Hi I'm Lee Donna's brother. I loved my sister very much and still can't believe she isn't going to call, text or email me ever again.
She was the most positive person you could have ever met. If some people think the 'glass is half empty' and some are the 'glass is half full', Donna was a 'glass is overflowing....make sure everyone gets a glass' type of person.
She lived life to the full, enjoying it as though tomorrow was going to be her last. Always traveling (or planning the next big adventure) and getting that balance of life and work right.
She worked hard, but knew when to switch off and had the ability to not look at the phone when a text came in or answer it if she was with someone else....it was a skill and it made her a better balanced person.
So this is all her journal entries, I hope that they can help you if you are living with cancer ("not fighting it - in a fight someone loses and you can't be sure it's not going to be you" - Donna's words not mine) and take strength from them - Donna would have liked to know that her words would be helping others, it's why she wrote them.
This is the first entry in Donna's blog...
13.2.12 So where am I? Sitting on a train heading back home from Devon - I didn't want to leave - was happy in my bubble - but I know I have to face the next stages in this trip called life!
In four weeks I will be under the knife - so I need to make sure my head is prepared and I know what I maybe fearful of. It's not the anaesthetic or the surgery, I guess it's actually what they find - to know for sure that the chemo worked and where I am. We know there isn't a mass according to the scans and I need to admit this to myself but then have it confirmed by surgery. It's an odd one.
18.2.12 Funny week really full of so many emotions - on Monday I got a letter confirming that there is no abnormal trace activity in my pelvis "whatsoever". Since then, I have had three big cries - cries from the bottom of my heart - but not pain - sheer relief - the letter has been next to my bed all week and I keep reading it. As I write this I cry again. All that pain six months ago - such torturous incredible sadness and pain. Now here I am six months on with no activity whatsoever - it's so hard to believe and to get your head round, to adjust to. Surgery is three weeks away and I haven't even considered or prepared myself yet. Right now, weirdly I'm in an odd place. I'm now a stone heavier and that really bothers me. I KNOW once I can exercise in six months it will have changed - just like it did before except better as I won't be hammering pints of cider this summer! Changing my diet can only help me and my soldiers.
So Tuesday and Wednesday went to work and felt good, energised, happy. Thursday came down with a bump - totally tired and exhausted and teary. It had got too much and I had pushed myself again. Friday - had Reiki as usual, felt totally relaxed - met this girl who had her head out and she looked great. Hair shorter than mine, but obviously happy in herself. I just need the front of my hair to be thicker, darker and then I can do that too. I think I'll know when. Eyelashes are coming too which will help. Sure I'll cry at that too - I like being able to release the emotion, it's something I kinda never really did very well. So then today I woke up feeling a bit out of sorts, lonely and a bit grumpy - needed to write this to express my feelings and cry again. Feeling brighter, still very emotional and tired, just flat, which is odd bearing in mind the news I have had - I need to get to surgery and more forwards. Sat in bed all morning writing this crying and thinking: life is an odd one.
22.2.12 I'm so tired and so confused - hard to be focused at the moment - coming out of chemo towards surgery - I'm not sleeping. I think my subconscious is going mad with thoughts. What to do?
23.2.2012 Then today happens....got some sleep and was functioning all day - was bright, breezy, my body was tired but ok, head was together and was really productive at work. For the first time in ages I was not fuzzy, not treading through mud - I was back, and I was me. Six months on.
Physio is underway to make my arm work, sitting here in bed in a state of disbelief - I would normally be buzzing off the steroids - awake for all the wrong reasons - wired. It seems that tomorrow will be acceptance that it's over.
Two weeks to surgery and it will fly by. It's over and I did it. The hardest part mentally is done. Still need to remain strong and focused, my soldiers having now melted the lumps, need to heal me. WE CAN DO IT!
25.2.2012 So here I am six months after that fateful diagnosis. The day my world fell apart. Just reading the diary and I can't believe the positivity and humour (on occasions) that comes from it. I know the bits I will never forget; leaning over the bath with my hair coming out in my hands - knowing that it had to come off. That was painful and shocking; Seeing mum's face the first time she saw me with no hair - her tears - but as I sit here and cry - I need to look at what has been accomplished. What I, yes me, I have done with a huge amount of support yes, but what my soldiers and me have managed to do.
I have had two 2.2cms tumours - now one has gone and hopefully as no mass is seen, the other in my breast has gone too - I have had scans, had bad news, pain, a dodgy arm, tears and worry - I have cut off my hair - lost my eyelashes, watched my skin pale and get ill and somehow, here I am, as always with the thought of Lance Armstrong in my mind who, at 22, had three tumours and one was in his brain. I am drawn on his inspiration.
I need to pat myself on the back. I'm here, I've done it. We still have a way to go and some challenges to face but phase one is complete.
Part.2
25-2-12
So here I am 6 moths after that fateful diagnosis. The day my world fell apart, the day it all changed – just reading the diary and I can’t believe the positivity and humour (on occasions) that comes from it. I know the bits I will never forget -leaning over the bath with my hair coming out in my hands – knowing it had to come off. That was painful and shocking – seeing mum’s face the first time she saw me with no hair – her tears – but as I sit here and cry – I need to look at what has been accomplished – what I, yes me – I have done, with a huge amount of support yes, but what my soldiers have managed to do – I had 2 2.2cm tumours, now one has gone – and hopefully as no mass is seen, the other in my breast has gone too.
I have had scans, had bad news, pain, a. dodgy arm, tears and worry – I have cut off my hair, lost my eyelashes, watched my skin pale and get ill – somehow here I am, as always with the thought of Lance Armstrong in my mind who at 22 (I know he’s fitter than me) had 3 tumours.
I am drawn on his inspiration.
I remember the bank holiday weekend trying to make the surgery vs chemo decision, worry about kids, just being all over the place…what a day…what a 6 months, but mostly I need to pat myself on the back .
I’m here I’ve done it, I’ve faced and so far so good. We still have a way to go and some challenges to face but phase one is complete.
It’s the 25th of Feb, by the 25th of May - only 3 months away we will almost be there. We are 2/3rds of the way in timing and my head is still strong. I know I will make it , I know that there are days when I can’t make it up the stairs and days when I can . I know at the moment my head is clearing that I seem to be really energised but I’m not sure that’s just how I was. I think I am one of the lucky ones.
My medical care , drugs, reiki, support and my attitude has got me through!!
26-2-12
Was at S’s last night. Was so excited to be away for the night and to see her, we had a lovely time. I was a bit hyper ten she got a bit intense and I just burst into tears! I just suddenly realised that I can only push things so far physically, I may be moving forward but naturally I still have a way to go. It was a real eye opener. I have to be aware that I can’t ‘take’ lots of things especially anything intense. Just flips me out!!
27-2-12
So finally sorted from Chemo, 2 weeks to surgery and I pull a muscle/strain in my hip/groin area..how, no idea? Never dull.
28-2-12
What a mad day, had to write. Woke up breezy great, really together and then it all went downhill. Bra shopping awful. Under pressure and letter from Mr K. confirming surgery and the world came crashing down!
“the big cry” number 6 I think, reality struck, tried to keep it together and I did as I saw L and the Cat, but in-between I felt lonely, scared, worried. Back to a place where I haven’t been in a while, the unknown, I have to face it – the fear.
Chat about party and what I really want/ not want to know 50% of people there.
Cat “you look really pretty” T “Donna is back”, “You look much better without the scarf”
Get my head around the scarf, party or not? Or different fear of the surgery?
Reality of it and the recovery?
What can I do with work….What is real?
Oh, so wish this could be easier, it’s so emotional all the time and so many different emotions. My head is all over place and my eye hurt from the tears. Everything just feels so tough today, so tough!
1-3-12
Reiki and calm comes again.
In 24/48 hours I have a total turnaround again. I feel positive again and know I can cope. I know my soldiers will protect me and my body wants to heal.
I can do this and soon I will take my scarf off!
4-3-12
So it’s 12.23am latest night ever…actually went out at 8 for the first time ever!!
TODAY I DIDN’T WEAR A SCARF
I went out for the first time with my head out, was terrified, cried twice….but I DID IT.
Full circle again no scarves just my little grey head.
Ton was up for the weekend and I’m all talked out. Although I have lots more energy still not enough for a weekend visitor and a night out, although it was great.
Busy week and a bit concerned but on!
6-3-12
So I went to work yesterday scarf-less, that’s it, no more scarves for me!
Today was physio from -40˚to -15˚and 10cm to 4cm. It’s all going in the right direction, by this time next week the surgery will be done and I will know where I am.
10-3-12
Li fundraiser
So I went there and it was lots of fun.
Shazza, Oon, Rac, Li, Ste all great. Sang danced and lots of fun. Won on the rafle and fundraised an extra £60, stood up in front of 100 people and auctioned a hair cut, when only a week ago I was wearing a scarf. I should be so so proud of myself, I’m sitting here with tears rolling down my face, it’s such a step forward to recovery.
I never want to go through this again so me and my new life and my soldiers need to learn that no matter what happens and how it happens I can do this…
I CAN, I CAN, ICAN!
12-3-12
So, was very uptight and anxious this morning for the sentinel node mapping, as it was, it turns out painless and easy.
Mum and Dad have arrived and tried to go out to dinner. Felt one minute anxious and one minute fine, just want it to be over so I know where I am.
I can deal with the pain, it’s just the not knowing that’s so hard. I hope I will be fine and I hope it’s ok. That’s not the question, I know it will be OK, just a general anxiety that I wish would go away.
Great thing is it will 🙂
13-3-12
Surgery Day
I had actually had a big chat with myself last night, so I set my coping strategies in place and chatted to the soldiers to such a degree that I actually felt a huge surge of emotion!!
Quite crazy!
Being awake all night was much more positive and I woke up a lot less anxious and more together. Mum and Dad picked me up at 7, and 3 anxious people headed off. I was quite functional about it all again. Then at 11 I headed down, woke up later but by 2/3 with a drain. No knowledge of going back in.
Removal of level one nodes over the microscopic bit, but lets face it I still have levels 2 and 3 to help drain and any cancer needs to go, can’t have it sneaking of anywhere else
Besides I know my soldiers are all ready with their magic Elastoplast to heal me.
Today, right now, I have NO cancer in my breast or my nodes and none activity whatsoever in my pelvis.
Radiotherapy to go but today 13-3-12 right now I am cancer free.
Right body needs to move forward x
Maybe I can book some Reiki for next week just to give it a bit of a boost, could just book a cab.
I have a drain in the left, a canula in the right, but no cancer in my body and I know I will heal, I just know it. I have always known it.
What an amazing and mad day, on the 15th August 2011, I was diagnosed and on the 13th March 2012 I had it cut out! 7 months later!!
Tomorrow will be a telling day as the painkillers wear off but we will see how it all works out.
14-3-12
So it’s 7.50 and I have had 2 cups of tea and breakfast already!
Washed up and out of gown, feeling tired but OK. No real pain in side where drain is and seem to have no pain in breast – he took out 37g of tissue. I remember the anaesthetic really hurting and making me shake. Just have to make sure I keep moving and now understand a lot more about my lymph and how the work and do the physio on both arms.
Fingers crossed this is good again.
Nurse spent ages with me last night was great he told me I would be just fine and do you know what I do think I will be just fine.
The hand hurts and doesn’t want the antibiotics but apart from that doing fine and just today over.
Getting a bit bored but mostly just tired. Had a look at my wounds and it was a bit yucky, going to try and have a wash now.
Now that’s a scar! And a huge bruise!
15-3-12
Well today is a bit different, very tired again, but feel real pain for the first time. Such an ouch that I thought I was going to fall over. Seem that the drain may have hit a nerve so glad to get the canula out- wow I feel trashed today!!
So I have my right hand back, now I need to learn about my arm and what happens as they told me yesterday but I was so tired.
Have just realised I have had surgery and this may take time to heal!
3pm and I’m back, still tired but feeling much brighter. Felt so so rubbish really, really wiped out and the pain…ouch, ouch, ouch!!
16-3-12
So here we are today, 3 days after the op and feeling OK. No pain in breast, just in drain and under arm. I guess this will change over time feeling very battered and blue.
Feeling very anxious about this drain removal as I know it’s going to hurt, still then it will be done and I can go home.
It does hurt, well sting under my arm but I need to keep moving and find some determination from somewhere.
It’s odd as I now have more sensation in my arm, it tingles. This is a tough head thing actually as I’m shattered, surprised that it’s this hard. Such a high off that anaesthetic then such a low yesterday.
I don’t really remember Tuesday at all! Now it’s Friday and I just want to go home! Well it’s 10:45 and by 1 this drain will be out and by 2, hopefully, I’ll be heading home!!
It tingles and stings – like putting antiseptic on an open wound, but it’s not consistent pain.
It’s time now to find strength and determination to recover, fully and effectively so I’m feeling alive and well.
17-03-12
Tears came and the relief and frustration and concern came…and more tears, feeling flat. Part of me not wanting what I have. Feeling so frustrated but all over the place, emotions running high.
Sometimes it’s very hard to keep feeling positive and find the energy each day. If I think about having cancer and what it means it hurts me and I need to refocus on a positive, it’s a hard, hard thing, so very tough.
18-03-12
Mothers Day
19-03-12
Mum’s gone home.
Time to stand on my own two feet and crack back into life.
Sad, scary, frightening and worrying.
My arm is an interesting sensation, it does hurt, but not a big pain. Like a hurty, tingling sensation – spikey – let’s hope it’s all OK, but worried got to be honest!
20-03-12
Waking up on my own, odd, not fearful, but arm has been very sore – it’s really quite swollen and tender. So need to keep an eye on it and make sure I don’t over do it!!
Feel a bit scared about work, about going outside and just generally going back to normal.
I need to get a grip and move through it!!!
Next stage beckons
22-03-12
Flowers and no pain killers, it’s a good day – head better.
Feeling brighter, arms are sore but lets face it one had chemo one had surgery. They really didn’t have a chance!
23-03-12
Today woke up feeling really flat.
Odd as the sun is shining and it’s a lovely day. It’s that odd thing of feeling pressure that’s not there and don’t want to organise anything, just want to get to Monday and hear news and then start to pull it together. Right now I just don’t want to do anything for anyone but me. I feel so tired, so very tired of everything.
25-03-12
Sometimes I am so very tired of being positive every day. Mum and Dad have gone on hols and right now I feel so very lonely . Today I just want to be on my own.
Trying to sort out company, I know it’s there , just not having the car is not ideal. Very wobbly today, didn’t realise how nervous I am about tomorrow.
The day has passed and I have not seen a soul and I feel very odd. Not sure if my arm is OK, feels swollen but not super sore.
I just don’t know where I am – cannot settle – oh well!!
26-03-12
I have lost today – went to see Mr K @ 9am only to find out he has to perform more surgery. My world cracked and it hurt a lot. It seems that the easy route is not something I am allowed – today I feel empty, empty of will, empty of energy, just empty.
Truly today my fight has gone – too much to deal with today.
Tamofen to take
More surgery to do
Delay of process
And I haven’t managed to look yet – I’m scared to see the scars. My natural resolve is tested to the extreme today and today it’s just not there, today I don’t want cancer, today I want it all to go away – enough – I have had enough now – I really have.
Spent the day trying to be normal – I have healed well according to Mr K. He was pleased with the arm movement and he drained heaps of fluid away – 2 pots of it!
I just feel so tired of it all and I can’t stop the tears, they just keep coming!
Nan just called – bless her – but I wish Mum was here, but she’s not. Time to get on with things I guess.
So what’s happened
The cancer has been downgraded to 2
12 Lymph nodes were taken
2 showed microscopic cancer cells
The breast has broken down into bits and the biggest of them was 4mm (19mm in total taken) Margin on top bit OK but bottom only 2mm so want 5 more so more slicing to do.
I know it’s positive – it’s just pushing it all back.
Just am so tired of everything.
I need to bath and look, I’m a bit scared it’s been a big big big day – great thing is I’m not anxious - wow – I cried and looked.
You hardly notice anything, it’s exceptional – I cried and cried and cried.
Totally lost today – I did lots of sitting and worrying and crying – I will try tomorrow to find my energy again.
Dig deep to find it Don’s, dig deep my girl.
Must have a word with my soldiers!
27-03-12
So I was angry and grumpy today – had slept badly and just was over the whole thing.
I cried and just felt rubbish and so so so lonely.
Took ages to organise someone to try and take me to hospital – never felt so lonely. Will still need to go on my own.
Was rubbish and scared and horrid.
Just couldn’t face anyone – just wanted to scream “give me a break” – I know I will find the courage to do this but I am running on empty and sometimes feel if there is a difficult way to do something I seem to always have the more difficult option. I would really like the easy one for a change!!
28-03-12
The last straw yesterday was the dive show – not being able to go due to the op – not being able to try on BCD’s – spend my bonus, my reward to myself!!
That with feeling isolated made me feel the lowest I have in a very long time – just seemed it was all against me – just wanted an easy option – to scream give me a break!!
Well today the sun is still shining and my mojo is returning my tamoxifen are no longer the evil nasty drugs, but they could save my life – so like chemo I need to embrace them not fear them – I need regain my perspective and start my positivity again. I was predicting a future and looking back at what has happened - it has happened – it was how I dealt with it, it’s gone. If I dealt with it then I will deal with it now and the next if there is to be one.
I will find my mojo and return! 😁
TODAY WILL BE BRIGHER
PS had a fab call with Brov too
28-03-12
It was a brighter day!
Woke up feeling sluggish, headed off for the Reiki with Trish and I cried! Just really emotional – great session – she recognised I need a mothers care and asked about my ovaries as they wanted a lot of energy. Towards the end tears were streaming down from my eyes. She said I needed my mum’s healing that I needed to go to Devon – it would be good for both of us.
I couldn’t agree more, just realised how much I need her through all this!! Also recognised that I was trying to be so brave and strong and carry on but this had really knocked me- shaken me up and challenged me and that was hard to deal with. Just spoken to the nurse who empathised that this was good that they were giving me good treatment and looking after me – why is it so hard to see it?
So here I am sitting in the sun on the river on The Ship, contemplating life and I don’t mean to be brave all the time, it’s just what happens.
I can’t see the point of being negative, but being brave needs support, being brave is lonely. It’s one of those things where I know I can be strong but truly for the first time in this process I really truly have run out of steam.
I don’t want to see people as they will ask how I am and they wouldn’t expect my answer, I’m fed up, bored, frustrated, lonely and tired. I would rather be anywhere but here facing this day-in-day-out. I would like it all to go away. That’s how I feel, yet I go on and I tell people the positives, which to be honest they are.
The additional surgery is life scary, I know this, I know it’s crucial. I don’t need people to tell me, I know! But they are not me they are not finding new renewed strength everyday. They have not spent the last 7 months being drugged, cut, hurt and mentally challenged each day. I know I am 2/3rds of the way there, I know I can do it. It’s just sometimes I just don’t want to. I just want to be normal and don’t want to be fighting cancer- even writing it doesn’t seem real – it’s just another hurdle to face, another curve ball. I have got past the others I will get past this one.
Time to do some positive mind reinforcement!
Have I ever congratulated myself on how well I have done or what I have achieved?
Will the drugs I take bring side effects? If it does deal with them, but remember all the time I take them it helps save my life! It’s like the saying with the Chemo “even with my head down the toilet Chemo is my friend.” I never feared my Chemo, I embraced it and dealt with the side effects. I will do the same with the daily drugs – just visualise things I want to do better or change and visualise them done, clear and see if I can change thought process and now simply retraining my brain.
I’m feeling better, should have done this before instead of diversion or distraction. Just needed a couple of hours of me time – of writing and thinking and acceptance, just just relaxing in the sun. Still not ready for lots of questions, this has really knocked me and I can recognise that.
29-03-12
So I have just had a massive reality check.
I don’t have “normal” breast cancer.
I’m not a usual case in that I would have radiotherapy and that would be it – no, that’s not it.
1 in 10 to 1 in 20 women present with more than one tumour. Normally it’s more than so I’m unusual – luckily I can have both bits nuked but I’m not sure until today, right now, I realised or I got how serios it is.
I think this Ostrich needs to take its head out of the sand…she needs to face up to the fact she has cancer.
30-3-12
This doesn’t stop…went to bed thinking about it, woke up thinking about it. Now realise I need some time to;
1. Get away for some days
2. Get some counselling
3. Cancer groups
Positives – I have my dates, my arm is significantly less painful , the surgery is making sure the margins are right. The cancer is gone from my breast. I don’t have that racing uncontrollable anxiety that stops me sleeping. How do I get my head around it?
I need help to do this.
Spent the day crying and talking – Cath, Cathy, Sal and Toni all in one day and I emailed Helen.
Questions for Helen
1. Downgraded 3 to 2 – what does it mean?
2. How long will fluid keep building up?
3. Will it be drained?
4. Recommended councillors?
5. Groups?
6. Ever clear?
7. Perception get through this the fixed? – is that a reality?
I crashed today – It swirled and I cried, I felt a bit “why me” for the first time…ever? I questioned myself, my positivity, my ability to deal with everything and I cried, I cried a lot – I lost time. I didn’t eat, I couldn’t face it. I couldn’t find any strength to fight back.
It’s learning to cope and learning how to cope and how to deal with it. I used to look at that slogan and I never got it at all – why would you live with it I thought, you just get rid – I was rather naive methinks.
31-03-12
I have had my first hot sweats off the Tamoxifen – they were good fun!
Intensely wet but not long, well we shall see where we go with that!!
Feel very detached at the moment, like I did at Pete’s wedding – it’s all going on around me, but I’m not part of it at all. I’m watching it all but not taking part.
The energy levels are zip – ker-put, zero, gone. Not sure is it this to do with the tablets or just where I am. The time disappears.
Naturally/normally I bounce but right now I just can’t be bothered. I think I have waves of acknowledgement and each time the wave knocks me over …..each time I see a consultant I manage to get pulled under and when I pop out I’m exhausted.
It’s like having the diagnosis all over again. Each thing tests me, highlights and reinforces where I am and I go back under until I either go back under or I get to the surface…either way I am exhausted.
Maybe I need an old diving suit with lead feet. The waves can be huge but each time it comes I can breathe , I can survive , it will wash over me. It may shake me a little, but I can face it head on.
Looking back at what Helen said back at the beginning is seems that we can destroy them ‘cos of where they are.
Control can be taken!
I think that’s also part of the issue I feel I have no CONTROL
I chat on the phone and I’m upbeat but I’m pretty empty.
Then I have a moment of total clarity and I realise I am predicting the future, worrying about things that may never be.
All I can do is take control of the small things that I can change, my hair, making sweats easier, exercising more.
I need help to see the path through to guide me and show me how to think. There are too many trees in the way.
-I need to control the impact of the waves
-Manage loneliness sensation
-Learn how to re-energise
-If I look to the future to frame it positively
-To feel like cancer is not ruling my life – I am
-To ensure my head is strong and my body follows
-To find inner calmness not turmoil
-If I do get flattened how to successfully pick myself up and learn to move on
-To accept the disease
-To realise I will have setbacks, challenges and how to deal with them
-To understand it can be controlled
-The progression of the disease can be halted
-To learn to live with it… become friends * with it – not see it as the enemy
*Chemo was my friend, Tamoxifen is my friend – can cancer be my friend or is it something else – word isn’t right
I know how I deal with things mentally will impact my body – you need your head sorted.
Just looking back, last time I was spun out was in Jan when I saw Mr K – took me three days to come out of the spin, of the “I have cancer” waves. I was coming out of it on Wednesday this week, but then got smashed again on Thursday. So I reckon some more positive thoughts I may be out of it by Sunday.
Just in time to face surgery.
I need to contact work today and explain the situation.
Well it’s evening time and for some reason I feel all calm. I feel I can now deal with things. I wonder why it’s all changed but it has, now I feel so much better…almost back to normal.
How can it change so radically, I can do positive again.
I can see things, talk about mum being away. Accept things. Yet yesterday was unable to cope.
So its taking 2.5-3 days to sort head now??
It’s mad – I think the questions are really important to get answered but now I can cope again – today right now I’m OK again – how can that be?
01-04-12
So the storm has abated, my head has slowed and the turmoil has rested. I feel a lot better and the emotion has stopped. Inside there is still residue of concern but definitely heading in the right direction. I don’t feel filled with energy, ready to face the world, it’s still a bit empty, but getting there.
Need to work out whether to go to mums or not and need to work out a strategy for uncertainty – why assume it’s coming back…it may never return.
03-04-12
SO here I am back in Mt. Alvernia for a bit more surgery – I feel happier that I have spoken with Helen and Jenny. I called the beacon centre and AXA, maybe I will get some bits underway a bit sooner but at least I am underway from beginning of April.
I feel remarkably clam inside, worried yes, but OK, it’s odd. I have my questions to ask and I will and hopefully this will be it on the surgery front for a while!
Bit by bit we get there!
Well I had to wait until 4.30 to go down so from arrival at 12 I got bumped to the bottom of the list. Was nervous but ready sitting with Mr. K on the surgery table quite surreal really. He talked about the 19mm and said he looked at it like islands in the ocean and the 19mm was not all cancer so was only microscopic – like my nodes and this was also fibrous and good tissue.
I mentioned I could hardly see it and he said to be wary as it could be fluid – so then the anaesthetist put me to sleep.
Actually woke up in recovery but feeling really sore – morphine later back in the room. It was about 7 and I still felt very very strange.
I was wondering and a bit nervous about going home .
About 8 I saw Mr. K and he said no as I still felt woozy by all accounts it takes 3-4 hours to recover so I was cutting it fine anyway.
Actually everything hurt a bit more and was feeling very average – then Cath and Cathy turned up – perfect – it was great - they cheered me up no end and didn’t leave till 10. It was great and brought tears to my eyes –
04-04-12
Had average sleep, but was needed. Not sure about AXA but will see how that works out for a day care.
So it’s 8.45 and I'm feeling much brighter. It took until 11 to get over the anaesthetic so definitely was not right!
Glad I stayed in – it was the right decision. I feel tired but mostly glad it’s all over and I can move my arm!
06-04-12
“Oh where has my mojo gone” - it’s nowhere to be found. Just a feeling of heaviness – not quite sure where I am or what I am doing – feel totally lost – have got very stressed about work and what to do but when I read their mails they are totally supportive,, its pressure I am putting on myself which is ridiculous.
Physically now I am so much better, I look in the mirror and I don’t see a gaunt empty shadow. I see a face with eyebrows, eyelashes, a grin and tanned skin. Now I just need my head to catch up. It’s so tricky to be so up and down at the same time.
07-04-12
Have woken today lighter, I think Friday was potentially bad off the anaesthetic and yesterday was another dip. Today I feel stronger again – my physio on my arm has gone well – I can nearly get my arm flat!
My finger nails are growing back pink and I'm deciding what to do with my hair. I have a funny sparkle in my eyes. Today it’s not awful, today I can see through the fog and feel a smile and a positivity.
The liquid is building but we are 5 days in and its not as bad yet as it was painful – at 6 days before and that’s tomorrow so the melon is now a tennis ball.
You know I think the biggest, hardest, most difficult thing is the consistency. The not bumps but peaks and troughs I have and feel and sometimes I just can’t cope. Then I work through it and I can find the energy - each time gets harder and harder but I also think I need to leave my flat and work but be realistic too.
08-04-12
I have a lovely cough today but I slept and I didn’t go to sleep thinking and wake up thinking – I just slept
09-04-12
It feels better – I feel more positive. I spoke to Dad and he was concerned but I'm not negative I just had a realisation and had to deal with it and it takes time.
It has been a tough 2 weeks, mentally a huge 1st week to deal with, then surgery in the second and hormone tablets in it all. I’m entitles to have a wobble but I’m glad I van now put things in place. I couldn’t think of hols as I felt weak and rotten.
Lets look at it-
1 week in hospital
1 week to recover
1 week of extra LFO, hormone tablets, radiotherapy and scars
1 week of surgery
Yes, I'm entitled to be a bit knackered!!
11-04-12
Yesterday I went to work, people were lovely. I felt a bit of a twinkle and for the first time in a few weeks the mojo was returning. I need to top up the energy levels but Donna was trying to come back and say hello, I feel like that again today.
I feel like it’s a revolving around the treatments and actually it needs to revolve around events planned, just need to take it easy though, find the energy and find the path.
13-04-12
Sitting near the sea I already feel better. There is something hugely comforting about this house, about Mum and Dad about the feeling I get from it all. I woke up today with more positivity than I have felt in a while – something was returning.
Had a productive day, then off to see Mr. K. I found his bedside manner, he had spoken with Helen and obviously they are concerned – I was honest and he was too. He drained me, a lot less liquid and told me I was doing well and 10 mins later drove me home. And there is was a good positive consultant appointment – no curve balls, the margins are right, the liquid going down – honestly about how it will look and a realisation from Mr. K that I’m not superwoman but an acknowledgement that I'm doing ok and its ok to run out of steam. I'm not going to underestimate the radiotherapy – there will be side effects, there will be trying times but me and the soldiers have one more test to undergo.
I'm so proud of still being here and being strong today – I cried and felt so lost and now I feel like I'm ok again. Now I need to top up the energy and find more strength ready – it’s all going to be over soon.
I have realised that being at Mum and Dads is not just healing as Mum and Dad are here, but it is healing as I'm surrounded by people. It’s nice to be in a buzzing house.
14-04-12
Lovely day with Mum, a few ‘unhelpful thoughts’ popped into my head- they don’t depress me but I really wish they weren’t there! I'm not even sure I know what they are
15-04-12
They are gone – the sky is blue and for the first time in a long time I feel myself. I'm coming back, the thoughts are more positive and I'm feeling calmer inside.
19-04-12
What a great day
Today reiki was great and the hospital was good – gave £5 to a boy and made his day and gave my ticket away as someone gave it to me – it just felt right.
Physio was good, my it hurt and it’s unlikely my right arm will ever be normal, but I have great mobility in my left. Dr X was lovely and just reinforced how good I was today and how well I had dealt with this. She reminded me that it was ok to have bad days and sometimes feel overwhelmed and not to be so hard on myself. Came home and for the first time in ages and ages felt myself. I saw good in people, I felt good, but I felt good knowing I had cancer – it was ok, it really was. I actually really felt it, not just saying it, writing it or pretending – today I really felt positive. Those weeks were horrendous but off the back I think I have acceptance looking forward to tomorrow, looking forward to radiotherapy.
Dr X doesn’t think CBT is for me as it changes your thoughts to positive – we shall see….uncertainty is the key word.
I just got to bed bra-less and with no top on – momentous!!
Beware, Donna and her soldiers are on the way back!
20-04-12
Of to see a person about CBT or counselling – for some reason I welled up during and it was at that point we agreed counselling. Up to then she didn’t think I needed either.
Looking back at today I realised just by talking it made a huge difference – already I have taken key phrases and thought about them.
It’s about dealing with NOW – I should be kind to myself, I need to be realistic with myself about healing – monitor my expectations.
Something has changed – I don’t know how or why but it changed over the last couple of days – it is a raw beginning of acceptance. A move away from the washing machine into the real world – where I am, what I have, how to feel about it.
It wasn’t just the surgery that span me out – it was taking time to realise where I was – 5 weeks since surgery 1, a month of spin wow!! No wonder it’s nice to come out the other side. Need to watch my energy levels, take care of myself.
Be KIND to MYSELF
I learnt a lot from today and it wasn’t even a proper session. At some time I need to take the “brake” off but one step at a time – it’s in place.
I don’t want to be an ostrich again and I don’t think I am – something has changed – but I am still going to have counselling and unlock the fears, come to terms with them too.
I will not under estimate the radiotherapy – funny as I write this I often wonder why? Will I ever turn it into a book, a guide? One day I’ll re-read it all, I will look back and be proud of what I achieved – for the first time in a long time that feeling of calm reassurance is coming back. Its so much better for my healing – an inner courage.
I know the counselling will prompt thought, help me with the feelings of isolation and loneliness I feel.
It’s all going in the right direction again
The washing machine has been switched off
21-04-12
Was not quite as good today, but think it might be hormone driven. Slept badly due to hot sweats all evening and past few days have slept badly – need to look at whether it’s periody!! Feel more bloated and craving chocolate today so going to have a load.
Tonight I had a night out and 4 glasses of wine. Vix was awesome and generally it was just all good fun. Tara & Lisa birthday, Jayne was lovely and again everyone just talked about how brave I was/am – Am I? That shit really throws me, honestly it’s not like I have smashed through – big issues and as Mr K said there will be moments ahead, crisis moments – the scans will be full of anxiety – life will be a challenge.
The word is cancer and the reality is now.
The one thing I need to work with is the loneliness and the isolation.
But I know, I really know that MY body wants to fight this – it doesn’t want this – it wants to get fit, to shrink again and be healthy and be happy inside.
Lots of things but right now I really notice my bones. So very, very stiff…honestly it could get you down getting off the sofa like a old, old woman - the bones are shot, so tight, so achy, so heavy, so tired. I have drunk enough to ensure sleep, maybe I will wake up and the aches will be better.
It is interesting how tired the body is. Like I have constantly exercised – inside I feel that exercise is better for me, my body wants to be back to normal. I feel it’s fighting well 🙂
I feel brighter again
24-04-12
Bright Bright Bright
No negative thoughts
I feel NORMAL
Its slightly un-nerving but today I said “I had cancer”
Something has really changed. I feel so positive and normal, it’s actually slightly odd.
DREAM
I had a dream last night – mum (or a mum presence) was sitting in a big comfy chair, then the big wall/house collapsed all around it like a cocoon, but nothing touched the chair – chaos all around but the chair was untouched, standing strong and well….odd.
Just feel normal, it’s lovely and I’m not hiding anything or ‘trying’ to be positive, its just normal.
27-04-12
So worked all week – the first time in ages. I was really tired when I woke up but not drug tired, just a normal been at work all week tired.
Today went to see the counsellor and we had a good chat. I cried ¾ times but as she said the waves are getting less.
It’s about coping with uncertainty and realising that I could cope for periods of time. That I needed to take control and not let it control me.
That the slide down the walls was good and the dark period I went through was normal, just the delayed acceptance.
She saw my ½ full attitude and I knew sitting there I was struggling to feel bad, struggling to find negativity and it just felt normal.
I FELT normal for the first time since last August I felt a bit more like me, a lot more like me. Still felt slightly worried that I am not acknowledging myself but mostly and most importantly normal.
You know I am so proud of my body, what it has achieved and what it has taken, where I am, my soldiers are ready for the final stage and we will face it together.
I am proud of what I have done, proud of what I have achieved, proud of hanging in there when blackness and anxiety was pulling me towards them. I am who I am, I am an individual with my own cancer, my own disease, but now perhaps I can accept that a little more.
As the waves get less forceful and the tears less painful I can see the light. Daddy was right it is coming to an end and while there is chaos around me my chair stands strong, proud, strong, clean, untouched and safe.
I wonder what it meant but it odd to have a dream I remember – maybe like Trish said an inner courage.
She was right we are going through the gates and its beautiful on the other side.
I also thought when I started writing this that I’d never fill this red book. There was no point as we are almost there, it just goes to show that what I have been through has been massive.
As Patsy said a lot of people just don’t get it, won’t get it, can’t get it and it will change your perspective on things.
It has to, any big change/even does. She confirmed many things I knew, it’s how you cope/deal/live with uncertainty and any fall out but you can’t let it control you, rule you.
I realise now I have let the brake off , I have slid down the wall, wailed and crushed. That hopelessness is something I hope I never feel again, it just hurts too much.
The swirling of your mind never stops. I was thinking about the I met at Mt. Alvernia, the dentist who must be ½ way through chemo now – I wondered how she was and even thought to visit, maybe, I need to make sure I'm ready.
I’ve always known myself, but the tears and angst boys have caused me is all put into context. Somewhere inside me too is this feeling that I know I will find love and that it’s going to be ok, that I will have support for the future, it’s going to be amazing – I truly feel it.
I can say cancer now, without whining, I can talk about it now without putting it on or pretending – it feels good to be honest – it will be good to have written this in cas I hit a bumpy bit!!
I feel calm again, but calm is good, calm makes me smile – eyelashes and hair make me smile.
Funny, just had a thought about my hair and the bath – there are still things that well me up and there will be more.
If I was in touch with myself before I certainly am now!!
So many people have called me inspirational, I still think that’s a bit much, but I should be proud, I should be very proud.
