Hi I am 37 years old and been going for regular smears told the lady every time I have a lump on my perinium that is getting bigger and very sore. Was told for the last 5 years it was nothing to worry about..... Even though I had high levels of HPV. Took poorly on the 19th of February rushed to hospital suspected sepsis. All test came back normal told them about my lump sent me up to gynecology and asked to do biopsy. Sent home for to have a good phone call on the 26th of February to ask me to go into hospital the next day 27th to discuss results of my biopsy. I was told on the 27th of February I have vulvar cancer and needed an operation to remove the tumor and have lymph nodes removed from both sides of my groin. After CT scan and MRI Scan then pet CT scan I was given a date if the 11th of April to remove all infected tissue and lymph nodes. Had operation all went as well as it could. A fortnight later back for results to be told I had stage 1b as it had not affected my lymph nodes so luckily I caught it in time. No further treatment was needed ie radiotherapy or chemotherapy as surgery had managed to get rid of the tumor. I am now feeling very tired and emotionally drained I have support from friends and family but feel like I am holding back on how I really feel as they don't fully understand how Iam feeling. I am healing well but inside I am very angry and upset. My left leg is very numb and my groin wounds are healing slowly right just stopped leaking fluid. My left lip is still very swollen and I'm worried it won't return back to normal as no feelings in it same as my leg. I am used to working since I left school so this is all new and very frustrating to me as I want to work but unfortunately I can't. I have a daughter currently sitting exams and her prom is cumming up I feel so down even though I should be happy. I feel like I am handling it all badly even though my partner of 14years says I'm doing amazing I don't think I am. I wanted to talk to others who have been through my situation so I know I am not alone.
Hi Plutonium
Welcome to the Online Community.
I am so sorry to hear of your journey with vulval cancer. I am sorry that you are feeling lonely and upset.
You certainly have had a busy 4 months and it is no surprise that now you are feeling as you do. It must have been frustrating to feel you weren't listened to when you mentioned the lump during your smear tests. I can understand your anger and being upset. To finally have it looked at due to suspected sepsis and then to have everything happen- it must have felt overwhelming.
I am pleased that it was early stage and there was no spread. However you have still been through something massive and stressful. You have had a big surgery and that naturally means you are recovering at home and gives you time to think things over and process what has happened. I found that with my own cancer (endometrial) that although I had well intentioned friends, colleagues and family - it can be hard for people to truly understand unless they have experienced it.
Although you say you are healing well- and that is good to hear- you are still in the first couple of months of recovery. Have you got a supportive CNS that you can talk to. Someone to check the healing and although you still have swelling and numbness etc- it might help to get some reassurance that what you are experiencing is normal and to be expected. And if there is something that needs addressing then they can arrange it for you. They may be able to suggest something that will help with the swelling as I imagine it must be extremely uncomfortable for you.
It is natural to worry during recovery that things will not get back to normal but from my own treatments I know that it does take time. I found it difficult at first as well with work- as I was used to working and you also miss the structure and day to day interaction with colleagues etc. I hope you have been able to keep in touch with them as this helped me.
It must be tough with the added pressure of your daughter sitting her exams. I hope they have gone well for her and that she now is looking forward to her prom. I understand that this is a special moment for you all- but you should not feel guilty for feeling down. I expected to feel really happy when my treatment finished but it took a while to process everything and work through the emotions. They ranged from feeling flat, angry, sad, overwhelmed and gradually relief started and once I had healed somewhat from it- then I started to feel better.
I am glad you have support from your partner but sometimes I found that the people closest to me were the hardest to talk to- I wonder if it would be an idea to call the Support Line tomorrow and just chat things through. There is some counselling available via Bupa/Macmillan but there may also be some support local to you. If you don't feel up to phoning then there is also an Online Chat feature that I have used myself.
I think how you are feeling is very normal for everything that has happened to you. You are still healing physically and dealing with the emotions of a cancer diagnosis. When something as massive as cancer happens, you can feel alone and while outwardly people think you are coping well- it doesn't mean that it hasn't been a really tough time. I found sometimes other people had more faith in me than I had in myself.
Please do not feel alone, you are not. Pick up the phone tomorrow- get the physical stuff checked for some reassurance and give the Support Line a call if you feel it would help. And post on here as much as it helps. Sometimes just writing it down and expressing how you feel can really help.
Jane
Hi Plutonium
Am glad that you have had a check up and that there are no signs of infection. It sounds a really painful experience. Sounds a good idea to wear no underwear in the house as I suppose the more air getting at it the better. It must be frustrating when you are normally fit and well to be going through this and no wonder you are feeling down.
I am sorry that work were not more supportive. But you should not feel guilty for taking time out to deal with a serious health issue. I was lucky in that my work were supportive- but I did feel guilty for a long time and felt I was letting people down by being off. I missed the day to day routines. It is hard when you are normally so busy and then need to take time out. And it does give you time to think. I suppose in a way I tried to deal with it by thinking that if I did go in, I would not be much use to anyone so to focus on getting recovered and fit again was all I could do. In the end I left my job to focus on health.
The fatigue you are feeling is similar to mine and it will gradually improve- your body is healing at the moment and that needs energy and dealing with the emotional aspect and processing it all also takes energy. I found pacing myself and doing a small amount and then resting, on and off throughout the day helped. Fatigue seems to be a common factor in lots of people's cancer journeys.
Something as big as cancer is going to affect relationships and I understand that although your partner is being really supportive- you are scared to say how you really feel in case it is too much for him.
Your cancer nurse will not feel like you are bothering them and it is their job to support you. Perhaps it could be that because you are feeling so low that you don't want to bother them? If you feel that the psychologist you saw helped then call them and ask for a follow up appointment. I don't know if this is one arranged through your hospital, but at mine there is something called HOPE counselling and with it there is an initial appointment to talk about what you need and want and how it can help. But it is a journey rather than a quick fix and there were 6 sessions on offer.
As the lady below mentioned there is something called Macmillan Buddies and that can be accessed through the Support Line. You can also email Macmillan if you prefer. You ay you don't know how you are feeling and are confused when people ask. I felt the same for a while. I didn't like being called a warrior or brave either. It made me feel a bit of a fraud. I certainly didn't feel brave- I was scared most of the time- but I was just doing what I had to do to get better.
Dealing with the scars must be hard but at the moment perhaps try to focus on that you are not yet healed, that will take time and you do not yet know how it will look when it is fully healed. Perhaps try not to think to much about reconstructive surgery yet- if it is worrying you- perhaps just think of it as being there if you do decide in the future you want it.
With your mood getting lower I wonder whether it would be worth consulting with your GP and getting monitored. It may be that a short course of something might help.
I am sorry that you are dealing with all of this. Think about calling the Support Line- they are lovely on there and sometimes just talking it through with someone who understands, can really help.
Jane
