The more you know and the better informed you are, the less scary it all seems
Mar 7, 2017 • 2 comments
Hi Maddoglady, could you please tell us something about yourself?
My name is Kathy Wright I’m 55 years old, married with no kids (from choice!) and live a few miles outside Redditch in Worcestershire. I’m retired, early I might add and I used to be a serving police officer. My time is now taken up with treatment and my dogs that absorb much time and energy. I enjoy dog showing and training and also keeping fit and active. I’m interested in knowing stuff about stuff and do a great deal of reading and online study courses on a range of topics.
You have been diagnosed with breast cancer. What symptoms did you experience before going to your GP? How did the diagnosis go - what tests did you to, how much time did it take?
Following an incident at work the first thing I noticed was a huge bruise, which wasn’t particularly sore but as it faded left behind a large patch of thickened skin that seemed to morph into a huge ulcerated lump almost overnight.
I suspected almost immediately what it was and asked my GP for a referral to a specialist. My GP was excellent and referred me immediately and within a week of seeing him I had a specialist appointment. The initial tests consisted of x-rays, ultrasounds, mammogram, biopsies and blood tests. None of these things take that long to do, it’s just the waiting around to see different people and then there is the oath of secrecy that they all seem to have taken, heaven forefend if anyone should actually inform a patient about what is going on! Unfortunately I’m a rubbish patient, I have no patience, hate being kept waiting, don’t do evasion and like to be kept informed! If any one is concerned none of these things hurt, some are mildly uncomfortable.
Before being diagnosed, did you know something about breast cancer? What information did you receive at diagnosis and from whom? Where did you look for information afterwards?
I was aware of breast cancer; however I didn’t give it much thought. I certainly wasn’t given enough information by my surgeon, well not enough for me anyway. I’m sure that he was professionally gifted, however he had no personality, was completely unable to communicate. Initial information came in the form of a plethora of CRUK pamphlets that provide some information. These were handed over by a specialist nurse that everyone gets assigned to, mine was actually lovely but I’m not given to hand holding or sitting on bean bag being hugged and that does seem to be the approach by the NHS. I actually find it slightly repellent! Henceforth, I did a great deal of online research, about my particular type of cancer and various treatments. I did tend to ignore sites like Macmillan because I didn’t find them terribly helpful.
What was your first reaction to the diagnosis, and that of your family/friends? How did you cope with the news?
My first reaction was anger (see the impatient patient thing!) Then I felt extremely insulted that I’d got something that everybody else got. I should point out that I don’t take life very seriously, after all the only thing of which we can all be certain, is that at some point we are all going to die, so why worry about the inevitable. It really didn’t occur to me that cancer might kill me; I was far more concerned about losing my privacy and anonymity.
I didn’t tell my family or friends, I’m a very private person and just like to get on with things with a minimum of fuss. I wasn’t upset at the news; it merely confirmed my suspicion so I wasn’t surprised. I just dealt with the news the same way I deal with all things, practically and sensibly, I find out all the information I need, weigh up the options and decide on a course of action and then just get on with it.
What treatments did you receive and how soon after the diagnosis? What were the side-effects and the consequences? What was the result of the treatment?
I was diagnosed with an invasive ductal carcinoma that had spread into the skin, to the chest muscle and into the lymph nodes and was graded as a 3, not quite as bad as it gets but bad enough. The tumour was about 11cm x 5cm and was initially declared to be inoperable. I was initially treated with hormone therapy to try and shrink it, which was followed by chemotherapy using a combination of vinoralbine/herceptin for 7 months. After that I had a mastectomy with node clearance then 3 weeks radiotherapy.
My GP referred me really quickly, 3 weeks after seeing him, I’d been diagnosed and started treatment.
All cancer drugs and treatment have side effects, varying from drug to drug. I had done my research and believed that the one I’d chosen was the best of a bad bunch! I didn’t want to lose my privacy or anonymity so refused to take anything that would make me lose my hair. I also wanted to take the drug myself and not have it intravenously. The drug I took, Vinoralbine caused sickness, diarrhoea, skin rashes, neuropathy, fatigue and apparently can affect the voice so isn’t recommended for professional singers! I felt very sick, very tired had numbness and tingling in my hands and feet, but hey, I wasn’t bald!
So far the treatment has worked and at present I’m cancer free.
You’ve had breast reconstruction. Who informed you about the possibility of the reconstruction? How long did the process take and how did you cope with it?
From day one all I wanted was surgery, reconstruction and my life back. I was told that I’d have to wait for 12 months after mastectomy before I could be considered for a reconstruction. I asked for a referral as soon as the 12 month period had elapsed. I researched all the options, read all the literature, weighed up the pros and cons and decided what I wanted before I ever saw a plastic surgeon, as soon as I knew who the surgeon was going to be I also researched him and checked out his handiwork online.
The entire process from referral to final tattoo took about 18 months. This involved waiting 4 months for an initial appointment, 5 months wait for a first surgery, 11 months wait for a second surgery, and 9 months wait for a nipple tattoo.
It was the best thing I’ve ever done, it made me feel human again. I had a modified LD flap reconstruction, fat grafting and a nipple tattoo. I have a very slight disability on the affected side, with loss of strength/muscle and flexibility, I am however delighted with the result.
What was the impact of the condition on your everyday professional life/personal life?
Before I was diagnosed I was an operational police officer, however after the amount of time I spent on sick leave plus the physical side effects meant I was no longer fit to fulfil my duties and I was medically retired.
It probably sounds weird, in fact I know it sounds weird, however I believe a cancer diagnosis was the best thing that happened to me! It made me take stock of my priorities and make significant changes to my diet and lifestyle.
Where are you now with your treatments? How often do you have check-ups or tests?
My treatment is continuing and is likely to do so for a considerable period of time. I’m cancer free and the treatment is designed to ensure I stay that way. I have 3 weekly subcutaneous herceptin injections and daily anastazole tablets. I have 12 weekly ECG heart scans as herceptin can cause heart problems. I also have annual mammograms and 16 weekly consultant appointments.
What helped you cope with the condition? People, hobbies, activities
I don’t take life too seriously; have a slightly warped sense of humour. I have my dogs and my love of reading and learning. There are always people far worse off than me and I don’t allow things to get me down for long.
What message would you share with other breast cancer patients?
Cancer is a disease, it’s not a journey or some kind of mystical odyssey, and it can be treated. Don’t be afraid to ask questions, knowledge is power. The more you know and the better informed you are, the less scary it all seems.
Accept it as a wake-up call to make changes in your life, the responsibility for wellness lies with you, make changes to your lifestyle as in overhaul your diet and embark on an exercise regime.
If you do nothing else look up Chris Woollams a former biochemist who is behind Canceractive a website that gives all the info on cancer, cancer drugs and treatments both conventional and those less so.