Hi there folks. So in a nutshell: I got diagnosed with Non Cancerous VIN cells in my vulva back in Oct 22. The gynny doctor recommended treatment with ointment which at that time was on back order from abroad. I was on a waiting list for it as demand was high. I eventually got it in Feb 23. I used it every 2nd day (initially it burnt and stung like anything when I peed, but I started to get used to it, although it was still generally uncomfortable to pee).
I continued to use this cream for the best part of 1.5 years, then my doctor suggested that because the VIN was still there, I get surgery to remove it. So in October just past, I went in as a day patient and had the infected section removed. I genuinely thought that was that..all done and dusted.
Then, approx 2.5 weeks later in Mid November I get a phone call from the consultant during my shift ( I run a busy restaurant) staying they had lab results back and detected a small percentage of cancer ....only 2% , so only Stage 1 and would get surgey to remove it, and in the meantime by local hospital would contact me for further tests. They did...so just over a week later I ended up getting an ultrasound on my groin area and it detected a slight swelling in my right lymphnode. I was then sent for a biopsy on it the following week and when the results came back from that, I was told the cancer had spread to my lymphnode and best treatment would to have more surgery to remove more of the infected area on the vulva plus the roval of both my lymphnodes in my groin. I was told it is an invasive surgery but taking both nodes out would more than likely stop the cancer from spreading.
So, I underwent this surgery on the 16th of Dec 24. It was a 4.5 hour operation and I woke up with 2 drains in me so that the lymph fluid could still drain away out of my groin now that my natural drainage system had been taken away from that area (the lymphnodes). My 2 large incisons was all stapled up and my thighs and groin were left very swollen and numb after the surgery, which isn't surprising as they had to cut through nerves and muscle tissue etc. I got out on the 23rd of Dec, in time for my Christmas dinner on the couch as sitting bolt up right was too uncomfortable and still is.
I got my drains removed on the Monday before Christmas after they had been in for 7 days and then my staples removed on the Friday after Christmas (27th). The drains came out without any hassle but the staples were a whole different ball game. My local nurse and GP hadn't seen any like them before...in their words 'they were like Titanium' and the wee tool supplied by the hospital to remove them just broke at the first staple. They were completely embedded and tangled up like a corkscrew. After the 1st one tried to get painstakingly removed with my skin ripping, the doctors then gave my a local anesthetic before pulling out the rest. The agony of the first staple was horrendous, but after the local, it was less painful. This is extremely rare apparently, normally they come out with ease.
Anyway, the following day (the 28th Dec, a day I will always remember as it was literally life changjng) I noticed both my thighs had dramatically swollen. They were so heavy and chunky. The following day, they got worse and I saw my local GP again who confirmed I contracted Lymphodema in both my legs and in genitals. (There was a 50/50 chance if this happening after the surgery) I was devasted! She then referred me to a Lymphodema clinic but bearing in mind it was in the festive period, most clinics and professionals were on their festive break, including the pathology team who I was awaiting my results from. I literally felt so alone (even though I have the support of my hubby, 3 young children and my parents etc), but no one was available with the medical knowledge and advise I needed. My swelling continued down my legs all the way down to my toes and all around my pelvic area. Thakfully I got an email from the Lymphodema clinic at the back end of December with videos showing me tips and LDM massage techniques to do. I started the massages straight away and got an aunt to help with my legs as I can't bend to get to them myself right now. On Hogmany, she gave me nice leg massage and when she'd finished I went to get off the couch and let out a yell of pain....my internal stitches had burst where the surgeon had done some extra work to rebuild the muscle tissue between my front and back passages. Needless to say, it was very painful and left me unable to sit on lower seats including our toilet! I wasn't bleeding but the stiching had just popped due to all the new swelling. I went up to the hospital the following morning for an examination. Everthing, considering all what was going on, looked OK though and I was given antibiotics to avoid getting an infection. My mum thankfully still had a raised disabled toilet seat from when she had her hip and knee replacement so I have got that now and my hubby heightened the couch with wooden blocks, so I can sit down comfortably.
I got called in to see the gynny doc and meet the Mcmillan Support Team on the 7th of Jan, once everyone was back to work, and they had all my results back. So, thankfully the cancer was all successfully removed and I will get further treatment next month in the form of radio or chemo. It turned out the cancer wasn't in my vulva after all, but had manifested (most likely from the VIN) into my right lymphnode undetected some time ago. The vulva cells had all been precancerous but the cancer in my lymphnode was at Stage 3B...so that was a shock to hear, as well as a relief to know it was dealt with in time. So, totally releived about that obviously but still frustrated about my Lymphodema as it is debilitating right now and I have very limited mobility.
I had an appointment with the Lymphodema clinic last Monday and they measured me up for full-length compression stockings. I am still awaiting for those to arrive, hopefully anytime now as it feels like my legs and nether region's will burst if they get any bigger. The lady was so helpful and informative at the clinic .... I finally got the advice and help I have been after. I understand it is a lifelong condition and I am not going to let it beat me but I do have a few wobbles here and there. This past 8 weeks has been such an emotional roller coaster!
I have learnt about the main 4 techniques for managing this condition: compression garments, LDM massage, skin care and moving or keeping active, as well as eating healthy.
I still can't currently drive due to my current swelling, which is annoying as I live out in the country.
I know I can't go back to my job of 10 hour shifts standing in a hot kitchen, so will look at a career change...which is quite exciting too.
I have bought herbal tea to help move limph, incorporated oat bran into my diet as well as eating more of the following foods: citrus fruits, bananas, berries, spinach, beetroot, wholemeal items such as pasta, rice and bread.
I also bought Chub Rub underwear.....amazing! Arrived yesterday and I am loving them.
So to summarise my huge novel (sorry guys), can anyone suggest any other hacks that night make life easier for me? Any tips would be greatfully appreciated. Thanks Xx
Aww thanks 
xx
