Ongoing pain before treatment & protruding mass

Jester. I'm so shocked and horrified by this! Even the frequent assembly line boredom by our profit-driven system isn't as egregious as this. YOu need an ombudsman! This is completely unacceptable. 

In reply to everybody's kind remarks, I've just had an hour and a half of talking/reflexology via the NHS, which has helped more so I don't feel so alone. I don't want to go to PALS because if I have to go in again, they'll know i've complained and will be pretty pissed off with me. I'll just keep on talking to you guys who are all so wonderful, taking the black strap molasses and try and keep positive. Thank you all so much Xxxxx

Thanks Suz, yes I suffered without too for longer than I should looking back - but not as long as you, not sure how you did it. It's when the pain became excruciating and constant non stop that I needed something, I couldn't walk, couldn't eat, no proper sleep, couldn't do anything really anymore, even thinking is a struggle when in so much agonising pain.  Unfortunately have found myself on them since surgery and just wondered if others had pain too - sometimes it's easy to assume we've all experienced the same / similar thing yet there's big differences, so really appreciate people sharing.  I'm still not entirely sure I'll be going down 'conventional treatment' route, especially the more I find out on the radiation - but I've yet to even find out my full diagnosis, it'll be on Thursday so I'll have some big decisions to make soon! I really hope you get your results soon and keeping fingers crossed for you Xx

Thanks Irene, that's really interesting & very happy for you that latest photograph shows no signs! Yes I just assumed I'd be back swimming, walking etc.. but I didn't know at time the implications with where the mass is attached to etc.. still to find out full details and yes, I've got lots of questions for oncologist later this week.  I just hope we're given enough time to ask & have a proper discussion.  One of my friends had ovarian cancer & she was told on 1st meeting her oncologist to basically stop asking questions & 'just get on with the treatment' I couldn't believe it. Hey ho, as I can see from this thread and poor Jester it appears it's pot luck on what happens during our individual journeys.

Yes I used to be really quite fit prior to lumps and pain appearing - I'm already quite tired too, I ended up sleeping most the weekend & haven't even started any treatment yet so guess that's a sign of things to come.  I'll try to be patient with it all, it's managing my expectations, so if it turns out I can exercise more than thought that's just a bonus but I'd rather be prepared for otherwise, so thanks for sharing and all the support, means a lot Xx

Hi Jester - I've been keeping an eye on your replies....as other members have said, I'm so sorry you've experienced all you have.  I haven't been through treatment yet so I've yet to see the aftercare etc.. myself.  It's seems like sometimes unfortunately some people just experience matters such as these completely differently to the majority. I tend to be one of those, for whatever reason, I swear I must attract it somehow!

What I did notice is you mentioned panic attacks and being teary etc.. I just wondered how old you are, which of course is not a direct question for you to answer - I was thinking more in terms of menopause.  I think I'm right in thinking most who go through the harsh treatment end up being triggered into menopause. 

In September last year, I'd not long returned to work from almost a full year off work due to severe peri-menopause symptoms, two pages long list of typical and not so typical symptoms. I was one of these being younger than 'typical age' for menopause & no changes to my cycle, but it was definitely hormonal fluctuations so had a battle convincing the GPs at the time. I had high anxiety I'd never experienced before, that lead to panic attacks, I was also very teary all the time, I had many different things coming and going throughout each cycle (very bad joint pain, very bad bouts of constipation & diarrhea, migraines lasting for a week, memory loss, extremely low episodes etc..) & some such as chronic fatigue and depression that were a constant. I went onto HRT that made some of symptoms worse, but I found out I was intolerant to progesterone! Long story short I had to research everything myself, specialist was a waste of time, & basically sort it all out.  I'm still on HRT (after finding correct progesterone) & the estrogen 100% helped a lot, couldn't be without it.  But just as I sorted that I had these lumps appear, just as I started back at work - one thing after another. 

Anyway, I could be completely off but just wondered if any of symptoms could be linked to sudden change in hormones? I hope it's something the nurses & oncologist considers for women who haven't been through it yet as hormones play a major part in our whole body.  If I go with treatment I know I may be triggered straight into full menopause but at least I have estrogen already.  Fully appreciate this may not relate to you and of course your symptoms down to other matters, I just sympathise with you as I fully understand how deliberating those symptoms can be & that's without trying to heal / recover from all of this on top too. If this doesn't relate to you , then perhaps someone else may read it & help them out. No matter what, sending you a big HUG.  

As a side note, magnesium is also good at helping keep things moving & regular - but it's probably more like coffee in the sense of triggering a gentle release.  The molasses, kiwi fruit, psyllium husk, apples etc.. will help keep stool soft. I take magnesium at night, have done for many years to help switch off & sleep, if I feel I'm getting impacted I just take 2 and definitely helps the next day.

As with any supplements / herbs / extracts etc... I'd spend money on 'clean' and organic options, too many have bulking agents / fillers - basically crap added to them which cause many issues.  I'll be thinking of you & hoping it all improves for you very soon - please let us all know how you are when you can Xx

I never cease to be amazed at how some 'professionals' missed the queue for bedside manner; your friend was really poorly treated but I sincerely hope that didn't extend to her medical treatment and that she has fully recovered.

Before I was diagnosed, my only symptoms were feeling slightly tired and thin poos - absolutely nothing else. I was easily walking 6 miles a day and was full of energy.  However, once I knew, it was as if I had been poleaxed and I could barely put one foot in front of the other.  Nothing had changed apart from the knowledge I now had, but the change in me mentally and physically was immense.  I am sorry that you are so symptomatic and am hoping that once treatment starts you will have considerably less symptoms and be in less pain.

I will be following your progress.

Irene xx

Hello again Em44, well I'm 75, so went through the menopause over 25 years ago but I still get the hot flushes. I take norethisterone for them and it works a treat. I've taken it for 25 years now, so I don't think any of my symptoms are menopausal, but of course you never know with radiotherapy, I don't think there's one part of the body it doesn't affect. I sometimes wonder if it should be used at all. My nails just shred away and break to the cuticle, it's just everything seems to be affected. I do take magnesium plus a probiotic and kept taking the probiotic all through the chemo/radio, even though I was told not to take any supplements as they could affect the chemo, but I kept taking the probiotic to help protect my tummy. Em thank god we all have each other here, it's made such a difference to my life and outlook and I look forward every day to hearing from everyone and their exeriences and it's reassuring knowing you're not totally alone. Xxx

Hello Irene, I've now tried the blackstrap molasses twice and the jury is still out, I'm not sure if it suits me. It certainly makes me windy all day and I poo several times a day on it, which I don't really want, I'll try again tonight, but do still have plenty of laxido if it doesn't work for me. If you google blackstrap it's a pretty wonderful product, good for all sorts of things. Regarding the lack of follow-up, this is just typical of the whole department and I just feel if I complain to PALS and have to go back in, they're going to be pretty pissed off with me, so will hold my fire for the time being, but I agree with you, it's absolutely reprehensible that this has happened. Clearly, it can't just be me they treat with such an offhand manner, there must be dozens of other people experiencing the lack of care, I just feel sorry for all of us. x

Yes, I agree it's totally unacceptable, but I'm bound hand & foot to them, so am just finding different  ways  of dealing with it all, especially through this great group of people who have given me more help and support than the so-called"team". xx

Hi Irene, we're a bit at cross purposes here because I'm not sure which friend you're referring to, I've only spoken about myself and I am post-treatment, I finished chemo/radio on 2nd January and all these things have befallen me since then. I believe you've had a far worse time than I have because you were stage 4, whereas I was stage 1. xx