Not so NICE Shame on you!!!

I like a few of my peers went to demonstrate outside the (not so) NICE headquarters yesterday hoping to make our point and show them the human cost of denying kidney cancer patients like myself our drugs on the grounds of cost!!. I had travelled from Nottingham, Jean Murphy travelled from Manchester Rose had travelled from Cornwall, but the (not so) NICE boss wouldn't even travel down the lift of his building to meet us instead he sent security and had us photographed while the (not so) NICE people hid behind a wall. SHAME ON YOU MR DILLON!!! The police were in attendance and to be honest it wasn't as if any of us had the energy to cause enough trouble that the police would be needed, the journey itself was enough for us. I was so proud and happy to meet Jean she is a true diamond and had Jean and I had our way we would have walked on to Westminster to take our protest to the government but alas that was not on the agenda but we intend to make it to Westminster soon and we hope everyone who turned up yesterday turns up for the next demo. Andy it was so good to finally meet you and I hope that you too will be at the next step in the campaign to get the drugs kidney cancer patients need to give us our right to life!!. Today however I am shattered and suffering for my protest UNLIKE MR DILLON!!! who probably just went home had a drink and everything is back to normal for him today. Just another Thursday for you Mr Dillon? for some of those people who travelled to meet you yesterday our normal Thursdays are numbered thanks to you and your committee!!!!. SHAME ON YOU!!!

London Rally to Protest

I will be there!!! I am planning to arrive at St Pancras about 11am ish then get a taxi to Euston Station to meet Helen then we plan to share a taxi to Holden to meet up with the rest of you rebels... save me an XXL T Shirt pls and whatever other promotional goodies there are. On a different note, I went for CT guided lung biopsy last week and as you all know I was terrified so they got me on the table and gave me a local in my chest took a couple of runs with the scanner then placed the needle for the biopsy into my chest. I was shaking all over uncontrollably but was ready so they ran me through the scanner one more time to check the needle was in place to take the biopsy, then came back and said "sorry we cant do it as when you breathe the piece we want to take the biopsy from keeps moving and going behind a rib, so even if we manage to catch it the chances are we wont get a usable sample, so you can get dressed and we will get in touch with Dr Baldwin's team to arrange a broncosopy" I was gutted!!!! I had worked myself up for this and all I wanted was for it to be over, now I have to go through it all again. I tell ya!! my case has been a comedy of errors since before I was diagnosed and now I feel someone is taking the piss. Anyway on Tuesday I went to day care at the Mc Millain centre and sat with my nurse and sobbed my socks off, I told her how I felt and she wants me to see one of their doctors on Tuesday for a chat about where I want to go from here. So now as it stands I have a results appointment for results I wont be having on Tuesday and a meeting with a Mc Millain doctor same day and then Wednesday off to London. 11 months on from diagnosis and still nothing more confirmed on the lungs, am I wrong to feel this should not be the case? would you question why a biopsy wasn't taken much much earlier than this?, I tell ya I am at the end of my rope then the NICE decision, my god how can people be so cruel and treat people like us this way? and we call ourselves a civilised society.

The following individuals were selected from clinical specialist and patient advocate nominations from the non-manufacturer/sponsor consultees and commentators. They participated in the Appraisal Committee discussions and provided evidence to inform the Appraisal Committee's deliberations. They gave their expert personal view on bevacizumab, sorafenib, sunitinib and temsirolimus by attending the initial Committee discussion and/or providing written evidence to the Committee. They are invited to comment on the ACD.

   * Dr David Chao, Consultant Medical Oncologist nominated by Royal College of Physicians – clinical specialist
   * Dr Pat Hanlon, nominated by Kidney Cancer UK – patient expert
   * Patient expert nominated by Kidney Cancer UK
   * Mr Bill Savage, nominated by the Rarer Cancers Forum – patient expert

Who do we speak to on a face to face basis first?

Just a short P.S to my previous entry

I have forwarded the emails Greg sent to me to my M.P. Vernon Coaker M.P. for Gedling Borough Nottingham and together with the one I copied and pasted into my blog I have made sure he can find us. I have directed him to this space on several occasions but I have not seen him respond on the forums or sign up to support us ... perhaps this hint to him may jog his mind to do so. here is the HINT HINT Vernon!!

A letter to my MP and his caseworker

Dear Rebecca and Vernon

I would like to take the time to say thank you to you both for your help in sorting out our benefits and housing benefits. Yesterday we went down to Arnot Hill Park offices and signed the last piece of paper to get our housing benefits sorted it was only a quick two minute job and if they had asked us weeks ago to do just that we would have happily done that. Why does all this have to be so hard when a simple thing is to just to fill in your benefit form which all the relevant information that the council needs already has on it the benefits office then copies it and sends to the council who then just add to their database and ask you to just pop in with proof of who you are and sign or send a simple letter to be returned signed.... there is no need for the repeatious form filling. Anyway I want to thank you both and ask you to keep on supporting people like myself who really shouldn't be having the remainder of thier short lives bogged down with form filling.

On another matter.

I have recently sent you the responses to the latest inhumane tragedy this country faces, the group called N.I.C.E. or as we are calling them the un- N.I.C.E. Let me tell you a story My mother is 77 years old and has a brain illness that gives her dementia and subsquently is in a nursing home. Every single morning she cries because she has woken up and has to face another day alive. She desperately wants to die.. she has only a five minute memory span she has to be taken to the toilet, she cannot do anything for herself she knows she has no quality of life and the though of a possible 20 more years like this fills her with terror. Everytime I visit her she cries and asks me to take her some pills so she can die in peace. She cries and tells me she wants to be with my dad who died in 1996. thats all she wants from her life now. So here is my thoughts... Why do we insist on keeping this lady alive against her will and spending nearly £700 a MONTH just on nursing home fees thats not including her medical expenditure and then deny a potentially productive person like myself who with these drugs can be productive for possibly another 8 to 10 years. I am only 51 years old and not due to retire for another 15 years and that would mean another 15 years of a tax payer helping the economy of this country. I Firmly believe Holland has the right idea and it shouldnt be left up to a faceless group of suits to decide my future, this should be MY decision NOT theirs!!!. I have paid my taxes over the years and I have earned the right to any drug that will keep me alive for as long as possible if I choose to do so. However now this decision has been taken out of my hands, I will leave this earth when my body starts to give up and I have done all I feel I can do taking my mother with me quietly and peacefully together and give her the final most eagerly wanted gift she craves... we will both go to be with my dad on OUR TERMS not on some faceless government committee who have not the balls to stand before us and see the human cost to their decisions. They should be made to stand before people like me and see the human cost of that decision BEFORE they make it.. I want to meet this committee face to face WITH my family and tell US their reasoning for this and hear our reasoning for some of the wild stupid things the NHS has spend rediculous amounts of money on in the past and probably will continue to do in the future while we have these stupid committee's. I want my hour with these people they OWE me that much!!

"Elaine gets off her soapbox" a veery angry and rejected lady!!!! take care and I hope none of you have family with advanced kidney cancer in the future. just some of my thoughts sent to my local MP today this is MY STAND!!

GUTTED!!!! in more than one way

I was absolutley gutted by the news this week of leaked information about NICE's decision..AND the results of my CT Scan... I feel thoroughly let down. disappointing is an understatement, while the steroids and oxygen have made me feel on top of the world the scan shows no improvement and while there is no improvement "the spots" (is what I will call them for now) on my lungs are not acting typical if they are mets and no improvement and no deterioration either and if they are the cryptogenic organizing pnuemonia then 8 weeks of high dosage steroids should show improvements and there is none.. so conclusion is maybe its gonna take a little more time for improvements to show or something else.. either way I am now booked in for a CT guided biopsy on Friday at 9.40am.. cant deny I am bricking it.. its under a local and I would prefer a general and to be asleep.. so being needle phobic I am not looking forward to it. As for the government and NICE... thanx... just let me know what I can ACTUALLY expect for my money I have paid in all these years please...I have not exactly drained ressources of the NHS over the years and now I need it you deny me my chance... hope you ppl in suits can sleep at night.. If I was you I would not feel comfortable sleeping with that on my conscience!!! or is it that you don't have one?

A backward step!!

Well we have been back from the coast for a couple of weeks and to be frank I cant wait to get back again as I feel I have taken a backward step!!. While at the coast my health was so good I didnt even feel ill, I felt normal and it was brill, now I am back on my stick and everyday I feel a little worse than the day before. I am really suffering with the sweats mainly at night but they can be hellish through the day too and I am so tired mainly because I am not sleeping well through the night and I do at the coast really well.. So the plan is to buy a static of our own and live for the majority of our time there and only come back for hospital appointments and family affairs that need to be sorted and settled.. I truly didnt think that the air at the coast would make that much of a difference but it does... its the difference between being well and being ill.... it cant be more plainer than that, The treatment of steroids and oxygen coupled with the clean coastal air has truly made all the difference and if you have breathing problems I would suggest trying it for yourselves, I was so stunned by it. Now for my other news.. this is how bad it has got at our hospital this week... my auntie who has had for the last ten years a history of heart disease, on Thursday morning about 8.30am had a mild heart attack, the ambulance was called and they took her to the emergency admissions ward at the city hospital. At lunchtime she suffered another mild heart attack and all through the afternoon she was having slight pain, one of the doctors came to talk to her while I was visiting and told us that she was to rest and they would get her heart specialist to visit her on the ward while she is in as her next appointment is in October. I think but in the meantime could she refrain from any walks unless she needed the loo... I came away about 6.30pm ish thinking they were going to keep her in for a couple of days while they stabilised her and her pacemaker. Friday morning I am just about to ring the hospital to check on her and she actually phones me, " I am home now" I stuttered and said what?.. "they haven't got enough beds so they have sent me home" this is a 74year old woman who has had a triple bypass and a pacemaker fitted who knows there is something wrong and knows what a heart attack is and by no means is one of those drama queens who would call an ambulance at the drop of a hat, and they don't have enough beds!!!!... am I wrong to feel anxious that she was not deemed ill enough for a bed in the hospital? I know they are stretched and the nurses on the ward were very busy I take my hat off to them as they work so hard!! but even so I feel worried when a heart patient is sent home due to shortage of beds!!... If ever there was a time to say enough of admin and lets get back to what we are supposed to be doing this must be the point!! Time to sack some pencil pushers and employ some actual nursing staff and pour some money into wards not more offices....are you listening MP's of our nation?????

On holiday but still about

Well guys.. we came away on holiday last tuesday to the family static caravan in Skegness and we are having a great time.. The treatment I have been on is doing wonders.. I have actually been riding my mountain bike along the prom, something I never thought I would be doing again. I have been walking just about everywhere and I feel Mirtle's retirement looming fast..lol. I dont know if its the sea air but breathing is much better at the coast, together with the steroids and the oxygen its all working!!!. I have been fishing off the beach and caught crabs and we went down to the lakes the other day and did some carp fishing. When I get back home I am going to make a conscious effort to make a permenant move to the coast as I feel my lifestyle is much healthier here. anyway can't stop and chat all day... activities to do and loving every minute.. will be back by 15th but I would prefeer to stay here. CT Scan on 23rd july then 29th to see prof patel and Mr Baldwin the chest man about how this treatment is doing... not that I need any convincing that it is working.. its the best I have felt in 18 months and they aint taking it off me now !!! Oh and messege to my new friends at Hayward House (Mc Millain day care)not done much on the tapestry been too busy outdoors but looking forward to seeing you all soon, I will bring rock back!!

The Farce called The Benefits Agency!!!

Well today I have finally handed my case for benefits to my MP Vernon Coaker, because if I have to spend one more minute dealing with the morons they place in the jobs at the benefits agency I will end up in a straight jacket!!!. Is it me or do they employ them diliberately to reduce you to suicidial tendencies? is it a clever governmental ploy to save them from paying out?... they are quick to tax you and take your wages when your working but you try and claim some of it back!!! ..they have over admistratored it and over complicated it to the point even the staff that work with it scratch their heads in dispair.. Time to make it easier I would say... too many seperate depts with their own little forms and folders... create ONE dept called the benefits agency and keep it as ONE dept... ONE form for EVERYONE ONE database, ONE phone call you send in your reletive proof and your benefit is calculated as a whole and it is paid as ONE benefit.... there is ONE file for each person ... its not rocket science it could be much simpler and probably employ less morons to administrate it too... thus saving money time and god help us forms!!!!! This is the trouble with this country... we over administrate and thats what makes us fail!!!! when you are given a DS1500 form that says your terminally ill you should be able to hand that in to the benefits agency and it should automatically superseed any paperwork on your file as that piece of paper says your terminally ill and lets face it what are the chances of you getting a miracle cure?? ... why should dying people have to be put through the added indignity of jumping through government red tape hoops and pleading for money that they have rightfully paid into?. This is a cruel and inhumane way of dealing with terminally ill people and I for one feel it could be done much much better and with a lot more tact!! I intend to speak to my MP about the unhealthy way we are dealt with by the benefits agencies...

YAY!! I have bought a pay as you go dongle thingy for my laptop and now have internet wherever I go... well that is in theory... in practise I have a sort of access... again selling a product that doesnt quite deliver... YET!! ... broadband it advertises, it certainly isnt and nowhere near the speed they sold it to me as the package I was told a max of 2.4meg but getting more like a 54k dial up speed..it loads wonderfully and for a minute you get about 1 - 1.5 meg which would be wonderful if stable, but drops within a minute to a crawl or even knocking me off so improvements have got to be made so "3" get those masts up and fully functioning before you have your salespeople selling something they realistically cant have yet. I do think however when they have everything updated to this next step technology it will be brilliant...Oxygen is being delivered at the caravan today so I am looking forward to a better nights sleep tonight but last nights wasnt too bad... I do feel great on this new treatment and life seems to be returning to normal, my health in general is improving everyday and yesterday did the long walk along the prom that I found so hard the last time and didnt tax myself very much at all. The weather is awesome here although they have forecast a change this week but who cares!! for now its lovely.. got a tan yesterday and will be sunning myself today as long as the sun stays out.. LIFE IS WORTH LIVING AND IS GOOD!!!

Obviously I am not jumping for joy and assuming I am cured due to this new diagnosis as the hard facts are that there may still be mets in my lungs and the prognosis hasnt changed but this is some kind of hope and this may help others with mets in the lungs to watch for this Cryptogenic Organising Pneumonia because if you had seen the lightbulb moment in Dr Woods face yesterday afternoon was awesome,and as I was saying organizing she finished the diagnosis with me.

I wished I could have cammed it..it also puts some of my symptoms in perspective and makes me understand why prof patel said my mets were not acting like typical mets.. For the first time, yesterday I actually saw my CT Scan for myself and the chest doctor explained so much it was so enlightening. I am really looking forward with interest what the next CT Scan will show. Dr Woods has now said that we will hold off on the interferon alpha untill this particular area has been explored and treated. Conclusion: I cant help but feel hope but I will keep my feet firmly planted on terrafirma.I MAY NOT BE MENOPAUSAL!!!!! YAY!!! knew I was too young for that shit...lol

Yes Greg I saw the HOOF thingy and thanx so much.. now back to my wonderful news!!!

I am going to paste from the googled page I looked up on this new diagnosis so here goes: Click Here

By the way while reading look at some of the effects i.e. night sweats and drugs that can cause this disorder i.e. Interferon Alpha... wonder if sutent could/should be added to this list?

SUCCESS!!!!!

Finally light at the end of the tunnel.. I saw Mr Baldwin this morning my chest specialist, he has given me a new reason to keep fighting on. His opinion is that the mets may not be mets and although even if his diagnosis is proved right I still may have some mets there but he thinks I may have cryphogenic organising pneumonia and it is treatable and can be cured!!! so the plan is as follows: two months on a steroid called prednisolone and then another CT Scan and chest xrays to see if the prolonged steroid treatment has changed the so-called mets. If they change then it may be that Mr Baldwins diagnosis is correct and it will be interesting to see if my mets are actually mets and if indeed all of them are mets or this cryphogenic organising pneumonia. If some of them or all of them, is the difference between being terminal and being curable!!! So today I am hoping Mr Baldwins theory is right but I am also hanging on to the original diagnosis as an anchor, but I can't help but feel more hopeful about my future. However I am sure Prof Patel will soon but a dampener on this euphoria so I will post after I have seen him this afternoon.

Been having a few bad days I think I may have a chest infection but I am wheezing and chest feels tight and heavy. I have hospital appointments tomorrow with chest specialist in the morning and prof patel in the afternoon so I will make this known to them then. As a result of feeling so out of sorts I have cancelled my trip to Dublin and told one of the girls at work to let the others know, I feel bad and quite emotional as I didnt want to let them down but I also dont want to hold them back from having a great weekend so all in all its probably for the best.

The night sweats are getting worse and last night even with the fan on I was wrestless to say the least. I have the squits too pffftt and to be frank I feel I have taken a backward step this weekend....

Oh and the jobcentre plus people have lost yet another wedge of my documents.. 3rd set of information they have lost now...its getting rediculous.. I have not had an incapacity benefit payment since coming off stat sick that was in april, they lost paperwork then we have had no income support either coz they lost the paperwork and now they have lost my husbands incapacity benefit forms too.... and they wonder why ppl dont inform them of changes!!! its a joke!!!! so at the mo we are surviving on my DLA of £113.00 a week..Dont even know when my husband can actually apply for carers allowance as all the rest has to be sorted out first!! ok I have to change subject before I lose it altogether.

Went to cinema saw Indie Jones latest film and its good... we also had a meal at frankie and benny's across the car park that was nice too... Think good thoughts Elaine, think good thoughts!! cant get jobcentre plus ppl out my mind!! sorry..

reminder to self.. contact MP Vernon Coaker

yes greg I do read the discussion replies and I read em everyday so please keep posting.... by the way dancing on tables and clubbing???? you been long lensing? lol would love to when ya taking me out then "winks"

Finally I have oxygen!!!!

Yesterday I went to the surgery to see the nurse about my urine infection and inhalers and to check they had the letter from the hospital about home oxygen. results - pee on stick : answer : urine infection, treatment anti-biotics. inhalers for breathing as I am willing to carpet bomb my lungs with any help I can get right now, and finally oxygen therapy..... letter recieved and once I told the nurse my story she rushed to the practice manager and told her, she came back saying the manager is on it right now, you should have some form of oxygen today even if its a temporary bottle. about an hour after I got home complete with prescriptions a knock on the door, its the man with my oxygen therapy as he was fitting it all up the nurse phoned to say it was arranged I told her he was already here and she said "now I am impressed". He was lovely and most kind, he set it all up and now I am proud owner of an oxygen converter or thingymagig it doesnt even need an oxygen bottle it converts the air in the house into oxygen its neat!! and I can order one for the caravan so when I spend time there this summer I have it there ready. Anyway within an hour I was starting to feel the benefits, my fingers were feeling better the pain in them was going and as time went on the swelling in my fingers went down, my breathing was less laboured and for the first time since coming out of hospital at easter I was comfortable, I think the chest pain may take a little longer to go away as I think thats where my laboured breathing has strained something in my chest but its looking good... so my advice to anyone struggling with breathing is get relief any way you can dont let the doctors keep sending you for more tests before they treat.. a comfortable life is more important at this stage and their tests are secondary. I am on 2trs per minute and 20 hours a day but I am going to manage on having it just through the night for now but if I feel I need more at least I have it on hand. Today I feel so much better and had a good nights sleep, still broken sleep last night but not a painful one. Still wheezing a little but its only the first 24 hours and toilet breaks are a must !! lol

Bloody form filling and phone calls no wonder ppl commit suicide when dealing with the benefits agencies!!!

Well not only did I have a fruitless week with the hospital, I had 3 days of dealing with the benefits agency. They have managed to lose my marriage certificate (its only a month old!!) it is floating somewhere between incapacity and income support!!! both share the same database but instead of copying the details into the one database and working from that, they want their own little folder in their own dept so not only is your paperwork on the database they need a copy for each of the depts for their own folder on you. they have lost my SSP form from my employers and my marriage certificate and they wonder why ppl commit suicide trying to claim their benefits from these ppl... but they have managed to tax me to the hilt!!! funny that, they can find the information they need to tax me but not to pay my benefits!!! oh and my benefits are suspended untill they get all the replacement paperwork. I told them I am dying and not expected to live a year and on monday my home oxygen has to be organised and here I am wasting what precious little I have arguing with them!!!... the Mc Millain nurse is coming to see me next friday, will see what they can do to make life easier.. I had a MSN messege from my friend this morning. She was in hospital at the same time as me and now her kidney cancer has spread to her lungs too and is under prof patel, but yet again she is being left in limbo with no help or appointment its been 3 weeks... this feels like my case so I have given her the numbers for PALS and my oncology nurse... WHEN WILL THEY LEARN!!! leaving ppl with no line of communication and no appointment is the worst thing they can do... its almost inhumane!!! call themselves caring???? the good thing is she contacted me and now I will help her as best I can.

on a different subject

This morning I booked my flight to Dublin YAY!! I am off to Dublin for a long weekend in June with the girls from work, stuff the world I am up for some fun!!! and on thursday this coming week I am out with the girls again for a carvery lunch now I have my taste buds back I can enjoy food again. Yesterday we went to Stoke on Trent on the train for a day out to visit my husbands family.. we had a lovely day but I was well knackered when I got home, and it didnt stop me having to get up in the middle of the night due to hot sweats and lack of air for an hour, in the early hours this morning I was hanging out of the living room window gasping as much air as I could... my fingers are swelling and feel tight my feet are the same, I know this is my brain shutting down non-essential body parts to make sure vital organs get the oxygen... but no-one seems to be in any hurry to help... its coz the doctors at the hospital dont want the cost of the home oxygen coming off their budget and the GP doesnt want it coming off their budget .. so I am the ping pong ball between them untill one of them gives in... this is the caring face of the NHS people... and they expect us to have faith???? mine is slowly disappearing!!!!!

into battle.... again!!!

After my outburst this morning and a few tears, my husband got on the phone and called the number I had for the oncology nurse who I had when I had my operation. She returned his call and had a long talk with him... apparently she is the ONLY dedicated oncology nurse to liase with cancer patients for the whole hospital!!! and she has just been off ill for 4 months due to a back injury from a car accident. But.. now she is back and on the case, as you can imagine with being the ONLY nurse to liase between patients and the doctors and sorting out support, she is overwhelmed with her workload and admits that I am not the only one who is not getting the quality of care that a cancer patient should be getting. she has been in touch with Mc Millain and promised they will be in contact within 24 hours and she has placed a letter on prof's desk asking him to contact my GP and bring him up to speed with what my GP can do to help and support me and update him on where my treatment is as of now ( as my doctor mentioned to me that they dont respond to his letters requesting updates). My husband is going to speak to all concerned and insure that wheels are oiled and support is given. He admits he had faith in the NHS to do right for me as they did for him when he fought T Cell twenty years ago, but he realises now that the NHS of twenty years ago is no more and people like me are being let down. Cancer is on the increase and a hospital the size of City Hospital should have several oncology nurses, perhaps one nurse to two consultants and be dedicated to every patient on those consultants list so they can give continuity of care and be able to do follow up and liase between the consultant and any other depts that a cancer patient mat have to use like in my case the lung function and chest specialists. I know this probably happens in other hospitals but in Nottingham there doesnt even seem to be any kind of continuity in anything...My husband has said that if nothing is in place by Monday as promised he will be writing to the Nursing matron to complain... my views are that the NHS is in meltdown, over managed, understaffed, overworked and these days in the NHS there is no national equality in health and no service so its initials stand for NO HEALTH SERVICE. At what point does the health minister realise that too many managers and no staff means the industry has no industry???

visit to the hospital

Well... yet another fruitless visit to the hospital yesterday... apparently I and my husband was "aggressive" towards the doctor. just because we said we were not happy that a year on my breathing is still not diagnosed or plans to treat or even if they know if its attributed to my mets in my lungs.. we tried to explain that when I go into hospital for a few days then they put me on oxygen and steroids and treat it to stablise I come out of hospital feeling great then after a few days I end up back struggling with my breathing and back to square one. its been 3 weeks since my last appointment where they said they wanted a chest specialist to look at my chest... I have not heard a word from them and I feel now I am not on the clinical trials I have nothing to offer the doctors so I am being fobbed off and left. I dont have any paperwork with contact numbers I dont have an assigned oncology nurse who I can talk to about these things and I feel totally alone. I feel noone at the hospital is arranging anything I have to ask or organise myself because its not their job to arrange anything for me.... why should I have to arrange my own care and support? isnt it enough I have the illness to fight? shouldnt the hospital be arranging an oncology nurse to give me support? and answer my questions and worries or talk to me and assess my needs as I get poorly? ... I feel TOTALLY let down by my hospital and ALL the staff within it!!! my mood today is reflected by the total lack of faith in the system at my hospital!!! DEPRESSED!!

YAY!! it's official ... we is married!!! I finally married my Mr Wright The day went without any major hitches and the sun shone I will post wedding piccies over the next few days. Honeymoon was relaxing but i finally had it pointed out to me just how much I need a walking aid and we will be investing in a motorised scooter, the short walks knackered me right out so i couldnt even attempt the longer walks i would have took before I was ill. the 2 hour train journey was harsh and i had to take my oromorph halfway there and some CHAV playing his Ipod or MP3 playing megaphone just made it more painful...I see why they say mankind are reverting ...not many jumps backwards to cavemen.

Back home from short stay in hospital again

Firstly let me say thanx for your messages of support Greg.. I will be seeing prof on the 1st April and will discuss nexavar with him then.

After i was taken off the sutent my blood pressure continued to go up and I had some very bad reactions that worried both me and my partner, so we called the hospital and went to clinic.

Spoke to Dr Woods (Jo Jo) who got in touch with prof patel who said i should be admitted during this bad episode while detoxing from the sutent.

While i was in hospital i saw the chest doctor who seems to be of the opinion that the problems with my lungs is down to the mets and cancer related so they put me on steroids to help and oxygen to give my lungs a bit of a boost. I must admit they have helped and this time i felt more able to deal with the side effects of coming off the sutent. so another 4 days in hospital and i am glad to be home.

The extremes my body was going through was scary to say the least and i am glad it has stopped.. the first night I went freezing cold i couldnt get warm at all... my partner took my temp but it was normal.. i had duvet, blanket, Fluffy dressing gown and fluffy bed socks and was still shivering .. it felt like every bone in my body was made of frozen steel.

The second night i went so hot my partner said I ws so hot to the touch i would have burned his skin, again he took my temp but it was normal.. I didnt feel unusually hot in myself but he said i was burning hot and he had never felt anything like it before.. The third night i was in hospital and in the middle of the night i was trying to rip all the bedding and my night clothes off me i was so hot.. I had the windows open at my bedside and it was windy and snowing but i was still burning up.. they took my temp and again it was normal..so now i am back to normal and relieved its all over.

So back two paces and we start again.. watch this space for the coming developements..lol

No Longer on Sutent

After the blood tests came back yesterday showing that my liver function has gone haywire again it has been decided that sutent is not going to be the drug for me. I cant say I am not disappointed as I am. I have a break of two weeks to clense my system then prof wants to try me on Interferon together with the Trovax/placeabo. At least I gave it a try!!!

The Side Effects Start

This morning woke up full of cold, sneezing all over the place and nose truly blocked up. Blood pressure is at 155/110 but normal temp. My left knee is painful in the joint again and my chest is feeling tight. Phoned Research nurse and I have to go in early tomorrow to have bloods taken for liver function before I see the prof!!. So it all starts again.

Sutent has well known side effects and the blood pressure is one of them, while i am not too concerned about the blood pressure as that can be controlled I am worried that my liver may go haywire again and may be the deciding factor of whether I stay on the sutent or not. I have been back on the sutent for 1 week and that seems to be in my case the time the side effects start to kick in, I hope this time we can keep better control of them

Re-staring the sutent!!

Yesterday I saw Prof Patel and he has put me back on the sutent I go back next week to see him again. I went to visit my neice Jordan in one of the wards within the hospital yesterday before my appointment with Prof, jordan has had surgery to her shoulder so i thought i would kill two birds with one stone, my visit was cut short by a phone call from Lollie my research nurse who had tracked me down and wanted my blood!!.. Gawd you cant go anywhere without being hunted down for blood... the joys of cancer!! lol

So back to square one and see where it takes us this time.. This time we are ommitting the trovax/placeabo vaccine for a couple of weeks just to see if the sutent was the drug that caused all the trouble and slowly I will be put back on drugs one by one as I need them..Of course i will be keeping a very close eye on my blood pressure as that was one of the main worries when i was admitted 3 weeks ago. thats all for now folks see you when the side effects kick in again....lol

Had my Lung function tests yesterday. all went well and I am feeling more like my old self which makes me convinced that whatever made my blood pressure rise and effect my breathing was something to do with the drugs...Today I have my appointment with prof Patel and I am hoping we are going to start up again and see how it all goes from today. Whatever happens happens is the way I am looking at it all right now. Had a lovely afternoon on Mothers day.. Caroline came over and took me out, it was just nice to be with her on our own and we had a laugh and that was good!!!.

The weeks get more and more eventful!!... I will start at coming out of hospital last Saturday Afternoon... Came home...went to bed..Sunday had a nice day. Monday... Hospital.. blood tests had a talk to Lorraine Research nurse AKA lollie, she went away and came back with an appointment to see prof patel the next day. Tuesday... Hospital.. more blood tests and obs then into see prof patel who answered most of our questions but even he is still in a quandry as to why my breathing has been so affected, lungs seem clear and bloods have come back worrying, I am given an urgent appointment for wednesday morning for ultrasound on my liver and all meds stopped!! plus they are sorting out an appointment in Lung Fuction for some tests on my lungs. Wednesday... The ultrasound and MORE bloods...then off to see Lorraine again and Dr Woods now affectionately known as "Jo Jo" who said she was glad to have seen me before I had this reaction that they now feel I may have had to one of the drugs, went for lunch by the river .. my pallet shot to shit so food mainly tastes of wet cardboard, i wanted to go for a short walk after lunch by the river but was way too tired so Ade drove close to the river's edge and I sat and watched the geese and swans for a while, the funny thing is that the only comfy chair in the whole world is the passenger seat in the car....it doesnt matter where we go I only feel totally at ease sat in that seat!!!.... Thursday.... finally a day off from hospital so we made the most of it and went to several garden centre's had a lovely drive around.. I had a ball!! Friday..... back to the hospital for more bloods!!.. the last couple of days I have felt my energy levels and my breathing improve and starting to feel like my old self except for the massive headache I had late in the evening so went to bed and put my head under the duvet. I have appointments on both Monday and Tuesday next week... Monday with Lung Function Clinic and Tuesday with Prof Patel.

Its mother's day tomorrow...wonder how my day will pan out as Caroline has not even given me an idea of whether I will even see her...I am in bed this morning.. but I intend to get up in a while and do something...Mum still doesnt want to see me and has told everyone that the only thing that is wrong with me is "all drama" so I took her spending money to the home and avoided seeing her. Excuse me for feeling just a little down.

An eventful week to say the least!! I went for my usual outpatients appointment in Oncology on Tuesday and ended up being admitted to Gervis Pearson ward. My blood pressure was unusually high to the point the research nurse Lorraine actually took it from two different machines 202 over I think 145 I had been feeling very wary and finding it hard to breath for a day or two and I had pain in my chest a bit like indegestion my sats were low too so when I got up to the ward they got me on oxygen and blood tests were taken that came back that i was dehydrated so 6 bags later the drip was taken out.. 6 BAGS!!! I thought they were trying to resink the titanic... for two days i was totally zonked out on morphine and although they ruled out Clots and bone cancer they still have not given a reason for the strange chest pains. so I left hospital yesterday afternoon with pills for high blood pressure back on the sutent and i have to call trial nurse Lorraine tomorrow about the second trovax/placebo injection. I have to go to my GP's regularly to have my blood pressure done and my sats tested in case I will need oxygen at home as every time they took me off the oxtgen my sats dropped but they seemed to be more interested in getting the ward back to its normal home than getting to the root of this pain, so i am home with same pain still breathless and tired and really nothing sorted out except my blood pressure!!...oh well the next few days will tell if all i needed was the blood pressure pills

DAY Nine TRIST TRIAL Well not a lot to report medically... no real side effects maybe a lil tired but on the whole I feel ok.. Had a bad headache the other day and had to take a couple of paracetamol and went to bed but thats it really.

Life in general??.... nothing new there either..life plods on, next hospital appointment next Tuesday to see prof patel then wednesday vaccine day. Mum still hasnt settled in the nursing home and so I am still not getting to visit her. I have started arranging our wedding I will be going to registar office tomorrow to arrange the date, we are looking at April 12th.

DAY FOUR TRIST TRIAL

Well its day four and all is well so far.. Yesterday I was tired all day but I put that down to not sleeping last week much due to stress of waiting to find out if I was on the trial or not.. I feel it just caught up with me. This morning the palms of my hands itch but I am not reading too much into that as I only have had 3 tablets so far and about to take the 4th not enough in my system to start with the side effects yet... its probably phsyco - sim - attic... lol Or I am just phsyco!! anyway thats all the medical stuff... Life in general??.... the usual stuff life throws at ya... had daughter on the phone for over 45 mins the other night telling me how she doesnt have time with two jobs to go out and socialise and all her friends are all loved up and married and she cant even find a bloke.... I sorta told her she has time but that one fell on deaf ears..typical 27 year old.. but its in the contract to listen to it.. well so she tells me.. I am making plans to spend as much of the summer as I can down at the Caravan at the coast this year!!... no phones just me, a beach, the sea and a few bottles of nice wine :o)... now lets see just how that pans out..lol I dont know why i make plans.. they never go as I plan them... right.. off to watch a film and take pill 4... watch this space!!!

had bloods taken then my first Trovax/placebo injection at 11.45am I have just taken my first Sutent tablet and now just chilling out and feeling good knowing its finally here and my after care treatment is now being administered. In the coming days and weeks i will record how I am doing everyday and what if any side effects I have.

CONFIRMED!!! I am on the TRIST trial for Trovax and i have my first treatment tomorrow at 11am and mum is starting to settle down a little at the nursing home... she is still sitting by the door but at least she is eating now... I can sleep tonight finally... as last night around 3am i was learning japanese on the TV some open univeristy course i think... 3 episodes!!...funny that i typed that i am watching "Pearl Harbour" on the TV before i go to bed... must be a link there somewhere lol

Tests all done yesterday...felt like a pin cushion but them's the breaks.. Had a very shitty day today we moved mum last Friday to her new nursing home.. she is being an absolute cow!!! swearing at staff and other patients she tried to land a punch in my face today in the corridor then slapped my face in her room when we tried to usher her somewhere to try and talk her down to a dull shout that wouldn't disturb the other patients, it was so embarrassing. I was told I am hated and we thought if she knew why she had been moved (bearing in mind she was begging to live in the town where we moved her to)she would be more obliging but no not my mother... I was told to just get out of her sight and go away and die... oh and I am not her daughter... my aunt stood there in shock as my mum spat venom out like a cornered wild cat..I feel totally empty of energy and thoroughly pissed off. i know i should have expected it but i don't think anyone was prepared for the ferocity of her actions... i am now going to have to amend my idea of spending more quality time with her with what time i have left.. and now a week of waiting for the verdict on my future treatment so if the beginning of the week has anything to go by, the end of the week will be hellish.

I feel i must clarify a point i have brought up in the forums and hopefully explain who my anger is aimed at regarding knowledge of application for funding for Sutent from NHS or appealing for such... I am firstly angry at my consultant who when offering me options for my future treatment didn't make known the option of applying for funding.. then I got to thinking why he probably didn't offer that option.. maybe someone HIGHER up the management chain has his arm firmly pulled up his back to prevent him making this option part of his standard talk about options... maybe as always this all returns to budgets and meeting financial targets.. THAT IS WHAT I FIND UNETHICAL!!! I feel that there should be a print out given to you with ALL your options given to you to take away and read INCLUDING your right to apply for NHS funding for certain drugs...Keeping patients in the dark about such things that essentially may prolong a living human beings life is against the hippocratic oath a doctor swears to on the day they qualify. At no point in that hippocratic oath does it say do your very best to save a life unless the budget doesn't stretch to it!! and as a doctor he should be there to save your life to the very best of his ability. At no point did I suggest that the admin team or patients who deliver help and advice for people who come to this site searching for help held back information in any way. I have found this site to be an absolute godsend to me and it is the people of this site that give me the strength to challenge the medics and fight for my rights and in the process have put me in touch with people who are committed to getting the very best help for us. I am so grateful to those who have offered me advice and support and who I know will continue to do so.

However I do find some people get very angry and are very politically fueled and aggressive and throw in statements that as a normal averagely educated person like myself, goes straight over my head and I don't understand their rantings so I chose to pick out the bits of statements that are written in plain one syllable English. Not that I am complaining as my feelings are that if it helps to get it off ya chest go for it....I am sure there are folk out there that will understand your opinions. Right back to normal humdrum stuff Went to view another nursing home for mum today and I am hoping she will be moving in soon...its only about 400 yards from my home instead of 10 miles...its close to all the bus stops to all her family and friends so more folks will visit her and take some of the pressure off me I wont have to ask friends for lifts to go and see her and i can see her more often than the once a week I get now. I am shattered now though... i am going to have an early night tonight and I may get some sleep after worrying about mum. General health is good and emotional side of me is a lot better after my visit today to the new nursing home.

Well... Been to hospital today and all seemed positive. I got confirmation that if i meet the trial criteria I will definitely recieve the sutent and I go for CT Scan and Echocardiogram on 28th January the results will be given to me on 5th February thats when I know what route i will be taking and if I am accepted on the trial the next day I will recieve the first trovax injection and my sutent.. I have informed the doctor that if I dont meet the criteria I expect Prof patel to apply for funding from my PCT for the sutent and I will be expecting him to do it ASAP.. I think it rather took them by surprise that I knew the route to take to get what I require but I think it gained their respect. I am taking back control and I do not intend to let go of it again. I feel so positive in myself again... that must be good. I had a long talk with Rose and its helped me realise I am strong enough to fight whatever obsticles they put in my way and by george I will get over them as they throw them.

well its Monday I have left a message for Rose to phone me back. I have had a funny old weekend.. none eventful with regards to the cancer and mets but my mouse on his wheel is training for something again and sleep wasn't on his agenda.. anyone got any rat poison??..lol.

Saturday we went to visit my sister in hospital as she is now on her 3rd knee replacement, she was waiting for her prescriptions and paperwork then she was going home... just before that we had visited mum in the nursing home, We were told she wanted to come home. Well her axact words were "If I get my coat can you take me away from here as its worse than being an inmate in Belsen" "they dont ask me to do things they TELL me""they talk to me like I am a child". So what do I say??.. I told her I will get in touch with Social services and see about having her moved, I told her it won't happen overnight but I will sort something out. I know she wants desperately to move close to me and logic dictates it would be better for her as she would get more visitors, so we will see. Just another thing to add to my list of jobs to do before i get too ill to do them.

Sunday we went out for lunch then on to the cinema to see I am Legend, Not the most inspiring film and it started to feel like it was too long for comfort two thirds into it. It won't be classed as an epic and i wouldnt buy it on DVD to watch again but I am glad i saw it at the cinema. I am still unsure I could say its a great film. Last night my mouse started again...I was making lists in my mind of things I needed to get done and writing letters and what i wanted to say in those letters to people I care about, in turn that made me tearful which in turn made me tired enough to go back to sleep.. but four hours of it was just too much of a break in my sleep pattern.

This morning as I got to sleep the door bell went (7.30am) the carer for Dave below why our doorbell??.. you tell me!! I obviously dont deserve a lie in... ***** <---- swears at this point! then about half hour to an hour later the bell goes again... ****** em let em wait or go away, then 9am the door bursts open we are still in bed and the loud "morning peeps you still in bed ya lazy cows" came bounding from my daughters voice. Gawd I want to move to a desert island!! no sooner has she made herself a drink the phone rings... morning report in from Auntie D, its like living on clapham junction. One thing you can say with no worry of a lie i will not be dying alone!!! or in peace!! lol I have a million and one things I know i have to do but i really cant be arsed to do them and I go back to see prof Patel tomorrow, I have to take back my consent form for the TRIST trial and gawd knows what else.. The mailman came but no appointment for the CT scan I have to have before I am accepted onto this trial. I feel the urge to contact Stephanie and get her to put a bomb up someones ass, but she doesnt call me anymore... is this normal for an assigned oncology nurse to never meet her assigned patient and just deal with them over the phone??... or is it as i suspect that she is hiding from me??... Had my response from Asda.. simply put its a thanx but no thanx kinda reply...best employer award pffftt yeah right!!...do i sound angry today?... maybe it is a good day to kick ass but some days i want to say why should i bother. then i feel selfish for feeling that way. COMPLEXED!! thats me!!.. right thats my rant for a day or so.. well I will probably have more to rant about tomorrow night after my visit to the hospital... ohh I have put a pack of cards in my handbag after the last couple of visits need something to do while sat in those waiting rooms. Good tip there ppl.