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I am a 'Lymphoedema Sister'
uploaded : Thursday 1st Aug 2013 at 01:58
by : Carol Gould
It is a year since this article was written; this week Macmillan was reported to have gleaned from its recent nationwide survey that cancer costs patients an average of £570 a month in lost work and extra costs for care and travel. They also revealed that 90% of survey respondents worried more about their finances than about a recurrence of cancer. We thought we would re-run our piece. Here is a link to the Macmillan story:
July 15 2012: Update:
Readers may wonder why I am not writing as much as I used to. Part of this is due to a crippling condition called 'lymphoedema' that plagues my right arm. When lymphoedema really acts up it causes 'cellulitis' which means the breats swells and turns beet red; this is usually accompanied by a sudden, high fever. I have to carry antibiotics with me all the time and they always bring the temperature and swelling right down. The other part of my not writing so much is my feeling so disenchanted with the world's leaders; notwithstanding my right wing and Bruges Group friends condemning me for lauding the virtues of Franklin and Eleanor Roosevelt I do believe countries in meltdown need a New Deal. However following the British midterm elections this week I have bene inspired to write and hope my piece about US-UK electoral trends will give pause for thought.
Finally, here is a quote from a cancer blog that best describes the Carol Gould of today with the Carol G of pre-cancer days. lest we forget the mega-athlete Martina Navratilova refers to her breats cancer saga as her 'personal 9/11.' My sentiments exactly. The blogger's quote follows:
'..being one of the very few who have had an isolated axillary recurrence after mastectomy (originally Stage II/Node Negative), I am scared to death that, once again, what should be nothing, will turn out to be something.
'If I think about the upcoming appointment with my Onc, I can feel my heart beating faster and the fear rising in me, almost like a panic attack. Anybody else out there have this same sort of feeling? I used to be so normal, then breast cancer pulled the rug out from under me, twice. I swear, I wonder where that plain old normal woman went....I barely remember her. '
November 1, 2011:
It is now four years since I first wrote the following piece. A doctor in Arizona, Robert Kuske, whom I consulted by telephone told me in August 2010 that because I am Triple Negative my cancer would likely be garde3, my tumour 3cm and that the cancer would have moved into my lymph nodes. Unlike my London GP, who, though a charming woman, said 'What's Triple Negative?' he told me that my condiiton is a 'death sentence' and that he and his partner Dr Victor Zanness would be hearbroken if I didn't make it. I finally decided to ignore my well-meaning London friends who had been telling me that happy thoughts, apricot kernels and asparagus would 'shrink' the tumour. I ran to a surgeon who got me in for tests and sure enough, Dr Kuske had been spot-on: the tumour had grown to 3cm, was stage 3 and the cancer had spread to my armpit gland. It is now almost a year since my surgery and I have got used to wearing a compression sleeve and glove for lymphoedema. I have been through five weeks of radiotherapy and at some point, when I am physically up to it, will face months of chemotherapy. How I wish I had come across Dr Kuske eighteen months ago when I was first diagnosed....
From July 2010:
Recently I was told I had an invasive malignancy in the same breast on which I had had surgery in 2006. I will require a lumpectomy and removal of part or all of my armpit gland. I have been told my tissue does not respond to conventional cancer medications so I will need radiotherapy.
How true, what Martina Navratilova has said about her recent breast cancer diagnosis: 'It is my personal 9/11.'
The oncologist in 2007 said I was clear for perhaps ten years and that my family history of no cancers was encouraging.
Men are not gods....
Here is my piece from January, 2007.
15th January 2007
Do not let anyone tell you that breast cancer surgery is a doddle.
Notwithstanding the fact that I did not have a mastectomy but had a mere excision biopsy, it was a horrible and traumatic ordeal that changes one’s feelings about oneself forever and digs a deep hole in one’s self-esteem and hope for the future. In fact, after this episode in my life I am astonished that young women will go willingly under the surgeon’s knife for cosmetic breast procedures.
Aside from the pain and the trauma of the physical experience there is no doubt the alteration of a woman’s most alluring attribute affects one in a profound way. I had one of the finest surgeons in the world, but I now look in the mirror and see a disfigured female who had taken enormous pride in her perfectly symmetrical and quite gorgeous bosom.
But does this matter? Certainly the prospect of dying of advanced cancer takes precedence over the preservation of any cosmetic aspect of this process. Breast surgeons and oncologists will be furious with me for being so negative about breast surgery.
It is not so much the procedure for which I was totally unprepared emotionally and physically but the actual manner in which the process unfolded, and this is why doctors should not chastise me. I want to spell out my suggestions for making breast surgery less of an ordeal than was my rendezvous with this unique trauma.
It all started in 2003 when I had an abnormal mammogram result and was summoned to the Breast Cancer clinic at Charing Cross Hospital for further tests. I will never forget the two consultants being totally blown away by my announcement that I was in the top risk category, Ashkenazi Jewish, but that I had no breast cancer on either side of my family going back as far as I could trace. Neither doctor had a clue as to what an ‘Ashkenazi’ was. One clinic attendant even asked me if an 'Askenoozy' was some new American fad. This caused me momentary amusement: imagine, I thought, a cancer team in a large American city now knowing what an Ashkenazi Jew was! (Later in this article I will return to the Jewish Thing theme, so stay tuned.)
In December 2003 I was kept at Charing Cross for many hours and subjected to something called a ‘core biopsy.’ Even though one receives a local anaesthetic it is not the most pleasant of procedures. Again, I do not want to put women off breast care but after six or so of the biopsy samples were taken out I was ready to go home and get very drunk. Seven samples were taken, I was bandaged up and sent weeping into the cold of night.
The week between biopsy and results is the most terrible anyone can imagine. One walks around like the living dead. A dear friend of mine insisted on accompanying me to my appointment to hear my biopsy results the following week, which I did appreciate. As it transpired the specialist was late in to the clinic and that made the wait even more agonising. He finally materialised clutching a bike helmet. My heart was in my mouth when I was called in to see the Biker Doctor. He explained that the results showed ‘suspicious’ tissue but no malignancy. He said I should have the abnormal tissue removed but I opted to leave things as they were.
Three years on I began to have bad pain in the right breast. I asked my GP if I could be referred for an MRI instead of a mammogram, which many women, myself included, find painful. She sent me to the top breast surgeon in Harley Street and he said he was amazed that I had not had an operation to remove the odd tissue. I gave him my speech about my family history of no breast cancer. At least he knew what an Ashkenazi Jew was! He took a needle biopsy.
The next day I saw the ultrasound man who was exceptionally rude and sarcastic to me. He suggested that I must be some sort of imbecile for having walked around with ‘B4’ tissue for three years and implied that this would likely have become malignant by now. Everything I said to him elicited a snide remark and I ran upstairs to tell the Nurse that I would refuse to be seen by him again. But she had good news for me: the needle biopsy results were benign.
I went home and looked up ‘B4’ on the internet and found a sobering scholarly piece by a Leeds breast consultant in which she said every woman with ‘B4’ was malignant when opened up. That really put the fear of God into me.
I decided to get another opinion and went to Charing Cross Hospital where the eminent surgeon there said he was also astonished that I had refused surgery in 2003. He said he operated on ‘B2’ women. His five nurses could not get my breast into the right position this time for a core biopsy but I quickly realised they had been told by the surgeon to bluff a ‘technical problem’ in order to make it necessary for me to be operated on.
His head nurse rang me several times the following week to remind me in the sternest terms that I was ‘walking around with likely breast cancer’ and would I please book in for an operation.
As it happens I went to visit a friend at St Mary’s Hospital and was so horrified by the state of her ward that I decided to ‘go private’ for the first time in my life. I went back to the Harley Street surgeon and he booked me in for breast surgery for the next day. I have never been so terrified in my life. The reality of a full inpatient operation and of my breast being disfigured tormented me the whole night before. I looked into the mirror and said goodbye to my perfectly formed bosom that had been part of my female identity, my allure, my pride for my entire adult life.
That morning I burst into tears and touched the wall of my flat with the silly thought that I might never return. I was convinced I would die in surgery and made sure to leave my Will on my desk with funny notes for my friends about not taking my BAFTA ‘piracy means jail’ DVDs.
I set out in the dawn darkness for Harley Street to be seen by the ultrasound man. I was chagrined to have to see the same wretch again but by now I just wanted to get through the ordeal.
I was very upset that nobody from the Clinic thought to walk me to the hospital. In fact, as I left the clinic I felt as if they had become so hardened to the ‘sausage factory ‘ process of sending ladies off to have their precious breast cut up that they had forgotten that this was a deeply emotional and wrenching experience for patients of all ages. I had been ‘wired up’ for my operation and was shlepping handbag, briefcase and wheely suitcase. It was the loneliest walk of my life. I was so desolate that I very nearly turned around and went home when I got to the door of the hospital. A woman was pulling out of a parking space in Nottingham Place and a taxi driver actually got out of his cab to stick his face in her window and tell her to ‘F--- off!’ I thought of what I was about to face and wanted to throttle him.
The hospital receptionist told me to ‘Go there!’ as if I was registering for unemployment benefit. The registration process was even worse: I got a ‘trainee’ who asked me where I was ‘staying.’ I do not know why but this irritated me intensely. In any event my American genes began to seep through the proceedings; she seemed to be utterly disinterested in my medical history or my immediate concerns and was actually so thick that I worried I might be sent down to theatre and find myself without a kidney or gall bladder.
But the worst was yet to come. In my room was a nurse who treated me as if I was checking into Holloway Prison. Again, my American sensibilities began to bubble up. She snapped at me to get my ‘lippy’ off. I was scared to death of what awaited me but was aware of her barking orders at me to get into anti-thrombosis socks and special panties. I threw my clothes on top of the little fridge. In came the anaesthetist, whose humour did not amuse me at the time but which I did appreciate later on in the ordeal. Again, coming from a society where the slightest mishap can result in a million-dollar lawsuit I was shocked by the haphazard and brusque way with which my concerns were dealt. Inbetween being snarled at by the nurse and trying to get my thoughts together ( I kept thinking about saying goodbye to the breast) I managed to tell the aneasthetist that I had had rheumatic fever as a child. He was indeed grateful for this last-minute bit of information because it was crucial that I have massive doses of antibiotics during surgery.
I very nearly burst into tears again as they wheeled me into Theatre. At this point the comedian anaesthetist was a wonderful tonic and I will be eternally grateful to this warm and caring mensch for kibbitzing with me until I went under. When I asked him if I needed a tetanus shot, he said 'You're planning on digging earth?'
The human body is remarkable: in a flash I was waking up. What must have taken at least an hour seemed to have taken seconds. I was in unspeakable pain and was told that I had needed to be ‘ventilated’ during the operation hence the agony in my throat. I began to think ‘Oy vey, with their genius admission process did they give me a tonsillectomy instead?
Nothing could have prepared me for the pain of breast surgery. The post-operative care was abysmal. I kept saying to myself ‘Make believe you are a wounded American soldier in Iraq and in a MASH field hospital.’ I might as well have had a cosmetic tuck for all the compassion shown to me. The same aggressive nurse kept pestering me about my ‘pain scale’ and blood sugar. Of all things I was fiendishly hungry just an hour or so after surgery but -- and they were right about this -- I was prohibited food until evening. When a pot of tea arrived I nearly cried with joy. It had not yet sunk in that I was now on that agonising emotional roller coaster of waiting for biopsy results.
In the afternoon my surgeon and the anaesthetist came up to see me. I was still groggy but got secret satisfaction when he barked at the Prison Warden nurse to ‘Please leave!’ He told me that some lab results were already coming in and that they were much better than he had ever anticipated. He showed me some little drawings of the breast tissue that had been excised and told me he was much encouraged. I held his hand and thanked him for giving me a ray of hope.
It might be worth mentioning at this point that I had had a highly amusing conversation with one of my surgeon’s patients at his practice before I was admitted to hospital. I was complaining to her that after thirty-one years in Britain I still had not got used to the brusque British way of communicating with people. I told her that in the United States there are ‘Jewish Hospitals’ scattered across the country and that most doctors, even in hospitals with names like ’St Agnes,’ ‘St Luke’s’ and ’Miseracordia’ have that extra something that makes them ‘feel like family’ the minute one enters their rooms.
She said such hospitals -- Jewish and Christian in nature -- did not proliferate in the UK. It was at that moment that it struck me how much I would have loved to have been treated in the United States, simply to have had the comfort of a hospital founded under and sustaining its reputation on religious principles. It also crossed my mind that the expression ‘nursing sister,’ which is uniquely British, must have derived from a time when the church had some involvement in the care of the sick. If restoration of compassion and kindness means bringing the church, and the Jewish or Muslim community into its own hospital care, I would be all for it!
My afternoon of great pain after surgery was made even more distressing because my nurse took umbrage that I had ‘phoned the clinic and my GP ‘s surgery about being administered insulin. This had absolutely terrified me. I had become slightly diabetic in recent months. She sat on my bed and berated me saying she ‘resented’ my suggesting she had been bullying me. (This was the ‘lippy’ lass.) There I sat, with hand swollen from multi-ended intravenous, and with a truly tortuous tube emerging from my wound, being yelled at.
Might not a rabbi or clergyman have been more appropriate at that time in my day?
The really snippy attitude of the staff irked me. Friends began to arrive the day of my operation and when one asked for a chair a porter literally threw one at her.
I will never forget my first meal. I felt like a refugee. I gulped down a bowl of hot soup and guzzled a roll, murmuring ’This is bliss!’ and can still taste it as I write this.
That night, as I looked out at the horrendous fog that had grounded thousands in a freezing tent at airport and felt the ungodly cold despite the heat being on full blast in my room, I asked the night nurse to help me into the loo. She was a bad-tempered and really quite hostile Eastern European young girl who seemed to absolutely hate me. I staggered into the loo and of course my gown got caught in the tube and you could hear my yelps all the way to the tent at Heathrow. Getting back into bed was truly torture.
It was impossible to sleep because of the breast tube and the needle still embedded in my hand so I amused myself watching those poor souls in the Heathrow tent every hour on Sky TV. At least I was warm and had been fed!
The next day I began coughing up blood and begged someone to look at my throat, which felt as if the tonsils had been sliced. The tube was removed in an unbelievably painful procedure. I begged for a local anaesthetic but then it was out. The nurse cursed my surgeon for tying the stitches so snugly and said to me, ‘I don’t know why you are fussing! -- but I suddenly went into an apoplexy of rage. I told her I was not moving from the bed and that I would have to be dragged kicking and screaming if they, or my insurer, thought I was about to go home. She came back and said I could stay another night. I was in agony from the tube extraction and throat problem. She gave me strong painkillers -- Tramadol, a miracle drug -- and finally a house doctor came to see me teatime and discovered that I had tonsillitis. He saw that I was coughing up blood and sent me for XRays, reminding me that this kind of chest bleeding could lead to heart failure. Frankly, the monster nurses were more likely to cause cardaic arrest.
I was discharged on Thursday but would have given anything to have been allowed to stay in another night or two. I am told the NHS would have allowed me to stay in until the chest and throat problems were under control. The pain over the next few days was almost unbearable, but the anguish of waiting to hear if my tissue was malignant was far worse. Anyone who has lived through the wait for cancer biopsy results knows it is a period of time when one walks about in a dazed ‘living dead’ state of being.
A few days after my surgery I noticed a large weal on my tummy. I thought ‘MRSA!‘ and rang the hospital. I was seen by a charming nurse and doctor who thought it might be a recurrence of the shingles I had suffered this past year. (Apparently many people develop shingles after the stress of surgery.) I remember thinking ‘I wish these two had been on duty during my ordeal.’
The following day was my biopsy result appointment. All through the night I had tossed and turned, partly due to the pain but mostly because of my utter terror about having cancer. I arrived early, and to my joy the surgeon told me that virtually everything extracted had been benign. Only one tiny bit had seemed ‘pre-cancerous’ but essentially I was in the clear. I was euphoric. To celebrate I went to Waitrose, which I guess is bizarre, but I had to eat! When I got home I had a haemhorrage. Maybe shopping and carrying groceries had been a stupid thing to do. It was horrible being alone when the bleeding happened. I rang the hospital only to find that there was nobody there to help me becasue there was no emergency doctor available. Moral of the story: Never get sick in England over Christmas. And never shop when your stitches are still so precarious. Do not take public transport for at least two weeks after surgery.
The haemhorrage was not something for which I had been prepared. It did occur to me that the brutal removal of the tube by the 'don't fuss!' bitch had caused the bleed. I slept in my clothes and on top of the bed for several nights, waking up every hour to see if my life’s blood was draining away.
Thankfully, the bleeding ended by the following week and I was able to ride a bus to see the oncologist. The final bit of tissue had been analysed and was ‘early stage cancer in situ,’ which does not merit radiotherapy or any other treatment. He said ‘Essentially you are cured.’
Oddly enough, I have been very weepy since this good news. I am aware that my breast now looks like a tortilla and hurts a lot. The anaesthesia left me something of a zombie. (Writing this article would ordinarily take a couple of hours but took me days.)
But I am so lucky. I hope my story will not put women off the vital tracking of breast cancer. What I do hope is that practitioners will improve the care and aftercare of breast surgery patients. I felt as if I had been thrown into a sausage factory and vomited out. One felt there was no compassion or warmth on offer, even though I ‘went private’ thinking there would be time for this.
I do wonder if my diet of the past three years contributed in some small way towards prevention of a malignancy of the 'B4' tissue. Since 2003 I have changed my diet and eat blueberries, blackberries and pomegranates as often as possible. I drink French bottled water and avoid products from areas affected by Chernobyl. I eat Brussels sprouts when I can find them. Although none of this has helped me with weight loss I do believe it may have helped in my fight against breast cancer.
In retrospect I also wonder if a ‘Jewish or Christian Hospital’ might have been nicer. I tried desperately not to be paranoid but do continue to wonder if my having to provide my religion had something to do with the exceptionally brusque and often cruel treatment I had from a string of ‘carers.’ I will accept the benefit of the doubt and say they were just tired and angry they had to work in the lead-up to Christmas -- one nurse complained that she was missing the ‘party of the year’ to look after me -- so suffice it to say I hope this famous private hospital was just having a bad day.
It is vital that Ashkenazi Jewish -- and all -- women have regular check-ups; now there is a variety of breast diagnostics available: mammogram, ultrasound and MRI. Do not let my rotten experience put you off.
Please also read:
Carol Gould is a filmmaker, journalist and author of 'Spitfire Girls' about the women pilots of the Second World War and of 'Don't Tread on me - anti-Americanism Abroad' about anti-Semitism, America-hatred and anti-Zionism in the UK and Europe. She has most recently appeared on BBC Radio 4's 'Any Questions?' and 'Woman's Hour.'