Cancerverssary

Five years ago today the world was turned upside down and inside out. I was preparing to go to the One Stop Breast Clinic. I truly did not believe it was anything other than a fatty lump, age related, something and nothing. Clearly I remember the moment, “it’s suspious..I am going to take lots of biopsies”….I am pencilling you in for a mastectomy next week”.   Cancer? Me?   I was due for a heart attack , there was a strong family history, I couldn’t have cancer, and yet I did.

That was the start of an incredible journey, the good the bad and the just plain awful. There were a few times when we didn’t think I was going to make it. Yet here I am five years on and still kicking.

Any major life event makes you look at things with a different eye. Today I am very grateful for my family and friends who came through this experience with me, supporting me, loving me and giving me strength. Everyday I am grateful for what I am, for the simple things I can do, for having a shower, being able to walk on the beach, for existing in the world.   Life of course is not all roses, life can be tough, and sadness is all around us at times.   I am different yet the same, but I am stronger in many ways, and so much more appreciative of life and living.

I was asked during treatment what I would say someone said you only have five years, and I said “I would take it and be grateful”. Now that five is up, I would like another five, and another! No one knows the minute that there life will change forever, feel what you feel right now,  look at what you can do not what you can’t,  and be happy. Happy 5th Cancerverssary to me.

Just another day

After all the formal cancer treatment ends, you are cast out into the world again. Don’t get me wrong there are support groups and help sites aplenty, and I have utilised them all. A new you, a damaged, shocked, bemused but grateful to be here you. The advice is “go off and live your life, enjoy,  try not to worry, ..but be vigilant. The juxtaposition of these polarised words are as hard to live with as you would imagine. Everyone finds there own way of coping. I live what I think is a healthy lifestyle, I exercise, I meditate, and mostly I am happy and positive.

At my last appointment another lump was found. I declined having it biopsied, I feel all the operations have caused so much trauma and that is causing more lumps to form. The consultant was less convinced but agreed to follow the  wait and see approach. Rescan in six weeks, if it’s grown a biopsy will be taken. Six weeks fly by, Tomorrow is the next scan.  My positivity and strength fluctuate on a daily basis, but never more so at times like this. Looking well, feeling well are hopeful signs which can belie what ‘lies beneath’. Be strong , be brave be positive, good advice but hard to comply with when you feel weak, feel scared and fear the worst. Tomorrow never comes, live for the moment, aargh! I could scream, I know and believe these things, but right now I am afraid and feel sick, life could change again depending on tomorrow and the results thereafter.  Yet somehow we find the strength and fortitude to get through the day, to lie there talking while the scanner tells your future, and to live with hope whatever the results. Just another day, but for some it can be a life changing day. I am much more sensitive now to other people whose “just another day” turns out to be a life changing day.

Photo.  Cheers! From me and my “bestie”!

from me and my “bestie

“Just put that horrible time behind you”” and others phrases I dislike

Still Smiling!

Here I am again. nearly two years since my diagnosis and doing “fine”. There is an acronym for fine, Fucked up,  Insecure,  Neurotic and Emotional, well yes that just about sums me up nicely!   Asking someone to just put cancer behind them, to file it away, is in my opinion,  like asking someone with no teeth to chew on a bag of cashew nuts!

I am not “fine”, I am different. I look in the mirror and I look well,  my face at least, sort of looks like the pre treatment me.  That is where the distinction ends.  I am not who I was. It is hard to come to terms with this fact as I have fought hard to get back to “normal”, only to discover that the normal I once new is gone forever. It is a shock to find out your brain is not as sharp as it was, chemo fog does not dissipate with the end of treatment, and I sometimes feel more like Homer Simpson than Tricia Urquhart.  I have always been a “sorter”, if something is wrong I get in there to fix it.  However, the poisons poured into my body to kill the cancer have damaged my body and messed with my mind.  At lunch recently with a close friend, I was in the middle of recounting a story, and my mind went blank, I could not think of the words, or even what I was going to say, it was very, very frightening, I thought I was having a stroke!  After another similar episode I was really worried, however, I have come to recognise it was a bloody awful, full blown panic attack. How the hell after all I have been through could I be having a panic attack now?   But there you have it, that is what happened, it feels like I have revealed a dirty secret, I have anxiety. I felt my mind was now letting me down, just as my body had betrayed me by developing cancer.

The energies that one needs to get through cancer treatment, the adrenaline, the fight mode, they change after treatment ends. What arises is, quite naturally, fear of recurrence but also decreased energy levels, pains, G.I. upsets, not feeling like “me” anymore. Because of this, I have found/am finding, I need a whole new set of tools to survive. I am by nature and extremist, I go hell for leather at all my projects. No more.  Moderation..yeuch how I dislike that word, with its connotations of sensible and steady..but yes moderation is now necessary for my survival. Physically my body will no longer be pushed just because “I want”. It retaliates, first with gentle physical reminders, and if I ignore these with full blown physical and mental symptoms. Perhaps for too long I have ignored what my body was telling me.

It really is not surprising that my brain is in a bit of a melt down.  It is well recognised that the time after treatment can be very stressful as people come to terms with their experience, and live their lives with their altered body image and adapt to a new outlook on life and always at the back of ones mind, the fear of recurrence.

Although this all sounds very negative, and certainly the last few months have been an eye opener to me, I have found as  always, strength  and support from my family and friends. Joe, although a bit bemused by this turn of events, perhaps more clearly than me, views it as part of the healing process. I have returned to my meditation practice which is helping me to relax and accept how I am feeling. This makes me stronger, and as a result happier. So the …I was going to say battle..but that is not what it feels like….the journey continues, the new learning experience about my strengths and my limitations unfolds. I look forward to the journey.

Today I am attending my hospital appointment with the oncologist Ms.B eeeek!!!, I am F.I.N.E…..no really I am good, deep breathes and relax!

Ohi That wasn’t explained very well!

<a href="https://patricia2urquhart.files.wordpress.com/2014/11/image1.jpg“><img class="alignnone size-medium wp-image-1020" src="https://patricia2urquhart.files.wordpress.com/2014/11/image1.jpg?w=225” alt=”image” width=”225″ height=”300″ /> Tum te tum, Thursday, the day before I see the consultant for my biopsy results. On days such as these I keep gently active and try not to think too much about tomorrow. It is though, a time when I reflect back on what has happened, so many things, but today I was ruminating over one particular aspect of the treatment. When you are having chemo, or any other invasive procedure, it’s a big deal, everyone appreciates that. How ever sometimes the potency and destructive powers of the little things are overlooked. As you probably know now the cancer I was diagnosed with is HER2 positive and oestrogen positive. The herceptin was set to work on the HER2, and in January I was stated on an innocuous looking white tablet called Letrozole. You are told it can make your muscles and joints sore, give you osteoporosis, and cause vaginal dryness, bla bla, after the horrendous side effects the chemo caused what could a little pill do? All was fine for the first four weeks, then gradually I began to stiffen up, hand knees ankles…everything. Then horror of horrors (could my children please stop reading here) I lost my vagina. Now there is a bloody big difference between dryness, and shrivelled up and gone! If you say something will cause dry skin on your face, you don’t expect to turn into an unrecognisable prune in a month. Things were not looking good, no boobs and now no doohah! I was speaking on another matter to one of the oncology nurses, and managed to slip into the conversation ” By the way I seem to have lost my vagina”, well, there is really not any other way to say it, is there? She just nodded sagely and said “ahh..that will be the hormone treatment”. I explained my “problem” and she held her hand up and made it quickly into a fist with a shlooping sound “that can happen, with most people it is very gradual” My “ladybits” had shrivelled up in a month! Oh! for fecks sake, how much do I want to be “most people”? All was not lost however, and I was to visit my G.P. ask for this and that (you don’t need the details!) and all I was assured would be well. Having now carried out a fair bit of research I am a bit more reassured. My hormone tablet has been changed with good effect, I no longer groan like a ninety year old on rising from the chair, and I can turn over in bed without waking everyone with my groans. Let the unshrivelling commence. Also according to one lady who suffered similar symptoms, she now claims to have the vagina of a sixteen year old, Joe is living in hope. The lesson learned is just because it is small, unobtrusive and easy to take does not mean it is not wreaking havoc with your body. You gotta laugh

Oih! That wasn’t explained very well!

<a href="https://patricia2urquhart.files.wordpress.com/2014/11/image1.jpg“><img class="alignnone size-medium wp-image-1020" src="https://patricia2urquhart.files.wordpress.com/2014/11/image1.jpg?w=225” alt=”image” width=”225″ height=”300″ /> Tum te tum, Thursday, the day before I see the consultant for my biopsy results. On days such as these I keep gently active and try not to think too much about tomorrow. It is though, a time when I reflect back on what has happened, so many things, but today I was ruminating over one particular aspect of the treatment. When you are having chemo, or any other invasive procedure, it’s a big deal, everyone appreciates that. How ever sometimes the potency and destructive powers of the little things are overlooked. As you probably know now the cancer I was diagnosed with is HER2 positive and oestrogen positive. The herceptin was set to work on the HER2, and in January I was stated on an innocuous looking white tablet called Letrozole. You are told it can make your muscles and joints sore, give you osteoporosis, and cause vaginal dryness, bla bla, after the horrendous side effects the chemo caused what could a little pill do? All was fine for the first four weeks, then gradually I began to stiffen up, hand knees ankles…everything. Then horror of horrors (could my children please stop reading here) I lost my vagina. Now there is a bloody big difference between dryness, and shrivelled up and gone! If you say something will cause dry skin on your face, you don’t expect to turn into an unrecognisable prune in a month. Things were not looking good, no boobs and now no doohah! I was speaking on another matter to one of the oncology nurses, and managed to slip into the conversation ” By the way I seem to have lost my vagina”, well, there is really not any other way to say it, is there? She just nodded sagely and said “ahh..that will be the hormone treatment”. I explained my “problem” and she held her hand up and made it quickly into a fist with a shlooping sound “that can happen, with most people it is very gradual” My “ladybits” had shrivelled up in a month! Oh! for fecks sake, how much do I want to be “most people”? All was not lost however, and I was to visit my G.P. ask for this and that (you don’t need the details!) and all I was assured would be well. Having now carried out a fair bit of research I am a bit more reassured. My hormone tablet has been changed with good effect, I no longer groan like a ninety year old on rising from the chair, and I can turn over in bed without waking everyone with my groans. Let the unshrivelling commence. Also according to one lady who suffered similar symptoms, she now claims to have the vagina of a sixteen year old, Joe is living in hope. The lesson learned is just because it is small, unobtrusive and easy to take does not mean it is not wreaking havoc with your body. You gotta laugh

Waiting

Wednesday arrived. I had consumed vast amount of garlic, ginger, honey, paprika and lemon juice, my head cold had improved but goodness knows what I smelt like, ah well, I stink therefore I am.

Joe and I arrived at ward eight at 07.30. This is the elective surgical receiving unit, the doors were not yet open and a small crowd of patients milled around outside. I played a brief game in my head of pin the operation on the person, but could only guess the woman on crutches was for orthopaedic, everyone looked slightly tense.

Once the doors opened we settled into our seats and noticed a list of theatres and names on the wall, I was theatre three and last on the list. The relatives were then asked to leave and the woman with the crutches hobbled out leaving her companion to his fate, so much for my observations.

We were called in one by one to see our respective anaesthetists, my croaky voice did not seem to be  a problem, I was good to go. Mr R, the surgeon came to see me. He had removed my right boob during my original surgery, I wonder how many he has lopped off in his life? Anyhow he was, as surgeons are, brisk and business like marked the appropriate areas and told me of his plan. Mr R is very experienced and I felt very glad that he was carrying out the surgery. There is a twenty minute “alert” before you are taken along to theatre.  When this was called I was taken to a room and changed into a gown and fetching elastic stockings. I am not sure  how I feel about the walk from the ward through the main hospital corridor to the theatre.  Logically I am fit to walk I don’t need or want to go along in a chair, but somehow it feels wrong. I was taken along by a lovely nurse. who was quiet calm and reassuring, I do hate that chinzty chintzy cheeriness that can be given to jolly you along I have never experienced it thankfully, I have been so lucky with the nurses who have looked after me. .

In theatre venflon in without too much trouble, and then the best bit, drugs, breathe, mask, more drugs…lala land.  Out from the fog of anaesthesia I gradually emerged. My first thought, after water, water, was what had the surgeon thought when he viewed the lump. I know no one can know for sure till histology has examined them, but surgeons have a good idea from the look and the feel. There would be a ward round before five o’clock. Although my brain was still befuddled, I felt like I was standing at a crossroads. If he said “suspicious”, he would be pretty dammed sure it was cancer, and my life would definitely take off on a path which held a nightmare scenario for me. Anything else, and I would at least have a chance. The surgeon arrived with a small entourage. I was totally focused on his words. “It felt like a fatty lump”, I felt like I had been holding my breath and could finally breath again. Good news, much relief.

Today is Tuesday. I see the surgeon on Friday. I am sporting an impressive scar under my arm where the “dog ear” has been removed and the lumps have been taken out, it looks a bit like Zorro has been at work, however it is healing well. Although I still feel more positive then negative, doubts start to creep in the closer I get to Friday. This is the hardest time, the time when your imagination can take over. Waiting for results, be it is scans, biopsies or whatever, is mental torture. Whatever the results are we will deal with it, waiting for the results, it’s just the pits.

Back so soon?

Having just finished my moan a minute blog last week, I did not think I would be writing again quite so soon. But the blog is part of my therapy so hear I am.
I only finished bemoaning my slow recovery when all the tables turned and priorities changed yet again. While in the shower I came across another dreaded lump. Now what you imagine your reaction will be and how it really is, can be quite different. I just thought “oh dear, not good”. I imagined if I ever found another lump I would be hysterical, maybe this is a coping mechanism and my emotions just shut down. I told Joe who after a moment went “waaaah”. And did a pretend caper round the room throwing his hand in the air, well that broke the ice, what can you do, you just have to get on with it.

I phoned the Macmillan centre who later contacted me having spoken to the Oncology Consultant. I was to be seen by the surgical consultant, but one thing about these situations is the waiting, as I have said in a previous blog, the waiting is the worst. It is during this time that the imagination takes over and your worst fears are thrust into the front of you mind, it’s a sickening awful experience. Thanks to Julie and Rose, who are part of the unseen workforce at the hospital, I was given an appointment that day (many,many thanks ladies).

Finding the a lump is one thing. The reality of it takes shape when the appointment is given. Once again you are on this hateful but necessary conveyer belt, control slipping away. I had it clearly in my mind what I wanted the surgeon to say. “It feels like nothing but we will check it out to be sure”. However, As they say, you can’t always get what you want. Now the anxiety kicked it, all too familiar. I was sent for a “work up” for theatre. Bloods taken, weight (at least that was improving), seen by anaesthetist all ready to go…again. I was being fitted in to the surgeons already busy schedule so did not know exactly when I would be going. Now I felt sick, now I felt scared. On my way home I popped into A/E, a group of us from the department were due to go away for the weekend, I would not now be going, I no sooner walked I to the department saw all my friends and felt my lip tremble and the tears fall, crap! But Oh the comfort of having friends who understand. The slight cold I had quickly developed into a sore throat tracheaitis, earache misery. There is no doubt about it, stress depletes you immune system, I am sure it would not have been as bad if I was not stressed about the bloody lump.

So here I am in bed desparetly trying to rest and rid myself of this cold. I received a letter yesterday and am due to go to theatre on Wednesday, but not if I have a cold!

At this moment in time if I am told I need more chemo I don’t think I would take it. It has been so hard and my body has not even started to recover from the last round of treatment. However I am also aware that in a few weeks time I might well be holding out my arm and submitting myself to more torture, we shall see. Anyway in the meantime I am frantically looking at alternative treatments and treat your own cancer sites. As I sip my lemon ginger and honey, followed by my turmeric and hemp oil, I shall keep hoping for a good result from the operation on Wednesday, sending me good vibes people They would be appreciated! I just did not think it would come back so soon.

Not what we were expecting

In retrospect, I have been a bit naive. From the moment of diagnosis, the goal has been survive the treatment, and that has not been an easy task, there were a few dodgy moments when Joe and I thought I was not going to make it. Throughout the “cut poison and burn” one has a fixed goal, just kill the cancer and keep alive, get through this. Once treatment was over, I knew I would be tired, but that would be fine, once treatment was over I would start to get my life back. However, a paradox exists in that a psychological crutch gets removed when you reach the goal of end of treatment.
I was vaguely aware of statements like ” It can be hard when treatment finishes”. However, I really thought I was prepared and would move swiftly on to normal life.
Well here I am eight weeks after treatment finished and I feel pretty rubbish. Not all the time, I fact I probably have more good days than bad, but my life in certainly not how I envisaged it. It’s so hard to explain, it’s kinda of like you are just getting over a nasty bout of flu, and yet no, that’s not right. Personally, at the moment, I get glimpses of ” feeling normal” then a veil comes down and crappiness descends, not just tired but physically and emotionally drained. Along with this comes guilt and frustration “I should be feeling better”, however, the effects of the treatment do not stop with the last drops of the infusion. A friend of ours who finished treatment two years ago has now lost his hearing in one ear due to the effects of treatment. It’s all a bit unnerving, when does it all end…never? I now have a much weakened body. I find it hard to decide if what I am feeling is chemo/herceptin related, normal physical…just what happens..or bloody cancer! Am I have physical or psychological reactions to the treatment? I think one looses confidence in ones ability to “read” ones own body.
On several occasions over the last few months I have had episodes of seeing what I can only describe as kaleidoscope in my peripheral vision. I put it down to chemo. Last week I developed a cold, the first since my diagnosis, I think all these drugs killed every virus going about, as well as the cancer cells. I then had spells of extreme dizziness. Before my diagnosis I developed labrynthitis, and this felt the same. With the development of a headache the next day, I was suddenly struck with the realisation that I had brain mets. Nothing anyone could have said or done (except perhaps a brain scan) could have convinced me otherwise. The mind is so powerful, there was a small part of my rational brain trying to reassure me that this was not the case, but my fear was all encompassing, totally overwhelming and it was a very distressing and exhausting experience. A trip to the G.P. somewhat relieved my anxieties. The visual kaleidoscope is seemingly an aura linked to migraine, and the dizziness, well probably the labrynthitis, but even then the G.P. said “we will keep an eye on it” words which are there to reassure yet also sow seeds of worry, there are no certainties.
Mentally, I would not say I was low, just that a new vulnerability has crept in. Of course these feelings bring with them a sense of self indulgent guilt. I am alive, I am lucky, we have friend who at this moment in time is “knocking on heavens door”, and yet these feelings exist and will not, should not, be ignored.
Move on and leave these past 19months behind? Impossible, this is a life sentence whatever happens. Although I feel I have moved beyond the almost masochistic desire to tell my treatment story, I still feel like I am suffering post traumatic stress. The mental fall out from the treatment is powerful, I am protecting myself as best I can. Having Peter the psychologist as Maggie’s who has been a lifeline, is one of my main supports. My terrors are explored, my behaviours and reactions looked from different perspectives, and I am soothed. There are some moments of revelation during therapy, but more often I leave and I cannot remember what has been said, but always I come out feeling better and stronger, able to continue.
This is not the tone of blog I thought that I would be writing at this time, but as Joe says “it is what it is”. Here we are then plodding on, happy, sad, scared and brave. Glad to be alive but sick of feeling sick

Just When You Think It’s All Over!

 

The the last day of Hellceptin had finally arrived. Fi, my good friend who had accompanied me to my first treatment, was coming with me for the last instalment. Fi had made a fabulous boobie cake for the staff at the MacMillan centre, a thank you for their unfailing care, it looked better than mine ever had!  I also dropped off a cake in A/E. My oh so frequent visits to them over the last sixteen months had been much appreciated, their care and attention made the misery of those visits a little easier.

As I settled in for the final infusion I felt so glad that I had made it to this stage. I was coping well with taking the medication and getting my venflon sited. Fi only called me a fanny six times so that was good going. By five o’clock it was nearly through, only about five mls to go. I started to feel..well odd..I mentioned it to Fi but did not want to alert the nurses..just get this finished. However, within another minute I felt very unwell.  You know in the cartoons when one of the characters falls in love and their heart booms out of their chest? Well that was me…I felt sick, yuck, chest discomfort nooooooo!   The nurses arrived and turned off the infusion…only three bleeding mls to go!  My heart was now doing the fandango, my blood pressure was up and I felt awful.   It was a similar reaction to my third herceptin, so disappointing, here we go again.

After an E.C.G. I was taken round to A/E.   I want my cake back I demanded!   Too late already eaten.  My blood pressure continued to rise and fall,  nausea and palpatations continued, and I was admitted to the medical unit. As I had experienced chest discomfort it was necessary to rule out the possibility of a heart attack so bloods were taken. It was now after 21.00. Poor Fi who thought she was in for a short time stayed with me till Joe arrived. I was put on telemetry,a heart monitor that continually observes your cardiac rhythm.

I was admitted to the acute receiving unit. It is a busy ward, lovely nurses, caring and attentive, but what a noisy place. A lovely old lady was put on a drip, my heart sank, she continually bent her arm, occluded the drip and sent the monitor bleeping. By the morning half the patients in my bay had changed and been moved to other wards, not much chance of sleep.

The next morning I saw the medical consultant. He was referring me to the cardiac consultant. My heart was still hammering along but it had slowed down a bit so was less disconcerting. The cardiac consultant arrived. I had seen him in January after having heart problems following the Epirubicin. He had said at that time I had some hard choices to make. Did I want to continue with the anti cancer drugs and risk heart damage, or increase my risk of not destroying the cancer cells by stopping treatment. Well here I was at the end of the treatment. He has suggested some tests to see if my heart has sustained any permanent damage, it was a risk I knew I was taking, we shall just have to wait and see. How fortunate that within twenty four hours I had seen an oncologist and two consultants…great N.H.S.

So at last the infusion of the toxic chemicals is finished. My heart is still unsettled and I am going through the usual post Infusion yeuch time, but every day now will hopefully bring improvement. This cancer crap is a long and winding road, it’s been Hell but even so I feel lucky I am on the road and fighting and not under it!

 

 

 

 

 

Is that a light I see before me?

Nine days to go till my last treatment of Hellceptin. The countdown really begins, I am nearly there. Following my last treatment, the family all went to music festival in Inverness. With the help of steroids I had a great time, and we all enjoyed the music and entertainment..it was a glimpse of normality, which hopefully will soon be our life again.

  With a clear C.T. scan under my belt I headed off to see the surgeon for the biopsies of my two lumps, which developed last November. The lump under my arm is now the size of a large gobstopper (giant chewing gum ball from my childhood!), combined with the so called “dog eared” lumps of flesh left over from my mastectomy, means that I walk around like I have piles under my armpits.

   My surgeon Mr O, has now retired. I had an appointment with Mr K. who seemingly specializes  in breast surgery, a bit of a pity seeing as mine have now been lopped off. It is always a bit daunting when you change doctors, but I had heard good things about Mr K, so I was not concerned, just get the biopsy done get the result and move on.

   Mr. K was charming and kind, however he did not have the scalpel and needle at the ready as I had expected. The nurse was called in as chaperone for my examination. I find this a bit odd now. Do I require a chaperone in deference to the fact that I was once the owner of boobs, I am still a woman therefore require a chaperone despite my breastlessness?  The reality is I look like a deformed E.T. what on earth could I complain about? “He inappropriately ran his finger over my scar”?  Well you never know it’s a crazy world out there!.

   Having looked at my scars lumps and bumps “arms up, arms down” and prodded the offending lumps,and he suggested a trip to theatre after my last Herceptin.  He (and he is the expert) is going to chop off extra bits, try and remove offending lump and get the biopsy, while I am in blissful lalal land. All fine and good. The finishing line is pushed a little further back, but I can cope with that.

  As he reviewed my C.T. scan results on the computer my eyes quickly scanned the information. I am blessed with the ability to scan information and quickly pick out pertinent words. “Why does it say there is a spot on my lungs?” I said trying to keep the squeak out of my voice.  “It’s nothing, probably scarring from a previous infection, stop reading”. “What are the spots on my bowel?” I insisted. ” It’s nothing to worry about STOP reading”. I have a feeling that at the next consultation I shall be seated far away from the computer. The fact is, if you put most people  who have reached mid life through a C.T. scanner you will probably find spots and anomalies that cannot be explained and are often of no relevance. Mr K said “everything is fine, we just keep an eye on everything to watch for any changes”. I already knew that I just like to give myself a scare for the hell of it I think!

   So here I am on the home straight. One more dose of Hellceptin and its side effects. One slice and dice with a biopsy on the side, then the road to recovery really begins. I have got my new shoes all ready for the start of that journey.