of help or interest to other people who are due to undergo the same/similar treatment, or help those people supporting patients, so why not post it on my blog and make it public. It may not be particularly detailed if not much is happening, but hopefully, that will be a good sign! I will try my best to add to this post daily, or you may find, as today, I update you on a few days progress all at once.
As mentioned in my last blog, my treatment will last 6.5 weeks (33 sessions) and this takes place Monday to Friday, with weekends and bank holidays off.
Monday 27th April
Day one! So, I start day one of my commute in to London (deciding to use the train while I am feeling fine and dandy) I get one train to Finsbury Park from our village, and then get the tube direct to Hammersmith where Charing Cross Hospital is. Going into the unknown, I pretty much resigned myself to the fact that there was nothing to be scared about; I knew it would be painless etc. and fortunately I was right! I had a couple of chats with the radiotherapy nurses, and then the Ward Sister talked me through and gave me my chemotherapy tablets, I am on Temozolomide. They look very “chemically” to say the least, even the bottle looks poisonous, green in colour with hazard stickers on it- I hope you enjoy that Trev! Chemo done, now time for the radio! I was taken through to a room, that simply reminded me of another MRI scanning room really, but without the noise! I lay down on the bed and then they bought out the monstrous creation of my face, my radiotherapy mask….I hate to say it, but, as ever, my mum was right, my nose certainly did make a grand appearance!!! They place the mask over my face and clip it down on to the bed to completely restrict my movement and thus ensure the radiotherapy is effectively targeted in the same place every day. After checking all the measurements, there were concerns that the mask was too slack on the sides of my face…they asked if I had lost weight…I laughed and said, “I wish!!”. They made some adjustments and then the mask was fitted like a second skin, just how they like it. I was left for what felt about 10 minutes while the treatment was delivered, and then that was the job done…easy peasy I thought!
I always had in my mind that the first couple of weeks would be easy until the treatment levels slowly built up over the coming weeks. However, I think I got a bit too cocky – After having dinner at about 8pm, I sat watching tele and felt really queasy. Come 10.30pm, all of my dinner, completely undigested, made a very unwelcome appearance! I then became really emotional; I couldn’t believe the treatment had defeated me after just one day! I then became worried about how bad the next 6.5 weeks would be. I was quite harsh on myself I feel. As explained previously, these treatments can affect people in completely different ways and at different times. Although not a very good “sick person” ( I have always hated physically being sick), I much prefer being sick than to have the feeling of nausea. I then took my medication for the night and went straight to bed so they would stay down. Unfortunately, the feeling of nausea returned at 2.30am and woke me up. I lay in bed really upset and feeling really unwell, and then I was finally sick again. Fortunately I managed to get back to sleep reasonably quickly.
Tuesday 28th April
This was a new day; and it had to be better than the day before! I now knew what to expect in terms of radiotherapy treatment, and was ready to go! I was advised that I could take my chemotherapy medication at any point during the day; I decided to take mine in the morning. I thought if this did not work well, I can always rethink and perhaps take at night time. I WAS NOT SICK THIS DAY!!! YAYYYYYYYYY!!!
When in hospital, I did warn the staff that I was sick the night before. Surprisingly to me, I was told it more than easily could have been a side effect of starting the chemo tablets. The radiotherapy staff assured me it couldn’t be them being the nasty ones making me sick quite yet! They agreed that it would be clever to keep a record of how I am feeling each day, so the blog posting was medically signed off 😉 . On Monday evening and throughout this day, Tuesday, I had been taking anti-sickness medication – this had obviously kicked in and worked its magic! WOOP WOOP!
Wednesday 29th April
Wednesday, this is the day every week that I have a meeting with my oncology doctor. My appointment therefore is slightly earlier than normal to coincide with his clinic. I saw him first, chatted briefly through how I had found the past couple of days, all very new really. I discussed the above and he said not to worry about being sick on the first night. He too mentioned that the chemo could have kicked in that quickly. He also however, said that in his experience, those who are sick at the beginning, tend not to be those effected so harshly later on; but I will not get too excited, as I know I am a separate, individual, and “special” case!!!
Another positive to come out of this meeting – MY STEROIDS DOSAGE WAS HALVED!!!! This was such good news for me! As you may have read previously, I have piled on the weight since January thanks to those little bastards! I am down to taking only 0.5mg now, which is nothing in comparison to what I was taking a while back, so I am desperately hoping my hunger may disappear too!
Thursday 30th April
Easy day of treatment and no sickness! I also had my bloods taken (this will be a weekly occurrence to keep an eye on me).
Friday 1st May
Can you believe it is bloomin’ MAY?! Where has this year gone already?! …… Oh yeah, stuck in hospitals!!!! 😦
As I had to travel back up to the North East straight after my treatment this day, due to my Charity Ball, my Dad drove us to the hospital, so we could hop straight into the car and on to the motorway (although “hopping straight on to the motorway” was slightly optimistic – the traffic was HORRIFIC!).
The journey to the hospital was not the best; I was feeling really queasy again! I had Asda carrier bags doubled up on my lap as I was adamant I was not going to be able to keep this in! I did though!
I went in for my treatment; job done! FIRST WEEK DOWN!
Then we just had the small matter of a 7.5 hour journey up to the North East; it hurt. ALOT! But we made it!
So, as it was a bank holiday weekend, I had 3 days off treatment yayyyy!
I will say nothing more, as I will be writing a separate post, filling you in on Cinderella’s Charity Ball at Wynyard Hall.
Sickness wise, I was still slightly fragile on Saturday.
Sunday and Monday, I was fine; just shattered from Saturday nights antics!
Tuesday 5th May
After three days off, it was time to get back into action! The day started off well, I woke up fist pumping the air…I woke up at 11.15am! QUARTER PAST ELEVEN!!! This is the longest I have slept since I was taken in to hospital on January 9th. I was over the moon and I woke up feeling super chuffed! Another day down!
Wednesday 6th May
Wednesday is doctor day. We got the train just after 9am to get there for 11am clinic. All was fine with my blood tests from the previous Thursday, my steroid dosage is now down to 0.5mg alternate days! Yayyy! And, the ball is now rolling for me to meet with a dietician/nutritionist to discuss the Ketogenic Diet. This is something that was mentioned to me at the very beginning, as a possible way of helping to get Trev to do one…at present, there is very little research to suggest this diet (which, from what I hear is similar-ish to the Atkins diet. It basically starves the tumorous cells of glucose- glucose helps them to grow as far as I can gather- I will be sure to post more detail when I know it myself) is by any means a definite method of preventing tumour growth; but I am certainly willing to give anything a go!
I had to just quickly add on to this day’s post…I had a bit of an emotional evening. I got into bed, ready to sleep, and stupidly went on my phone. I came across the updates from Stuart Ridley’s journey – The Stay Strong Stu campaign. I first came across this campaign as Stuart, young farmer and a keen rugby player, was too diagnosed with an inoperable brain tumour and he lives not far from me in the North East. Unfortunately, Stu’s tumour still remains inoperable and he underwent a course of radiotherapy treatment. However, as he posted to his page, after his treatment, a scan revealed it had sadly not worked and his tumour had in fact grown. Stuart was given a 6 month prognosis. Even more devastating to this story, he is only 25 years old. I wept in bed, as I had seen a post from his Mother, updating his supporters that he was currently “slowly slipping away”. Although, writing this blog and fundraising certainly does help take my mind off things, reading this sad news really did hit me hard. I think it brought me back to reality slightly of quite how horrific this disease is. My thoughts are with Stu and his family and friends, he is a real inspiration and his Stay Strong Stu campaign has/is and will continue to be incredible.
Thursday 7th May
My bloods were taken today. And my treatment was all on time. This day went very quickly, and for that I was glad…I think the tiredness is slowly beginning to take its hold. I am very sleepy!
Friday 8th May
Boy oh boy I was tired today! Treatment was on time which was fab and I collected Trev’s dose of poison for next week. When I got home, I went for a nap…FOUR hours later I returned. I must have needed it! Now I look forward to 2 days off 🙂
I was very happy to have this weekend to totally chill out and relax…however, it was not quite as relaxing as initially expected! My rugby team Leicester Tigers found themselves playing Wasps at the Ricoh Arena, this was a MUST WIN game for my boys to ensure for the 11th season in a row I was going to be attending the Premiership Semi Finals! In the build up to the match I was feeling really queasy – and I was unsure if this was linked to treatment side effects or just the sheer magnitude of the fixture!! It was a stressful 80 minutes in our household but Tigers played incredibly well and left the fate of being in the Semi Finals again this season in their own hands – on to beating Northampton Saints next weekend!
Monday 11th May
Another week begins! I was feeling particularly tired again this week. I felt like an old lady, certainly not my 23 year old self! Andy was down again this week, so it was lovely having his company and we made our way into hospital again. Day one of week three sorted!
Tuesday 12th May
Today was another time efficient session and I seemed to be in and out in no time! When arriving back home, I had started to notice my hair was moulting slightly. This was no major scare to me at the time as I have such thick natural hair, it has moulted a lot in the past…much to the annoyance of the wonderful people who are lucky enough to live with me 😛 . I, however, was slightly more dubious, and suspected that this was the start of me losing my hair. I rang my Mum back up in the North East and told her of my concerns, fortunately, my gorgeous nephew Theo was also on hand to ease my worries. He confidently told me that I wouldn’t look like an idiot if my hair started to fall out, I would just look like Gollum…BRILLIANT! And what worries me the most, is that I know children give you honest answers and opinions!
Wednesday 13th May
I woke up feeling quite good today, with seemingly more energy than the past week or so. Today is doctor day – we saw my oncology consultant, went through a few queries, organised some more prescriptions and then treatment was completed really promptly today. We drove to the hospital today, I had an eye test with my optometrist aunty in Southfields and we stayed the evening at her house, which was lovely as we got to catch up and I saw two of my cousins! Unfortunately, after my eye test, we wandered back to my aunty’s house and I began feeling really sick; which I eventually was. I all of a sudden felt completely zonked and had to take myself upstairs to lie down and sleep it off a bit. I also lost ALOT of hair when I brushed through it before bed; the hair loss was certainly kicking in.
Thursday 14th May
Time to drive to the hospital from my aunty’s; I was still feeling ropey, but after going for my blood tests, my treatment all ran on time and we were home quite quickly. When I got home I knew it was hair washing time. I think sub consciously, certainly without realising before this point, I had been putting off washing my hair for as long as possible. I had been warned that it would be in the shower where I would lose the most hair. Before I went in the shower, I sat on the sofa, brushed through my hair, as I rather it fell out before than during my shower. Tears came from nowhere. I was really scared about having a shower! What an idiot!!!!
Not much more came out in the shower, but my hair was certainly feeling horrible. I can’t use a hairdryer to dry it after showering anymore, as the heat is bad for my head/scalp. I can’t straighten it for similar reasons. And, I have to use baby shampoo so it is gentle on my skin. So basically it feels horrendous and I cannot style it at the moment. For me, my hair was a big thing (literally, most of the time!) and it has definitely made a difference not being able to “do” my hair before going out anywhere etc. put a bit of a downer on my mood shall we say.
Friday 15th May
I woke up with my scalp itching really badly, I brushed lightly through my hair and my goodness ALOT of hair came out. It was this day that I really started feeling like a “cancer patient”. I had bad bald patches on the right hand side of my head now. But, MY MUM WAS COMING DOWN TODAY!!!! Yayyyy! It was perfect timing; just when I needed to see her. My Dad and Andy had been doing a fab job keeping me smiling, laughing and most importantly helping me travel into hospital every day, but just as I was losing my hair significantly, it was definitely time for a mum hug 😉 . I think it hit her quite hard as well when she arrived. Mum and I went by train to treatment today, and then when we got home she sat and brushed through my hair and rubbed a load of E45 cream on my dry bald patches. The cream was such a nice feeling on my scalp! She admitted she was holding back tears, but no way was she crying because I was being so strong, bless her! To finish off my third week of treatment, I had booked for my parents and Andy and I to go and see Pitch Perfect 2 (for people who may not know, I am a Pitch Perfect mega fan and between my sister, niece and I, we know all the dance routines from the first film!). It was a fabulous night, and just what I need to pick up my spirits!
Time to chill/ get super nervous and excited over the rugby! It was Derby day on Saturday and since the previous weekend, I had been getting myself worked up over this fixture – I am still certain my sickness on Wednesday was down to nerves and stress rather than treatment! 😛
Without giving you all a running commentary of the games highs and lows, I am SO HAPPY to say, that for the 11th season running Leicester Tigers will be in the Semi Finals of the Aviva Premiership! WOOOOO! And I am SO DELIGHTED to say that we have managed to get tickets for the semi final in Bath for next weekend! This ties in beautifully with the bank holiday weekend and a rather significant birthday for my Mum on the Monday (I promise I won’t tell anyone your actually milestone birthday, Mum – but trust me, you look awesome considering you are turning SIXTY!!! When I beat Trev and live till I am 90- odd, if I look as good as you at 60 then I will be happy 😀 )
A chill out day on Sunday then I was ready to rock and roll again. COME AT ME WEEK 4!
Monday 18th May
So, I had a bit of an amusing start to the day today; whilst getting ready, I pulled my top over my head and consequently watched what I had left of the left front of my hair fall out! Although I was sad-ish, as this now did mean I had nothing left on that side, it was also quite funny how it happened and I had both Andy and my Dad on hand, laughing may I add, to help me see the funny side of it all.
It really was now – operation GET ME A WIG! I am 100% certain that I need a wig at least just to last me the weekend, then I can always get a nicer one for the longer term afterwards. My Dad managed to arrange an appointment for me to visit Trendco in London tomorrow WOOOO! I have absolutely no idea about wigs, but fortunately I can draw upon my fellow brain tumour warrior, Charlotte, for her expertise 😉 . As I have previously said, if I can look half as good as she does in a wig, then I will be a happy bunny! She recommended Trendco, as did Wendy Fulcher (founder of BTRC).
I was slapping the E45 cream on this morning. I cannot explain how itchy and irritable my bald scalp is – it is DRIVING ME MENTAL!!!!!! I let it soak in, then the hat was on – off to the hospital we went (today by car as the weather was horrid and I (here I obviously mean Andy but don’t want to embarrass him) did not want to ruin my hair 😉 .
During the journey, I had a call from a lovely lady called Laura who works for CLIC Sargent and she is based at Charing Cross. CLIC Sargent are another amazing charity who help children, teenagers and young adults, 0-24 years of age, to deal with a cancer diagnosis, and all the nitty gritty stuff that comes along with that – emotionally, financially, logistically etc. It all fitted in quite nicely; as we drove today we arrived at the hospital an hour early and Laura was available so we met up when I arrived. She was extremely helpful and I told her about my quest to now get a wig. She said she would make some calls and get back in touch with any progress she had made for me.
Treatment was, again, pretty quick today.
During the journey back, I received another phone call; this time from another lovely lady called Wendy from the Little Princess Trust. I had already heard of this charity as Helen Ward, one of my former work colleagues when I had my first job at 16 years of age, is so kindly doing some fundraising for me. She has decided to chop off her 23 inch ponytail in aid of BTRC, then, even more incredibly, she is donating this amazing amount of hair to The Little Princess Trust. This charity provides real hair wigs for children who have lost their own through cancer treatment, they receive no formal funding, therefore rely on fundraising efforts. As Helen has showed, they also rely on the donations of hair to make some of their own wigs for smaller children. What I was not aware of, however, is that they also support people like me. This phone call had me in tears. Wigs can really, really vary in price from the NHS allowance wigs (£80), to thousands of pounds for high quality real hair wigs. For some, any price is simply too much and they would go without; this incredible charity ensures that is not the case for children, teenagers and young adults like me. Wendy called to tell me that whatever wig I choose at Trendco tomorrow will be covered for by the charity. It just so happened that Trendco work alongside the charity, and after Laura had rang the charity, it has all been arranged. WOW! I am hoping, what is left of my hair I will be able to donate to them too. I am fortunate that although I have lost a lot of hair, that my hair is so thick there is still a lot left at the back and down the middle for the time being. Roll on some serious selfie taking in my wig soon 😉 .
Tuesday 19th May
I have woken up this morning, already excited to go wig shopping this afternoon.
I have to admit, that feeling has just been TOTALLY TRUMPED!!!! PkjoreifkrbeglhbldfbvjSFLwefbwehjf!!!!! I AM SO EXCITED! I have just received a personal video message from MY IDOL MIRANDA!!!!!!!! I simply have to share it with you all, and in fact, I think she may even deserve her own post, so hold that thought and probably look above to Post 10.
Now time to compose myself and get ready for treatment and wigs ( *dragging myself down from my Miranda cloud of happiness* )
So treatment was EARLY today – wowzers! So I was in and out super fast. Then it was time to navigate our way to the wig shop. Unfortunately as I was sure I wanted long hair, to keep to what I have been used to for so long, there were only really 2 options – one of which would not even fit on my massive head! (Embarrassed face). I tried on a few different colours, but blonde was the only one that looked right. I have not yet had time to style it etc. but it still looks okay and I cannot wait to have a proper play around with it. Here , for now at least, are some poor selfies that I quickly bounced to friends and family earlier…just to give you a taste 🙂 .
I need to say a MASSIVE thank you to The Little Princess Trust! Without their help, I do not think I would have been able to come home tonight with a real human hair wig, that looks so natural and makes me feel a LOAD better – unsurprisingly I have called my new wig, Miranda!!
Wednesday 20th May
A very easy trip today, and doctor day enabled me to stock up on cream for my increasingly balding head.
Thursday 21st May
So, I decided to try out another wig shop closer to home, Hair to Ware, cleverly, located in Ware 😉 . I wanted to just check that I had been made aware of everything available. The staff here were absolutely amazing – hugeeeee shout out to them (Stuart and Katie).
I was made to feel so comfortable and relaxed and I had a laugh! Mostly because Andy and my Dad were sat directly behind me and I could see them in the mirror as I was trying on different styles. As I headed towards trying some of the more ash blonde colours, I couldn’t contain my laughter at this point…this particular wig was rather on the ashy side and I had a glimpse of what I will look like when I am old and grey (because I WILL live to be old and have hair this colour), but I certainly was not keen on having it at 23 years of age! They showed me a style about the same length as Miranda, but informed me they can order it in a much longer version….so I picked two shades of blonde (still being boring and keeping it safe for now until I become a bit more ballsy and rock a Rihanna look!) and they ordered them in for me to try 😀 … so watch this space!
We then decided to drive straight from Ware to the hospital as I had to go and get my bloods taken today anyway. Bloods were done, treatment done, cheeky subway later (new addition to Charing Cross hospital that has brightened up occasional treatment days now 😀 – certainly for Andy! ).
Friday 22nd May
MY MUM ARRIVED TODAY!!! I was soooo excited to see her and it also meant that I was one treatment away from our fun filled 3 day weekend of rugby and birthday celebrations! WOOOP!
Mum and I got the train in together and allowed “the boys” some very well deserved time off. It was lovely catching up with her! As a result of this catching up, the journey seemed to pass by very quickly and we were in London in no time!
One thing I haven’t really mentioned on this post to date is that by A LONG way I am the youngest person I see on my trips to the radiotherapy department. I find it quite odd seeing the, (how can I put this politely?), slightly more mature people than I, and how they look at me when I come in for treatment. It must be quite a shock to see someone so young, I suppose. But, then again, I find myself sitting there and watching pretty much the same people (normally my timings run pretty consistently through the week) day in day out. Obviously, I do not know anything about these people, just like them with me, but each of us can appreciate, to some extent, what everyone is going through; I try my hardest (sorry if you caught me on a bad day) to say hi and smile to all I see in there each day. Although I do question at times, “how is it fair that I have such an illness at only 23 years of age?!”, I am so blessed; I am young and fit – these factors must be having a huge impact on how I react to and cope with treatment, and I have the most amazing friends and family – I have never had to make the trip into London on my own once; if I wake up in the night and I feel sick, I am never alone; if I have a breakdown, I always have someone there to grab me a tissue and give me a hug. What makes me more sad than me being ill (and probably quite unnecessarily so, but I have always been a bit hyper sensitive when it comes to the elderly), is that there are so many who come in for treatment using NHS provided transport, by themselves, certain people I have seen weaken, lose weight, struggle to make a cup of tea etc. In that respect I am glad I am young and what I get from Trev, I can give just as good back; the fight is well and truly in action!
Treatment finished, Mum and I gave a WOOOP WOOOP as we walked through the doors; Week 4 was over and to make it even sweeter this marked the beginning of THREE DAYS OFF!
On returning home, my naughty boyfriend had been on a shopping spree, fortunately setting aside some time to buy some clothes for his upcoming holiday. But, thoughtful as ever, he also got me “The C Word” book. For those of you who missed the BBC Film on a few weeks ago, you MUST watch it! It was so moving, yet hilarious at the same time. Lisa Lynch, played by Sheridan Smith, was one INCREDIBLE woman. Until I came across this on the BBC, I had not heard of Lisa before. I watched this film in utter disbelief as to how similar her thoughts and humour were to my own. Everything she said I could relate to. And she too chose to write a blog to help her get through “The Bullshit” as she called it. She fast became a total inspiration and since watching it, I said I MUST read her book. Now I could 😀 .
Throughout this week, more and more hair had been falling out. I think this is karma for me always taking the micky out of my Dad’s receding hair line for years; mine now looks like a JOKE!
In actual fact, my mum came up with a particularly good one – as my hair, although very thin compared to normal, was hanging on at the back (ish), she made me put black sunglasses on; she then proceeded to play Stevie Wonder (LEGEND). Fortunately for my Mum, I found this hilarious, and then went on to send snapchats to friends and family who I know would see the funny side also!
Theo, my “always puts a smile on my face” nephew, is now calling me Anna Wonder. Fabulous!
Wooooo! I have never looked forward to weekends as much since when I was back at school or college. My job previously meant I worked one day of the weekends, so this full weekend off thing was a real novelty. And even better, this was a bank holiday weekend!!!!
I don’t know if I have mentioned before, but I am a huge rugby fan 😛 , and this weekend was the Aviva Premiership Semi Final Bath Rugby vs. Leicester Tigers. I had prepared myself for the fact that this weekend would not be a chill out one, and in fact the exact opposite – hoping for lots of cheering, nerves but eventually total joy and excitement when we got through to the final!
We drove down to Bath, the sunshine was out 😀 yayyy!!! It was time for Miranda to make her first public appearance, and I am not going to lie – I was bricking it! I am a very self conscious person at the best of times, and despite my nearest and dearest (who I know would tell me if I look awful) telling me the wig looked fab and natural and they couldn’t tell, I could, and I was petrified. I had a word with myself in the mirror. I knew I couldn’t go out with my Anna Wonder hair doo ( I decided that would be too much for people to handle, and I would have all the cameras on my amazing hairstyle, and the poor fans who couldn’t make it to the game live, would be gutted to not get any coverage on BT Sport!); for the time being, I could not have my lovely thick locks back (obviously when I had those locks I moaned and have tried several methods- colours, products, extensions, to make them better – right now I would do ANYTHING to get them back- so be happy with the cards you are dealt peeps!); so it was Miranda, or miss out on sunshine, fun times with my parents and Andy, and a Tigers win; Miranda it was! After fiddling around, trying to make it look as natural as possible, I was ready for it!
Bath is a beautiful city whatever the weather, but my goodness, with the sun shining down it looked better than ever! I was expecting some funny looks and to feel extremely self conscious, but surprisingly I didn’t! I was far too carried away with enjoying the sunshine, my amazing company, watching the other semi final on television, and dealing with the butterflies in my tummy about our upcoming game! Walking the short distance to the ground, I felt so content.
Unfortunately, my happy little bubble was abruptly burst when Bath came storming out and scored their first try (first of many unfortunately). Without giving an entire review of the game….I was an upset Tigers fan, and the final was not meant to be this year (only positive is that I can now attend a provisional wig fitting appointment I made at Hair to Ware next Saturday when the final is!).
On returning home on Sunday, I did find some time to chill out, which was lovely. Even better, I had quite an appetite and so I ate and watched the last day of the football season on tv…in case you didn’t hear me shouting – It was a much better day for my football team!!! Stoke City beat Liverpool 6-1 YES STOKE!!!! I think they must have heard how heartbroken I was the day before 😛 .
Monday 25th May
So, normally I would be talking about going in to hospital AGAIN, however today was BANK HOLIDAYYYYY! And, not only that, it was my Mum’s birthday! HAPPY BIRTHDAY MUM!!!!!
I was delighted that it tied in with a day off treatment for me and we made the most of it!
Mum was smacked in the face by these delightful balloons when she came downstairs to help remind her what significant milestone birthday it was today, in case her aging memory had failed her! 😛
We went out for a lovely meal, and sang and danced around the house to The Vaccines (tickets to their tour being one of her presents). And the highlight of the day for me (and I hope for my Mum), was seeing her face when she opened her pressie detailing that we are going to see England vs. Wales in the Rugby World Cup in September!!! This is one of those presents that please ALL of us (I used to call these types, selfish presents, but she was literally over the moon!). But, yeah I AM GOING TO SEE ENGLAND vs. WALES TOO!!! AHHHHHHH!!!!
My Mum, well and truly, has throughout my whole (nearly) 24 years been my bestest of best friends (don’t get me wrong, I ‘hated’ her when I was a teenager when she would moan if I asked for a lift, or she wouldn’t let me stay out that extra hour later), but god damnit she is ALWAYS right, gives the best hugs and is my rock. A special mention however, has to go to her for her support during these past 4 months. As a whole family, our lives have been (quoting the Fresh Prince theme tune – which I have now just broken into) flipped turned upside down (“Now I’d like to take a minute, just sit right there….” sorry!). What has been my main concern from the beginning has been and always will be the effect that bastard Trev will continue to have on my loved ones. I know I just have to deal with it and I simply have to stay positive to give myself the greatest chance possible of prolonging my life; how I would act if, for example, Mum and I switched positions, I do not know if I would cope! The feeling of utter helplessness would engulf me, I reckon. But I tell you what, she is not letting any of those horrible feelings and worries get in the way of her unwavering support and the laughs we continue to have!
I am certain that Mum and I, and our whole family will share many more birthdays together for a lonnnnng time to come!!
Tuesday 26th May
There it was, that Monday feeling; it just came a day later. Hmmmf. Back to the hospital, but with the hope that this week would fly with just 4 treatments. Tuesday was a simple visit.
Wednesday 27th May
Doctor day today; and quite a funny one at that! After telling me everything was looking good with my bloods etc. and me not having any particular issues, he proceeded mentioned that the ward sister had been reading my blog! He then said that both himself and my oncology consultant sat down the other afternoon to read it themselves, until they were called to see to another patient! I jovially commented that I would need to make a few amendments to the blog very swiftly and take out all the bad things I had been telling you guys about them :p . So, I now see this as their test … let’s see if by next Wednesday they have read this part of my blog!
Thursday 28th May
The monotony of the treatment had well and truly sunk in now (I reckon it had probable sunk in before today I just try my hardest not to moan too much to you all). I just did not want to go anymore!!! I WAS IN A GRUMP! I just wanted to pull a sicky (and for once, I was 100% actually feeling SICK! Sick to the back teeth of going to the hospital every day, sick of the disgusting smell my radiotherapy mask now seemed to carry – unfortunately probably from my wrank chemical filled breath – sick of feeling sick, and SICK OF HAVING CANCER!); but, unfortunately, this treatment, although making me feel sick, is something that does not allow me to have more days off other than my weekends.
Sorry, rant over!
Bloods taken, treatment done, it was lovely to come home to four friendly faces – Andy, his parents and Ruby (aka my best puppy friend). We had a lovely meal and it made a more than welcome change to my usual monotonous routines. I am even more lucky to have a second supportive family J .
Friday 29th May
I woke up this morning and most certainly was consumed by that FRIDAY FEELING!!! I was desperate to see the weekend as my grump seemed to be getting worse! I did not want to see my lovely second family leave and head into hospital AGAIN 😦 .
But after dragging my feet to Andy’s car, we were on our way, and out before I knew it! FIVE WEEKS DONE! Another week bites the dust!
What I am now loving being able to say is…. I only have 10 more days (2 weeks) of treatment left to endure, and then I have a nice little break!
Although on a high from the end of the week, that evening was tougher than expected – I was feeling really queasy and from that developed horrible sadness; I felt sad to my core. I just cried and cried and cried. I was so fed up!
Just to update you also, I have made a massive dent into “The C Word” book this week – My goodness I have been in stitches on the trains. Lisa Lynch – you absolute BEAUT of a woman and what a shining star you must now be in the sky! The similarities are, however, beginning to scare me – I concur with literally everything she writes. If I can be one millionth of a writer, motivation, inspiration to someone in my lifetime, as she is to me, then WOW!
I was so relieved for the arrival of this weekend – I was zonked!
As already mentioned, I had an appointment at Hair to Ware booked for today. Although a struggle to get out of bed to make my 10am appointment, it was most certainly worth it! My longer wig had been ordered in two different colours of blonde for me to try on and one was slightly darker and a lot more natural looking. I fell in love with it. So I am pleased to introduce you to, Britney…
I must take this moment to reiterate quite how lovely the staff are here. Katie who looked after me today went above and beyond to make me feel comfortable, and to ensure I did not leave the salon until I was 100% happy with my wig. As I had continued to lose more and more hair this week, I decided to get rid of what was left so my wig could sit better, and, most importantly, so I could do my bit to say “thank you” to the Little Princess Trust. I was still able, thanks to my thick locks, to donate two plaits to the charity, which I hope will help make a wig for a child also suffering with hair loss due to cancer. All I wish is that I had the “balls” to do it sooner, so that more of my hair could have been donated. I think I was clinging on to the hope that it may not happen to me… and I guess that is only natural, but certainly with hindsight, I would have donated it all at the beginning. So now I find myself rocking the most bizarre hairstyle. I will let you come to your own decisions, but I have been told I look like a Jewish boy, or, according to Theo, Alan Shearer?! The latter had me in stitches!!! *High five Theo!!*
The rest of my day and Sunday were simply RELAX CENTRAL! It was heavenly – and to let you in to a little secret…I didn’t even change out of my pyjamas on Sunday!
I went to bed around 11ish and then I was rudely awoken around midnight – I was in agony. I had a really bizarre pain in my ribs/diaphragm that made me feel like I couldn’t breathe. It was really scary! I tried my best to keep calm and eventually it wore off for about 5 minutes, before it kicked in again. I was eventually able to drift off back to sleep. I woke up and had to check with Andy if it had all been a nightmare; he confirmed it was real! I was hoping it was something completely unrelated, but knew I would have to mention it to the doctor on Wednesday.
Monday 1st June
Pinch and a punch and all of that…blimey JUNE?! Can’t believe Trev has taken up SO much of my life already, 5 months you have had all of the attention mate – give it a rest! 2 more weeks to go!
Treatment was prompt and we were home really quickly (I have decided to go by car now as I am feeling more weak and queasy). So I make sure I always travel prepared; sick bowls at the ready…
After having dinner, I sat watching tele allowing my food to go down before bed. I was feeling really sick 😦 and so fed up! Unfortunately, not longer after, I was sick; and I just cried! Boooooo!!
Tuesday 2nd June
After a good sleep, I was ready for another day. I then received a phone call from the radiotherapy department informing me that there were severe delays due to machine servicing and one not in action. It was great that I was made aware of this before we were left and I was told if I came in around 5pm, all should be back to normal; which it was.
Due to the late finish, and the imminent earlier start tomorrow, Dad and I stayed with my Aunty in Putney tonight. It was lovely to see her and catch up with my cousins. My food stayed down and I had another good night sleep. The queasiness, however, continued.
Wednesday 3rd June
Doctor day. Unfortunately, both this appointment and my treatment time were delayed today. To be honest, I think I have been very fortunate that there haven’t been too many disturbances/alterations to my treatments throughout the weeks of coming to the radiotherapy department. We were therefore in hospital for slightly longer than normal, and as the summer is kicking in, temperatures were quite high in London and as a consequence, the waiting room was really muggy and I felt ROUGH!
I raised attention in my appointment, that my nausea had been a lot worse, and my anti sickness tablets were altered slightly, and my enemy, steroids, made an unwelcome appearance. As an accumulative treatment, the radiotherapy levels have obviously now built up inside of me; as a result, radiotherapy has caused my brain to swell, and thus sickness follows. Steroids are a way to reduce this swelling and my queasiness. As I said to my Mum when I told her, “I would rather pile weight on again, than constantly feel sick!”. I was warned at the beginning that this may be the case, so I am preparing myself to balloon again! 😦 .
After my check up appointment, and with everything seemingly fine (I did mention my breathing troubles the other night, but this did not raise any concerns), it was treatment time, and then the best part; home time!
Thursday 4th June
Continuing to travel by car, as now I can’t really face public transport, today was quite a simple one. And, an added bonus being that Andy was waiting for me when we got home 😀 !
The steroids had kicked in this day and given me side effects I had not previously experienced. In the past, when on a stronger/higher dosage of steroids, I was recovering from operations, and therefore extremely sleepy. I had been warned that steroids can cause issues with sleeping patterns and make it hard to sleep. I woke up at ridiculous o’clock and really struggled to get back to sleep…I felt exhausted, but could not settle. Oh well!
Friday 5th June
Andy drove me in today; treatment completed. Fortunately, I was not feeling too sick. This was fortunate because today was slightly different to all my normal monotonous days. We had another ball to attend!
This time round it was The Brain Tumour Research Campaign’s Annual Amber Ball, which Wendy had kindly invited us both to. I was worried in the build up to the day, that I just simply would not be well enough to go, but all was looking good! Dress and tux on, (and my new wig Britney!) we headed to the exclusive Hurlingham Club, London. I treated myself to a glass of champagne and wine and enjoyed the most delicious meal – the most I had eaten in a fair while! It was so fantastic to see how many were there to support this cause, this campaign!
What was even more special for me, was to see my super surgeon Kevin O’Neill! The last time I saw him, I was coming around from my surgery back in March (since then I have been under his fantastic oncology team). He came over gave me a hug, and began by apologising for not being able to attend the Cinderella Charity Ball, and enquiring how I was etc. It was fab to see him and I had to pester him and Wendy for a photo to share with you all. Most amusingly, I thanked him for leaving me with such a neat and tidy scar, to which he replied that he was happy to see all my hair had grown back and how entirely invisible it now was!; I laughed in his face and asked if he was kidding?! He seemed genuinely baffled. I had to literally lift Britney off my head and say I was bald and lost all my hair! Britney had Kevin’s seal of approval, and I was sold! 😀
It was nice for Andy to finally meet Kevin as well. Andy shook his hand and thanked him for “giving me a chance”; Kevin replied saying he had not finished with Trev yet, “we will get rid of him somehow!” LEGEND.
It was a fantastic evening, at a lovely venue, surrounded by incredible people. I thank Wendy and all the Campaign’s supporters etc. The crazy amount of money made this night, may just help towards finding a cure to save my life!
Before leaving for home, we all went on a wonderful wander in the sunshine around Richmond park (sneaking in a cheeky bacon buttie en route!). I was then able to chill out for the rest of Saturday and the entirety of today! Head covered, and sun cream on – the sun was shining brightly today and so we made the most of the sunshine today. I also made rice krispie and cornflake chocolate cakes! Hehe! Top weekend if you ask me!
Bloody steroids – My Sunday nights sleep was ruined…I woke up shattered at 5.45am and could not get back to sleep! I lay there over thinking what felt like everything, and (here is where I get mad at myself), I blubbed! Like a big baby tears just streamed down my face. I was thinking about how, even when these 7 weeks of treatment are over, and I am more “free”, nothing really will have changed. I will always have Trev! I will never be given the “all clear”. And whilst I may not have to be making daily visits to hospital, my life will still be rudely obstructed by this idiot tumour inside my head! I needed sleep, I was emotionally unstable; but I had Andy by my side to stroke my bald head (there are parts that are ridiculously soft and I find it very therapeutic!!) and calm me down. GET A GRIP ANNA!!!!
WEEK SEVEN – FINAL WEEK!!!!!
Monday 8th June
Despite the early morning breakdown, today was the last time I would have the radiotherapy Monday morning feeling!!!!
My queasiness had kicked in rather early and was present ALL day and night, but fortunately treatment was all on time today. I even did some cleaning when I got home!!! (My Mum is arriving again in the morning, so I felt obliged to really! 😛 ). My appetite had really gone today and my stomach was not having any of it. I am just about to try and get settled in bed and hope for a more peaceful, drama free sleep….watch this space.
So truth of the matter is, we ended up getting into bed and then watched a good hour and a half of Rugrats and Recess cartoons!! I am too cool!
Tuesday 9th June
Mum arrived this morning 😀 😀 😀 wooooo! After lots of mum cuddles and catching up, it was time to head in to hospital. And again, I found myself throwing a hissy fit! I just did not want to goooo 😦 .
The traffic was pants, and when we finally arrived, I have never seen the waiting area so busy! So many new faces, no empty seats, and delay warning signs up; hmmmmph!
Fortunately, it was much less of a wait than expected! Queasiness has been quite bad today and I am just in a foul mood…I reckon Mum probably wishes she didn’t venture down the A1 today!
Tonight we sat down all together to watch tv – a programme about guide dogs to be precise. I had to tell you this to highlight my complete and utter emotional instability at the moment… I was in absolute floods of tears, literally hysterically crying! What bloody amazing dogs though! The one that got me was a guide dog who had to be put down to avoid further suffering from cancer – I tell myself off for crying over myself having cancer and yet I sobbed my heart out about a dog. This sums me up good and proper!
Wednesday 10th June
I felt like a school girl today. I felt as though it was my last day of lessons before the summer holidays, Thursday and Friday being the days where I am allowed to bring in videos/dvds to watch!
It was my last doctor day today. I was armed with a list of questions to tick of my list; I am not due to come back to hospital after Friday, until July 14th. The make or break question on my list was, “am I allowed to fly?”I knew after my operations that I was not able to fly for a significant period of time due to swelling, inflammation in my brain etc. I was also more than aware that they way radiotherapy works, it too, causes swelling. I am, however, desperate to jet away for a break. Nothing too ridiculous or far away and somewhere where I can chill the hell out and not have to make a trip to hospital every day! Fortunately, I was given the nod! I was given advice as to what they would recommend in terms of where to book, how to act sensibly with the sunshine etc. BUT I AM ALLOWED TO FLYYYYYYY! YIPPEEEEEEEEE!!!!
I stocked up on my medication… there is a lot! We discussed the next stages, in terms of coming back for my scan on July 14th; this scan will enable the team to see what Trev has been up to. I have been warned that they would not be expecting to see any reduction in size. Trev staying the same would be more than good news. I did also get warned that even 4/5weeks down the line, there may still be swelling as a result of the radiotherapy treatment, consequently I should not be alarmed if the scans indicate Trev is enlarged. The 14th will also be the day I start on my next course of chemotherapy. But hey….I will give myself time off from even thinking about that yet!
Thursday 11th June
Sleeping patterns all over the shop, queasiness levels blehhhhh ….it was lovely waking up this morning being able to say this was my penultimate treatment! Last blood tests done for now, treatment completed, I was able to enjoy a bit a sunshine in the garden when I got home. 🙂 .
I am sat here typing this part of my treatment diary tonight and I feel sick with nerves and excitement I think..I cannot believe tomorrow marks the end of Round 2 against Trev!
Hello, me again! I hope everyone had a wonderful Easter and you have all managed to come out of chocolate comas…I am still struggling to be honest!!! This is not going to be a very long or detailed post today…I just wanted to keep you all “Inside My Head”, as such.
This past couple of weeks or so, I have found it very difficult to control my emotions, and I have been getting quite upset about everything, all hit me like a tonne of bricks. I wanted to tell you all about this, as although I may come across in posts as very tough and strong, EVERYONE has their weak moments. I have more than reassured myself that this is fine, and even probably good for me, and it certainly does not make me any less strong! It is however, quite bizarre, because I find myself getting annoyed at myself after I have cried- It has not made anything better, it gives me even more of a headache, I feel like an idiot and I look like CRAP after I cry as my skin goes all weird!
I am probably not wrong in thinking that there are others out there who have been given the same prognosis as me, who do cry every day, and have not chosen to tackle the news the way I have in general. I tell you what though, the crying thing is tiring and very draining! And I am lucky that overall, I don’t really get too upset about it all…I don’t think I could cope!
I was having a quite in depth conversation with my Mum the other day, and I found myself saying the most bizarre thing: “I have never been happier”. Although I have obviously been given the worst news I could have ever imagined, I really have not ever been so content with my life. I feel like I genuinely have a purpose in life now and I am so determined to make a difference. Three months in to my journey, I have spoken to/met some incredible people, as detailed in my last post, I feel I have turned into a much better person and I certainly have a different outlook on life! My purpose is to use my devastating news to great effect and to help beat brain cancer!
This week in particular has been very busy! I am all about the Cinderella Ball hype at the moment! (Saturday May 2nd , Wynyard Hall ).
Aside from the fact that I am freaking out as I have put on too much weight and my ball dress looks horrific (I HATE YOU STEROIDS), I have desperately been trying to get all the loose ends tied up before my radiotherapy and chemotherapy starts. I am so lucky to have an amazing network of family, friends, adopted family members, and complete strangers who have been incredible in helping me with this grand task….and I tell you what, it’s shaping up to be a pretty good night if you ask me! The generosity of others has, is, and will continue to absolutely astound me! I can only apologise if I have not been able to/do not have the means to contact you all individually to thank you; but sincerely, from the bottom of my heart: THANK YOU SO MUCH!!!!! Without your help, I would not be in the position to fundraise for this worthy cause.
Now to fill you in on my long day in hospital yesterday…I went to meet with the oncology team at Charing Cross to sign all the paperwork to confirm my agreement to having radiotherapy and chemotherapy, to have my radiotherapy mask fitted, and to have a planning MRI scan for the treatment. Albeit an extremely long and tiring day of waiting around, all was completed, and I am ready to rock ‘n’ roll! The initial meeting filled me in on all the short and long term effects of the treatment; this was a lot to take in and, although I know this is bad to admit, I almost found myself sat there like a nodding dog at times. There are SO many potential side effects that they are obliged to have to let you know about, but really, I need to have the treatment to fight Trev; and that is what will be done, regardless of side effects. I was slightly rude yesterday though, only in a jovial way, I PROMISE; the registrar was explaining long term side effects that would potentially affect me in later life; he was discussing a particular knock on effect for 15-20 years time, and I just burst out and said, “ well, to be honest, I have been told on average I only have three years left to live, so, if I am alive in twenty years time, I will be over the moon and won’t worry too much about these side effects!!!”.
The most difficult part of the day for me was when the subject of fertility arose. When I was first given my prognosis, this was one of the first things that broke my heart, it was never spoken about by doctors, but it was one of the main thoughts that came to the front of my mind; the fact that, potentially with such a short time to live, I wouldn’t be able to have my own family – get married, have children etc. But, if you have been reading my blog from the beginning, I have made it very clear that I am more than determined to MAKE THIS HAPPEN! I became an aunty to Amber when I was only 7 years old and from the first time I held her, I loved looking after children. As detailed previously, I have 5 niece/nephews and have therefore always grown up having babies/children around me. I have always known I have wanted to be a Mum; so this is quite a raw subject for me I am afraid. Yesterday it was explained to me that my chemotherapy drug, Temozolomide, may cause infertility, or make it hard to conceive. I find myself in such a weird position; obviously, right now, I am in no position to consider having a baby! Even before my prognosis, I had always said I probably wouldn’t plan to have children until I am about 30 years old and I am happy with my career etc. and that feeling probably has not changed as such; if I can defy my prognosis, I will still want to be successful, and bring children into the world when I feel the time is right. The discussion yesterday however was hinting towards the fact of, well even if I do live longer than expected, this decision may well then be totally out of my hands. I am completely aware that, unfortunately, through many differing scenarios, many women face the same problem today, and I know I won’t be alone in this worry/upset…but my god, I want to be a Mum SO BAD, and my heart reaches out to those who are in the process of trying to figure out how they are going to do that. Anyway….sorry, got a bit deep there and I cannot waste my time dwelling on something out of my control!
Now on to the funny bit of the day and where you can laugh at my photos; the radiotherapy mask fitting! First of all, I was so relieved to come into contact with such lovely ladies working in the radiotherapy department at Charing Cross yesterday, they were genuinely SO lovely and this bodes well for the 6.5 weeks of treatment I will be having there! The process of having the mask fitted itself really was not too bad at all. Felt slightly odd, but nothing I could not handle and nothing that made me feel uncomfortable. After explaining to the lovely ladies that I write this blog, my Dad became chief photographer and took these delightful snaps just for your entertainment:
Having sent them to my Mum, she replied saying that I looked like Sunny, Will Smiths robot in the film I Robot; brilliant Mother (yet again 😛 )! The mask was moulded to my face, markers were drawn on, and the mask was left on my face to set into place. All in all, I would say it only felt like I was in the room for a maximum of 20 minutes.
As mentioned, I also had a planning MRI scan yesterday; prime nap time for me! Over the next couple of weeks, my treatment will be planned. Aligning lots of different images, the team will decide how and where to target the radiotherapy so that the most effective course of treatment is given; I still find it all so intriguing!
I have been given a provisional date of Monday 27th April for commencing my treatment. They have been really accommodating in terms of timings, so provisionally my treatment will be in the afternoons, allowing plenty of time to travel from Hertfordshire each day without it all being too hectic, and in case I get fed up of the Southern life, this will allow me to return to Northern land for the weekends very easily if I am feeling up to it…travel up on the Friday after treatment and return on the Monday morning, giving me 2 whole days travel free!
Well, I actually feel like I have blabbered on more than I was planning too, so I think I will wrap it up!
Next couple of weeks is operation FIT IN MY BALL DRESS, make the most of the time now I am feeling relatively “fine”, organise the ball as much as I can, and get ready to start giving Trev’s butt a good kicking as of the 27th!
I thank you all as ever for your continued support, I really could not do it without you all!
All my love,
So… it all went to plan and my recovery has been fabulous!!! Yippeeeeee!!!
I have already posted on the Facebook group page about this amazing new equipment, but for those who don’t follow the Inside My Head Facebook group….this may be a fascinating read!
This probe trial at Imperial is partially funded by Brain Tumour Research Campaign, so it certainly excites me to think with the money we are raising/can raise together, what may come next!
The doctors were really happy with the resection and how my operation went and are more than happy with my speedy recovery! I am hoping that this is a sign of things to come and that my body is more than ready for the fight ahead!
Being completely honest, which I always will be when writing this blog….I am more nervous about this next stage; radiotherapy and chemotherapy! I know, unfortunately SO many people have to go through this kind of treatment, but I have been fortunate enough so far, that other than my seizures and recovering from my 2 operations, I have not really “felt ill” or “looked ill”, yes I have been tired every now again and I have listened to my body telling me this and it has faded reasonably quickly. However, I have been warned that the treatment will more than likely change this, although everyone is an individual, and will therefore react differently. I have been told that the radiotherapy will cause hair loss and tiredness, and the oral chemotherapy tablets may cause sickness. The treatment will be 6 and a half weeks long, Mon-Fri down in London.
As you can probably tell from my photos, my hair is important to me…..I have LOTS of it!! Even when I first found out about my prognosis and the shock of finding out it was terminal…..to me the hair loss was one of my main worries! I know this is pretty shallow in the grand scheme of things, and really should not be at the forefront of my mind…..but as I said, I am a very honest person and the thought of being bald most certainly was right there at the front waving at me! One of the BEST things to have happened to me since writing this blog has been getting to know people who are unfortunately on a similar journey to myself. It is at this point therefore that I simply HAVE to give a special mention to my beautiful, new friend, Charlotte. We are the same age, and have the same prognosis. Charlotte has had her treatment and my lord, she has given me a whole new outlook on losing my hair! To say she rocks a wig is a complete understatement! She looks HOT!!!! Even just receiving a message of support from Charlotte and seeing her photos has made me so much more positive about this next stage for me; and for that, Charlotte, I thank you!!! Getting to know others, just like Charlotte, and the very many other amazingly kind and strong people who have reached out to me since I started sharing my journey, has given me even MORE determination to make a difference!
I have decided I am going to take each radiotherapy session, each day, each week, as it comes. I do not want to rush in and shave all my hair off irrationally. If I lose a lot and having naturally thick hair means that my wig won’t sit as well unless I do shave it all off; then so be it! It’s another test of character for me and I can have the fun of experimenting with different colours/styles that I would never have had the balls to do normally!!! On the plus side for me, my sister is a pretty amazing hairdresser, so I am sure she will sort me out a treat! (Thanks sis!!! 😛 )
As for chemotherapy, I have been told that I may feel sick. I think I am in the frame of mind of preparing myself for the worst, whilst hoping for the best! Potentially for these 6.5 weeks I could be absolutely wiped out, shattered, sick, not want to see or even have the energy to see anyone/do anything. Or I could be okay during the beginning until the levels get higher towards the end of the treatment; or the fighting spirit in me so far may not find it as difficult as they are warning…..nobody knows until they do it!
Looking at it from a logistical angle, it is an emotional time. My treatment is in London; the majority of my family live in County Durham. I will miss them ALL an incredible amount and I am struggling to get my head around the fact that I won’t have my niece, Amber and her ridiculous one liners to keep me smiling day after day 😛 (get your snapchats at the ready, Amb!)! I am very fortunate in the fact that, everyone wants what is best for me and completely respects my decision, I feel a strong connection with the team at Charing Cross and their innovation and passion inspires me and I do not want to be out of their bubble of positivity, as I still truly believe my frame of mind, added to their passion, is helping me fight Trev! In the grand scheme of things, 6.5 weeks is not that long and I know I will have plenty of visitors. Also on my side is the fact that we have a family base in Hertfordshire; plan being, that this becomes my home for this period of time and, dependant on health, we get the train or we travel by car each day into London. I have the weekends available; so putting my ‘positive head’ on, I am hoping at least at the beginning, I can hop on a train back up to the North East. For once, having my family spread all over the country is a huge benefit!!! I will also be closer to my work colleagues in Portsmouth and will hopefully be able to use it as a time to reunite with those amazing ladies, again, health permitting.
I am trying my hardest not to predict the future at the moment, as there is too much uncertainty surrounding how I will feel, what I will want to do etc. so I need to take each day as it comes and go from there.
I am currently awaiting an appointment from the oncology team at Charing Cross to go and have my mask fitted ready to start my radiotherapy treatment.
If you are like me and had no clue what this meant, please view the Cancer Research UK information video below:
I have been told that the mask takes about 2-3 weeks to be made. I have just sat here and watched the video above with my mum….her first comment; “Wow, well there will be a big bit sticking up in the mask for your nose!!”, DELIGHTFUL MOTHER!!! 😛. So my short term plan…make sure I am listening to my body and resting up when I need to, as my body will still be recovering from surgery, but most importantly, make the most of the next few weeks while I am feeling reasonably fine and dandy!