Thursday, 9 April 2015

Come what may

Author: Anonymous

"I will love you until my dying day"


An open letter to my husband,

Tonight you told me you think I don't love you anymore. Let me tell you all the reasons you are so very wrong.


1. When I think about my future I worry there's no doubt about it. It makes me sad that I may not get to achieve the things that I want. But the two at the top of my list are discovering what our children become and being old, really bloody old with you, being naughty and having fun like we do and showing public displays of affection so that young people gag and tell us to get a room. Those are the two things I want above anything else. It breaks my heart that I may have that taken away from me. My heart swells for the love I have for you and the kids and it breaks a little every time I think I may not be around to share your whole lives with you and it breaks a little more when you think I don't want those things.  

2. You still make me tingle. I fancy you despite your stinky farts, your stinky finger and your need to ask me to cut your toe nails for you. You think I don't because I'm not as physically intimate with you as I was. Well let me tell you I was in my mid twenties then. I wasn't running a household as such. I've since got older, acquired my own household and had another child and then not long after got diagnosed with breast cancer. Forgive me for being a little tired, its not the last thing on my mind at night. You are, the kids are, the safety of the house is, the kitchen that needs tidying and the endless clothes that need putting away are. And more recently my dark thoughts are. They haunt me at night time. The love I have for you doesn't need to be shown in a physical way. The love I have for you is much, much more than that. I know you are a physical person and I'm trying my best I promise you because I love you and I want you to be happy. I want to give you the things you desire. Especially if what you desire is me. Even now when I look like I do, trust me of all things I want to know that you still fancy me as much as I do you.

3. I love the way you love me. You are in essence a selfish person you acknowledge that but you can also be the most giving person when it comes to me and the kids. You've taken my child on as your own and you dote on our child like they are the Dali lama. I see that part of you that you hide away from others. I see your vulnerability and your need to be loved. It's the cutest thing when I am actually mad at you and I see how much reassurance you need that I'm not just going to walk out and leave. For all your bravado you are one of the kindest most loving people I know. You are a lazy arse but in-spite of that your ability to love and show me and the children love is second to none.

4.I love the way you talk in your sleep. And the way you can't lie to save your life. And the fun that we have. I love that we are so similar in our personalities that we just get each other. I love that you are clever and you are a perfectionist. I love that you are shit at diy so I get to do it and you let me despite me being a "woman". I love the way I can take the piss out of you and you just take it right back out of me. I love you. I love you. I love you.

And furthermore I continue to love you with everything I have despite the following.....

1. You are a pain in my arse, you moan that I moan at you but if you just did things without me asking (not moaning just asking) then what would there be for me to ask about? You know the household drills by now. Look around you can see what needs doing. You know my limitations and yet you still don't just do them so I have to ask (not moan) but you don't sometimes so I have to ask again and then when I eventually think I'm starting to sound like I'm moaning I do them myself and you tell me off cos you were going to do it! You are a self confessed lazy person and so am I but right now I'm world weary I'm going through the toughest thing I have ever been through in my life!!! And I've been through some really fucking tough shit. So it would be nice for once if you offered to cook dinner, or get the little ones dinner, breakfast, morning bottle or put them to bed. It would be nice to be asked what I want to watch on the tv and actually watch it together without you moaning that you don't like it, It would just be nice to feel looked after. But despite this I know you are finding things tough so I suck it up because I love you unconditionally. Plaster on a smile and get on with it when actually all I want to do is lay in bed and rest.

2. You hate acknowledging my breast cancer. You hate going to my appointments. You sit there and tell me how uncomfortable you are, how hot you are, how bored you are how you hate hospitals. Well I'm all those things as well, I hate all those things about hospitals. I also hate the fact that every time we go I get sticked with needles or scanned or told bad news or I'm made so unwell for a few days I actually question my ability to survive the medicine that's supposed to be making me well. I just want you to come to my appointments, I want you to want to be there to support me. I want you to hold my hand and reassure me. I'm sorry if this is selfish but however hard this is for you trust me when I say it's much, much harder for me. But because I know you find it hard and because I love you I make other arrangements so you don't have to go. It hurts my feelings a little that you don't put up any fight about wanting to be there but I push it to the back and embrace having everyone else take me because I love you and I don't want to see or feel you feeling uncomfortable with it all.   

3. I hate that any time I try to bring anything up to get it off my chest and out in the open that you turn it around onto me somehow. Like it's all my fault. I can acknowledge my faults. You say I don't talk to you, all I do is moan at you and all I ever want to do is sit on my phone. You say all I talk about is breast cancer.......granted I do talk about it but it isn't all I talk about. I talk about the kids, I tell stories about my limited day. It's not like I've really done anything the last few months accept for be ill, do housework and look after the kids. It's not like I have a job to talk to you about. But you never open up to me about anything. I get small snippets of your day. I'm interested in this and I try to further the discussion but you quickly stop talking. You go out with your friends and I'm interested in this. You never want to talk about breast cancer so that limits that conversation but it's a topic that's constantly on my mind right now and I want to talk about it so I do.....On my phone. On the YBCN group. They all get it. I do that so I don't need to burden you with it all because I love you and I can tell you are struggling with it. They aren't close by to visit they are all over the country. On my other group again they aren't close. I talk to my friends mainly by text or Facebook because 2 weeks out of 3 I'm practically housebound and no one seems to want to visit the person who makes them question their own mortality. No one apart from three want to stare the possibility of death in the face. So despite the fact I may look like I'm always on my phone, which I'm not the only person guilty of, but its one of my only means of escape. It's one of my only means of not talking about breast cancer as well sometimes because I can chat to people about their days. About their poorly kids or give my own take on parenting when its requested. Or chat about mindless things, but we as a family are faced with the reality of it every single hour of every single day, but you don't want to talk about the bloody great elephant in the room. So I try not to bring anything up because I don't want an argument. I don't want to go to sleep angry and not wake up the next day. I don't want to die and my last words to you be in anger because I love you and I want all of our memories to be great ones. But sometimes things just need to be said and dealt with accordingly together as a team because we are a team. We are the best team you can get. We are husband and wife.     

4. And lastly I know you work hard for all of us at work. I want to tell you how much I appreciate everything you do there to provide for us as a family. But it's horrible to think that you don't consider what I do at home not to be hard work when you aren't prepared to do it yourself. Trust me if I could I'd be out there earning till the cows came home. Please don't mistake my absolute fatigue as laziness. It's all I can do most days just to swing my legs out of bed and get on with the day. By the time the menial every day tasks are complete I'm pretty much done in. But I'm trying my best. On my better days I clean the bathroom and kitchen that require more than just a quick run over with an anti bac wipe. I do the washing so you have socks and pants and uniform for work and clean clothes for the kids. I tidy the toys properly rather than just dumping them in a slightly neater pile. I'm doing my best despite everything when all I want to do is give up, hide under the quilt and not get out until all this crappiness is over. Once again I plaster on the brave face because I love you and I want to be a good wife and mother.

All of that said. I do believe in the fundamentals of marriage. Why have a dog and bark yourself, but my bark is broken and I need you to bark for me at the moment. But it's not forever. I promise. I have dark thoughts and dark days but who wouldn't. And I know you do too secretly as well. I love you, I love us, I love our family with every fibre of my being.......... I'm scared what the future holds but I'm less scared with the knowledge that I'll have you by my side no matter what. My husband. And my family. Together my everything. I will never stop loving you all. Come what may, I will love you until my dying day........

Please love me till I'm me again. As I will continue to love you no matter what.

Like Janice says on friends "The way I feel about you, it's like, I finally understand what Lionel Richie's been singing about. Y'know, I mean what we have, it's like movie love, you're my soulmate"

X x x x x x x x

Sunday, 5 April 2015

There's a weird pause before it starts (Storm in a teacup - part 3)

Author: Danielle 
 
 
"Smile though your heart is aching
Smile even though it's breaking
When there are clouds in the sky, you'll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You'll see the sun come shining through for you
Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That's the time you must keep on trying
Smile, what's the use of crying?
You'll find that life is still worthwhile
If you just smile
That's the time you must keep on trying
Smile, what's the use of crying?
You'll find that life is still worthwhile
If you just smile"
- Charlie Chaplin.

Back from the hospital and this weird sense of normality kicked in. No tears were shed. Not by me anyway. That's how I wanted it. I believe mum and M shed a couple between them but I didn't look. M took on the role of telling C. We knew she needed telling right away she'd know something was going on. I don't know how or what he said but he told her on the way home from school and we gave her the book Mummy's Lump once she knew. She went and read it on her own which was her choice and then came back with the questions she had. We've been as open with her as we've needed to be and allowed her as many questions as she's wished to ask. Her biggest fear to start with was if she'd catch it like the flu. Once she'd firmly established that she couldn't her next biggest fear was mummy with a bald head. My wonderful YBCN (Younger Breast Cancer Network UK) ladies helped with this when they posted their bald and proud pictures later on in my treatment and she could see how beautiful they were without their hair. She was confused I think. Mummy looked so well so how could she be poorly? I contacted M who promised to keep her under her wing. Thank you darling you've been wonderful. We informed her school the next day and they were fab. They assigned her to an emotional literary support assistant "elsa" and so far have been very supportive.
Just two days later, on the same day I received the dates for my MRI and abdominal CT to see if my cancer had spread (I was having pains in my upper left abdomen which was a worry) I received the letter to tell me I'd been sacked. I call it the get out of jail free card. "Your 3 month trial period is coming to an end and it's not working out" yeah right! News to me. I didn't want to make this part of my story but it's significant. I've worked hard all my life. My family were market traders back in the day so even since I was little running the little side table of old stock on my dads stall I've earned a few bob. I'd recently gone back to work after my maternity leave and I felt my new boss was a lovely person, who I thought I could trust and was actually in my mind considered a friend. What a bad judge of character I was! Anyway this was the straw that broke the camels back! I cried! I was so angry big fat wet tears streaked down my face. Then I got even more angry because I'd been made to cry. That anger started to turn into hate and I very nearly said and did things that I'd probably live to regret. Thank goodness for my conscience is all I can say!

My wonderful H & S's wedding was just 3 days later. I loved every minute of the day. H looked stunning, K was a credit to the two of them and it's so wonderful to have S & K as bonafide members of the family after all these years. All my family knew and everyone wished me well. The sideways glances were a little daunting but to be expected. Most people said "I'm so sorry". I don't really understand this statement. I've said it before when shit has happened to other people but I'm sorry is an apology. You normally apologise when you've done something wrong. No one had done anything wrong they'd all been very supportive actually. But sorry was the consensus. And stay strong and be positive. It was so lovely to get dressed up. I felt really good actually, I had a bit of a stride on. Well except when we stomped from the registry office to the restaurant and I had to slip my 6" platform heels off. But I felt well, I looked well and I smiled all day long. I had cancer ,what was up with me? But I was honestly happy. That though was the last time since the shit started that I've had my glad rags on and gone out out. I need to address this!!

Just a week later very early on a Wednesday morning I had my Breast MRI. The hospital is very empty at 7:30. We eventually found the waiting room and I was advised to gown up and remove my clothes and all metal objects. I was taken through to the MRI room and fitted with a cannula and was told this was for the dye that they needed for one part of the scan. I was taken through to the scanner and asked to lay face down with my boobs strategically placed in these two voids. Having always had ample boobage I've never been one for laying on my front namely because it's not very comfy. Well I have to tell you the boob voids were a revelation! Laid on my front with my udders swinging freely a pillow propping up my noggin I was sooo comfy.
The scan was due to last between 45 mins to an hour. The two ladies conducting the scan went off into another room and my little narrow bed started sliding into the machine. A voice from a little crackly speaker assured me all was ok and what to expect and that the scan was about to start. The noise is loud, granted and the tunnel isn't the most vast of places but I was perfectly comfortable. The noise was rhythmical and I found myself hearing songs with in the noises and singing along in my head. I became vaguely aware that the scans were stopping and starting and with each one I'd get a "well done you are doing so well" from the crackly voice. The next thing I knew I was back in the room being woken up with 2 very dead arms!! The nurses were shocked when about 15 minutes into my scan I'd fallen asleep.......well I was comfy! It had gone on for an hour and fifteen minutes. Thank god I'd fallen asleep. I had to drink lots of water to flush out the dye, it made me feel a bit weird but I don't know if it was the dye or the scan to be honest.

That same afternoon I had my abdominal CT with contrast. You sit in the waiting room for an hour sipping on a questionable "squash" drink. You can choose blackcurrant, orange or lemon. I could have chosen feet flavour for all I know. It was hot and stuffy and the average age was about a hundred and two!! I finally get called through and I have to strip again and I get my second cannula of the day. They couldn't leave the MRI one in in case I'm an intravenous drug user and decided not to come back.....I mean seriously! And I go through to the doughnut machine. It's quicker than the MRI and you have little jobs to do breathe in hold it breathe out and so on while the doughnut moves over you. The contrast goes in towards the end. It's warm and you can feel it go right through you like a warm tot of whiskey. Right down to your nether regions where it promptly feels like you've piddled all over the bed!! You haven't but if you could have money on the fact that you've pissed yourself you'd be loosing that bet my friend. Cue a week of scanxiety!!
I filled the days making wonderful memories with my family. And generally living. Yeah you heard that right. We smiled, loved, lived and laughed. It was wonderful. I saw beautiful sights, had fun packed days, ate yummy food, tackled 2 of my biggest fears and had a blast. We organised a last minute birthday celebration for F's first birthday and everyone turned up. Our flat has always felt quite large but with near on 30 people in it its tiny let me tell you. But it was wonderful. I was overwhelmed with support. Anything to take my mind off of the results I was waiting for.

 



"Good news! Your CT was clear and your MRI showed the tumour is contained to a small area in the breast and as far as we can see isn't anywhere else" ANNNNNND BREATHE!!! Phew!!! We've agreed to a lumpectomy and a sentinel node biopsy. Right there and then I want a double mastectomy but as things are explained to me I come around and we agree that's the best course of action for me in the long run. The tumour is small, it's contained, the agreed surgery will be perfectly adequate. I'm not entirely convinced but I'll go with it. I'm advised that my surgery date will be within the month. I'm to have surgery first and then radiotherapy but possibly chemotherapy as well. I want the lot. I want the kit and caboodle. My cancer is triple negative which means it's a bit more rare than some other breast cancers. It's aggressive. And treatment options are limited as currently there are no targeted therapies for TNBC - this is scary. No safety net. It also means I'll get genetic screening. It's another barrage of information. It's hard to compute. I'll get my surgery date within the month.

In the between time we decide to have a few days away in Looe last minute. I love it down there. It reminds me of my childhood. We had a little 3 storey cottage on the beach. For November the weather was gorgeous and it was just what the doctor ordered. We ate fish and chips, went rock pooling, walked on the beach, had the odd merry night & went shoplifting (thanks V, here's a shop, here's a bag now help yourself!!! Lol).



When we got back my appointments for my pre-op and op day were waiting. Surgery will be the 8th December.....I need to do my Christmas shopping now!!! I have so much to sort out. I don't do any of them of course. Well the shopping I do obviously!!! We go over to the Isle of Wight the Saturday before surgery day to visit busy bees and generally have a Christmassy day. It was lovely. C sang with the carol singers on the ferry. We meet the t-Rex at robin hill and held owls at busy bees. On the Sunday before my surgery I arrange the big chop of my hair. The BCN at my pre op said that she'd almost certainly expect me to have to have chemotherapy. So what do you know. The hairs gotta go!! I donated it to the little princess trust. It's that or the bin. It was great, everyone had a go at chopping a bit off and we laughed lots. I drank wine & ate cake it was really quite fun. I dyed my hair for the last time. I hated my new do but what I wouldn't give to have it back now......oh the irony. I was prepped and ready for my surgery the next day. I couldn't wait to get this thing out of me. It had been 48 long days since I found out I had cancer.........48 days of some of my darkest thoughts but some of my happiest memories. I haven't wallowed in self pity. I cried once! Because I lost my job. Cancer will not have my sorrow. I will keep smiling :-)

 

Tired of cancer

Author: Christina B

I've only touched the sides of my Cancer journey and already I'm feeling like it's a boring book that I have to finish in order to graduate to the next class. Despite being employed to teach and inspire young people I still have a short attention span and a desire for instant gratification. Cancer is time specific. A lot of time I've noticed is spent waiting. Waiting for results, waiting for tests, waiting till you can have treatment, waiting until you have recovered from one treatment to have the next treatment, waiting to heal from surgery, waiting for side effects to disappear, the list is endless. Waiting as I have recently discovered is daunting, boring and a royal pain. I wonder how many minutes, hours and days are completely wasted waiting for time to pass. I'm not waiting on health professionals today though, today I'm waiting for me.

Today I'm waiting to feel my old normal self. I'm waiting to feel carefree, bogged down only by life's minor impracticalities. I'm waiting to wake up worrying that I've not put the bins out, or to wake up hoping that it's my day off and I don't have to jump up at silly o'clock and get ready for school. I'm waiting to see if I will get mildly irritated that my son will ask me what's for breakfast this morning despite being more than capable of making his own cereal/ toast/ bacon sandwich. I'm waiting for the unattainable and I'm waiting in vain and wanting to feel something that is never going to come back and I need to recognise that. It's like waiting for a the last train when you know due to the timetable that it's not coming.

Reflective chick moment. I will feel those feelings again regarding the work, bins and breakfast but never again in their own exclusivity. After the cancer bombshell I can only feel these feelings alongside cancer fears. Cancer fear is the monkey on your shoulder that grows in stature depending on your inner feelings. Some days it's a huge gorilla making you wonder if the ache in your stomach is stomach cancer if the headache you've had all morning is a brain tumour or a rash is skin cancer. Or cancer fear can be just the fear of your cancer metastising at a later date or that your cancer has not been fully removed and will come back again. This cancer fear is there EVERY TIME you open your eyes. Sometimes it's just a little monkey allowing you to immerse yourself as much as possible into the normality of everyday tasks like the school run, shopping and defrosting the freezer. Today this fear is attempting gorilla status and as I lay on my living room rug wrapped in my sons arms and hugging him I wish and hope that we can have many more years of hugs and try hard not to think about my own mortality as I press my cheek against his. I enjoy the feel of his skin against mine and soak up the moment.

I know what I'm waiting for, "the old normal", will never come so instead I make a deal with myself to enjoy the moment and embrace the new normal. I read somewhere that happiness is allowing yourself to be perfectly OK with ‘what is,’ rather than wishing for and worrying about ‘what is not.’ ‘What is’ is what’s supposed to be, or it would not be. The rest is just you, arguing with life. I think about that for a minute whilst revelling in the warmth of my sons cheek waiting for him to stir and gently detach my cheek from his. 

Saturday, 4 April 2015

It's a bit like spiders

Author: Veronica P (@BoobieBetrayal)

With my first chemo session looming in the next 10 days, I am starting to feel the nerves.
I feel like chemo means that there are a million things to worry about, they all run through my head a million times a day. Some feel like they should be only trivial and some are a bit bigger. All of the worries matter, all of the worries need to be seen to, all of the worries count but not a single one of them helps me now.
 
So, I've decided chemo itself is a bit like spiders. 
Loads of people thinks that they are something to be scared of and to run from. No-one knows why. We've seen the big nasty ones on the discovery channel but they aren't the ones that just vanished under the sofa...they are not even close. I don't know anyone that has ever been harmed by a spider and most of the time once they are dealt with life goes back to how it was before.

 
So here is my line of thought; you know that person that just scoops up the spider in the room and a la BeyoncĂ© just takes care of business while everyone else is in a flap? Well, I am going to be that girl right now. I am going to take care of business as best I can, respect the advice given to me but until I experience something to be afraid of I am not going to fear anything. I need my energy for making the best of the bits in-between it all.

Well that's decided then. I'm the girl who takes care of the spiders in our home :)
 

About counselling

Hi!
 
This is Sarah - the one who set this blog up! I've decided to write a post myself, about counselling....
 
I remember the first time I mentioned in a blog post that I was going to counselling. I wasn't completely sure I wanted to share this information as I was a bit embarrassed. I would never, ever think this about anyone else, but when it came to myself, it felt like admitting I was going to counselling was admitting failure, or that I am weak, or damaged. (There are moments I can still feel like that - but not because I really believe it. It's because there is still so much stigma about mental health in our society.) But I shared it anyway, and have continued to share it whenever it's relevant. It's an important part of what's been going on in my life over the last year.
 
I first went to counselling at my local cancer support charity because my mom had died from breast cancer, and I had been referred for genetic testing because of family history of breast and ovarian cancer in my family. I was considered "high risk". It was all a lot to get my head round. My genetic test result came back as negative - ie, there were no faults in my BRCA1 or BRCA2 genes which were the two that were most likely to be to blame for a family history of cancer such as mine. A couple of months later I was diagnosed with breast cancer myself anyway at age 33. As you might guess, I kept up the counselling sessions.
 
As I said, I often mention counselling in my blog posts, and I also often mention it in discussions in the Younger Breast Cancer Network UK forum. As a result, people regularly ask me questions about counselling, and I thought it might be helpful to write all about it here. I'm structuring the post as a kind of Q and A and I'm writing it with other young women with breast cancer in mind. If there are questions I haven't answered, please ask away and I'll add to this. (You can post a comment on here, email ywbcblog@yahoo.co.uk or tweet @youngbcblog.)
 
What type of counsellor do I have?
Not normally the first question people ask me! But I think an important question to answer first here. There are lots of different approaches to counselling. For example:
  • CBT - Cognitive Behavioural Therapy. This looks at the way you think and behave, helping you to understand how the way you think affects the way you behave, and vice versa, and then identify ways of making changes that will help you. It looks for practical solutions to problems, and you get set "homework"! You can read more here.
  • Psychoanalytical and psychodynamic therapies. These approaches are based on an individual's unconscious thoughts and perceptions that have developed throughout their childhood, and how these affect their current behaviour and thoughts. (Think Freud.) You can read more here.
  • Humanistic therapies. These focus on self-development, growth and responsibilities. They seek to help individuals recognise their strengths, creativity and choice in the here and now. You can read more here.
The type of counsellor I have is a person-centred counsellor - this falls in to the category of humanistic therapies. I landed a person-centred counsellor by chance. I didn't even realise until my first session that there were different kinds. Me being me (nosey, always want to know what's going on) I promptly went away and read all about it and I was very chuffed I got a person-centred counsellor! The thinking behind the approach sat really well with me and felt right for my situation. In a nutshell, a person-centred approach to counselling is a non-directive approach. The counsellor is not there as an expert - this is about me, and I am the expert on me. The counsellor doesn't dictate what is discussed, that is up to me, I lead the conversation. The counsellor is not there to advise me or tell me what to do - I know best. Sometimes it might take me a little while to work it out, but that's what the counselling helps with. It helps me work through what's going on in my head, how I feel, and what is right for me. I'll explain a little more about how in some of the answers below. (And if you're interested in the person-centred approach I recommend reading Carl Roger's book "On becoming a person".)
 
What is counselling like?/ What happens at counselling?
You talk and the counsellor listens! It took me a little while to get into it - I'd never been before so I didn't know how to "do" counselling. I felt awkward talking about myself - it felt self-indulgent and a bit rude. I'd always ask the counsellor how he was at the start of the session - it felt rude not to! I also wanted advice and answers. I'd repeatedly ask him what he thought (still do actually!). I wouldn't know how to talk - even if I had loads on my mind, I didn't know how or where to begin. But it comes more naturally once you get used to it.
I thought counselling was talking and sounding off. But actually it's very different to normal talking and sounding off. I do a lot of both to my friends (and anyone who'll listen really!) but I don't always feel better for it. The difference in counselling is the part the other person - the counsellor - plays in the conversation. I don't get advice and solutions, I don't get platitudes. I'm not being judged. I talk, and what the counsellor does is listen to me very carefully, and at times, make observations, or ask questions. It might not sound like much but these things make for incredibly helpful conversations. More on why below.

How and why does counselling help?
You can say whatever you want without risk of offending or upsetting anyone. This in itself can be really helpful at times. A massive rant, where you can name names and be as blunt and unfair as you want about everything and everyone - and no repercussions!

You don't get offered advice and solutions. People in your life who care about you tend to do this at every opportunity whether you ask for it or not. There are times you need advice and solutions, but there are also times you don't. Sometimes you just need to talk, and be heard and understood and sometimes you need to talk because just talking things through helps you to process and understand things and reach conclusions and decisions yourself. At these times, the last thing you need is someone else's advice and suggested solutions! They tend to be based on the other person's experience and personal baggage and so can leave you feeling fed up, frustrated and as if you haven't been heard. You were talking about you and your situation! You didn't ask for their advice based on their situation which they now want to tell you all about! Shut up! Well, at counselling, you don't get advice and solutions, the counsellor never talks about themself - and it's wonderful!

You don't get offered platitudes. Doesn't matter what you say at counselling, you won't get a platitude. That too, is wonderful. Platitudes are what people throw back at you when there's no advice or solution. For example: 
You: "I'm so upset, I have cancer and I might be dead by the end of the year."
Other person: "You aren't going to die, I just know you're going to be fine. Besides - we could all die at any time. I could go out and get hit by a car tomorrow!"
A couple things to say about this. First of all, I have lost count of the number of people who have told me they might get hit by a car, or bus. Apparently this is on everyone's mind, and the way most people think they are most likely to die? Oh please! Look, listen, look again when you cross the street, and stop telling me you might get hit by a car!
Secondly, they don't mean to do this, but the person has basically told you to change the topic, because, as there is no solution to your problem, they don't know what to say, so now the conversation makes them feel uncomfortable and they want it to stop. This is why platitudes are so annoying - they are meaningless and they shut you up.
At counselling, the response to you saying "I'm so upset, I have cancer and I might be dead by the end of the year" won't be a platitude that shuts you up. It'll be either quiet, to allow you to continue talking, or if you don't know what to say next, it'll be a question or observation that enables you to continue, if it's something you need to talk about.

The counsellor is very good at listening. VERY GOOD! And as a result what they can do is make observations that help you to move forward in your thinking, consider other perspectives, understand what things mean for you and so on. They can seem like really subtle points, but some of the things that a counsellor says can make a profound difference to the way you think and feel. They're the kind of observations and questions you don't get elsewhere.
As an example, after my mom died I was carrying a lot of guilt around with me for not knowing how ill she was. She'd kept a lot from me. It was over a year after her death and the guilt was playing on my mind every day. I told the whole story of her cancer, from diagnosis to death, and the year since her death, in great detail over a number of sessions. The counsellor barely got a word in, but those he did were so helpful. I remember him pointing out I say "should" a lot. For example, I should have known how ill she was, I should have done this or that differently, I should feel this way or that. He would ask, "Why should you?"
Another result of the counsellor being so good at listening, is they can ask you some very thought provoking (sometimes quite provocative) questions. For example, my counsellor asked me "Can you make someone tell you the truth?"
These things might not seem like much, the little observations, the questions like that - but actually they are incredibly powerful and effective in helping you to process thoughts, see things from different perspectives, and ultimately deal with things and move forward. I'd been tormented by guilt for over a year after my mom died - in a matter of weeks of counselling, it had gone.

And all of this is happening in a safe place -you aren't being judged, and nothing changes in the outside world. There are no repercussions. No-one else will ever know what you've said (unless you decide to tell them.)

Should I go to counselling if I don't know what to talk about?
Yes! I didn't know where to begin. It's ok because the counsellor is there to help you to talk. They're used to people turning up and not knowing where to begin or what to say. I started just by telling my story, in great detail, from start to finish. It was the counsellor's questions and observations that helped open the conversation up. I'm used to counselling now so I generally arrive and launch straight in to what's on my mind and my own observations about it and he adds in his own along with questions. It's brilliant.

Who goes to counselling?
More people than you realise, and people you really wouldn't expect are going to counselling! Think of the most together person you know. Chances are, they've been to counselling. When I first started, I admitted it to a friend. She told me she'd been to counselling before. I couldn't believe it. I then admitted it to another friend. She had started counselling recently. Over time I discovered that lots of people I know (not including the ones who have been diagnosed with breast cancer!) have been to counselling or been on anti-depressants at some point in their life. It's more "normal" than you'd think - it's just that most people don't talk about it.

Is counselling just an American thing?
Nope! Just seems that in the USA people are much more open about it. Counselling or therapy isn't seen so much as something "crazy people" do. It's something anyone might do, because we are all people, we all have emotions including the bad ones, life can be horrible, and counselling helps.

Will it open up the floodgates?
If you have floodgates that need opening then it might! In my experience it hasn't. The only time I cried at counselling - and it wasn't full on crying, it was more red/watery eyes and a wobbly chin - was when my beautiful dog was diagnosed with cancer. That was the final straw at that point! Other than that though, there haven't been tears. Just me unpicking everything that's going on in my head.

Where do you go for counselling and how much does it cost?
There are a number of options. If you're a young woman with breast cancer in the UK, then chances are, not too far from you, there is a cancer support charity. Some areas of the UK have places called Maggie's Centres. Some have places called The Haven which are specifically providing support for people with breast cancer. Others, like where I live, might have individual local support charities and centres (the one near me is called Coping with Cancer in Leicestershire and Rutland.) If you can't immediately find a centre near you, Macmillan should be able to advise.
My personal advice would be to seek counselling via a cancer support charity in the first instance as their counsellors should be experienced in supporting people with cancer. But there are other ways of accessing counselling, for example via your GP, and sometimes through work. (If you have private healthcare cover, counselling may also be covered as part of this.)
Generally accessing counselling through these routes should be free of charge.

You can of course also look in to paying for counselling sessions. If this is something you want to explore then these websites might be of use:

BACP
Counselling Directory 
 
Any other questions I might be able to answer?
If there are questions I haven't answered, please ask away and I'll add to this. You can post a comment on here, email ywbcblog@yahoo.co.uk or tweet @youngbcblog.

What are your experiences of counselling?
If you are a young woman in the UK and have had counselling to help with dealing with a breast cancer diagnosis, treatment, life after cancer etc and want to share your experience on this blog (you can do so completely anonymously) then that would be wonderful! Please get in touch at ywbcblog@yahoo.co.uk.



Wednesday, 1 April 2015

The cold cap

Author: Kim F

When I was told I was to have chemotherapy and my hair would fall out my first thought was, that's fine, I'll do whatever it takes to get rid of the cancer. My breast care nurse mentioned something called scalp cooling/cold capping that could prevent hair loss. Apparently it is less than 50% effective and hard work! I was reluctant to try it saying I wasn't that bothered about losing my hair. My husband had a word with me asking if maybe I would regret not even trying it. Perhaps I would, so I agreed to try it.
 
My hair wasn't that long to start with but I knew it had to go shorter before I started. I knew I would lose some hair and I didn't want long hairs everywhere! So this is it before:

I didn't actually get around to having it cut before my first chemo session, maybe slight denial on my part! This is me on my first FEC-T cycle, attractive head gear don’t you think!

I think I'm smiling because it's not switched on yet! There is an outer and inner layer to the hat and you have to make sure it is TIGHT on your head. Double and triple check it is as tight as it will go, this will ensure you get the best results. As soon as I looked in the mirror, this image came to mind....

But others thought of this......

I was told to take a couple of paracetamol an hour before my appointment, this didn't sound encouraging! So I'm sat in the seat with this fetching hat on my head waiting for switch on...... I didn't have to wait long. As soon as it started up I could hear water swirl around my head and instantly my head went cold. I knew I had to wear it thirty minutes before they started giving me the chemotherapy drugs and this half an hour felt like an eternity! Proper brain freeze. It gave me a headache and I felt sick. A couple of times I wondered to myself if I could carry on but I'm determined and do not like failing. So with gritted teeth I soldiered on. But after about 20 minutes my head must have gone numb and the pain disappeared. Ahhhh, lovely! So thankfully it didn't really hurt for the rest of the time - all throughout the drugs being administered and an hour and a half after that. So you are in hospital two hours longer if you weren't using the cap. If it works, worth it surely!?

About 10 days after my first session I decided to get that haircut. My best friend is a hairdresser so who better to go to! It was quite emotional for both of us because as she washed and cut my hair, it started coming out in small clumps....bugger! I didn't panic though, my hair is quite thick and I had loads I could lose before it noticed. Here is the new hair cut...

I didn't actually lose much more hair that cycle. As it got closer to my next chemo session I started to get nervous, would I be able to do it again or would I quit this time!? I managed to do it again, it hurt a lot more this time though and I was very close to quitting this time. But I carried on and felt extremely glad I managed it again. As my third cycle came around though I started to dread it and every time I thought of the cold cap or even just saw a picture of me in the cap it made me feel physically sick. The third time wasn't actually that bad, I think I had timed the paracetamol just right so I hardly had any pain, result! After the third cycle I was still losing a bit of hair but so far I had no bald patches!

The fourth session came and went and again I felt sick and was left wondering if I could carry on. There was only two to go, of course I could carry on!! It was only 20 minutes of pain to hopefully keep my hair and so far so good. When the final one came I was elated, still got shed loads of hair left, I was a success!! Now I've been saying that the cap gets cold, this is how cold it gets.....it froze my hair! This is a pic from my last cold cap session!
Even though it was extremely hard work to get through all 6 cycles of chemo with the cold cap, I am so glad I did. And I am so glad my husband pushed me to try it! Now I can look in the mirror and look 'normal' and to everyone else I don't look like a cancer patient. I think it will definitely help when I have finished treatment and I'm trying to get back to some sort of normality.
 
So my top tips for surviving the cold cap!

Take 2 paracetamol an hour before you are due to wear the cap.

Keep yourself occupied in the first 20 mins, I chatted to everyone around me!

Keep accepting cups of tea or coffee.

Tell yourself that it's only the first 20-30 mins that is the hardest.

In between cycles wash hair once or twice a week in mild shampoo, I used Simple.

Don't pull on your hair to see if it is falling out, I got told off numerous times for this!

Don't use a hairdryer or straighteners.

(this is me a month after my last chemo, just before my surgery – look at all that hair!)

Let's talk about sex baby!

Author: Lara H

Geraldine is a lovely lady. In her 60’s. Well spoken. Wise. She’s one of the Breast Care Nurses who’s called me in for a little chat and a check up.

“Now I need to ask you Lara. Do you have a partner?”

“No. (Dramatic pause) I have a Lover.”

I said this purely in the hope of shocking Geraldine and to make her gasp or at least squirm in her chair. Course I don’t have a bloody lover! Well I sort of do - but I don’t think once a month counts. Right?

Geraldine doesn’t bat an eyelid. Doesn’t even flinch a millimetre.

Damn it.

Geraldine 1. Lara 0.

“You need to have regular intercourse throughout chemotherapy to keep everything in working order and the juices flowing so to speak. I recommend you get a vibrator.”

I think I’m gonna vom. Now I’m the one squirming in my chair.

Geraldine 2. Lara 0.

I can’t think of anything more revolting. A cold, clammy, glittery dildo that stinks of rubber and has a tiny pink rabbit having an epileptic fit attached to the side. How thoroughly sexy. I rather use it to stir my custard thanks. But if you insist Geraldine. I mean so far the NHS have come up trumps. A free wig. A complementary silk Hermes scarf designed by Stella McCartney. So why not give out free quivering wangers to all cancer patients? Or even better, free sessions with hunky men who are trained sexual ‘therapists.’ Oh and on top of that, throw in a couple of Merkins, seeing as chemo makes ALL of the hair on your body fall out if you know what I mean. Thank you please.

After my heart to heart with Geraldine I text my ‘Lover.’

'I’ve just been to see my nurse and she says I need to have LOADS of sex during chemo to keep everything in working order. THIS IS A MATTER OF LIFE AND DEATH! You would be saving my life x’

No pressure or anything.

A few minutes later I get a reply.

‘Happy to oblige! x’

Being a cancer patient sometimes does have it’s perks.




(Thank you to Lara who writes at Get your tits out! for sending this post to be included here!)

Storm in a teacup part 2 - what a whirlwind

Author: Danielle



There's this calendar with the most meaningful dates bigger and bolder than the rest. Wednesday 22nd October 2014 is a new date to add to my list, but how do you categorise it? You have the date and time you got married, the date and time you had your babies. I think this new one it's a bit like remembering what you were doing when you found out about 9/11 or Princess Di or the tsunami. One of those horrible experiences that sticks rather than a nice one you reflect on.

Bizarre morning whist getting C ready for school and F ready to go to nanas (good old nana). I was putting my face on, I turned to a petrified looking M and stated "don't look so worried, I haven't got cancer". It was one of those famous last words moments, you had to be there. So M got C off to school and we took F to mums and we were on our way like two rabbits in the headlights.

Oncology is another very fresh looking department and much like Breast screening the average age is about 25-35 years older than myself but the waiting room is much more vast and much less solemn and quiet. It's rather quite a bubbly waiting room in the sense that there's probably about 5 separate clinics happening at any one time. I eventually get called. A rather chirpy nurse leads us to a room commonly known as "the naughty corner", we had a giggle at the obvious funny side of being put in the naughty corner. I was asked to strip from the waist up and place on this rather fetching poncho type jacket thing and wait for the doctor. I don't remember what the weather was like, I don't remember the big news of the day. I do remember being sat in the naughty corner for ages it seemed. M and I were trying to make sense of the brightly panelled building in front of us and having a giggle about the fact it was called Ronald McDonald house and coming up with silly ideas about what it was used for. We were quite obviously nervous and it was a weird nervous non-conversation whist I sat there in my weird poncho but I will never forget it. It was the last conversation that we had that wasn't tinged with the shit!

In walks a doctor closely followed by a nurse with lovely pink accessories on her clothing. A pink lanyard holding her name badge a pink pen and a pink ribbon badge. I didn't put two and two together. Now I'd know the signs. They tag team you. The doctor deals the gut blow and the nurse mops up behind. I hopped up on the bed, like the good little patient so the doctor could examine me. I think I tried to make small talk or a joke they didn't find me even remotely amusing (I have a habit of laughing at serious situations). I was trying to read their faces and let me tell you. They gave nothing away!! Dead pan. He asked me some questions about my lump and the other symptoms I was experiencing. My line and my weird hard vein. Then nodded and told me to get dressed again......ooookaaay!! Weird.

The doctor is sat at the desk to the side of us, the nurse awaits me getting dressed and when I'm done perches on the examination table in front of us. In front of the doctor is a few sheets of paper stapled together. He has them face down on the desk. He flips them over but he's guarding them studying the papers without making eye contact there's an extended silence in the room. The anticipation makes everything feel like slow motion. "I'm really sorry". Oh fucking hell!!! Freeze frame a moment forever etched in my psyche. Concentrate Danielle, shits about to get real. "The lump you found is Breast cancer". You'd think that would be the point at which my world fell apart. It wasn't. Don't get me wrong I was shitting myself but the weeks of waiting for appointments, of tests, scans and waiting for results. The weeks of unknown. I hadn't realised I'd been holding my breath. And suddenly in that moment I breathed and everything became vivid and clear. And I was about to get a shitload of information that I wouldn't be able to compute right now but I needed to take it all in because I'd have to consult Dr Google later. I heard words, snippets if you like. Grade 3, aggressive, invasive, not hormone responsive. My brain allowed what it could given that it had just been dropped off of the Empire State and was currently hurtling towards earth at a million miles an hour. Small tumour, early stages, good prognosis........ok that's better, my brain sighed and pulled its parachute cord. Surgery, radiotherapy, chemotherapy...... parachute failed!!! Splat!!! Grey matter all over the sidewalk. "Do you have any questions" (yes!!!) "no" (am I going to die???) "ok we'll give you a few minutes and the nurse (K) will come back to answer any questions you may have". They left the room. I sat staring out at the Ronald McDonald building unfeeling and became acutely aware that M was sobbing his heart out next to me. I've never seen him cry before. He probably did when F was born but I was so off my face on the pain meds I can't remember. I could do with some of those now to dampen this burning rage that's ripping through my body. "Wow" I think that was the first thing I said to M. And then it was something along the lines of "don't bloody flake on me now, I need you to be strong so I can be, now sort yourself out" which to be fair to him he did. We've had this conversation before. I'm not an overly emotional person, I don't do depression, I don't do wallowing and if I'm upset don't cuddle me. The night 4 robbers came into the bookies to hold up the shop and I was working alone I was a mess namely because I was plied alcohol by my family the minute the police let me go home and M spent the night holding me whilst I sobbed and sobbed and
sobbed big fat wet tears streaming down my puffy cheeks, till the tears ran out and were replaced by dry heaves he didn't let go. He just held on until I fretfully fell asleep. He knew not to hold me now, to this day I haven't cried about having cancer. I've cried in pain from my surgery, I cried when 2 days after my diagnosis I got sacked. I've cried when I'm asked how the kids are coping. But about me and my cancer it's not worth it. I don't like to waste time on feeling sorry for myself. "Don't borrow tomorrow's sorrow" I don't know who said it but it's one of my favourites. Basically it means don't waste time and your future worrying. I don't remember the conversation we had, I don't even know if we conversed at all. I think we just sat there shocked to the core. K the Breast care nurse came back. I don't know how long they left us, time had taken on another new dimension. She's a beautiful, petite blonde lady with a slight Irish accent and she is lovely. She placed a folder on the desk and the white stapled sheets were back. She went through everything the doctor had gone through with us before. Just incase we missed it the first time. Questions started to pop up and she answered them all with a reassuring calmness. She's a pro, she's done this before. She gave me the book "mummy's lump" I nearly lost it at that point. Luckily M had some questions of his own and I was able to pull it back again. I've found along the way he's amazing at asking the right questions, he asks the questions I forget to ask based on conversations we've had weeks before. The whole time my poor little splatted brain is screaming "why!!!" At the top of its lungs.

I have some jobs to do before I get to leave. First I have to have a blood test then a mammogram, fyi if you're scared of needles, hope you never get a cancer diagnosis!! Because you will become a veritable pin cushion. They call it the triple test or something - ultra sound, biopsy, mammogram. They don't generally do a mammogram on a younger person for diagnostics as our breast tissue is dense and the mammogram is basically useless but I had to have one none the less.

The poor man in the bloods room! To this day I feel sorry for what I said. I tend to laugh at really important stuff. I was exchanging banter with him and suddenly just blurted out that I had just been diagnosed with cancer. I needed to say it. Not to the guy but basically say the words I've got cancer, I had to test it on my palette to make it fit and to make it real. Up to this point I'm sure I was just talked at. It was time to make my mark and take charge. He wished me well in my treatment and I apologised for about the millionth time!

On the way across to Breast screening I decided to call my mum. I had no idea how long it would take to wait for the mammo and it was already pushing lunchtime. She'd know something was up and would be fretting. I hung up 3 times before actually letting the call go through. My mum is the one person who can break my defences. I knew once I'd stared to tell her I'd be on borrowed time to either end the conversation and move on or break down and if I broke down now where would it end. I don't know how I told her. I don't know what I said. I don't think I handled it well but I'd done it and from then on Marc was my diagnosis voice, calling people and taking all the calls. I can't imagine what was said between everyone he spoke to but I'm just glad I didn't have to speak to anyone

The essence of the naughty room had well and truly taken over by the time we made it to Breast screening. Either that or the shock was really starting to kick in!! But more nervous banter ensued. I got called through and asked to strip from the waist up again! (Time to get used to this) I stood in front of the weird looking X-ray machine while the radiographer clamped first good boob one way and another then bad boob one way and "ouch" crikey if I didn't know my lump was there before I certainly knew it was now. I snuck a quick peek before I left.....bastard thing glowing as bright as the North Star!!

How did we even get home! M drove, I just sat, knowing that the closer we got the further I was away from the sterile hospital where you could pretend it wasn't happening. We pulled up at mums took a deep breath and went in.........