Back to Life and the hospital

Last week was horrific!

It started last Tuesday with a visit to my GP for what I thought was a bladder infection, due to my history she couldn't rule out possible cancer spread so suggested I go to A&E and have an MRI scan done that day! Of course this scared the shit out of me but I went along with it. 4 hours waiting in A&E having blood and urine tests and still none the wiser then a chap shows up with a wheel chair and promptly takes me off to a ward where he informs me I am to spend the night! Around 6 in the evening 2 chaps show up and wheel me in my bed off to have the MRI scan, I was in the blasted thing for 40mins with all that noise so came out of it with a massive migraine, I went back to the ward and spent a extremely nervous night there, terrible night not being able to sleep, noisy, people throwing up, people constipated and straining to go next to me, utter nightmare.

At around 2.30 my Oncologist and team came round and we went through everything, apparently the urine test were negative and the MRI didn't show any new lesions phew.......... however, now they want to do a CT scan on my brain, so off I go again in my bed being wheeled by 2 chaps to the CT scanner, scan complete they dragged me back to the ward where I sat nervously waiting for results.

Results through and no I haven't got breast cancer on my brain, the only plus out of all of this is that the scans were done in 24hours and I got the results almost immediately, normally I have to wait 6 weeks for results!

It was still a harrowing experience and one I would not wish on my worst enemy the waiting game, the needles, no veins all the usual fears wrapped into one huge shit sandwich.

Whilst I was cancer free the scans did pick up problems with my back and neck that will need attention and are a result of being on Herceptin and the other drugs affecting my bone density. Back aches, neck spasms are now part of the new norm for me.

Life with cancer is resumed and jolts me back to the reality of what I am living with.

Wish it would just fuck off.

Getting the balance back

Its been a while since I last posted and I am happy to report, all is ok on the cancer front and I am adjusting to life without the ovaries. Hot flushes are still an unfortunate part of my life and I do hate them BUT winter is coming and the weather is cooler so life becomes less hot and bothered.

Last week I had a appointment with my new oncologist Dr G. is amazing I really get on with her and 

its been a long time since I actually spoke with a full fledged Onc. as my previous Onc. sadly died of liver cancer however, I always seemed to be dealt with by registrars. I've complained a lot of times about feeling out of balance, my size 32 chest has grown to a size 42 on the remaining breast and its a pain, not only is it massive and heavy its exasperated by the fact I can't wear a bra, I've tried every bra known to mankind and none of them are supportive and pain free. My problem is I had a lot of lymph nodes out and due to the fact that I was skinny (size 8 back then) the nodes were in with all the muscle which my surgeon had to dissect, it took him ages and he had to cut through muscle, my armpit area and my torso on the right hand side are badly scarred and so whenever I wear a bra no matter what type it digs into my scar tissue and ends up feeling very painful, so much so that I have to take the bra off after only half an hour! So this leaves me not wearing a bra most of the time and feeling very out of balance, Dr G. could see how out of balance I was carrying myself and suggested that she would refer me to a breast surgeon who could perform a mastectomy of the left hand side breast as a life enhancing operation. Fantastic! So I am now waiting for an appointment to see a breast surgeon and whilst they have a policy of not operating on a healthy breast they might when they realise how out of balance I carry myself and the ramifications of this on my body and life. Considering they perform breast enlargement on the NHS I think this isn't a big ask, considering what I've got and what I've been through. Dr G did explain that it wouldn't be this year as its not an emergency which is fine by me, I'd rather have it next year anyway. So fingers crossed this will happen and I will be rid of the massive boob that blights my life.

RIP Dr Stephen Kelly

It is with a heavy heart that I can now report that my consultant Dr Stephen Kelly passed away last week. I found out by chance as I phoned his secretary to ask why I hadn't received a letter telling me when to come in for my CT scan results, it's been 8 weeks! This has happened before so I didn't think much of it and presumed my results were probably OK, but the real reason is because Dr Kelly had passed away and thrown the whole of oncology into turmoil. There were rumours and whispers of liver cancer but I thought he'd beaten it, apparently he had not. It doesn't seem right that someone devoted to treating patients of cancer should fall foul of the very same thing. I am in total shock and feel floored by this sad news. Now more than ever I need to move my care to a new hospital with a new Consultant. The other Dr's at my hospital do not inspire any great confidence and I've not really had very good experiences with them. Dr Kelly was by far the best if not at the hospital then defiantly in my area.

Absolutely gutted.

Blood test results

Finally got hold of the GP who ordered the blood test's to verify the status of my thyroid although have to say she wasn't keen on testing my thyroid she seemed to think I needed a test for my blood sugar. So the results were as I thought something is wrong with my thyroid its under active so this means I might need thyroxine tablets to balance it up, however the GP wasn't worried about it and said that usually in this instance they would test me again in 3 months and then if all was the same they would prescribe thyroxine tablets, BUT as I am a cancer patient she didn't know if this new drug would interfere with any of the other drugs I am on so it waiting until I've seen my oncologist which is fairly soon at 11.30 this Friday. I thought that was all but no there is more..... my cholesterol levels are off the scale!!! what the fuck!!!!! I was like "thats to do with diet isn't it?" GP said "yes it can be but in your case its probably to do with all the treatments and drugs unbalancing your body etc" my response was "what shall we do about it" GP reply "I'd rather deal with the thyroid problem first and then we will look at the cholesterol" my response is "urghhhhhhhhhhhh" for fuck sake!!!! So if the cancer doesn't kill me then the cholesterol will eh!!!! GP doesn't seem to want to jump on this and I am very worried about it, herceptin affects your heart muscle not in a good way otherwise they wouldn't be checking my heart every 3 months and now this high cholesterol means my poor ticker is wacked out!!!! Will be seeing my dear Onc. this Friday and taking the test results in so he can ponder over it see what he comes up with. I'll keep you informed of my progress and of course the much anticipated CT scan results urghhhhh it never rains and then it fucking pours..........

Hospital keeping me on tender hooks AGAIN.....

So you might gather that from the title of this post its not gonna be a good post. Well back in early Oct I had a CT scan the usual 3 monthly one and was told to ring for a results appointment I did phone and had an appointment a week or so ago still no results but Onc assured me that all was going to be ok and that she would phone or write with the results as she didn't anticipate it being anything bad. Fast forward onto today and I have a letter asking me to book yet another CT scan and a blood test at my local GP's so on the face of it doesn't inspire me at all in fact I feel like total shit why can't they just tell me what the fuck is wrong!!!! I mean it is my body right! All this is it bad or isn't it bad shit just tears me apart its so stressful if I didn't have anything wrong before I'm gonna get ill just from the anxiety of it all. Bloody fucking shitty hospital will keep you posted and update this later as I've spoken with Onc's secretary and told her I need some answers by the end of today otherwise I shall just keep ringing and ringing and tomorrow I shall go up there until I know what the fuck is going on.

Life goes on.....

We are still coming to terms with the tragic loss of our lovely Ted we also found out on the same day that one of my close friends mother had lost her battle with Myeloma Cancer we were dx at the same time 3 years ago and had built up a support network for each other both of us enjoying juicing and living life healthy then wallop she's gone, the chemo she had been on stopped working this coupled with a fall in the night where she broke her leg (she was 70) was the final straw and she was put in the hospice and never came out. We will be going to her funeral tomorrow and yet again I am reminded how fragile our existence really is. The weird thing was Christine was also an avid cat lover maybe Ted and Christine are together I know he's in good hands with her. Its so hard Teddy was such a character cat and loved the woodland garden. We walked down through bluebell wood this afternoon and it was stunning somehow it just didn't seem the same without Teddy he loved this time of year.

So, life moves on. Lee has booked up his training course for the offshore Rigging in May and will be away for a week and a half when he returns we will take the next step and see about getting him some offshore work for a 3 week period after which we will be able to afford to move which is what we both want now more than ever due to our recent loss.

I had an oncologist appointment to find out what the hell was going on with the 'something' on my Liver apparently the radiologist wont budge and continues to sit on the fence ie: he wont say whether or not it is cancer. So we are back in square one again and I'm to have yet another blasted CT scan in about 6 weeks time!!! because of the back log. I ask you this is so fucking out of order. I feel like giving up. Then I was asked about my migraines to which I replied yes still getting them infact they have increased last week I had 3 and so far I've woken every day this week with a migraine. Thanks to Sumatriptan I am able to function but its not good to wake daily with extreme nausea and a pounding headache so now they want to do an MRI scan on my head to determine if its cancer or just normal migraine stuff, like ya do!!! The only plus from the appointment was that she (registrar not onc) asked how I was doing on the Tamoxifen I decided as we were being honest and open that I would let rip about the shit. I told her about my aching joints and my massive weight gain nearly 4 stone! she agreed that the side effects were extreme (not everyone will react this way) and that weight gain was definitely a result of taking the drug, they have decided to re-check my blood and see if I am through the menopause if I am then they will take me off the dreaded Tamoxifen and replace with another AI that apparently does not cause weight gain although the joint pain might increase. I don't mind this as my joints are taking a bashing with all this excess weight that I've been carrying around. Bloody hope and pray I am through the menopause. It was left that I shall go back for results in July!! seems like a long flipping wait then! Going to see GP about changing hospital only trouble is I'm worried that if I do it now that things could be forgotten about during the transition, so not sure whether its bad timing to change at the moment.

I've been trying to paint but all this shit the deaths, the drugs, just general cancer shite doesn't inspire me to be creative. However I have managed to finish one painting and I've got some prints done so will drop off at a lovely gallery in Weston.

Will keep you posted as too the Liver and now the Head crap. xx

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.

Oncologist appointments and a Head Scan...

Firstly I would like to get my most recent moan out of the way, last friday I went for my 3 monthly onc appointment, I waited for an unprecedented 3 hours!!!! when I did finally get into see the onc it wasn't my onc. it was another onc. and he hadn't had time to read through my notes so I had too relay my whole sad and sorry tale all over again, annoyed and upset I left not feeling very confident about my team or the hospital.

Some readers will already know about my struggle with the monthly migraines that I used to suffer, I say used to suffer because unfortunately they have now turned into twice weekly occurrences, this is just two to many migraines so at my oncologist appointment informed them of the headaches and now am awaiting an appointment time for a MRI of my head, I am pleased about this mainly because every time I get a headache I tend too think that there is something more sinister going on this only exasperates the headaches even more, I need some closure on the migraine situation and an MRI is probably a good way too go.

After writing all of the above I have now found out why my own oncologist was unable to see he has been fighting his own battle with Liver Cancer for the past 6 months, this was news to me no one at the hospital has told me of this I found out this morning from the nurse that gives me Herceptin at home, too say I was shocked is an understatement I feel for my poor prof and wish him well, this news has decided me, I am definitely going to change hospitals as the oncologist I saw on Friday was in fact his replacement and whilst I appreciate how busy the new prof is and I don't doubt his abilities or his skill I feel that the oncology dept at my hospital is now very over subscribed this is part of the problem so many people needing treatment and appointments and not enough Dr's or staff. So as we are looking to move up to Somerset anyway and have decided to change hospitals and with it the team to the highly recommended Taunton Hospital apparently it has a new specially built cancer unit and I've found out I can still have Herceptin at home.

An early Xmas Present.....

Hi everyone,
Last friday I went to the hospital for an appointment with my oncologist to receive the results of my bone scan and CT scan, the news is the bone scan came out clear and the CT is the same as the last one in other words I'm stable, this is fantastic news and I'm taking this as an cosmic early xmas present. Still doing herceptin once every 3 weeks by IV and taking Tamoxifen daily although I asked for a blood test to determine if I was still menopausal or too see what hormones I am still producing including estrogen, my onc seemed to think I was still producing estrogen which if I am would mean I should continue to take the dammed Tamoxifen if I am not then they can put me on a drug called Arimidex click on this link if you want to find out more about it http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Hormonaltherapies/Individualhormonaltherapies/Anastrozole.aspx it's supposed to be only for post menopausal women and like all these drugs comes with its own concoction of side effects BUT it appears that Arimidex does not cause weight gain which Tamoxifen unfortunately does and I had this fact confirmed by my onc who told me that the Tami definately does cause weight gain, uh yeah too flippin right try 2 bloody stone in weight first time ever in my life I've put on this much weight and I don't feel good on it, I've had a couple of falls and really bruised myself mainly due to taking clonidine which is now stopped but also I believe to rapid weight gain and not being used to the new me. I am wishing that I am post menopausal so that they can take me off the Tami and put me on the Arimidex. I did feel kind of uncomfortable chatting to my oncs registrar about this as she looks about a size 18 and didn't feel like discussing weighty issues with someone who obviously has had too live with weight problems. The upshot is that I have had a blood test and am now waiting for the results so will keep you all posted.
Love and light to all xxxxxx

A fragile existence.....

Since I last posted I have been for my 3 monthly appointment with my oncologist, and as a result I am to have a bone scan and a CT scan, the bone scan is scheduled for next monday and will take up most of the afternoon, the last one was back at the beginning of my dx, so I have been feeling fairly anxious about it. The main reason for the bone scan is because I have been experiencing a weird pain on my rib cage underneath my good left side breast, this has been worrying me and I have tried to ignore it and then realised that ignoring things is what got me into this mess in the first place. As soon as you think things are returning to normal up it pops, so I expect to be a little fragile for the next few weeks or at least until I have the results, of course I will keep posting and keep my blog up to date, but please excuse me for not feeling on top of the world.