1 year since diagnosis - mysterious leg issues and general thoughts!

Hello lovelies, Not posted for a while, yesterday was 1 yr anniversary of finding out I had cancer. Ha. Interesting reading back through my diary. Anyway, my issues since radical hysterectomy in August seem to be bladder - no sense of full and hard to empty, getting the hang of it though. Also legs. I variously get stiff joints, long pains down thighs, swollen-feeling joints, last few days pulsing pains, perhaps because I have been bodyboarding. I can't tell if related to veins or lymph removal. Am constantly worried about lymphedema, although Consultant and lymph nurses vague, have given up asking. I am getting fitter (energy really came back a month ago) and cycle, do yoga etc. I spend time most days with legs raised. Plus Grrr at shorter vagina, the stitched-up bit is tender. Can you get reconstructed?! I just want to have a moan really, I feel like I am better of cancer but in worse health in general, it is weird. I am grateful and cross, I know this is quite common. I have had some great counselling at Penny Brohn cancer centre which has helped with anger at intimidating Consultant (I think of her daily, but getting better). I have had two follow-up appointments which although have been with nicer Cons I find really stressful, I gather that everyone has a different pattern of follow-ups. I didn't want a vaginal exam first time but did second time. It all feels quite vague as Cons says women know more that Drs if cancer recurs, which makes sense to me but makes me wonder why I go back. Perhaps I need to call the nurses for a chat. I guess I am feeling that support and info for the varied and irritating post-treatment symptoms is really limited. Also that the year of cancer has been just amazing, good and bad. Thank you to all who have supported me on the way. Good luck everyone and thanks for reading my stream of thoughts! Moonfish PS I have discovered the joys of CBD oil, google Love CBD to find out more if interested, it does lift my spirits, perhaps I will go and take some now ;-)

Hi Moonfish:

Bodyboarding? I'm not in the UK anymore, but I do remember how cold the sea can be. I'm surprised you didn't freeze your tiny bottom off!

Tivoli chatted on here once about reconstruction although I think her consultant advised against it. She'll probably drop by with more info when she get's in from her beautfiul Greek beach. There was a bunch of talk on here somewhere about possibilities of stretching and advice from docs about "use it or lose it". I don't know.  I'm going to see my doc for a post op appointment this week and I shall certainly mention this whole stitched up top with no cervix stuff. 

Never heard of mistletoe treatment. How are you finding it?

Congrats on being CC free for almost a year now.  Way to go!


Hiya Moonfish :-)

Nice to see you back again, sorry you are feeling a bit grumbly :-(

Certainly vaginal reconstruction exists, though not too sure about any details. I guess it gives more space for him but I wonder how much sensitivity it has as far as you are concerned. Unlike most people here, I did not have a MultiDisciplinaryTeam. I had a gynaecological surgeon who was the head of gynaecology and obstetrics at the local hospital and he ruled that department like an emperor. If he decided you were having surgery then you were having surgery, and if he told his staff not to tell you anything then you weren't told anything. After that phase was over he sent me over to his friend the oncologist, head of the chemo Dept who prescribed chemo rads for me. Since that particular city doesn't have a radiotherapy machine I had to travel miles to another city that did have one, for my treatment. There I had a lovely woman radio-oncologist and another lovely woman chemo-oncologist. When all my treatment was over I went back to the original oncologist at the local hospital for follow-up. He was so full of his own self-importance it was impossible to get an appointment with him and so after a spell of knocking on the doors of various consultants and finding them all unavailable, my follow-up is now directed by the radio-oncologist many miles away. It is she who has poo-pooed reconstruction but really the question should be put to a Multi-Disciplinary Team if you are lucky enough to have one :-)

Sorry if that was a long-winded answer to a relatively simple question :-)

Be lucky :-)

Hi folks and thanks for your replies, I will mull over the reconstruction thing - let me lnow what you find out - tbh I don't really want more surgery. Perhaps I can arrange a penis-shortening ;-)

I' ve put my support knickers on, having just remembered I bought them after lymphedema nurse suggested ages ago. so fetching!

The sea was cold - wetsuit on - but the Shaman recommended it and it felt so good. I love the alternative stuff as I am sure you have figured.... shaman was ace...

Tiv, even British consultant felt very 'my way or the highway' - second opinion pretty pointless as they all decide treatment together in MDT so when I was wobbling over surgery I didn't feel I had an option although I tried to discuss. Your radio-onc sounds good and I am glad you have found her supportive.

Teresa, mistletoe felt good for a while (gave me confidence that I was improving immune system) but then I realised that it made me quite moody. I could have fiddled around with the dosage, however I have parked it for now and can return to it at any time. I felt warm on it, and know that some alternative cancer therapies use heat to kill cancer. It was interesting and useful, GP thought I should stay on it for ever, he is a leading mistletoe Dr. Look up Iscador which is the brand. 

love and hugs!



Penis-shortening sounds like a grand idea :-) And it doesn't even require surgery, just a carefully timed snigger :-)