Aches pains and fears!

Hi Ladies

This is my first post here and I'm hoping some of you can relate!

i had a rad hysterectomy with lymph nodes and ovaries removed in June and given clear result 2 weeks later. Initially I recovered really well, overjoyed I threw myself into life after surgery. I know I was daft but I started running again several weeks after op and was back up to 15 miles a week at around 10 weeks post op. 

I then went back to work part time. Since then things have really crashed. I found a lump in my breast (found to be tissue build up from HRT) then my 4 month check was cancelled by the hod purse so I have to wait till this coming week. Since then I've had every pain imaginable. I've had mild backache since the op but this has become worse with hip and thigh pain too, with a feeling of burning and swelling. I've also had a UTi. Apologies for tmi but I feel like I have constant wind, pee all the time but never fully void my bladder. Needless to say I'm not exercising much at all now Which probably doesn't help!

emotionally I am a mess. Of course I google my symptoms and become convinced it's recurrence. In my more rational moments I wonder whether a lot of it is a reaction to the breast clinic, cancellation of appointment and severe anxiety.

i'd love to talk to others who can understand how I feel!

Rachel x 

Hi Rachel, I think all of us can relate to the fear of recurrence. I can say that with time the fear does get easier although every new pain ache I get I immediately think recurrence and cancer head comes back with a vengeance. I had to have an mri scan on my back last year as the pain was/ is unbearable somedays, turns out it was partly due to RT and the hysterectomy. Do not google it is not your friend and the info and stuff is mostly outdated. Make sure you mention every ache and pain at your appointment, I always go with a list lol. Let us know how you get on

Love lea xxx

Hi Rachel,

I had exactly the same op, and thankfully same results as you back in mid May. I was great for the first 3 months but now seem to get all manner of annoying things going wrong. First it was dreadful pain before bowel movement so got hauled in for a CT scan.That was all clear, but then at my 3 month check she noticed lots of granulation tissue which had to be removed (just got the all clear from that too). My consultant also referred me to a Lymphedema Clinic as she is concerned about some swelling in my ankles & feet, so got that this Monday.

Interesting you mention about the breast tissue. I had a routine medical at work a couple of weeks back and the doc noticed a few areas of fiberous tissue so recommend that I see a specialist to get it checked.  Going to see my own gp about it first though to see what she thinks!

So yeah, while I largely remain positive about things it does get frustrating that all these "extras" come off the back of the surgery and not the actual cancer. I feel like I should be grateful that that has gone, but i'm just getting really peed of with feeling like I'm constantly at the docs!!! 

Hopefully in another few months all of this will be behind us!

Love Greta x 

Thank you so much for your replies ladies. It really helps to know I'm not alone. Since my post op check it has felt a bit like I've been just left with no support and I think after finding the breast lump it just brought everything to a head. I am banning myself from Google as I know it's really unhealthy! 

I'm going to have some CBT which I hope will help and I will make a list ready for Thursday's appointment. I think I was all geared up for it a couple of weeks ago and then when I got the letter cancelling it I felt that everything was going wrong. 

i'm also going to go to our local Macmillan centre as I think I need a little more support.

Greta I agree wholeheartedly about feeling I should be grateful. It's very odd, one minute it's there, then it's gone and you feel a bit in limbo!

Take care ladies x 

Hi everyone ;-)

I can totally relate to how you are feeling! The first few follow-up appointments are a nerve-wracking time, and you are likely to have some 'ghost' symptoms. But also you must mention every single one of them to your medical team just in case. Living under a microscope is a difficult and stressful existence because our bodies normally develop tiny little abnormalities which fix themselves, but if you happen to have something going on when you have your follow-up scan that has to be investigated as well. It's a flippin' pain! But hey, you'll get through it. I had CBT too and it's really helpful.

Yes, once the full-on treatment has finished and you are just on regular follow-ups you do feel as though most of the support has disappeared, but you do still have access to your CNS and Macmillan don't you? Bother them! That's exactly what they are there for!

Be lucky :-)

Hi Rachel,

I had the same op in August. I have experinced several of the same symptoms as you, and I have chatted sometimes to various people who have helped. Here is a run-down of what helped me, I hope you find the help you need. Do go easy on yourself, especially with the breast thing flaring up too. 

The Gynae Cancer nurse was good at saying that all my symptoms were normal. She says it takes about a year.

The Macmillan nurse was very experienced and was good for the emotional side and setting my expectations.

The osteopath (private) was excellent for the bowel pain and the difficulty urinating, the first visit made a massive difference. She just touched my tummy, it was beyond belief. She was also best at answering questions about the aches and pains.

Pains could partly swollen lymph nodes (groin) and back ache due to a change in posture after the op, especially as core muscles are affacted (even if very fit the fascia between organs and muscles is affected, all innards are a bit free-floating, tummy was inflated so muscles were moved around) an osteopath can help with this.

when I get the swelling and aches I always try to rest with me feet higher than my head, I see it as a sign that my body isn't handing the movement of fluid so well and I don't want to overload my blood/lymph vessels when they are trying to mend themselves.

bladder - a herbalist recommended cornsilk and meadowsweet and it did help, I too have trouble emptying completely, especially after lying down.

General healing and emotional stuff - there is a good book called Womens Bodies Womens Wisdom if you are interested in how our bodies show our emotions. Reiki is a good general healing and a good therapist might combine this with something like EFT? (Emotional freedom technique). 

Best of luck! Xxx