I suppose my story starts back in 1988, I was 21 years old and had just had my very first smear test and guess what, it came back with abnormal cells, I was so scared, didn't know what to expect, the only information I was given was a small A5 leaflet, so anyway I had to have a colposcopy followed by laser treatment, this may not be relevant to my vulva cancer but what is, is the regular smears and check up's I had to have.
Jumping ahead, I gave birth to my first child, my son, in January 1993 and very soon (I mean just a few weeks) after I developed an itchy lump on my vulva, I wasn't particularly worried, thinking it was something to do with the very difficult birth I had, anyway at this time I was having smears every 6 months, I mentioned the itching and the lump and was told I had a bit of thrush.
My smears and check up's continued, nothing abnormal with the exception of regular thrush, I then fell pregnant with my second child, whilst having a hospital check up they noticed I was overdue my smear, they made me have one there and then, it was done by a Gyn, by this time my lump and the itching was getting worse but still tolerable, she (the Gyn) said its all good and nothing to worry about. I gave birth to my daughter in November 1994, another very difficult birth, suction delivery and way too many stitches. I was sent home within 24 hours with an infection in my stitches. I had to have the stitches taken out, so I had a huge open wound that took 3 months to heal, during this time, I saw my doctor, several nursed and 2 OBGYN's.
My point in giving you my history is that I was seen by a lot of medical professionals and I was told "it is just thrush and nothing to worry about", so I didn't. As time passed it got gradually worse so I just started using more cream, changed brand, was also prescribed a cream for a fungal infection (not thrush) but still didn't worry.
In 1999 I had another abnormal smear, as before I had my treatment, I knew what to expect this time so it wasn't as hard for me, but again the Gyn was not concerned about my vulva issue. I was back to quarterly smears, then half yearly and yearly, then the breakthrough, I was told everything was good and I could go to 3 yearly smear tests.
I lost count how many people saw my vagina, from nurses to Gyn's and nobody was worried about what I called "my rash"
Over the years my rash got worse, the lump got bigger, smaller skin tag like lumps appeared and the itching, oh that itching was horrible, it woke me up several times in the night, for years I hadn't slept through the whole night, I continued using thrush cream and got very paranoid about my cleanliness, so starting bathing four times every day.
in 2015 I noticed a lump in my groin, I didn't get it checked out as we were going through a lot with my mother in law who was very, very poorly and passed away in the December. Throughout the year the lump kept getting bigger until one day in February 2016 I stretched and pulled my groin and the pain was horrendous, thinking I had a hernia, my husband took me to A and E, got there at 9.30am, had several people check me over "Yes Mrs Hinch, looks like you have yourself a hernia" spent most of the day waiting around but I did get a CT scan, they scheduled me for hernia surgery and sent me to the ward, to await my surgery that would be around 8pm. At 9pm (yes 9pm) a doctor came in to see me and told be my CT scan didn't show a hernia, for some reason I asked what were the chances of it being cancer, he just said "pretty high" and walked out, thanks mate, what do I think now, what do I do, need to talk, nobody to talk to, hmm phone hubby, he said he would come straight away, so I went out of the hospital and being a smoker decided to chain smoke whilst waiting for my husband, when he came I just poured everything out and burst into tears.
The following day, still in hospital, I was visited by a consultant, a doctor and a nurse, with a very large needle, the nurse talked to me, the doctor held my hand and the consultant stuck the needle in my groin to get a sample of what was inside. oh the pain, now I know why they came in a gang of three. A couple of hours later I was sent home, with no diagnosis, with the exception of a CT scan report that showed no issues to any or my organs. Well I suppose that's something.
A few days later (I was on sick so not working) I was rudely awakened by a phone call, PCH Gynaecology Unit, "we have made an appointment for you blah blah blah" oh my god, I thought the worst, you know after all the laser, cancer was the first thing that popped into my head, my hubby, my rock said don't panic babe its probably nothing to worry about, bless him, he tried so hard to stop me from worrying.
I arrived for my appointment and went through, had a chat with the Gyn and he said he wanted to give me a good check over, so I had to go into THE ROOM, you know, the one with the chair, the stirrups and the TV screen. Anyway, stripped the undies and got in the chair, legs all akimbo, not so dignified, he took one look and said "it looks like a type of skin cancer, we need a biopsy" so I had a local anaesthetic, ouch, and he took his biopsy, the nurse said "you can watch on the monitor if you want" err really no thank you. had that and a full check up including a smear test and was sent home. So we, cause hubby came with me, went to the hospitals Costa, told him everything, I was still numb so didn't even think how much pain I would be in very soon, ouch.
Why oh why do they always ring so early, yes a couple of days later I had another early morning call, again, "good morning Mrs Hinch we have made you an appointment" that was quick, too quick, panic, cry, oh my god I must have cancer.
On appointment day, I went through to his office, he sat me down and was so blunt, "you have cancer of your vulva, at the moment it is stage 2 but if we find any more areas with cancer the number will go up, here are some leaflets, thank you Mrs Hinch, Addenbrookes will be in touch for your follow up, goodbye" really, is that it, no help, no explanations, what do I think, how do I feel, I am so bewildered I haven't the foggiest.
within a week of my appointment I was sent for another CT scan and an MRI.
When I was called with regard to my results, the Gyn/oncologist was on holiday so they asked me if I wanted to go to Hinchinbrook, what the hell I thought, let's get it over and done with. Oh what a difference, the staff there were so nice, kind and friendly. I was told my vulva cancer was a scuamouse cell carcinoma (argh can't spell it and it had spread to the lymph nodes in the left and right groin and my abdomen, so the number was now 4b, they looked very sad, which prompted me to as what are my chances, their reply was "minimal"
The next couple of weeks went very slowly, had a few appointments, treatment plans, lots of confusion and tears.
Then I did kinda give myself a huge kick up the backside, did I really want to fall apart, I have a lovely family, I have great friends, I need to be strong, I want to live. That was the moment my view on this journey changed, I am going to beat this cancer.
I started my treatment, not at hospital, my friend had just qualified as a hypnotherapist, he offered to help, so I took him up on his offer, he spoke to my "subconscious" and told it/me to work with my treatment and help me to cope with the treatment side effects, well more complicated than that but that it in a nutshell.
So I arrived at Hinchinbrook for my first treatment that was an all dayer, well they all were but hey ho, petrified of losing my hair I opted to try the cold cap, so I had to be there earlier and leave later for each appointment. my days consisted of wet hair, put conditioner on, put cold cap on, switch machine on and freeze to death lol. Find a vein, ok find another vein cause that one don't work, oh dear neither does that one, finally we found one, canula in. steroids into canula followed by piriton, sickness meds and god knows what else, "Ok Mrs Hinch are you ready for you chemo" I had an hour and a half of a chemotherapy called Carboplatin followed by three hours of a chemotherapy drug called Paclitaxol, then another one hour wait with the cold cap, it has to go on before the chemo and come off after. Well except a small allergic reaction to the Piriton (that's a bit ironic isn't it) I got through that pretty much ok.
I now had three weeks until my next treatment, I was off sick but I was able to work from home, so I kept myself busy, hubby took me out shopping at the weekends, you know the nice kind of shopping, clothes, shoes, afternoon tea, watched movies that made me laugh and I stayed very strong and happy throughout with the exception of waking up in the morning, when the first thing that comes into your head is "I am going to die"
This three weekly cycle went on for five treatments, the next step was the radiotherapy, but first I had an MRI to see what they would be looking at, well, well, the treatment was working almost too well, they were all quite surprised, my vulva looked clear, so did most of my lymph nodes. my next job was those tattooed dots, which I am still thinking about getting tattoos on :)
Started my radiotherapy journey, 25 sessions, 10 minutes, daily with a session of chemo, Cisplatin once a week, now that did make me feel sick, so I told them and they gave me more drugs, at this time I was taking 13 tablets a day.
I had imagined that the radiotherapy would be a doctor pointing a laser beam into my vagina hehe. Oh it looks like a CT scan machine, silly me, anyway I laid on the bed of the machine and the radiologist said "you might want to shop for some different underwear, pretty ones are going to aggravate you" oh no I said I am a complete underwear whore, I need my nice matching undies, hmm I really should have listened. The actual radiotherapy was a piece of cake, just laid there listening to the music, had a good chat before and after, nothing to it, hmph right up until the last week, oh the burns, the blisters, the blisters popping, on my last radiotherapy appointment I went through 5 pairs of knickers because my blisters were popping. They didn't want me to have my final session of chemo because my burns were so bad but I insisted, I thought if the treatment doesn't work I don't want to think was it because I didn't have that last chemo, so they were not happy but they let me have the treatment, but sent me home with codeine and morphine.
They explained to me that the treatment continues to work for three months and that the next three weeks would get worse before it got better, they were oh so right, my usual position at home was no undies, legs spread with a fan pointing at my poor burned legs and vagina.
I was to go back for a check up in three months, after having a CT and MTI scan. My consultant walked in and said "good morning Tracy, you are looking very well, your wig looks so realistic" err it's my hair, I used the cold cap, it worked, what I really wanted to say was come on get on with it, have I still got cancer or not, but I kept that to myself, "I am so happy to tell you that your scans were all clear, there is no sign of any cancer, it's all gone.
Thats when you go to pieces, there is no way to express that happiness.
Write something about yourself. No need to be fancy, just an overview.