Young Persons Blog – Hannah

Hannah

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Cervical cancer – glassy cell

hannah

September is Gynaecological Cancer Awareness month so I wanted to introduce you to Hannah. Here is the first blog she wrote about her diagnosis with a rare form of cervical cancer.

“6th December 2015- 15th January 2017

I made notes of my feelings and appointments and here is the Catch up on my journey so far:

6th December – after biopsy was diagnosed with cervical cancer! 

Upset but little was I to know quite the full length and how scary and shit this really felt for few more days as it just didn’t sink in. 

After eventually being seen by doctor and many appointments all bringing us to this biopsy, I had already worked out what I could have and that I  may have early stage of cancer but I really did think i got it early enough that I would have hysterectomy and then be fine after recovery from that 

But a 5cm tumor and the area it affects puts me at stage 2b and means a hysterectomy isn’t any option at this stage: 

7th -8th telling family and your close friends – feeling more real- flowers / cards / appointment letters coming in …

9th – martyn my rock who has held it together for the last 3 days , crumbled and had moment in bathroom, didn’t want him to be sorry as he has been amazing.. feels human.. wanted someone to cry with after everyone being so clinical and factual. When actually it is shit awful news and let’s cry because I could die!!

 10th December – feeling very very low whilst working through the xmas orders, can’t wait to get work out the way for a week or 2 to get it in a better place in my mind.

Had like a dull tummy pain for hours then found another clot (first clot since diagnosed)

Can’t relate it to anything like you do with general day to day problems .

Trying to think “positive” when there seems so little to hold on to.

Feeling alone.

Running club Xmas dinner party. Only going to face the world. Didn’t start off great. Freaked out when walked into the room where everyone was going to be. It’s hard to explain but just facing life was hard. This was all still very Fresh and new to me, Held it togther and was able to talk a about it later in the night. Stayed till mid night actually!! felt bit bad about Mum and Dad baby sitting so late, after saying  unlikely to stay late 😬

Julia making me laugh as always. Didn’t expect to laugh again ( although trust me it was not the same )

The world looks such a different place now, evil , scary, unpredictable

Don’t want to watch the news again as just can’t cope with actually how much crap there is going on in this country and this world.

11th December .. so that brings us to now Sunday 11th December, day after xmas party, had a Very unsettled night sleep and Eden came in saying there’s a monster. Cuddled up with me and it was actually really sweet and we fell asleep together..woke up with his feet pushing me off bed!😩

Soooooooo blessed to have Daisy and Eden when I did, absolutely over the idea of wanting more children and I know naturally that’s not going to happen now and of course all I want to know is that I’m going to survive this and be there for them.

The future looks uncertain right now and the doctors have scans and treatment plans to organise.

I am an appreciative person and don’t take things for granted. So from that point of view. I have no regrets and have had a great life so far. I’m just not ready to leave anytime soon, Daisy and Eden  are only 3 and 5 and I want to see them grow into adults and enjoy all these great years we should have ahead.

Desperate to have scan and get results if the cancer has spread anywhere else. As it was only a pelvic MRI I had previously few weeks before my biopsy.

I know it’s at least stage 2b which isn’t great it’s got to this stage but could be worse.

I’ll either survive or die because of it.

11.12.17

Afternoon- Not coping, can’t stop the tears.

Eden just asked why is my face like that , I turned and he said “why are you turning away” 😢 I’m trying so hard not to cry or loose it in front of them but sometimes they bring the tears on because the fear I have of loosing them.

12.12 PET-ct scan day!

I’m not scared of the treatment or being in pain. I’m purely scared I’m going to die and leave my family.

Just keep going over and over in my head. My children, my husband , my family and my friends are all being so strong and I am so thankful for there help.. But I just feel so lonely. I can not get it off my mind. I feel now , today, that I have fallen to a dark place of depression. I want to think positive but I just can’t. I’m trying sooo hard to think of happy things but I’m just not seeing it.

I just want the treatment to start and to know I’ve beat it. Want to wake up in 6 months time and this living nightmare all be over.

Drove to Canterbury to find out PET/Ct scan cancelled as an old man had pissed himself after having the radioactive injection so radioactive stuff everywhere meant my scan was cancelled, so anoyed, I’m desperate to know exactly what where dealing with, it’s anywhere else in my body😡😡

13.12 feeling massively bless to have support from my close friends and family . ..But feel like my life is on hold, I’ve never been depressed before and through no fault of my own, I’ve now fallen into this really dark place.

14.12 could this get much worse 😩😭

Had appointment with consultant who did my biopsy , found out I really am special and have an extremely rare form of cancer called glassy cell cervical cancer. Sitting in front of a cancer specialist and being told he or the other specialist I am due to meet next week, have never seen this. I do not feel special, I feel even more scared and think I’m going to I’m going to die. He said they will be talking to the top doctors at marsden hospital  in London  but that I can forget everything I’ve been told so far about possibly radiotherapy and chemotherapy as that won’t work on this aggressive cancer. I don’t know how to cope with this feeling. Screaming in the car whilst Martyn drives us safety home. The hardest day of my life by far!! 

15.12

Ct scan done and out the way.

And the PET/ct scan rebooked for tomorrow morning.

Has the chance to watch Daisy at school in Christmas play, Absolutely feel so lucky to watch my little girl in her school play (dress rehearsal preview as I couldn’t face going to the play with all the parents next week) she was red robin number 1 , it’s was so cute! She was so confident on that stage. She said her words loud and clear  and I couldn’t be prouder!! She has only been at school a couple of months and has grown into such a confident girl. I felt like the proudest mummy in the world and could help but smile 💜💜

 This afternoon Edens been extra cute and cuddly (think he has picked up on something being wrong) and I’ve enjoyed spending the evening with them both.

Eden and I had lots and lots of kisses when he cheekily got back out of bed to give me his empty cup. Special moments like these I treasure.💜

16.12 back from PET scan. I had to sit in the lonely small white room for an hour while the radioactive stuff goes through my body. I Felt most lonely. Was radioactive for 6-8 hours so couldn’t go near children so missed out on another Christmas school craft thing they where doing and had to hide in the bedroom till later that  evening. 

I wish there was something they could give me, to not feel this sad, the thought of leaving my little ones and Martyn terrifys me. I love them all soooo sooooo sooooo much!!!!! 💜
Positives – I have no regrets!!! everything I’ve done in my life has made me who I am today. I know part of me will live through the children if I’m here or not, there old enough I can already see there just so lovely as can be 💜

20.12- so had a much better week than I could of expect! Finishing off as much work as I could.

What a lovely evening,  Mud masks with Martyn, Shaun (brother)  and my lovely mum last night was so much fun. I think I almost took my mind off it for the first time.

21.12  start of accepting-went out for dinner with martyn and Eden when Daisy was at school(.which is a massive thing as facing people feels so hard as my life is now so different. I just feel slightly better in my mind that if someone I didn’t know was to ask “excited for christmas” that I could smile and just say yes. Without breaking down like I think I would of done last week. )

Oncologist appointment tomorrow where I will find out (fingers crossed) full body scan results and treatment plan.

Part or me is dreading tomorrow and part of me just got everything crossed in hope they will tell me something like ‘you will defiantly be cured’ . So that I can enjoy Christmas properly with my family and have everyone round Boxing Day as planned.

I don’t feel like any of my friends or close family (as thankfully they haven’t had to go through it) can really understand the strange place that this disease has put my mind in. I’ve not been here before.

I think if this wasnt happening to me I could only begin to understand how bad it must feel, if I was watching someone else go through it. The truth is it’s probably 1000x worse than you could think, I still waiting passing the days as I don’t know yet what they going to do and it’s so rare they’re prob isn’t much facts or evidence to go on, so my future looks uncertain and I hate this.  This is defiantly the most scariest thing I’ve ever had to face.
22.12 made it through to this date Thursday 22nd December, been holding onto this date where I am going to find out a lot more and meet the oncologist Dr nathen for the first time.

Well that went better than I could expect, there is no visible cancer anywhere else. A big positive! And a girl in Maidstone 6 years ago had this type of cancer and dr nathen has been speaking to the doctor who treated her and we are going with exactly the same treatment  that she Had done which turns out to be chemo and radiotherapy (how normal cervical cancer at my stage is quite often treated) as she is now “cured” after 5 years. He said he thinks 70-80% chance this is going to work for me too! Feeling massively more positive after this positive meeting and step forward! They have a plan!
27.12 had a lovely Christmas just us 4💜

Boxing Day had all the family round which was also a lovely day❤️

03.01 massively changed my diet to get ready for chemo and radio soon and needed lifestyle  change. Eating very clean and anti cancer / cancer fighting / anti oxidant type foods.

09.01. Martyn’s cousin offered to do me reiki each week which I started today, I used to think this was a type of massage it’s completely not but made me feel relaxed and I did sleep well after it
12.01 Had a meeting at the chemo ward today giving me chance to see the ward ahead of Monday  and have my bloods done and a talk with one of the nurses.  Had to watch a DVD all about the side effects of some chemo therapy which I found left mere terrified than I was. 

14.01 trained in TRE! Oh my goodness ! It’s like nothing I can explain. But it’s a natural tremor process we all have within us and it was amazing! May even help with some of my back pain. Feeling positive 🌞
15.01. Eek day before I start chemo and radiotherapy!! Put on facebook about my TRE experience and everyone seems to remember my treatment starts tomorrow and wish me luck and saying how brave I am being? The support in amazing and is really helping. I personally don’t feel like I’m being brave tho, I didn’t ask for this and have been to hell and back to “accept” this tumor this horrible disease, I don’t blame people because there isn’t any right or wrong thing you can say that’s actually going to change what I’ve got but I do think some people just see my posts and don’t think of what I’ve gone through in order to be at this positive state of mind. I realised  there was a great chance of this being cancer mid to late November and after finding out on the 6th December I didn’t make this public until Xmas eve.  I was in such a dark horrible place I knew I was not ready to tell the world (facebook) and I am so pleased I waited. Had I of done, my posts would have been very negative and depressing nature.

Weighed my self today and I’ve lost 6lb this week! All because my lifestyle change💦🥗🍏🥒🥕🥝🥗💦

Overall really positive considering I start treatment tomorrow!

..But bit Nervous for the possible side effects for the menapause to start soon!!😢”

 

Hannah is one of the young people that YouCan support. To read more of her blog you can find it here:

https://hannahbinghamsite.wordpress.com/blog/ 

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Sue’s Blogging About… Blood Cancer Awareness Month

Blood Cancer Awareness pic

As blood cancer awareness month comes to a close, I’ve learnt a lot. Which is the point isn’t it, raising awareness. So I thought I’d share a little here…

Blood cancers are cancers of the blood, bone marrow or lymph nodes that affect normal blood cell production or function. Leukaemia, lymphoma and myeloma are the three main types of blood cancer and there are different subgroups of each one. There are also more obscure blood cancers. All these cancers can be quite difficult to diagnose, particularly in young people, when symptoms are often misdiagnosed as partying too much at university or just general changes in your body as you move into adulthood.

As mentioned in the above pictorial, there are a few signs to look out for. These include:

  • Bruising easily
  • Unexplained weight loss
  • Repeated infections
  • Continued fatigue
  • Fever
  • Unexplained bleeding

Leukaemiacare say “You should seek prompt medical care if you are experiencing unexpected weight loss, persistent and frequent infections, night sweats, fatigue, bone pain, or enlarged lymph nodes.

But it is important to remember that many of the symptoms can occur in other, much more common and less serious illnesses as well. Whilst these symptoms do not always indicate a blood cancer, as with most cancers, early diagnosis is fundamental for better treatment outcomes so it’s always best to get your symptoms checked if you’re worried.”

YouCan supports young adults who have been impacted by blood cancer. So I’d like to introduce you to Tom and Harry, two of these young adults. Both of their stories are on the YouCan website and you can find the links to them below.

tom blood cancer blog

TOM

AGE 24

STAGE 2B HODGKIN’S LYMPHOMA

‘YouCan have provided me with great support in my post-treatment recovery, providing complementary therapies and other activities to help me come to terms with my new life. This kind of support may seem so simple, but to me it was absolutely invaluable.’

 YouCan read the rest of Tom’s story here:

http://www.you-can.org.uk/toms-story/

harry blood cancer post

HARRY

AGE 21

STAGE 4B HODGKIN’S LYMPHOMA

‘If it wasn’t for YouCan and their amazing staff I really don’t know where I would be right now if I’m honest. This post just goes to show that charities like YouCan cancer support are invaluable for people like me during remission!’

YouCan read the rest of Harry’s story here:

http://www.you-can.org.uk/harrys-story/

 

If your life is impacted by blood cancer you can also find support in the below areas:

Bloodwise campaigns to improve the lives of everyone affected by blood cancer. They raise money primarily for research but they are also creating a network of support via their website, Blood Cancer Connect and their Ambassadors programme.

https://bloodwise.org.uk/

 

Leukaemiacare have a plethora of information on their website. They also have a CARE Line, which is available 24/7 on 08088 010 444 for if you need to talk to someone impartial about your blood cancer.

http://www.leukaemiacare.org.uk/

 

The Lymphoma Association offers easy access to support on their website by means of forums, personal stories, live chat, the Lymphoma Matters Magazine and various events and conferences all over the country. They also have a Freephone telephone number available Mon-Fri, 9am – 5pm which is 0808 808 5555.

https://www.lymphomas.org.uk/

Sue’s blogging about… Freddie’s Friends Support Group

freddies friends headerFreddie’s Friends is the support group run by YouCan and the staff from Charles Dickens Ward in Maidstone Hospital.

Freddie’s Friends was started by Hayley Martin, a young mum receiving palliative treatment for colon cancer, in January 2015. Her little boy is called Freddie and the group is named after him.

Hayley said “I started this support group so that other people like me who have been diagnosed with cancer have somewhere to come when they want to talk to other people in a similar situation. It is also really hard for our family and friends seeing loved ones going through cancer treatment. Freddie’s Friends can provide a comforting, relaxed environment to be able to speak openly about any worries, share tips, experiences and to generally feel that you are not alone.”

Unfortunately, I never had the pleasure of meeting Hayley but her group is still going strong all these years later.

I started going to Freddie’s Friends in January 2017. I had just had my first chemo treatment earlier in the month and one of the nurses mentioned it to me. Straight off the bat, I knew this was something I wanted to be involved in because everyone was so welcoming and helpful. The monthly meetings at held at Kits Coty, Aylesford, in the function room, so I knew anything I wanted to talk about was being said in a safe place. Also, they provide free soft drinks and cheesy chips – bonus!

Since then I’ve been to many of the Freddie’s Friends meet ups, treatment permitting. We’ve done reiki, yoga, had talks from a nutritionist, had a meal in town, an introduction to boot camp and a look good feel better workshop. So as you can see, it’s very varied! But there is always time to meet other young people in a similar situation, and this is invaluable. Group sizes range from 6, to 16, to 26, so there is plenty of room for all! Feel free to bring a family member or friend too, the group is to support them too.

And don’t just take my word for it! Here are some testimonials from people who attend Freddie’s Friends:

Kerry Ann, 32: Breast Cancer

“I cannot express how much Freddie’s Friends have made a difference to me going through my treatment for breast cancer. This support group has helped me feel like I’m not alone. I will continue to go after my treatment has finished.”

 

Tom, 23: Hodgkin’s Lymphoma

“Since the first meeting we had for Freddie’s Friends it has been such a personal boost to meet such friendly, positive and supportive people in a similar situation to mine. Being able to relate to each other’s experiences in invaluable in a way I never fully expected.”

 

Caroline, 24: Brain Tumour

“It’s lovely to find a support group that has enabled me to build friendships in my local area. It’s a very welcoming group which has helped with my confidence and social skills.”

 

Katie, 23: Caroline’s Friend

“I go to Freddie’s Friends support group as a support for my friend. It is so great to finally find a group which helps people who are at different stages in their cancer and also welcomes family and friends too.”

 

Laura, 32: Bowel Cancer

“Freddie’s Friends is really important to me as it provides me with help and support without which I would not have made it through my treatment and been able to return to work. The support group is amazing as it has allowed me to talk about and accept what I have been through when I needed to do this however it has also helped me escape from it all as well by organising events that have totally taken my mind off of everything and allowed me to have fun which is something that I never imagined could happen whilst going through treatment. I would have been really lost without the support of the Freddie’s Friends group and the friends that I have made from this group.”

 

If you would like to come along, Freddie’s Friends is held every third Wednesday of the month at Kits Coty, Aylesford, ME20 7EZ from 7pm – 9pm.

Please contact YouCan and come along!  

Tel: 01732 844874  Email: hello@youcan.org.uk

#freddiesfriends #youcan #youcansupport #supportgroup #kitscoty

Sue’s blogging about… a year on from diagnosis

The 19th September 2016. A now notorious date in my calendar. A year on I’ve had a lot of time to reflect a lot of those first few days after diagnosis. Here are some of my musings…

 

I’d just started a new job as a primary school teacher and it came like a bolt out of the blue. Literally – a shooting pain in my chest that woke me one 3am morning and I found a lump. Thinking I must be mistaken – tired, groggy, possibly hallucinating – I didn’t think of it again until morning. Luckily my fiancé persuaded me to get it checked out – as a teacher we are always coming down with coughs and colds… me? Go see a doctor?!

Below pic: I had found the lump and was waiting on a referral from my GP.

pre diagnosis.png

My GP referred me, telling me she didn’t think for one second it would be anything sinister but as a precaution I was sent to the Peggy Wood Clinic at Maidstone Hospital. On arrival, I was again told that they thought at worst it would be a cyst – you’re too young, no family history, etc etc. but they went forward with tests just to double check. Well, blow me down, I had ALL the tests done – physical, sonogram, mammogram, 3D mammogram… It was only when they asked for a biopsy that I realised this could be a bit more serious than first thought. That said, even when they lead me into the Room of Doom I still wasn’t really engaging with everything that was going on. After all, I was three weeks into a new school term, I had planning and marking to do for the following day!

I don’t remember much from the conversation in the Room of Doom. I remember the doctor say “It’s probably breast cancer….. is that what you were expecting to hear today?” and I genuinely remember nothing else. Luckily my amazing Breast Care Nurse was there taking meticulous notes (that I requested a few days later when I had the presence of mind to ask questions). I didn’t know it at the time, due to the horrific shock I’d just received, but my life had suddenly changed. No more new job. I had a life-threatening illness. At 31! Surely that wasn’t right… Suddenly my new job was breast cancer and it consumed every waking hour of my life. (There is a brilliant blog by Alice May Purkiss where she describes getting diagnosed as a job you didn’t apply for. Use the link to read it here… after you’ve finished this blog of course! https://alicemaypurkiss.co.uk/2015/12/27/youre-hired/)

My treatment plan was organised pretty quickly. I had a lumpectomy to remove the tumour and my surgeon was amazing. I’ve had six cycles of FEC chemotherapy (or feccing chemo as it came to be known) and 20 sessions of daily radiotherapy. Throughout treatment I lost my hair, my energy, my independence and my spark. Chemotherapy was particularly tough on me and I felt very isolated and alone.

Then I was introduced to an amazing charity – this charity – YouCan. They provided me with reiki during chemotherapy, reflexology during radiotherapy and offered me a place on a Wellness Weekend, which I gladly accepted. The Wellness Weekend was of particular benefit to me as it came the weekend before my last chemotherapy. I got to spend some quality time with my sister and some amazing people at different stages of their diagnosis. We did yoga, had facials and massages, did some art therapy and met with an informative nutritionist. After the weekend I felt relaxed, happy and more importantly, more mentally ready to tackle my final chemo session – by this time I was getting both tired and, quite frankly, sick of it all. Also, the Wellness Weekend made me feel less alone – there were people out there my age going through what I was going through. I’d spent time with them and they were awesome. For that, I can’t thank YouCan enough.

Below pic: Here I am half way through chemotherapy just after a Look Good Feel Better course.

LGFB pic

Now that I’m done with active treatment I still access the alternative therapies from time to time. However, now I’m trying to reclaim my body after it had been ravished by cancer treatment and YouCan are still helping me with that. They have provided me with a Personal Trainer who is helping me get my strength up ready for the YouCan 5k I’ll be attempting in October. Those who know me well know that any exercise, let alone running, really isn’t my bag. But the PT I’ve received so far – along with my own training using a couch to 5k app – has not only made me feel amazing (endorphins, who knew?!) but has helped me lose some of that blasted chemo weight.

So now, I’m a year of from diagnosis, it’s my so-called ‘cancerversary’ and quite a lot has changed… I’ve had the tumour removed from my body and been told after chemo and radiotherapy that I am NED – no evidence of disease. All good news. But my actual day to day life has changed. I’m no longer a teacher and I think it’s unlikely I’ll go back to the profession. Certain smells bring back memories of chemotherapy which make me gag. I can no longer eat certain foods – mac and cheese, jolly ranchers, pickled beetroot, vimto, just to name a few –  as I ate them during treatment and just the thought of them makes me gag (though arguably I should be cutting most of those things out of my diet anyway!) I no longer look like me – I’m still a bit puffy from treatment. Whilst I’m not bald any more I’m sporting a fluffy boy crop (maybe my hair will grow back curly?!) I’m suffering from some super fun menopausal symptoms thanks to the hormone treatment I’ll have to take for the next ten years. I don’t even feel like me, the old me, this has fundamentally changed me.

Below pic: My chemo session 1-6, left down then right down. For a while I was sporting the ‘Jack Sparrow’ look, as one of my sisters called it. So I changed it up but according to my other sister  my new scarf style made me look like Professor Lupin! (Harry Potter professor for you non-Potter Heads) So in the end I just stuck with an array of wigs (I could write a blog just on head wear, I have so much!) then just went bald due to the heat.

IMG_9814

 

But I’m optimistic and I’m getting used to the ‘new me’, figuring out my ‘new normal’. I’ve armed myself with knowledge about nutrition, physical activity and alternative therapies, all with the hope of avoiding the dreaded word ‘reoccurrence’. I’ve realised that I’m stronger than I thought and that my body is capable of amazing things. My support network has grown from family and amazing friends to also include my Freddie’s Friends pals and other members of the cancer network.

Also, as a happy way to mark the day I’m getting to live a 15 year long dream… I’m going to see the Foo Fighters! So now the 19th September will always be known as ‘The Day I Saw One of My Favorite Bands’. That sounds much better to me 😊

#youcan #youcansupport #youcanblog #youngadultsupport #youngadultcancersupport         #volunteering #cancer #support #primarybreastcancer #breastcancer #cancerversary #foofighters

Running, running, running, running…

Running_1

I don’t know about you but I find running super hard. I’m training (and I use the word loosely) for the  YouCan 5k at Leeds Castle in a few weeks time. So, to help me out and give me some more motivation I made this Spotify playlist.

Hope this helps you with your training!

https://open.spotify.com/user/richx2004/playlist/5zYVzgM2BuyGvciMpZguus?si=ZlZS4xjK

Also, any suggestions for running songs please add in the comments and I’ll pop them on the playlist.

#youcan #youcanrun #leedscastle #runningmusic #musicisgoodforthesoul

Sue’s Blogging about… an Introduction

radiotherapy pic.png

Hi everyone! I’m Sue and I’ll be taking over the YouCan blog for a while.

I just thought I’d quickly introduce myself. September last year I was diagnosed with primary breast cancer – a shocking and horrific experience for anyone, let alone someone who was only 31. I will do another blog talking in more detail about that later on.

I’ve come to volunteer at YouCan, which I’m really excited about. Amongst other things, I’ll be contributing to this blog with articles, bios, explanations of complimentary therapies and many more things so watch this space!

#youcan #youcansupport #youcanblog #youngadultsupport #youngadultcancersupport  #workspace #volunteering #cancer #support #primarybreastcancer #breastcancer