I hope this helps someone.
I am 41.
In May I thought I had my first ever dose of cystitis I congratulated myself on never having it before and being a pharmaceutical rep instead of going to my Gp or pharmacy for treatment pinched samples from a fellow rep to treat it.It didnt work and two weeks later I went to my Gp by now I was pretty uncomfortable with symptoms of retention and bladder fullness.He gave me antibiotics and sent me away.
This seemed to work we went on holiday discussed having another baby and carried on with life.At the end of June the symptoms returned this time I had blood in my urine and felt very uncomfortable.Again my Gp gave me antibiotics there was no resolution so he sent me to the urologist.The appointment was mid July.
He examined me took a urine and blood test and rang me back to say there were suspicious cells in the urine test and I needed a cystoscopy.
This I had a week later it showed a high grade muscle invasive tumour in two places in my bladder with a less invasive growth in another situation.He recomended a radical cystectomy and referred me to a specialist unit for a second opinion.They agreed with his recomendation and surgery for a continent diversion due to the tumour involving the outlet was booked for the 23/8.By now I was having problems passing urine and had to self catheterise due to the obstruction and to maintain continence.
My surgery was to involve removing my bladder urethra uterus fallopian tubes ovaries and the front wall of my vagina.I would be left with a stoma in my tummy button which I would catheterise every few hours to pass urine.The surgery didnt go well my heart rate and bp dropped to unsustainable levels and they had to do a quicker operation which means I have a urostomy that needs a bag to be worn at all times.
It took me two days to start to come round but I recovered quickly.The cancer had penetrated the muscle wall so I have been recomended to have chemotherapy.I am currently in the first cycle of that.
I have found the anticipation of treatment harder than the actual treatment and the instant menopause the hardest thing to cope with.Change of body image has been catastrophic for me and a huge issue I have always been fit and healthy and takena pride in my appearance.I know I can still do that but it wont ever be quite the same.
Hairs gone and I am so tired I rubbed my eyes last night and all my eyelashes fell out .This is so hard.
Its now two months since I had the cystectomy and things are getting better.I am learning to cope with the stoma and how things now work.My wardrobe has had to change so we have had a few shopping trips and I am learning to accept that tight fitting things are no longer an option.This is the new me.
I started my second round of chemotherapy this week and am
doing ok on it although last time it was after the second dose that it hit me.My weight is staying stable which is good I was worried I would gain weight due to the drugs or loose too much due to nausea.I hate the hair loss which was dramatic and upsetting.It shouts cancer to the outside world and if nothing else I want to keep this to myself.
My main fear at the moment is being able to be intimate again with my husband.My surgeon says everything is now healed and whilst different it is fit for purpose so to speak.My husband assures me he still finds me attractive (goodness knows how)and poor soul is keen to give it a go but I am terrified. I cant imagine ever feeling ready everything feels so different .Maybe the way forward is to wait until after chemotherapy drink a lot of wine and just go for it.
I have been so lucky with the unending support I have had from everyone on this website,my lovely family and long suffering friends it makes the biggest difference.
We went for my first follow up appointment today after blood tests and scans last week.The good news is currently I am clear of disease.I am tolerating the chemotherapy well so they are going to extend my treatments to 6.I am seriously fed up about that I so wanted to have finished treatment before Christmas and to start feeling well again.Steve asked about long term prognosis I knew he would I have been playing at osrtiches and not wanting to know he has to have all the information.Even after all this bloody treatment the chances are the cancer will come back I have less than 40% chance of still being well in three years.I keep thinking I have had my worst day and then another worst day comes and hits me between the eyes.I have no bladder,no uterus half a vagina that doesnt work I pee out of a hole in my side and am bald all to try and get rid of a cancer that is probably still going to be there hiding somewhere.Its more than I can cope with.Today is not good I just want to roll up in a ball and cry I feel so sorry for myself.Hopefully I will be able to see a positive side tomorrow.
I have had my chemo treatment this morning and seem OK it usually hits about 7.00pm.I have pulled myself togethere over the last few weeks and am feeling more positive. The urostomy is behaving and gets easier to deal with each day.I have started HRT which helps hugely I feel so much better and in control.We have got used to the chemotherapy and have a routine going I know when I am going to feel good and when not so great.The weather is beautiful and the autumn colours fantastic.The children are starting to get excited about Christmas as am I.Today it feels like we can beat this I certainly am not going to let it beat me.
I had a phone call yesterday to ask me to go in this morning for a blood transfusion due to v low blood counts.So off I went had two units and came back.It might be in the mind but I do feel more energetic this afternoon and have even cleaned the freezer out.I was having a hot flush so it felt like the ideal job.Its supposed to work within 24 hrs and help me not feel so tired and breathless.Once again I thanked goodness for my PICC line which has made everything so easy especially when the lady next to me was still being prodded and poked trying to find a vein when I was half way through.Lets hope I am indeed a new women tomorrow and full of beans.
28 of November
The transfusion did its job I have had the best week for a very long time.I have been doing the school run cooking meals and functioning as a person in general.It has reminded me how abnormal my life had become.My next chemotherapy session starts on Monday and I am dreading feeling wretched again.But its got to be and thats that.The children are busy practising nativity plays and making Christmas decorations.I am really looking forward to Christmas it seem s so precious and I hope I get to spend many more with them.We have done all our Christmas shopping whilst I have been feeling well.I have bought my husband a lovely ring which I want to get engraved.He has been so fantastic I dont know what I would have done without him.
Heres hopeing for a white one.
8th of December
The times running away.I had the first dosing of my fourth round of chemotherapy on Monday and Tuesday and feel pretty rough.I have been soooo sick and for the first time my fingers feel tingely it makes doing anything tricky.We had Archies nursery nativity play this morning and I just wept all the way through he couldnt say his lines he was so busy waving at us all.The girls have theirs next week and I really hope I am well enough to go the Cisplatin usually is the worst and I have that on Monday.Otherwise things are going Ok the stoma is Ok and I have got used to it being there I dont like it but I am no longer thinking about it all the time.I think I have lost quite a bit of weight the clothes I bought after surgery to make room for the bag are a bit big and the things I couldnt wear because they were too tight with the bag are now plenty big enough.
We are about ready for Christmas I think we are going to leave it until a week on Saturday to go and get a tree