Struggling

 I am struggling to live at the moment.

2015 was the year I stopped living. 

Cancer has beaten me in the end

I have lost everything and everyone I care about

I never in a million years thought I would be living my life without my shadow, Wilbur. I had mentally prepared myself for Pickles as she was approaching but not him. He was my soulmate, my love, my life. He loved me so much and guarded me, always with me. I miss him beyond words.

My children grew up in the decade I was ill fighting cancer and now they are adults and have left or are about to leave. I feel as though my soul has been crushed.

So many losses in my life. So many things that I have had to grieve for.

I live in constant pain and it makes me tired. I get drunk so that I can escape this world just for the night. 

I hate life.

There is nothing I look forward to doing anymore. I dont want to do anything or see anyone.

I cant read books anymore or listen to music. I go out to places but the no longer bring me joy or happiness.

I feel as though I have no future left.

I hit crisis today because work are talking about return to office and I dont want to go back to what it was. I dont want to sit on reception as a sitting target for infection I dont want to be around people anymore.

I am struggling.

Wow Life Moves Fast

I am currently two and a half weeks post reconstructive surgery. Yeah! Didn't see that coming did ya? Neither did I!!

I had put the thoughts of reconstruction to the back of my mind, I hadn't decided what to do and was struggling with making a decision based on the horror and trauma I suffered at the hands of Chester hospital.

Two letters arrived ... and within a short space of time I had made my decision to accept the challenge and take the opportunity that had presented itself. Reconstruction.

I opted for a free flap diep procedure which basically means I got a tummy tuck and they made new boobs out of my tummy.

I was petrified when I went for my pre-op, even more so when I was told that my surgeon had been changed from Mr Graham to Ms Taghizadeh. However Mr Bennett who was part of the surgical team allayed my fears, he spent so much time with me explaining what would happen and reassuring me about the surgeon.

One thing that every plastic surgeon I have spoken too since Chester Hospital horror is that radiated tissue and implants do not work well together. That is the subject of another post though.

Ms Taghizadeh couldn't believe the state I had been left in, questioning the stitch mark scars and told me that I was a project. She reassured me that she would do her best for me and I believed her.

I was prepped for a 12 to 14 hour operation. The anaesthetist gave me the talk about all of the horrors one could experience after such a long operation but he needn't have bothered because Ms Taghizadeh broke her record and the hospital record by completing my op in 6 hours. I swear my mum had my back that day.

The pain was immense and being hooked up to four drains was a bit of a nightmare. The heated blanket post surgery was hell and I felt as though I was being cooked. The nurses monitored me relentlessly making sure that the grafts didn't fail.

So here I am, on the mend with new boobs.

I never ever could have believed that reconstruction would do so much to lift my spirits but I honestly feel as though I have my life back and that I can finally close the painful chapter that was my cancer.

Commercialise Cancer

I have had a pretty shit 6 years and without going into detail because lets face it, if you know me, if you have read this blog then you will be fully aware of my relationship with breast cancer.

Today I read a blog shared on facebook by a friend and WOW it really did echo exactly how I have been feeling lately. (Just click on the highlighted text and you will be taken there).

On Monday morning, following a pretty traumatic weekend with my teenage autistic son, I had the misfortune of seeing Victoria Derbyshires video diary being advertised on breakfast news. She is 47 and has just had a mastectomy. Shes decided to make this diary and share it everywhere to prove..... prove what???

Do you know what that diary did to me? It made me cry and it made me feel like a complete failure. I went out that morning and thank God for my horse and dog walking because I felt as though I had lost my fight against cancer, that I had lost every ounce of strength I had in me...... Yes Victoria I said my fight against cancer and NOT me being treated for cancer!!!

These celebrities in their glass houses really should put their brains into gear before they decide to spout off about their experiences.

Did she get chucked out of hospital 24 hours after surgery?

Did her husband have to empty and monitor both of the drains for 2 weeks?

Did her husband have to inject her in her stomach every day?

Did her husband have to change dressings with gangrene and rotting flesh?

Does she struggle with bone pain due to cancer drugs and treatment. Painful scars and reduced mobility? Are her hands inflamed so she has lost her grip? Do her insides feel as though acid had been thrown down them? Has she lost years of her children's lives because she has been busy getting poisoned in order to live?

Yep, you can tell I am pretty upset!

Its not just her diary though its everything relating to cancer.

Brave the Shave for example..... PLEASE do not trivialise hair loss through cancer treatment. If you CHOOSE (important word here being choose) to shave your head, then its your choice. You don't experience the sensations of crawling flesh as each hair follicle dies, and the soreness that comes with it. The nakedness of suddenly being exposed as a cancer patient. Not a choice anymore.

Then there are the parties. I get that people are trying to help raise money and awareness and that's brilliant, its great but excuse me if I don't attend or buy tickets for that function because it doesn't sit right with me at the moment. Having fun in the name of cancer.

You might have guessed that I am in a bad place at the moment emotionally. I think I am still processing all that I have experienced, the disfigurement and the losses I have had forced on me by the disease.

I think its great that people are talking about the disease but lets be careful not to trivialise it or to get drawn in to media driven publicity

Today I just had enough

I didn't have a great weekend. I won't go into detail but it left me feeling anxious and sick today.

Then on the news is this reporter who has just had a double mastectomy due to breast cancer and she's there in her hospital bed all bright and cheery saying she's not fighting cancer she's just being treated for it.

I burst into tears.

Lucky bloody you I thought to myself.

She obviously hadn't been chucked out of hospital the next day after the procedure with no after care. She obviously hasn't got a clue what it's like to live with the disease.

This week an amazing man Mike Peters is starting his 3rd fight with cancer and this woman's attitude really upset me.

I know people deal with things in different ways but not everyone gets 5 star hospital treatment. She made me feel even more like a failure.

Keep on keeping on

I never thought that I would ever say this but I am starting to accept the new me. The weird sensations of repairing tissue is easing as is the pain.

Time is indeed a healer.

One thing that is taking longer to get over is the tiredness and the way I don't seem to bounce back from illness as before.

I am feeling anxious about life in general too and that's not very pleasant.

The things that help with everything I am going through is keeping a positive mind set. Never ever make an excuse why you can't. ... a reason is acceptable as is a compromise but never an excuse!

The cadets. I love being a civilian instructor. To mix with an amazing set of young adults and to be a part of helping them to shape their future.

My horse. Yes he is my Guardian Angel. We live parallel lives and we give to each other unconditionally and from the heart.

My family. Without them I wouldn't be the person I am today.  They give me direction and purpose.

My faith.

I don't know what tomorrow will bring be it good or bad. I don't even know why I am here or why I have been spared but I do know that 3 cancers in 6 years = pretty shitty but I am alive and my heart is still beating.

Never give up on life. Just keep on keeping on.

Dip Dip Drop

I seem to have hit the wall.

I have been running in flight mode this year with little time to think about things. Living life on auto pilot as it were.

Now it's just caught up with me and I am facing what has happened and processing it all.

There are times when I want to run. Other times my heart races and I panic.

The fact that I am experiencing these emotions is very positive because it means that I am addressing them in order to move on and move on I will.

Cancer be Damned

How ironic! The content of my last and very recent post.

I have just learned of the passing of a childhood friend to breast cancer.

She was the same age as me, first diagnosed in 2010 and she has gone.

Such a brave lady who despite being so very ill never complained and fought with courage and hope right to the end.

Always smiling, joking and so positive she never gave up hope.

She was so pleased to have had her photo taken with Mike Peters from the Alarm I was planning on getting him and his family to sign a bear with a guitar for her. That won't happen now...

If one thing can be taken from her passing today it will be to live for today and never take the moment in which we live for granted.

As she is gone I am still here.

Why?

How?

Survivors guilt.

Grrrrr

I have put what has happened to me into a box and sealed the lid.

I can't think about what has happened to me this year because it feels as though I have been living as part of a horror movie.

I might be on the road to some sort of recovery physically but emotionally I haven't even started to heal.

The problem with the box that I have put into storage is that I actually forget what I have been through and as a result of that I expect far too much of myself.

I was offered my "dream" job working with horses as a carriage groom at Erddig, a place which has been dear to me all of my life.

It was only when my hubby pointed out the fact that it was too much too soon did I realise the time scale and I acknowledged what my poor body had suffered. It wouldn't be fair on me or my prospective employers.

So I have the range of emotions to deal with. ... anger, injustice, sadness and a feeling of overwhelming despondency. Will I EVER be ME again?

The strong warrior that I am I have taken stock and regrouped. Getting the job was a huge boost to my self esteem which has plummeted and it's given me the push to develop my career further and in other ways.

I received a copy of the letter that my surgeon wrote to my GP and was stunned to find out that my third breast cancer was in fact a relapse of my second but had returned more aggressively.

I am very lucky to have the NHS and the care I have received (apart from my recent surgeries due to cost cutting) has been amazing.

I owe the NHS my life. I am still alive to care for my boys who still need me and somehow I have a purpose in this funny old world to fulfil.

Life

Its been almost a month since I last posted. I have been busy getting my life back on track and writing has been the last thing on my mind.

I still want to do my photo idea which I covered in my last post but I am hanging fire with it until I feel the time is right and I do it in a way I feel comfortable with.

I have been enjoying getting physical again and the wonderful thing is, my back is getting less painful. Just shows you what carrying around two bags of sugar on your chest can do to you!

I am still coming to terms with what has happened to me though. Not sure if I will ever get over this episode in my life.

I get a few seconds of reality. Its like a wave washing over me, it comes and goes. I suddenly realise .... exactly .... just .... what .... has .... happened, and it feels as though my life has been part of a horror movie. As the horror registers in my brain, I instantly push it back into its box and slam the lid shut on it and carry on with my life.

I suppose my brain is still processing everything and by drip feeding in this way, I am not over come with the enormity of it all. 

I was thinking about my youngest son and how that a couple of years ago I was worried sick about his future, he was so depressed and sad, on a path of self destruction. He is now a handsome, tall and confidant teenager - I suddenly was overcome with gratitude! The realisation that I could well have died and not seen this transformation was like a cold shower. I cried.

Mixed Emotions

I am a week and a half post pain and infection so healing is happening within my body and I am starting to make myself strong again with exercise and clean eating.

My chronic back pain has re-started because I am walking more. I will have to have further visits to my chiropractor but all in good time..... baby steps, baby steps.

I was awake at 5am, unable to sleep so I listened to the Dawn Chorus. 

"Oh there's a dawn chorus breaking out all over the town"......

Oh my, it's the most beautiful music one can ever listen too. 

Sadly, 6 years ago, the chorus was stunning beyond comprehension but alas with the destruction of woodland and the building of houses in Lavister has pushed the birds away and it's no longer as loud or eclectic as it once was. 

However...... I am blessed! I still have my hearing to hear them and I still have breath in my body to be here to experience it. 

The pain in my lower back was gnawing at me, like a persistent ache so I didn't feel like picking up my kindle to read or indeed, getting up to welcome the day. So, as is usual in these sort of circumstances, my mind wandered .....

I don't want pity.

I don't want sympathy.

I am telling you this in order to cleanse my soul and my mind.

 Writing this blog has always been my therapy. Getting my thoughts and experiences "out there". Who knows, my writing MAY help somebody else ... I hope so.

I managed to categorise how I feel post mastectomy and failed reconstruction. I don't feel ugly, I don't feel sad or unlucky or angry........

I feel different from everyone else.

I feel like a reject.

I feel as though I am no longer attractive or desirable.

Yes, yes I know! I know!

Goodness, I am no longer a young girl. My body has given me two beautiful sons and battled cancer three times - I have lost the bloom of youth but at least with my breasts I felt pretty and now I don't.

I am crying while writing this..... See!! I told you it was cleansing to write and get my thoughts out there. Tears are the bodies way of washing away the dirt and healing the soul.

This will pass.

Life is good! I am alive and I am surrounded by good friends who have supported me and given me the strength to continue my fight.

Every time I stumble, a friend holds out a hand and helps me up.

At the moment, I am holding my friends hands in my mind. My friends don't realise this but their thoughts, gestures and messages are the hands which support my own.

Life is good.

I've Lost Count!!

So much has happened since 17th February that I have lost count on how many weeks have passed since my operation.

A week last Friday I had the stitches removed which had become embedded in my skin. Indeed, two stitches had tangled up with each other and were trapping a nerve hence my pain. Three syringes of fluid was also removed.

This could have been done on the Tuesday had my surgeon been available but instead I had to wait a further 3 days before my suffering ended.

However, the relief was almost instant and from the Sunday I gathered up my courage and started to go back to my horse care routine with continued help from my wonderful friends. I honestly don't know how I would have coped so if you are reading this...... Thank you from the bottom of my heart.

So here I am now..... my back pain has returned with a vengence but at least it's not a threat to my life and I know what I need to do to sort it out.

Spending this week with my boy has been the best medicine I ever could have wished for. Just being with him, smelling him, watching him, loving him has filled my heart with so much joy I could burst. (Don't worry, I won't burst because that would be rather messy).

At last, this part of my life is over and I am looking forward to the summer and making the most of life, after all.... you only get one!!

By Your Side

Love Hope Strength.

Anybody who knows me, knows that this is the charity I volunteer for and support. This charity was set up by Mike Peters (my hero) and is a cancer foundation.

The By Your Side campaign is to raise money for the North Wales cancer centres. You know that I have been fighting cancer since 2009 with 6 operations, 12 rounds of chemo, 30 radiotherapy and 18 herceptin not to mention the blood tests, heart scans, CT and MRI scans.......

And the rest!!!!

Really weird to see a friend on one of the photos M!!!! who is a tough welsh fighter just like me. 

Also Sister Wenna on 1.23 from Shooting Star Unit who took me under her wing.

You see, I have small veins so I am hard to canulate. It would take up to 4 attempts to get a line in for chemo so with 12 chemos, you can imagine how many canulas I had to endure.

Towards the end of my chemo I literally was a shivering wreck and the only way I could actually pull myself together to face it was to listen to "Fight Back" by The Alarm, this song gave me the gythryl to get in there and do the job.

Sister Wenna saw what I had gone through and knowing that I had another 18 shots of targeted chemo (herceptin) to go, she took me under her wing and made it her sole purpose to get the line in herself. She did this spot on for each session. The one she missed because she was on holiday, well, she arranged for another sister to look after me but she made sure I knew in advance etc. 

Above and beyond the call of duty!!

I will never forget Sister Wenna.

More recently they tried to canulate my chemo damaged arm and it was like driving nails into my veins. The pain was indescribable. It took me right back to my chemo days and I started shaking so badly. Totally relieved when my surgeon told them to stop and use my better arm.

All of these memories.

So what LHS is doing for Awyr Las and the By Your Side campaign is amazing and I hope that in the future when I endeavour to raise money for this I will get lots of support.

Love This Time of Year

I really do love this time of year..... SPRING....... fresh mornings and warm sunshine, its wonderful. 

I hope I have many more springs to experience on this earth.

I saw the surgeon yesterday for my post operative check. I now have no dressings on my right side and I am struggling to look at it. Itching like crazy as a reaction to the dressings which have been on for almost 2 months.

The other side is OK. She didn't expect to see pink skin so was pleasantly surprised. The drain was removed which erm let me say, was an experience. It passed from under my right arm to the centre of my chest..... yes.... will say no more on that subject!!

There is a small scab in the centre and now I will just have to wait and see how that heals. I am hoping that liquid does not leak out of it because that will mean having to have a VAC pump fitted and I don't want that.

Stitches come out next Tuesday so I am trying to rest until then in the hope that the skin will repair itself enough to avoid the VAC.

I am really enjoying the sunshine though, I have just come inside to rest from its warm rays. 

Bolt, my chinchilla rabbit is outside on the grass! His outside hut is due to arrive today and I am excited to see him investigate that!

He is such a gentle and loving rabbit.

I have had some beautiful gifts during this illness. One in particular springs to mind and I am going to post about it shortly - I will not go into further detail other than to say that the work involved, the comradely and team effort make it so outstanding.

Monica's Gift

RED LIPS!!!

OK - AND NAILS TOO

I have always had a great fondness for red lips......The brighter the better!

When I first started my battles one of the ways I would actually "arm" myself for the fight was to put on my red lipstick and get out there with a huge smile on my face.

With each round I have waged battle in this way.

This time has been different in so many ways.

I don't seem to have had the emotional strength this time. Maybe it's because its that three times is too much, or maybe it was the trauma of my dog grooming and council fiasco when I was going through diagnosis. I don't know why but I haven't had the strength to put on my makeup and prepare myself for the fight...... (is that a quote?).

My friends and the Alarm family are special to me and have kept me afloat throughout my darkest times. Sometimes my friends don't realise just how much they have helped with their letters, cards, gifts and messages.

I have had so many wonderful and significant gifts which I treasure and look at every day.

Monica is a lovely friend from the other side of the world and yet she went to the time and effort to send me a beautiful gift.

It wasn't an ordinary gift, it was something in particular that she wanted me to have.

Honestly, this friend could have known me all of my life because when I opened it I was amazed to see the most beautiful RED LIPSTICK I have ever seen in my life.

It wasn't just the beauty and relevance of the gift, it was the day it arrived, the timing could not have been better and the underlying message it gave to me was enormous!

It gave me the message LOUD AND CLEAR to put my red lipstick back on, arm myself fully and lets get this healing over and done with. 

This gift has given me the proverbial leg up back into the saddle and rather than swish about half heartedly on the ground, which is what I feel I have been doing this time, I am back in the saddle, armed to the hilt and facing the enermy with my former ferocity.

Thank you Monica!!! It wasn't just a lipstick you gave me!!!

Always the Trend Setter

I have just got back from my post operative consultation with the surgeon.

I explained to her how I felt so much better since the removal of the left impant and that the right implant felt "more normal" and as I would have expected both to have felt at this stage in recovery.

At this her reply to me was "well...... it's interesting that you should say that....."

When she removed the offending impant, it was intact and unaffected but the tissue surrounding it was basically rotten. The pressure was such that it was pressing onto the right impant which was protecting itself with the formation of a blister.

She said that she had never seen anything like it before! Trust me to be different!

She removed the dead tissue, infection and implant and thoroughly cleaned all through. 

So now its a case of let's see what happens.

Fingers crossed.... please pray that the infection clears and doesn't spread to the other side so that six months down the line I will be looking at just one reconstruction operation instead of going through all of this again.

I don't regret what I have done because I have protected myself against breast cancer. I have tried the first option and so far (hopefully) part of it has failed but it was dealt with quickly and so once the healing process is over I am in a better place for taking the next step.


I think I am just an unlucky kinda gal or one who forever has to be different!

Well I Didn't See That Coming!!!!

Went into hospital yesterday morning for an 11am appointment. The target was to change my dressings and VAC pump.

The right breast is healing nicely so the dressing was reapplied. In fact some of the scab had fallen away exposing new skin which is a great sign.

When the pump was removed it showed a piece of "black" poking through the hole where the vac had been. The nurses checked to make sure that it wasn't a piece of foam, thought it could be a scab ....

Alarm bells started to ring!!

Surgeon called.

It was confirmed..... the piece of black showing through was exposed implant.

Sadly, my radiotherapy damaged tissue and the area compromised by limited lymph nodes meant that infection had got in, necrosis had killed both layers of skin and tissue and the only option was to remove as an emergency because of the risk of sepsis.

I had to wait around for 5 hours because I was at the end of the list.

The operation itself only took an hour and the aim was to remove the implant and any infection. Remove the necrosed skin and scar tissue from this and my 2012 op.

I was discharged the same night with a drain fitted and feeling rather wobbly and still in shock.

I will have to wait 6 months for the tissue to heal before I can think about further reconstruction and it will be 12 months before another implant can be introduced.

The options for the future are liposuction which is a new procedure then possibly an implant on top but only if necessary or having part of my tummy tissue used to make a breast.... OR I don't bother!!!!!

So thats my news for now. Not what I expected but at least I will hopefully start to heal alot quicker now.

5 Weeks Post Surgery

I tried to blog about my VAC machine a few days ago but I just couldn't access it. Not sure what the problem was, maybe it was the links I had put on there but I ended up having to delete it which is a shame because I put alot of effort into that particular post.

When it comes to healing post surgery I have discovered that things can change in a day. This time last week I saw my surgeon and things were going really well but by Thursday my left breast had "exploded" - ok, slight over reaction there. It had a build up of seroma which leaked out of a hole in the wound. There was "slough" which is a medical term for dead and dieing skin (gosh on this cancer journey its amazing what you learn).

YUK!!!!

This isn't mine by the way!!

So the surgeon debrided the area and decided to fit a VAC machine to help pump away the seroma. If a seroma is left to accumulate it CAN turn into an abcess which apparently isn't a good thing when you have implants.

I couldn't feel anything apart from pushing etc because the nerves in the breast area are damaged. It still didn't stop me from pulling a few faces just at the thought of what she was doing. Yikes!!

The leaking hole is made slightly larger in order to accommodate the foam and machine which is then pressed firmly down and sealed so that its air tight. The seroma is then drained into the machine which is supposed to increase the healing time.

I certainly hope so because I have had too many set backs.

How do I feel 5 weeks post mastectomy and reconstruction?

I feel itchy, sore, swollen. The pain isn't as bad as it was initially and at least it doesn't keep me awake at night but its not comfortable. The added weight of the VAC machine doesn't help along with its FARTING noise!!

I am totally fed up because I didn't expect to be as I am right now, I thought I would be virtually back to normal but for whatever reason be it the infection, the seroma, whatever its been delayed and I think it will be quite some time before I am pain free.

The other thing which shocked me was the size of the black scab on the breast. The right side is covered by a pad and is healing very nicely but the side with the pump attached is covered by a see through dressing. 

Not mine!!!

The radiotherapy damaged skin has died and left behind the scab but as the surgeon debrided the area she checked and could see that the second layer of skin was healthy and when the scab goes it will leave behind healthy skin.

I missed volunteering on the Love Hope Strength Foundation stand at last weeks Mike Peters gig in Central Station, Wrexham. Gutted to say the least! 

I get so frustrated at missing out on life so much by recovering from surgeries and treatment. Lets hope that this is the end of my tussle with cancer.

I do feel that I have been living my life with a monkey on my back.

Lets hope this monkey is well and truly jogging on.

Week 4 Post Surgery

I had my check up at the hospital today and the good news is that my wounds are healing nicely. 

There is a build up of fluid on one side but not enough to aspirate. They have to weigh up the pros and cons of draining the fuid vs getting an infection via a needle hole.

I felt very sick and tense before my appointment. I thought that I was coming down with something but once it was over and done with I felt much better. So nerves it was then.

I am still sore and moving is difficult but I am pushing myself more now in the hope that by next week I will at least be able to drive and perhaps starting to care for my boy again.

There have been times during this surgery that I have wondered why on earth I ever bothered with having a reconstruction and although they feel totally weird I am sure that with time and as the swelling reduces I will get used to it and consider the pain worth it.

Boobs!

I have never appreciated the true value of boobs before. I have taken them for granted and to be honest with you, I give you this piece of advice.......

"be careful what you wish for"

Sporting a 32F / 32G cup I have wished for smaller boobs and now having had 3 surgeries on them I don't have them anymore.

Well.... I do have them but they are not like my own! They have been put there but I have yet to mentally adopt them.

32C - wish I looked like her as well!

More than a handful is a waste so they say.

Alot of breast tissue was removed and I think I have explained in earlier posts what they did. I am hoping that as a result of this my chronic back pain will be gone.

Its been an assett carrying my extra weight for the last 6 years. Its as though my body kind of "knew" what was coming and the size issue has helped me to keep a decent rack of boobs.

Now however, I need to diet. I need to lose this excess weight I have been carrying around all this time so that I can show off these babies and accept them as my own.

I don't know how I am going to to this or when.

Now is not the time. I am still on antibiotics and although I have intense itching today I still have fluid build up and pain.

I am just looking forward to getting my life back on track and being able to do simple things.