Highs and lows

So went to the hospital for the results of my CT scan and to discuss the latest issues regarding the thyroid and cholesterol. The CT scan was good everything is stable or the same as the last scan big sigh of relief phew........

Not so good was the discussion regarding the massive 5 stone weight gain, treatments and my thyroid. Of course I didn't get to see my actual oncologist as always I see one of his minions a female Dr that for the purpose of this post shall be named Dr C. came out who is very nice BUT wow she just doesn't buy it that the treatments have made me put on this weight which I cannot shift. She told me that the thyroid wasn't anything to do with the cancer and was "something you probably always would of developed" WTF!!! so its got nothing to do with the chemo or the radiotherapy at all, bullshit! of course its to do with treatments I was fine before I got cancer I never went to the doctor and certainly never had a problem with weight gain, thyroid or cholesterol. She then proceeded to tell me that as for the weight gain I needed to watch what I was eating try to eat more green vegetables, eat smaller portions and change my diet. At this point I nearly blew but somehow managed to retain an air of calm in which I informed her of my monumental lifestyle changes she continued to prod me with "you need to do more exercise" I agree BUT I can't do to much as I get out of breath puff and pant and go deep red in the face then sweat profusely to dripping point I kid you not I actually think I am going to have a heart attack just walking up the fucking stairs!! did she listen to me did she hell!! No apparently its all my fault nothing to do with the treatments I eat too much of the wrong thing and don't exercise enough I need to swim for half an hour a day WTF!!! Luckily one of the nice nurses who has known me for as long as I've had cancer backed me up on the lifestyle changes and the organic green juicing etc the doctor just didn't want to hear it I reckon if she could of she would of sat there with both fingers stuck in her ears going lalalalala thats how far she didn't want to accept the fact that all of my problems are caused either directly or indirectly via drugs from the cancer, I have pondered on this and believe it is because if they put there hands up to this an admit its caused by treatments then they would have to deal with them, by denying it they dissolve any responsibility.

I then moved on to having my ovaries removed to which she actually giggled yes thats right laughed at me for such an absurd suggestion! not really though is it? I have ovaries that are fighting back and being kept at bay by a large nasty injection of Zoladex so why the fuck not take the bastards out and have done with it. At this point she left the room to check with my Onc. who sits in another room WHY!!!! god only knows whilst she was out of the room I chatted with the BCN who was just as mystified by the callous response to my questions she told me I could get a second opinion!  Dr C. came back to inform me that my Onc. agreed with her that I didn't need my ovaries out.  Just for the record I DONT FUCKING AGREE WITH EITHER OF THEM.

 Of course what she doesn't know is that one of the so called life saving drugs Arimidex I haven't been taking they prescribed it for me last year after I stopped taking the Tamoxifen telling me that it would be better than Tamoxifen and wouldn't make me put on any weight, after reading the side effects lists I beg to differ weight gain being the most prominent problem with Arimidex so I chose not to take it but have been keeping it a secret from them at the hospital. It is a worry and I have really wrestled with this one but I decided I would rather not be around if I am the size of a house and have to be wheeled round in a chair. Again quality over quantity is my moto and I am sticking to it. The Arimidex is a blocker for oestrogen the Zoladex stops the ovaries from producing oestrogen.

I also asked about the possible removal of my remaining massive breast. I can't wear a bra as my Lymphoedema is on my right hand side torso every time I do wear a bra I get a lot of pain, recently went to a wedding and had to come home early because it was causing me so much pain. It was suggested that I go see the Lymph nurse again....... I don't find that it really helps that much certainly not enough to stop the pain when wearing a bra. So I hit another brick wall.

To end the discussion she pointed out that I am stable and that all the drugs they have so far given me are working and will continue to work for the time being. This kind of shuts me up and makes me feel guilty for even bringing up the subject.  She wasn't interested in the fact that I juice organic green veg, take supplements walk 5 miles a day, don't eat potatoes, bread or dairy.  I am left with this problem what is the point in living if you feel like utter shit and contemplate suicide? Why have I been through all of this shit to come out feeling like life is worthless?

and breath.......results are in.....and its brilliant.....

Sorry its been a while since I posted on the blog but I've been very busy and admit to completely forgetting about posting!!! which is unusual for me. Anyway back to the post and what is going on with me and my 'something' on the liver. I went for an oncology appointment on the 1st of Nov as per usual a registrar walked in the room and just to complicate things further she's indian not that I'm racist but her pigeon english made it hard to understand exactly what she was saying, luckily whilst we (thats me and my partner Lee) were waiting for the Dr. my BCN walked past the room and popped into to see me, she expressed an interest in why I was there (which amazed me as she's not shown that much interest in me before) she asked if she could be present in the room when the Dr. told me the outcome of the latest CT scan on my liver and I told her of course.

So the Dr. walks into the room and starts to go on about 2 lesions on my liver (yes I was sat there in total shock as no one had ever mentioned anything about lesions) she also said "but of course you knew that" too which I replied "uh no, I didn't know anything about lesions on my Liver I was told something like a shadow" at this point I'm starting to well up and I'm getting a bit angry because she's not understanding the whole reason I'm there is to get the results not too be told stuff I knew already that doesn't make any fucking sense does it!!!! It was at this point that my BCN pipped up (first time ever!!) "has Sarah got breast cancer spread on her liver? or not?" Dr. responds "we think it is fatty tissue and the lumps on the liver are benign (ie: not growing) I'm thinking thank fuck for that and was visibly relieved, BCN also looked relieved then BCN left the room and came back in with my actual oncologist Dr. K. I haven't seem him for nearly 2 years as I either got fobbed off with a registrar and in some part because he was dx with liver cancer a year ago and has been fighting it. He looked well and was very pleased to see me, he told me that "I'm not worried about your Liver its just fatty tissue (probably to do with the chemo and weight gain) and I'm not worried about your Lungs either they are stable and nothing is moving on that front.

We spoke about my treatment ie: Herceptin and Tamoxifen to which he told me they couldn't do anything about the Tamoxifen but he was going to suggest that I transfer from IV Herceptin to sub-cut Herceptin very soon in fact I've just had my last Herceptin by IV the next one will be sub-cut Herceptin. Pretty good job as my veins are pretty shot to pieces and I now live in dread of the next IV (the sub cut will be injected into good old fatty tissue to which I said "I've got enough of that" All in all it was one of the best onc. appt. I've ever had and I let out a huge sigh of relief on the way out the receptionist heard me and said " I presume it was good news, bless you" she's a lovely lady it must be hard working  in there as you get to know all the patients by first name, some survive and some don't, bloody hard job.

Tamoxifen argument.....I'm off.....

I didn't really want to post this today but someone has got my back up...... as usual it's about the great Tamoxifen debate it was over this very same subject that I left the BCC forum as discussions turned into heated arguments and then just plain old nastiness. Tamoxifen strikes again it would appear, now I'm not a horrible bitch and until this shit happened to me I never complained ever to explain, I joined the FB chat group because things were getting out of hand and nasty on the BCC forum, the chat group I found was brilliant and in the beginning only a handful of us using it, it was so refreshing to be able to just say what was on your mind without having to answer, explain or justify why you said this or that. Last night I jumped on a conversation about Tamoxifen some one mentioned that her BCN had told her that Tamoxifen didn't cause Osteoporosis my reply went like this "Tamoxifen good for the bones what is your BCN on??? I mean I know we are all on drugs but seriously!! My BCN is also pretty rubbish she's nice but not great I've hardly spoken to her since all this began every time I do speak to her she just say's "Ring me whenever you want for anything at all" so I ring her and say I need to swap my prosthetic boob as I've put on weight and the good boob is much larger now, so she say's oh you have to go and see your GP who then has to write a letter and then we will make an appointment for you to come in and be examined and then you might get a new prosthetic, its this sort of unbelievable nuttiness that drives me bonkers!!!! end of rant xx love to all sarah xx" to which I got this reply "Sarah tamoxifen is good for your bones and doesnt cause osteoporosis, but AIs can cause bone degeneration. infact tamoxifen and other SERMs used in postmenopausal women actually has been found to increase bone density campared to post menopausal women who are not taking tamoxifen.... im also a BCN but if you do a search on google scholar for tamoxifen and bone density research you will find that the woman in the clinic is mistaken and the professionals are actually corrent in this instance... however thats not to say your BCNs might still be numptys. :) to which I replied " thanks for your input and with respect I don't question your knowledge about this subject especially as your a BCN, I would also like to point out that the woman in the clinic is not the only person I have spoken with who blames tamoxifen for getting osteoporosis, both women were very young when they developed it and I'm wondering if age and menopausal stage have anything to do with it? I found this information on Tamoxifen and posted it as a new document at the top if anyone is interested. For the record my BCN has not been 'there' for me through this I blame both the bureaucratic policy's she has to follow and the fact that she is massively over stretched with far too many patients." to which I got this reply its the last sentence that really annoys the fuck out of me 
"you might find these useful....http://www.mhra.gov.uk/home/groups/l-unit1/documents/websiteresources/con2032892.pdf from 2007 says one brief line that tamox does not affect bone density.... and this is from the MRHA in 2012.... doesnt mention it at all.... http://www.mhra.gov.uk/home/groups/par/documents/websiteresources/con152698.pdf somebody blaming tamoxifen and tamoxifen actually being the cause are two completely different things.... people are often looking for causes but there is no evidence that support your theory just some people who may have got osteoporosis anyway or possibly even earlier had they not been on tamoxifen.... there have been hundreds of studies on this and nothing to show any relation to BMD. in letrozole and other AIs there is a know causative link.... not wanting to argue but posting a document of somebodies opinions is not the same as the hunderds of research papers indicating no link".

Well sorry for breathing saying "not wanting to argue" was in my opinion very antagonistic and put a squash on anything else I might of wanted to say and a deliberate put down and shut up kind of comment, the chat group is on Facebook it is not monitored and therefore is supposed to be a free space where we can all voice our opinions and views without any fear of repercussion this has now changed and I've left the chat group and don't want anything more to do with it.

Just to put you all in the picture since starting the dreaded Tamoxifen I have put on over 2 and a half stone according to a few doctors and nurses at the hospital Tamoxifen is not to blame but then my onc and another nurse told me it was the fucking tamoxifen so you see all the information you get is totally conflicting and I don't care what some fucking medical statistic company says about this or that I listen to real people that a) I've spoken with and b) my own research personally I believe she was only getting angry because I slated a fellow BCN colleague and I have a horrible feeling I've already had a run in with this woman on the BCC forum as her name and avatar are the same of course she could be an internet troll in which case go fuck yourself. I didn't ask for her opinion on my opinion and I was not telling somebody else what to think they can think for themselves, I have a right to my opinion and I'm sticking with it I really don't give a flying fuck what anyone else thinks, I would never pull someone else up on such a sensitive issue she has in my opinion ruined the chat group for me and for that matter for everyone else because now none of us are allowed to voice an opinion for fear of being scollded. There is no right or wrong I was only voicing a view and being open to which end I feel like I don't belong in the chat group that has supported me and in turn where I have supported others in a similar position. Its a shame because I've been quite involved with it and was doing some stuff for the SBC website. Oh well back to dealing with this shit on my own without any external support.

Thank god for my blog where I can voice whatever I want without any fears.

Anyone who I added as a friend on FB I can still communicate with and will do so by private message only, like I said its not everyone in the group just one person.

Lymphedema? and the great flood......

Wow another one of those days!! Got bitten on my leg by a horseflie thought to myself I'll go to dr on Monday, then whilst enjoying a brief respite from the pouring rain (I live next village from Yealmpton on national news as it flooded) another of the nasty buggers bitten me this time on my right arm by wrist I've had all the lymph nodes out in that arm and distinctly remember my BCN (breast cancer nurse) saying "not to cause any trauma on that side or it could turn into Lymphedema (see below description) " so was worried sick I ended up phoning the NHS help line and they put me onto a very nice Dr who phoned me back and wrote out a prescription for antihistamines and antibiotics, so now drugged up to the eyeballs on the stuff, it never rains and then it pours excuse the pun!!!!

If any readers have had their lymph nodes out and don't understand the implications of this here's a description of what Lymphedema is. One of the most common causes of lymphedema is removal of the breast (mastectomy) and underarm lymph tissue for breast cancer. This causes lymphedema of the arm in 10 - 15% of patients, because the lymphatic drainage of the arm passes through the armpit (axilla). The main symptom is persistent swelling of the affected limb also note there is no tablet or drug to take that will relieve this symptom and once you have developed it, it can be very hard to reverse the process, the only thing you can do is wear a compression sleeve and of course exercise can manually move the fluid along so it always helps to do the exercises the BCN gave you whilst in recovery from the mastectomy.

On a lighter not I've been busy baking my first loaf of bread today in borrowed breadmaking machine, tasted delicious and I love the fact I know what's in it also baked a sticky toffee pudding smells yummy, sending you all my love and a cyber slice of the sticky toffee xxxxx