deejay's blog

cyberknife fiasco

2011-07-24T14:28:48Z

After being told in Feb this year that one of my tumours had grown again, (I had 6 months of chemo in 2009) I was overjoyed to learn that I may be suitable for cyberknife as it seems that only this tumour is active. Being under one of the NHS London hospitals that were getting a cyberknife machine this summer, I felt that another 6 mnths of chemo to try and shrink it back down again first, would be worth it if it could be obliterated completely. then I started hearing all the rumblings about funding, and was very kindly sent lots of info by Lemongrove. Every time I saw the doctors at my monthly oncology appt, they seemed very excited about the new machine, and when I asked one of the registrars about the funding issue he sort of dismissed my fears and said that they could be very persuasive when it came to funding, and he didn't think it would be a problem. I was very sceptical about this, but thought I'd wait and ask the head man himself, the chief oncologist, when I next saw him. Well, that was Friday, so I brought the subject up. Apparently, the machine is now in place, and he has 11 patients who are suitable for treatment - and they have ALL been refused funding. Not only that, but if this carries on, and there are no patients using it, it will have to be 'mothballed'. This doctor doesn't have the best bedside manner, but he is a very, very good oncologist - and I could almost see the frustration coming out of the top of his head, like steam. I actually felt a bit sorry for him as it's clear that this situation is not what he, or any other doctor wants. I am in the fortunate position of having private healthcare, and when I told him this (have already told his registrars countless times - but they don't seem to talk to one another) he said that if they could get private patients using their machine first, at least it wouldn't have to be shut down, or 'mothballed'. And if my ins company won't cover it, then we'll cash in our ISA's - our savings.

When I was first diagnosed I was a private patient,, under an endocrinologist at King's College. But when I transferred to a different doctor (endocrinologist) and different hospital, he told me he wanted to treat me on the NHS, as he didn't want wrangles with insurance companies to get in the way of my treatment. He assured me that I would get the same treatment, and as far as the endocrinology side of things go, I have had fantastic treatment. But clearly, with oncology, it's a different kettle of fish, and I feel desperately sad for those people that would benefit from new drugs and treatments if they only had the means to pay for them. And I feel sorry for the wonderful cancer charity who apparently paid for this marvellous new machine only to see it standing idle.

Jeanie

The loneliness of the rarer cancer sufferer

2011-03-08T15:34:43Z

Well yesterday it was confirmed that one of my liver tumours is active again. After 18 months or so of being stable (which I'm extremely grateful for by the way) the largest liver lesion has doubled in size since October last year. None of the smaller ones (liver, lymph nodes, pelvis) have changed. Just this bigger bugger. So it seems that I have to have another load of chemo. Which again, wasn't too bad at all for me, as Temozolomide is tolerated quite well generally. I'm just a bit (alright, a lot) disappointed that seeing how my type of cancer is supposed to be slow-growing and all that, it didn't give me longer before needing to take action again.

But it was something the doctor said that depressed me as well as everything else. She said 'The treatment for this type of cancer (phaeochromocytoma) is still very limited. There are no new treatments being discovered. There are no clinical trials even being planned'. Talk about feel chucked on the scrapheap. I know that because it's so rare it doesn't cause 'enough' deaths for the drug companies to make money from developing treatments. But Jeez, could you make me feel even more abandoned? Also, the Prof who was looking after me at St Bart's has decamped to Oxford. I stupidly imagined he would take care of us (my son too) until he retired. But no, - he went and we didn't even know.

So now I'm waiting for another appt to be sent to me to see the Oncologist. He is one of the few Oncologists that knows something about Phaeos. Let's hope he hasn't left and gone somewhere else too.

kick me when I'm down why don't you?

2011-02-16T14:15:52Z

Well, I had my check-up at hospital on Monday. This is usually a quick chat, possibly urine test results (hormone levels) and (sometimes, but rarely) blood pressure. For those of you that know me and my situation, my son and I usually see the Professor together.

Arrived at hospital at 5pm for 5.15 and 5.30 appts (son doesn't like taking time off work). BIG mistake. Like flights, you're better off getting early one, as no time for a backlog to build up. Waiting room was mobbed. Should have had alarm bells immed.

6pm my son says he's not waiting any longer. It's Valentine's Day and he wants to take his wife out. (still had hour's journey to get home) he didn't have any results to come back or anything, and unless he's had a scan the doctors really just ask him how he feels, so I could sort of understand why he didn't want to hang around.

7pm I am still sitting there. Receptionists all gone home, about 2 other people in waiting room. Steam is starting to come out of my ears.

7.15pm called in by Prof's registrar - very nice doctor, but Rumanian, and bit of a language barrier. 'Is Prof away?' I ask? 'He has left the Trust' she says, 'gone to Oxford. Didn't he inform you he was leaving?' No, he bloody didn't, I wanted to scream. Felt like my safety net had been pulled out from under my feet. My lovely, kind Prof - top man in Pheochromocytomas, approachable, expert, confidence-giving doctor.

So, eventually I saw the doctor who is taking over his patients. She was totally frazzled, and probably well fed-up with people saying how devastated they were that she was now taking care of them! But she seemed nice, and quite pro-active. Which was good, because it then got worse. Apparently one of my hormone levels produced by my tumours has soared throught the roof - which we all know, probably means something has sprung up quite rapidly. I had a scan last Oct and there was no change from scan 10months bfore. So in the last 4 months, even though it is supposed to be slow-growing, something has gone berserk. By now it was 7.45pm. The frustration of waiting all that time, then having a double-dose of bad news, well, I don't cry at drop of a hat, but I could have easily burst into tears. I mean, I always knew that the tumours would start to grow again - the chemo only reduced them, not obliterated them. But because they are 'slow-growing' I just thought I would have a bit longer (finished chemo May 09) before being overtaken by them again. So, today, trailed up to hospital again with repeat urine collection, blood test, and now a repeat CT scan has been requested. I've had so many CT scans in last 3 years that I'll probably develop another type of cancer due to the radiation. Can't have MRIs as they have to 'compare and contrast' sliced pictures of liver/lungs/nodes etc.

After finally leaving hospital about 8.15, I just missed a train at London Bridge Station, then had a row with a 'homeless' person outside the station whose poor little dog was shivering with cold. I got home at 9.45!

Doctors give me something with one hand - and take it away with the other

2010-10-25T15:12:13Z

When I was a little girl my nan had a saying that went something like - talk about give you something with one hand and then take it away with the other!'

Well that's exactly how I feel today. We went to get the results of our scans today - my son's MRI and my CT. Great news for me - no change at all since my last scan in January. Only one lesion visible on CT (used to be 3 in liver) and that hasn't grown from 1.5cms. Other active cells (couple of lymph nodes, and pelvis, where I had a tumour removed) only visible on PET. No new tumours. The best news I could have hoped for. But I tell you, it means nothing when there's a shadow hanging over my son's results.

The site of his tumour - all clear. Rest of his abdomen - all clear. 'Oh', she said, (the Prof is away) 'there is a bit of an 'artefact' - artefact? I thought that was something you brought back from foreign travel, - 'an artefact around his heart'. We don't think it's anything at all, in fact it may be a speck on the MRI scanner, as on one of the scans it didn't show up at all. But to be on the safe side we are going to do another scan of the heart. Now I don't want you to worry, as we, and the radiologists, don't think it's necessarily anything to worry about' Excuse me? Don't worry? Something on the scan around his heart? How can I not worry? What planet are you on? So now we have to wait for another scan appt to come through. My boy, meanwhile, raced back to work as his boss had said to him 'Having rather a lot of time off work aren't you?' This is because he had a day off when he had the scan, and he took it as HOLIDAY! My husband said he felt like going and punching stupid bloke's lights out, but I said 'now, now, don't be rash, we are not violent people'. Our son said 'Dad, don't be daft - he's a 6ft 4 rugby player!' My husband said 'That's true - I know, I'll send your mother instead'. Trying to smile, but now worried sick again. The other thing that p****es me off is that the doctors knew this last week. 'Have you requested the heart scan then?' I ask, reasonably, 'oh no, we thought we'd see you both first and discuss it'. Well obviously they have to discuss it with us, but they could have at least got the wheels in motion, couldn't they?

confused.com

2010-10-22T15:53:02Z

Well I'd like to offer my opinion on whatever the hell's going on, but I don't have a clue what it's all about, and actually, I don't want to know.

I first used this site when it was 'what now' - yes, it was good, maybe this one isn't as good, I've never really thought about it - it does the job, doesn't it? Puts you in touch with people who understand what you're going through? I don't go in chat - tried it once when I was at rock bottom - and a) couldn't type quick enough, and b) everyone seemed to be having their own private jokes which I was clueless about.

Now back to why we are all on this site - for anyone who remembers me, it's scan results time again on Monday, after 9 months for me, and 1 year for my son. We have a joint appt to find out the state of my tumours, and if his has grown back, or indeed, if any more have appeared. For me, I'm a cancer patient, and have also been a carer for my son when he had major surgery. I hope I don't have to EVER be a carer for him again, but I will be a cancer patient for the rest of my life, along with lots of other people on this site. I'm not at all interested in any of the rows that happen on here (and I have seen quite a few) what I am interested in is helping other people with practical advice if possible, and emotional support if I can.

But at the moment, what's important to me is that my son has a clear scan, and my tumours haven't changed much, allowing me to exhale again for a while.

Jeanie

Headlines in Daily Mail today

2010-04-09T18:03:32Z

Don't know if any of you have read the Daily Mail today - but for any of you who are suffering from rare forms of cancer, there is an article front page about a lady who has a very similar type of cancer to me - and her fight for Sunitinib, which is one of the only drugs that has proved effective in shrinking endocrine tumours. I'm aware that Macmillan are running a campaign for rarer cancer sufferers to have fairer access to drugs, and I have added my (very loud) voice by e-mailing all our local MPs.

If anyone wants to read the article, but hasn't bought the paper, you can read it online.

I'm very much aware that it may be me soon that needs one of these drugs - and I have to state now that I will make the biggest rumpus I can. Not necessarily for me, but for my son who has inherited the condition.

Fight the good fight eh? Jeanie x

Warning! Expletive laden rant about doctor

2010-02-05T17:08:52Z

Because I'm under 2 different teams, endocrinology and oncology, I'm used to conflicting opinions and different methods of doing things. And it seems to me, that every doctor I've seen says something bloody different to the last one.

But today, I've seen a total arse of a doctor. I left the oncology dept this morning so wound up I had to have a cinammon whirl at the station, and I've been trying to cut down on cakes and biscuits.

After having scan in Jan, the endo doctor told me that my tumours haven't grown since the last scan I had in June 09. Great , fantastic, news He then said that he didn't think I should have CT scans every 6 months any more because of radiation risks, yep, totally understand that. Said he'd discuss with Oncologist at meeting, and when I saw oncology team (today) would find out how long before next scan (I expected annually, from now on).

So got to oncology dept this morning, to see head honcho leaving. Great start. I then saw his senior registrar, who I've never seen before. Ok, that's fine. He then told me there was no change with scan results, 'I know' I said, 'I saw the Prof in January'. 'Well you shouldn't have done' he said 'Today's appt was to discuss your scan results - and anyway, your appts should be spaced out between us and endo team'. 'Well, sorry, but that's just the way the appts happened', I said.

And THEN, he said 'Well we won't scan you any more because of rad risk - we'll just wait until you become symptomatic, i.e. lose weight, and/or appetite, or start getting bone pain'. I mean, what the fuck's that all about!!!

So I said 'I never lost either my appetite or weight even when I had 2 massive tumours, so I don't think that's a good indication of tumour growth - and I cetainly don't think I should wait until I'm having bone pain! I mean I understand the risk of radiation, but I have to be screened somehow, and I've had enough bone pain to last me a lifetime!'' He said 'Well, we're discharging you from this dept as it's pointless you being under both teams until we have to attack your tumours again'. Well, thats fair enough, i agree - I don't want to have to trawl up there if I don't have to, but his attitude was fucking atrocious! 'Are you aware your cancer's slow-growing?' he said, 'Duuuurrrr.....yes, I think it's been drummed into me enough' 'And you have chemical testing regularly?' 'Again, yes - but if you look at my path lab reports, you'll see that my tumours don't produce much in the way of hormones, therefore chemical testing isn't always conclusive'. He then told me for the 3rd time about the risk of radiation. Yes, yes, I know - I'm not bloody simple, I wanted to say.

All the time this was going on there was a student sitting in the room. I really wanted to say to him 'Learn your clinical stuff from this man - but DON'T learn his bedside manner!' But I didn't. Anyway, now I'm just under the endo team for a while, and that suits me fine as most of them are wonderful, especially the Prof.

Anyway, thank god I haven't got to see him again for a while, and the decision as to when to scan me in future will be up to him, and I totally trust his judgement. Of course, I trust the oncology team too, it was their good work that's got me where I am. It was just this dr's attitude that wound me up so much!

The strain we are all under

2010-01-12T14:28:45Z

And when I say we - I mean us, on here, cancer patients, carers and families.

I had an appointment yesterday with the Prof of Endocrinology to find out the results of last week's scan. My last scan was in May 09, after 6 months of chemo, and it showed some shrinkage which was good. But what had happened since then? I have been getting increasingly nervous as the time drew near, and for me that means chronic insomnia. And although I'd tried to put it to the back of my mind over Xmas etc, it never completely goes away, does it? So I was on the train going to London, and I tried to get myself in some sort of order by thinking 'Whatever they tell me today is NOT going to be as bad as when they told me last year that my son had obviously inherited the SDHB gene, as he also had a tumour' . I was also scared because the pains I get from my liver area on the right side had got worse in October last year.

But - the best news I can ever hope for - no change from last scan, in fact, if anything, a bit more shrinkage. So everything stable at the moment. Breathe out slowly. Good old bloody Temozolomide!!!! Now, I know I'm a lot better off than a lot of people on here, as my type of cancer is slow-growing, and not very aggressive. But, I do have to fight on more than one front, as they say, because it's not just my results that I have to worry over, but my son's check-up scans as well. And the strain does get to you - wouldn't be human if it didn't. Although I felt really relieved last night, when I tried to read a bit of my book in bed, my hands were shaking badly.

So now, I have appt with oncologist in early Feb, who will discuss when I'll be scanned and checked again - then next appt with Endocrinology team in May. And they are going to see me and my son together, which is good as he doesn't always ask enough questions (hey! I'm a pushy mum when it comes to his health - who wouldn't be!) And of course - although things are stable at moment doesn't mean they will always be. But it's the best I can hope for now. My son will be scanned again in the summer (date to be arranged) and if that one's ok, he'll then be scanned annually.

But I couldn't stop thinking last night that the first hospital and team I was under in London (mention no names) when I mentioned I had read about Temodar/Temozolomide being used to treat Pheochromocytomas on an American website - the oncologist attached to that hospital dismissed it completely, saying that the results 'weren't encouraging'. thank goodness I changed teams! And I think the increase in pain that I had last year could've been down to getting shingles?

Lots of love, Jeanie x

Back to insomnia and anxiety

2010-01-04T17:06:04Z

Happy new year to everyone - seems a stupid thing to say sometimes faced with things we all have to face, doesn't it?

After 7 months 'off', since being told chemo had shrunk my tumours last May - I now have scan on Weds to check state of play now. Have they grown back quicker? Are there more of them? The usual worries we all face. Will find out next Monday, when I have appt to 'discuss' results. But already I'm not sleeping, feel edgy. My husband says 'Put it to back of your mind until you're sitting opposite the doctor'. Yeah, right. As if.

My son has been fine since his last scan at the end of October - he has a check-up in Feb. So it goes on. Living from one scan to another.

We had a lovely Xmas - our son and daughter-in-law, my mum, plus four of our closest friends for Xmas dinner. I did a Xmas quiz. And while I was on the internet looking for ideas for questions/categories, I found this beautiful quote:

'Making the decision to have a child is a momentous thing - It is to decide forever to have your heart go walking around outside your body'.

Isn't that lovely?

I start 2010 feeling sad - so many losses on this website alone over the past month or so - then my very close friend's younger brother committed suicide just before Xmas. He had depression and alcoholism, and was, as my friend said 'a tortured soul'. My heart aches for his parents and sisters, along with others on here.

No year is ever going to be totally 'good' or totally 'bad'. There will be some good bits, some wonderful bits if we're lucky, some bloody dreadful bits for most people. All we can do is try and enjoy the better bits I suppose.

My oh my - I am feeling profound today xx

Emotions nearer the surface at Xmas

2009-12-21T18:14:28Z

What is it about Xmas that makes me a snivelling wreck? I was driving home today from the shops when I put the radio on and one of the Xmas songs I love came on - the old sort of Phil Spector 'Baby please come home', you know it?

So I started singing along, and felt ok - looking forward to Xmas, have my son and daughter-in-law, my mum, my hubby, dog, and our best friends and their old dad coming - then, suddenly, I'm crying instead of singing. Suddenly, the sheer horror we faced this year hit me again, as it sometimes does. And the thought that we could face worse in the years to come. It's as if the Grim Reaper suddenly punches me in the stomach. But worse was to come.

I got home and one of my closest friends rang me (she's had a horrible year - husband run off with someone else, not paying her any maintenance etc) and she told me that her lovely younger brother, who had a drink problem, killed himself last week. I can't begin to imagine what her parents are going through, knowing their son was so unhappy he took his own life.

And now I've seen a item on the news about the 'Hero's awards' on telly tonight, and the mums who've lost their young sons in Afghanistan/Iraq, and my eyes well up again.

I am actually looking forward to Xmas day this year - after all, I'm still here, my boy is still here, and happy, and I'm going to be with the people I love most.

But I'm well aware of the sadness of a lot of people, for whatever reason, whether it be illness, or war, accident or just relationship breakdown. Don't really know what my point is!!!! But just feel very emotional at the moment.

Anyone feel the same? xx

fainting and swine flu jab

2009-11-14T13:44:16Z

I went to have a swine flu jab this morning at GPs.

Everyone who had it was asked to sit in the waiting room afterwards for 10mins in case of adverse reactions.

I felt fine, but a man sitting across from me, with 2 boys (who I presumed were his sons) suddenly slumped back in his chair and started groaning. He fainted, and loads of people called for the doctor, who came running out of his room and tried to get the man on the floor. Oxygen was brought in, receptionists were flapping around, it was chaos. Meanwhile, the 2 boys, (who turned out to be his nephews) were laughing hysterically.

Man was put in a wheelchair and carted off to empty room, followed by these 2 kids, and apparently - he hadn't even had the flu jab! He had brought his nephew up to have one!

Bit like a man who faints while his wife's giving birth!

But so far, no ill effects.

Roll-calls pain and being bolshie?

2009-11-07T11:32:25Z

Hi everyone - now I know I don't blog on here that often, but I do catch up with people at least every other day. But... I too, am missing certain people and wonder if they're ok? I'm frightened to ask about them in case I've missed some bad news, but I don't see how I could have done.

So i suggest a fortnightly roll-call? I'm reading a book about Japanese POW camps, and their obsession with 'Tenko' or roll-call. What do you think, ha ha?

The main issue with me at mo, is pain. I've been having pain in my right side (I have lesion in my liver there) for a year or so now. Doctors say lesion isn't big enought to cause pain, so they think it may be nerve pain. I started taking amitryptaline 25mg since May, and it was like a bloody miracle, pain went, great. But in the last couple of weeks it's started creeping back, and now it's bad again. I've upped the dosage now to 35mg (still quite a low dose i think) but may have to go up again. So bit p****d off about that.

Anyone else had 'nerve pain' or unexplained pain?

The other thing is that my son had a MRI scan 2 weeks ago, to check for 'residual disease' after his op. Also handed in another 24 hour urine collection.

And we've not heard a word. Now I wouldn't worry, (well, I probably would as I'm like that) if he had an appt soon, but he's not scheduled to see Prof till Feb!!

He did try and ring Prof's secretary yesterday, and just answerphone message.

I don't want to enhance my reputation as 'bolshie' any more than it already is, but wouldn't hurt for them to tell us scan result sooner rather than later would it? Been a bit disappointed with hospital lately - the last time I went to see oncologist (end of Sept) he didn't even have scan report that was done in June, and didn't know the outcome of my 6 months on chemo. And he was the head honcho. He started reading a letter from the London Clinic about my pelvic op that was done last August!

Luckily I knew exactly what had happened as his registrar had told me, but even so it was abit shabby. I had to sit there and tell him what the scan had showed, even the measurements of shrinkage! Eventually he got my PET/CT scan results up on the screen, but I could see my husband was gearing up to say sometning.

And now this with my son. I think unless they are reminded of it, or you are actually sitting in front of them, they forget. Or am I being unreasonable?

What do you think?

Jeanie xx

Finding fellow survivors

2009-09-23T11:09:01Z

Well it was great to hear from some of the people from before the site changed. Liz - how are you doing? I know the last post I read from you your tumours hadn't grown since the last scan? Great news.

To save confusion I'll keep the user name deejay - but they are my initials, so call me jeanie, same as before, which is my middle name.

Anyway, hopefully normal service is gradually being resumed, and we can all get up to date with how everyone is.

A sad piece of news - a friend of mine's grandson has a brain tumour - anaplastic ependymoma - very nasty and aggressive. He is 3. He's had 80% of it removed surgically, but they've opted to take him to America for Proton B therapy. There is a website his father has set up called www.friendsoffletcher.com where there is a diary he has written. For any of you interested, it makes humbling, yet inspirational reading.

A good piece of news - my son is off to Peru on saturday to see his wife's family and have 2 weeks holiday. He 's doing well, feeling fine, and I'm so glad he's going to have a break. He will have a MRI every 6 months or so from now on (no radiation on his nether regions) to check for further tumours. So we will just have to get used to the agony of waiting for not just one set of results (mine) but two. Hey Ho. Jeanie x

I'm wondering where everyone's gone?

2009-09-22T15:32:31Z

I haven't been on here for a few weeks - tried for the last week or so and obviously couldn't get on. Now I find myself with a new user name 'deejay' (which I think used on 'share') and apart from Debs and Kate G - how you feeling on the Temodar Debs? How many more cycles are you having? I haven't seen any familiar faces and names. When I was at my lowest point on finding out that my son also had a tumour there were certain people who really supported me and I'm wondering if they are ok? Brambledigger, Toni, Jo mac, Christinedivers and a couple of others who's names I'm ashamed to say escapes me. I'll carry on with the username Deejay, but I was Jeanie in my former existence!

And I had no idea what the 'stars' meant until I just read Kezzerbird and Deb's blog and I hate them too!

I'm still checking in

2009-08-20T18:19:38Z

It's a while since I've blogged on here - we've actually had a week's hol in Italy which was fantastic, then a long weekend with our friends in their caravan,.... Hmmmm, cosy, is the only thing to say about that!! But I've been catching up with everyone the last couple of days, reading up on blogs that I missed. My son is doing fine, back at work, and has his follow-up appointment on Monday. He has handled the whole thing so brilliantly, we're really proud of him. If only his marriage could settle down a bit. One minute they're all over each other - and the next, Jesus, it's all off again. We try and stay out of it, but it's hard sometimes when he's sooo upset, and after what he's just gone through, I think 'What the f**k? Sort yourselves out for God's sake!!!' But she's a latino, say no more. I'm doing ok I guess, but was reading a post that said 'I'm not going to get better', and a few replies. and I thought 'well that's me, my cancer is never going to go away - hopefully, it'll just be controlled'. And in a way, trying to find something that's good out of the whole mess, the fact that I don't have to worry whether it'll come back or not, it's never gonna go, sort of takes some of the strain out of it. Doesn't it? Or am I just kidding myself? But just wanted to say that just because I'm a bit better than I was a couple of months ago, I haven't buggered off without a backward glance - I'm still very much up on how everyone's doing, good and bad, and will check in all the time, love jeanie xx