Breast Cancer Returns

Getting the results

2007-10-11T20:35:00.000+01:00

Results day is here at last. Woke up in terror with my mind throwing up all sorts of scenarios but there is a predominant one, that of hearing my consultants voice saying that I have three months to live!!!

I phone my warrior male friends who have been with me every step of the way with this cancer and tell them that I am really scared and want my Mum (who is dead) and in reality would have been too scared herself to have been of much help. However in times like these a Mum is a good person to have.

I am offered Reiki by one of my friends which is great. It did calm me down a little bit. My sister arrives and at 11am we set off in the taxi for the hospital.

It's like going to your death. I feel sick, sweaty, numb terrified and angry that I am in this position again. Shit! This is not fair! This is the sixth time my family and I have been left waiting for the results and it does not get any easier.

You can smell the fear in the waiting room everybody looks really stoical to me where as I have the feeling that I am looking terrified. I can't take up the offer of tea or read a book except just keep moving my crossed leg in agitation.

The oncologist, surgeon, radiologists etc all sit in a joint meeting discussing your case. It's all very joined up and confidence building as they all look at what's up with you and give their expert opinion. I see my surgeon Mike and he gives me a little smile which gives me hope. Whilst waiting for these results you scan the doctors for any tell tale give away signs as they are reading other peoples names out.

Finally after what feels like waiting for twenty four hours my name is called. Now it feels like the walk on death row......I get a glimpse of what it must be like to walk to your impending death. Images of Mary Queen of Scots arise as she is going to be executed etc ... What the fuck is going to be said.....

Phew! We all breathe gain the cancer has not spread.... They want to do another scan just to be sure....another wait..... bollocks! My young enthusiastic oncologist insists he is bouyant about a positive outcome. They just have to satisfy themselves that it is all okay before they go ahead and treat the right armpit locally with surgery/radiotherapy....

He says he is sorry I have to wait for the results another fortnight!!! I dont know why but I start to feel guilty/ashamed of having written "Hell on Earth". What will he think of me, this nice doctor who has just told me that my organs are clear of cancer.

This is exactly why patients don't feedback on the pain of waiting for results....the pain dissolves in the ecstasy of hearing good results. It's like experiencing the pain of having a child.... it's never again until the child is born and then all is forgotten.

I feel as if I have jumped out of my box when I wrote "Hell on Earth". Patients are meant to be compliant and not question the system....oh well.....

My family and I leave the hospital in a daze and after calling into our local cancer care centre for a debrief session we head for the nearest hotel for champagne and celebration that I am not facing "three months". I feel totally wiped out I am starting to come down from the andrenalin rush....

I feel jubilant this morning and I have decided cancer or no cancer to live my life to the full. These waiting periods have made me fearless. I am going to live the rest of my life as if I had three months left. I want to put two lines under the cancer no matter what comes my way and live life to the max taking all the opportunities out there.....watch this space......

Five days and counting

2007-09-20T17:00:00.001+01:00

Today I am in my fifth day of waiting for the scan results. I will know on Tuesday 3rd July if the cancer has spread. Surprisingly I don't know if its because I have cathartized my feelings on to paper with "Hell on earth", but i feel calm at the moment and able to get on with things. Well that's what I am feeling today......

Nuclear Medicine !

2007-09-18T10:00:00.000+01:00

Today, I have just been to get all the scans done to frightening places like my liver. bones and lungs. I really hope they are clear.

My daughter and I go to a weirdly named department called "nuclear medicine" It has got the worst waiting room imaginable. Half the overhead lighting does not work...the paint has not seen a lick in 25 years and opposite where the patients sit is a huge picture of the most miserable looking faces possible staring into the miserable faces of the patients opposite...

I feel one of my feedback letters coming on........

Laid out in my flamenco dress !

2007-09-14T16:02:00.000+01:00

The first night after being diagnosed is always the worst for me. My mind wants to throw up my funeral and what I will be laid out in. The last time it was my flamenco dress which I had to laugh at it was so tight i could hardly get it on for a flamenco performance I was doing. So how the undertakers were going to fit my bones in to it ......

My mind likes to give me the scenario of the hospice bed scene with me lying in state looking serene giving audiences to all my loved ones and friends.... What a lot of pretentious shite...the mind, never trust it....

I am feeling however the sadness and the anger at possibly having my life cut short. I don't fear death its just I have lots left I want to experience in life and dont want to go yet.... That's the struggle I have. It's not with death itself, that's inevitable, it's with the timing...

Feelings of Peace and Acceptance

2007-09-13T08:54:00.001+01:00

My Doc tells me of some other drugs including chemo. I am thinking how much can my poor body take. I dont take any of the technical information in.....I just want my mammy I want someone to come and take this pain away its like being in a bad dream....

The Doc makes arrangements for me to have my organs scanned to see if the cancer's spread again there is a wait there is always a wait......

Just after walking out of the Doc's office I experience a feeling of enormous peace and acceptance that the cancer is here it aint going yet. It has to live around me not me live around it.

What I had been doing is living from one chemo to the next hoping that I can get back to normal in periods of remission. There is no getting back to normal. I have to learn to live with it even through the bad times there is no putting my life on hold anymore for when I feel better.

Life goes on and I will be playing it to the full whether I feel shitty or not.....life is too short and I don' know how much longer I have. I have to find a way of normalising this cancer.....

My daughter and I finally get away from the hospital and decide to go for a pizza. I hadn't eaten all day and I feel like writing to Pizza Express sharing with them what a comfort a "four seasons" pizza and a bottle of chardonany has been in all of my three diagnoses.

Results day arrives and I am scared

2007-09-11T18:56:00.000+01:00

Today I get FINALLY the results I am so scared...I go to the ward where I get my Hickman line for my herceptin attended to. It's there when I notice I may have an outbreak of shingles...help I'm falling apart..

I am told that I need to stay in isolation till I am seen by the Doc for the results.

The doc comes over and I can tell by his face it aint good news the Herceptin has failed. The docs were looking to that to keep the cancer in check. The lump was cancerous and twenty nine days after the chemo finished the cancer returned!!!!

I am surprisingly calm, probably numb. This is the third diagnosis of cancer in 2 years. My daughter is distraught and for a moment my oncologist looks worse than me. We stay a long time in the "awfulness" that it has come back yes.... well hurry up doc what have you up your sleeve now.....

Hell on Earth 2

2007-09-07T16:30:00.000+01:00

I sent "Hell on Earth" via my local cancer group to the Head of Surgery and to the Head of Pathology. I did also enclose a suggestion that a written explanation of the waiting times alongside an acknowledgement for the distress patients experience should be considered.

The aim of writing "Hell on Earth" was not only for me to find a channel for my anger, fear and sadness at the cancer possibly re-occuring but also to "wake" the staff up including my doctor who are colluding conciously and unconciously with the "this is the way things are round here".

Hell on Earth

2007-08-29T13:27:00.000+01:00

I find it hard to confront the medics with their thoughtless remarks which they make a lot. Most of them are not trained how to be emotionally equipped around patients I find in general the Docs are brilliant cancer docs but apart from my surgeon and oncologist most docs suffer from the lack of emotional intelligence training.

The reason why I find it hard to confront in the moment is that the cancer can render you to a very vulnerable state. I do want to be more authentic in the moment so watch this space....will do it with compassion and love.

The wait for results is like a hell on earth I decided to put my thoughts on it on to paper and I wrote a great piece challenging the wait. It was really cathartic to do it and I was really proud of the way I was able to be open with my feelings yet at the same time keep in mind the frustrations and limitations the NHS staff work under.

"Chunkier glands" ...very helpful

2007-08-28T10:54:00.000+01:00

I am back from London waiting to see the radiologist who will do the scan and then if needed the biopsy.

I was called into the scan room. The lights were darkened and I got this jelly put on under my right armpit. She then said after examining the scan that "my glands were more chunkier than she would like". How fucking helpful is that comment to me!!!! We know that love that's why I'm here!!

Doc confirms there is a lump...

2007-08-27T15:21:00.000+01:00

Saw my Doc who has confirmed that there is a lump... shit no, it can't be! I have been told it may be linked to an infection with the lymph glands swollen up. Told not to worry too much.

The Doc means well but it's so silly to say "dont worry"... "dont juump to conclusions". What the fuck else am I going to do !

Then there is this fucking waiting ...waiting for the scan then waiting for the results...

To be fair there had to be a wait for the scan as I am going to London for a conference and to see my son my oncologist gives me the next best date.

I leave his office in a daze. I am just hoping the lumps not cancerous.

I meet with my daughter for something to eat. We talk ourselves crazy coming up with five thousand reasons why it could not be cancer. We are so much trying to convince ourselves!!

Meanwhile I get a urinary tract infection, so I am hopeful that the "Lump" is connected to it.....

29 days since my chemo finished

2007-08-25T14:59:00.000+01:00

It's twenty nine days since my chemo finished and I have just felt a pain under my left armpit whilst reaching up to get my porridge. I am seeing my onocologist tomorrow for a routine check so will alert him to it.

Chemo gone... Energy Returning

2007-08-22T10:24:00.000+01:00

Now that my chemo is now well out of my system the fatique is leaving quickly which is a blessing and I am getting my energy back quickly. It's great waking up in the morning and not feeling as tired as when you were when you got into bed!!

It's great to feel normal again. It has been twenty one days since my chemo finished and apart from the bloating in my ankles and feet, there are no other side effects . I am now starting to eat healthily again and losing some weight.

Boudecia meets Eva Peron versus the DWP!

2007-08-16T09:04:00.000+01:00

This morning I get the news that I have been turned down for Disability Living Allowance. It's a joke applying for this benefit.

The staff at the DWP are not medically trained and therefore have no idea what Iam going through with the chemo and how it affects me on a daily basis .They have made their assessment on my Doctor's report which does not mention anything about how I manage on a daily basis.

I am rendered a liar and my only resource is to go before a tribunal of three people; a lawyer, a retired GP (what do they know of the daily management of chemo) and a person from the glorious Dept of Works and Pensions!!!

I put my case and I am well equipped to do that but for most sick and vulnerable people they fall at the first hurdle of being rejected on paper.Thats what the DWP want and the systems are set up to reject most applications. It's almost as if the application process is designed to wear you down enough that you will give up applying which actually happens in most cases!!!!

Not in mine it doesn't... Boudecia meets Eva Peron versus the DWP and I will win....

Appetite not back yet...

2007-07-24T13:12:00.000+01:00

Not got my appetite back and food remains a problem. Most nights I don't feel like making myself anything and usually the temptation to graze on something tempting but not nourishing is great.

I feel tremendous guilt with my diet. I know what a healthy diet is and most of the time I am there, however chemo plays havoc with your hormones and I get cravings like just when I was pregnant with my two kids.

Most of the time during the chemo I have been comfort eating and eating all the wrong food. I do get angry though with the terror around diet if you have cancer. I know there is supposed to be a link between dairy and breast cancer and I still eat it .....

Millionaire by 3rd August 2009

2007-07-23T16:41:00.000+01:00

Started a "How to be a Millionaire course" this is fabulous as I have made a pact with a friend that we will be millionaires by the 3rd of August 2009 How we will get there I do not know but we can have fun attempting it Being on the course directs the focus away from the cancer and like doing the flamenco gives me a break from it.

Flamenco brings energy

2007-07-19T16:35:00.000+01:00

In all of the tiredness bloatedness etc I have started back at my beloved beginners Flamenco class I was really self-conscious tonight. I know I look as white as a sheet and wearing the "cancer look" scarf !! However I am so delighted with myself that I actually got through the hour without keeling over. I actually felt energised doing it!! My daughter commented on my return home that I looked better in ages. Doing what you love does work!

Aaah... A Response

2007-07-18T08:45:00.000+01:00

The Lymphodema specialist gets in touch thanking me for my letter and she is going to review the referral procedures...well done to her and to me....

4 Week Wait for Appointment

2007-07-17T14:40:00.000+01:00

Go to the hospital today to be told that I have to wait 4 weeks for an appointment I am not happy about this at all i need a diagnosis or a reassurance about this soon. I decide to write a letter to the Lymphodema specialist oulining my concerns and giving feedback on how the referrral was handled which in my opinion was not well given there was no apology or explanation.

Whilst overall my treatment has been great I get pissed off with the cavalier way that the NHS treats patients at time ie not offering any explanation apologies etc There is a whiff of "you are lucky you are getting this treatment"that I have an antennae up for and I will comment on it If I find it.

What I have discovered with all of this is that I have a knack of writing really good letters which dont pull any punches but are still able to be heard which is important. I am concious that no one wants to read a rant and that I do believe that most people are doing their best within the resources they operate within tis just that staff can become "unconcious" around patients and their needs . Systems are not questioned collapsing into"thats the way it has always been" Patients are put into a box which is marked "compliant" no way is that for me I like to ask, like children do, the question " Why" It is not always appreciated by staff but hey ho .......

Lymphodema and bloatedness

2007-07-14T10:31:00.000+01:00

The bloatedness is all over my body but there is a worry now that I may have Lymphodema in my left arm which i need like a hole in the head. Lymphodema can happen if you have had your lymph nodes removed at the time of surgery which had happened to me

Jabba the Hut look-a-like

2007-07-12T13:06:00.000+01:00

Have family reunion today with my sisters and brother in law and my two children Its fine although I am feeling like the "sick" relative and I get pitying glances from my older sister.

We are meant to be celebrating the end of my chemo but i feel like shit look like Jabba the Hut and feel less like celebrating and more like wanting it to end so I can crawl into bed

Tired and bloated...

2007-07-11T14:00:00.000+01:00

Feel very tired and bloated today and my eye is driving me mad It streams water all the time and leaves me looking as if I have been crying all night . Maybe my body is crying the tears I am not crying myself ..Either way I look awful and my vanity ego etc is taking a knock....

The drug Herceptin ...

2007-07-10T13:44:00.000+01:00

The drug Herceptin ... this was a drug that was hailed as a wonder drug that a lot of women went to court over as it was not on general prescription . I had originally declined Herceptin as it has implications for the heart and I felt that at the time when I was finishing my first round of treatments that my body had had enough . I was also never given a compelling argument for me taking it . At the time it just felt right not to take it However when the cancer came back the medics strongly advised Herceptin and I took their advice.

Last dose of chemo

2007-07-09T09:47:00.000+01:00

Just had last chemo thank god! this regime has been really tough I have really had a glimpse into feeling what it must be like to feel old or to be an elderly person. Due to the fatique I have had to walk really slowly.People keep bumping into me and getting irritated with me probably because I dont look elderly and should be walking faster I am also feeling very vulnerable on the streets because I am standing out not fitting in with the herd of fast walkers.

The streets where I live are very wide and I panic I wont be able to cross the road in time before the lights change god what it must feel like to be an OAP!!

Feeling like shit today just dont have any energy at all I am going back to bed

Feel better today but still feeling weak going to the theatre with a friend so looking forward to that just doing something normal been to the theatre dont know if it just how I am feeling but I did not enjoy the experience it was ok the characters of the play just dint come alive for me.

This last dose of chemo really taking its toll now feel awful just tired and weak it should be out of my system by the middle of May I have got sixteen days to go.......

Have managed to get the energy from somewhere as I have eventually managed to put he finishing touches to a book that has been a four year project I am getting it ready to send to an editor for polishing up I feel elated and surprised at how much effortless effort was required to finish it.

Go to see my fantastic new enthusiastic oncologist (enthusisam is a real plus in an oncologist!!) for a check up really moan about the tiredness to him . I am sure the medical fraternity will look back in a hundred years and say of chemo....."we didnt give that to patients did we.......
My oncologist's prognosis for me is that the cancer will come back mine is that it wont its not that Im in denial that I have a very aggressive cancer.

My chemo sessions...

2007-07-04T08:46:00.000+01:00

My first two chemo sessions were "if thats it bring it on" However after the third session everything changed...I started to get terribly fatigued I have never noticed benches when I have been out walking before before but I need to keep a look out for them now as I am getting more and more breathless and need to sit down.

I live in a flat which is on the second floor so climbing the stairs is a nightmare I feel like an old lady I just dont have a lot of energy and have to stop every couple of minutes I feel really sad at this as I used to come up these stairs at a brisk old trot .I know I know that my energy will return but that is no comfort just now .

Most afternoons I have to have a nap and I have been enjoying getting into bed with a good book and just drifting into sleep. With fatigue though you never feel rested when you awake it a pain.

After five chemo treatments I am feeling tired, fat, frumpy and ugly .Fat because I have comfort ate all through the chemo I have had loads of cravings for sugar and curry probably the worst combination you could take for cancer I feel so guilty for eating all this crap and I get really irritated when \i get dumped on by well meaning friends who want to remind you of the links between dairy and every other bloody thing to breast cancer Fuck off I just cannot exist on raw food Yuch!!

Frumpy cause I have put on weight and as i feel bloated I am reduced to wearing the same elasticated trousers etc like an old woman.

Ugly because due to an allergic reaction to the chemo i have constant watering eyes which are driving me mad I now cannot wear eye make up i was enjoying being able to do this as with this chemo i did not lose all my eyelashes so could wear mascara Now that all swims off my eyes with all the water activity .

I know that beauty comes from within but I am looking and feeling pretty shitty and as white as a sheet ...help!!

When I am taking a shower I am forced to look at my chest area. The reconstruction that i had done in 2006 is fantastic the surgeon did a great job however I am still missing a nipple .... Sticking out from under my neck is this long piece of tubing .....great I know I will feel differently post chemo but for just now its hard to look at the white face and the body I feel somewhat disfigured. As I am single its hard for me at the moment to feel that I will ever meet someone.... how do you explain all of this....

My New Oncologist - A Breath of Fresh Air

2007-07-03T11:10:00.000+01:00

I met my new oncologist he was a breath of fresh air as he was enthusiastic, was interested in me as a person and not just as a breast!! and respected my wishes for not wanting to hear the 175 side effects of the new chemo regime I was about to receive nor did I want to hear about any depressing scary statistics he had to hand No thank you i will take my chances in ignorance.

My new regime of chemo called Taxotere and Herceptin started on the 9th of January and as i had problems with my veins my doctor wanted to recommend me for a Hickman line and i had one inserted on the 24of January under local anesthetic A Hickman line is a large piece of ugly fine tubing which was inserted just under my neck on the right hand side I blagged to the surgeon that I was an actress and needed it to be discreet as possible.

However such is the design of the Hickman Line that its hard for me to disguise it under clothing no matter how much I try and how much I try to hook it up out of the way. The line however is a god send when I am having the chemo or the herceptin no longer do I have to put up with having my hands inserted into hot water to pump up the veins or have to endure the agony of failed needles into veins attempts!!!

Now I buy my magazines and a cup of tea before my chemo get hooked up which takes seconds and I just sit there hands free reading the time away.

Just after the first chemo session I started to lose my hair I thought the second time around I would be ok as I had lost all my hair with my first chemo in Sept 2005. How wrong I was.... I was really upset this time to have my head shaved I was hoping to keep some of my hair but it was not to be.

The last time I wore a wig which was ok but I never felt it was truly me i never felt authentic in it . I got another wig this time but i have hardly worn it as its very itchy. I use a scarf tied very nicely into quite a trendy turban its more me and I feel more comfortable with it .

My sixth and last chemo...

2007-07-02T16:23:00.000+01:00

I am due for my sixth and last chemo on Tues the 24th April it cant come a day too soon However what I won't miss is the steroids which I have to take on the day before my treatment and for two days after that The steroids wake me up in the middle of the night with such energy that I could do all my housework and the flats above and below me its sooooo annoying to be that awake in the middle of the night!!! The steroids also put my sleep out for the rest of the week an dinto the nesxt week I am just getting back into a pattern when we are off again Grrrr

Tomorrow I have the district nurse who calls to take my bloods from my Hickman line to ensure that my white cell count is up enough for me to have the chemo on the Tuesday Its a palaver getting all the stuff out for them and I am anxious about infection as Hickman lines are very prone to infection I wont allow the nurses to use my towels as no matter how clean the towels are I prefer that they use wipes. I dont think that has gone down very well.....

Although I am grateful to the distict nurse service administering to me in my home, I feel resentful as I feel very much like a victim in my own home. The nurse's dont mean anything by it but they get things for me ithat I could easily get for myself. I am not infirm.....

Why do hospitals leave you waiting that long...

2007-04-22T22:23:00.000+01:00

Why do hospitals leave you waiting that long for results I suppose they need to be checked thoroughly and it was over Christmas I was doing a loop de loop with anxiety I was so sure my number was up .As the cancer had returned surely it must be in my organs must it not??? My mind tried to help me by throwing up scenarios such as the doc got the diagnosis wrong to being laid out in my coffin.

I fantasised being laid out in my flamenco dress that I wore at a Christmas Flamenco evening I had been taking lessons for three months Afterwards I had to laugh as i could hardly get in to it when i was alive never mind in death There would have to have been a lot of bone crushing!!!

We all tried to put a brave face on over Christmas but it was excruciating My sister cooked a great lunch but somehow I was just not hungry.... some of her friends came round and we did our best to play trivial Pursuits but as nobody including myself was mentioning the relapse it was like having a huge elephant in the room..... really difficult times for me and my family

I was due back in hospital on the 28th December for the results and on the 27th I was going to meet a friend for coffee when I noticed a bus coming round the corner I was so racked with the pain of anxiety i very fleetingly considered throwing myself under the wheels.

That would have been a disaster as after a very short wait on the 28th I was told that my organs were clear of cancer I remember holding on to the Doctor's white coat as my legs gave way with relief I felt I had been handed my life back.

2007-04-22T22:18:00.000+01:00

On the 13th of December I finally went along to my breast unit as I had a pain in my left hip and thought it might be bone cancer that came back clear but they biosied my left breast at the same time and I got the shattering news that it was cancer I then had to endure a week of "hell on Earth whilst I waited to hear if it had spread to my organs!!

2007-03-11T06:07:00.000Z

After only five months of remisssion my breast cancer returned on the Ist of October 2006 as a red blobby rash on my left breast .I rushed to my GP to be told that it was only shingles!! Nobody had told me that breast cancer could be a rash so I willingly believed what my GP was telling me and colluded in his and my own niavete around the various ways cancer can manifest itself. This went on until December 2006