Lung Clinic for Mesothelioma

After spending two weeks with increased pain and actually starting to feel a little better I bit the bullet and phoned the lung nurse who arranged for me to go into clinic at 2pm, I wasn't sure whether it was a walk in or an appointment based but something inside of me told me I should go.

I certainly got a full MOT and even surprised one of the nurses when my blood oxygen was 100% (it shocked me too).  An xray was done, bloods taken and even a water sample, which came back clear.  So where does this leave me, I found out that my CT Scan hadn't even been booked so that was arranged yesterday for next Thursday, I chatted to the Chest Doctor and he had a feel around my side, very tender, to the point I knocked his hand away, it's different when we touch our tender areas as we hold gently, but under examination they aren't gentle.  We even looked at the last two scans together, again that funny looking nodule at the bottom seemed to draw the Doc's attention.  It could be that it is pushing on a nerve and causing irritation but who knows.  The scan has been booked to do the lower part of my abdomen to my shoulders so maybe something else could be going on.  "After all," the Doc said, "You still have a body that can go wrong somewhere else".  From experience with endo in my early days I never had anything else wrong with me but endo, well until the cancer came, so I am finger crossing that whatever is going on is a regular body problem and not a cancer causing one.

Although I heard from Dr Abtin that his thoughts were the cancer was growing on the December Scan, and Dr Owens said there radiologists said not, you do feel in the middle, then for Dr Day to say he thought it looked like growth on the scan. I don't keep these in the front of my mind but bury them deep, try not to worry and get on with other pressing things like living today, working, playing with the mutts, keeping hubby occupied (he is the worrier) but every now and then they creep in and I guess Friday was one of those days too, I could feel my eyes wanting to well up with tears for no reason.  I guess the main reason for burying these thoughts is where do I go now if it has returned and if I think it might have come back will that make it actual and it has. 

Healing on Wednesday again was wonderful but the lady later told me I needed to eat complan to build up, so I went out and bought a box, and for some reason I have even started taking omega 3 capsules over the last couple of days ( I bought them for the dogs). 

Believe me I want to sort out the pain issues over the kidney area, infact I would like to sort out the pain in my left breast, my ribs on the left side, the slicing pain through the gap between ribs and pelvic bone, my back ..... yet I feel guilty for complaining because at the end of the day I am still here and very much alive and isn't that worth much more than complaining about pain?  My brother has MS and suffers badly yet he hardly complains .. again which makes me feel guilty ....

I have another problem too, my body doesn't like medication, for some reason I always react to tablets, drugs just don't agree with me, it's like my body is pure and the intake of anything other than natural products upsets the system .. yet over the years I have managed to tolerate morphine  very well which just doesn't make sense.  You can guarantee if I take a tablet that might cause kidney or joint aches I get the aches!  I think this is down to the chemo and the damage it did internally.

Well better get moving, have the tack room to empty ready for the builders.  Heaven knows where we are going to store all the stuff while the builders do their thing.

Obviously will let you know about the scan, when I get the results, and sorry I have gone on and on but I guess the blog is also my release valve too.

Keep fighting and never surrender

Kidney Pain

Another week has flown over, for me it started on Monday with Pilates, I didn't do any arm exercises as raising my left arm above my head or moving it sideways is becoming very uncomfortable.  So I thought I would give that area of my body a miss.  As my teacher hasn't come across anyone who has had so much surgery she is working in the blind as much as I am, lets face it how many people have false diaphragms?  So we concentrated on leg work which also pulls the muscles in your abdomen and yes diaphragm.  I did pilates before then packed in but my resolve was to try it again, I have and I don't think it's helping I still feel like my torso needs lifting off by my ribs, turning maybe 1 cm and replacing.  The pain on my side seems to cut through exactly at the bottom of the rib and feels like someone has inserted a steel board and it hurts.  My kidney has been aching for a while but this week it went banana's, I found myself taking morphine during the night just so I could lay either on my back or side, by the time morning came I was still in pain and took more.  It did help but by 5pm I was back in agony, then as the week progressed and we got to Friday both my kidneys were yelling at me, so I have chucked the lansoprazole as well.  I'm not sure whether this is causing the kidney to ache but I have to start somewhere.  It may not be my kidney but it is back in that area and yes I know that was my warning sign last time but I am ignoring that fact, I am staying cancer free as if I start worrying my imagine may get the better of me.

So have had a painful week and hated going to bed as much as getting up .. you're wondering whether the lansoprazole worked on the stomach .. in truth I do feel a miniscule better there but obviously blacked out by the more pressing pain in the back.

To add salt to the wounds, Bear has had soft poohs and Lexi this morning had the runs .. joy of joys for hubby because he has been the first up each day this week.  I don't think the door mat has been washed as much in the 4 years its been down as it has everyday this week.  Thankfully the weather has been good and it has dried each day to go back down on a night.

The meso crowd has been quiet this last couple of weeks so I hope all are well, Danny is waiting for an appointment for radiotherapy, K is still waiting for his scan .. don't get me started on scans ... L must be off and away, although her latest scan results are due, to name but a few.

I was also saddened to hear that my comrade from 1st Chemo is having to re-challenge his meso, he has had a good run, 6 years in good remission, one small mishap and a quick top up of radiotherapy only in that time so has done really well, but to have to re-challenge is always a knock back.  I hope I get a good 6 years without worry .. somehow I don't think I will be that lucky.

Hopefully my scan date will arrive shortly and then hopefully I will find out if it is stable or if it is growing, a simple yes or no is all I need and from all parties concerned.  I wish we had a marker in our bloods to show whether we are still clear or not it would make life easier for everyone and especially the patient, could you imagine every 8 weeks having a blood test and been told that all is ok, followed then by a scan say every 6 months just in case, it would save a lot of trouble and cost if this could happen .. dreaming again.

I managed to get to healing this week, I asked the lady to concentrate her hands on my side and kidney and this will be weird to you, but her hands started freezing cold, as if like cryo it was killing the cancer (in my mind) then they went red hot like repairing the tissue.  The relief was wonderful and for the first time that day I was actually pain free, it lasted all of an hour but that hour was well received.  I feel there is something in it and made a note to myself to try and not miss any weeks, lately I have missed quite a few. 

The air has really cooled down so think its time to sign off and find some where warm in the house to sit and feel sorry for myself, think I may head for a hot bath as long as Bear will settle, lately he accompanies me when I go for a shower.  Problem is he lies next to the door and getting out can be quite a battle.  Because he is so big we don't think of him still as a puppy.  I have a feeling if I run a bath I will probably have a big black nose followed by two enormous paws trying to get in the bath. 

Speaking of warmth, with the effort of Dr Owen I have been able to book a hol and am counting down to the day I expose my scarred body to the sunshine for the first time in 18 months, like me my skin will have forgotten what sunshine feels like.

Hoping you are pain free and one day I will be joining you in that feeling

Jan

Cryotherapy

Cryotherapy hit the front of the paper yesterday saying how it can kill Breast cancer and the cancer can't regrow - hey didn't I say that after my treatments in UCLA 2 years ago.  They are off to test it more but 35 women with breast cancer had 5 years clear and I must admit I didn't read the rest, but 5 years clear is much better odds than the 3 - 4 months they say Alimta gives.  But as you know cryo will only destroy the mass it is inserted into and not the entire lung cavity where the cancer can keep coming back, but what are the odds that where your meso starts is the only place you have the nasty cells, get them cryo'ed as soon as diagnosed and maybe just maybe you could see the end to meso.  I am sure it only spreads around after it has produced so many tumours and then they spill over sending out more.  Maybe something our researchers (okay we don't have that many) could look into.

We now have the okay to travel to Dubai and the outcome, I need to take my original letters with me and should I be stopped I produce them.  That to me doesn't sound like a travel permit but at least I can legally enter the country for a holiday.  Hubby spent most of yesterday tracking down a holiday but there are no rooms until end of April, all this time waiting and no rooms as Easter is here.  If only things had been done back in January when I first requested we would be away now, as I took my virgin flight back in February.  Oh well have waited this long guess another month won't be that hard to endure ... fraught may I be for sun and a total switch off to meso and surgery and pain. 

Why does the sun make the pain feel less, although to be fair since the operation I'm not sure whether the sun will improve the pain or not as we haven't had any.

Off to shower and into work .. hope you have a good day

Dubai

We are still tackling the problem of carrying morphine to Dubai, the Minister of Drugs has requested a letter from our health department to say that I need these drugs to combat the pain I am in.  I know I have probably grumbled about this subject before but to all those who, like us, who enjoy Dubai and take morphine beware.

All the times we travelled before to Dubai I always had a Doctors letter saying that I needed morphine for personal medical use but the laws have since changed and without an appropriate travel permit I could end up in jail.  The press have been alive again with stories of people being locked up for kissing in public, the other year it was a person with an aspirin stuck in the sole of his shoe.  It really isn't worth the risk of travelling without the proper stuff now, maybe before I wasn't quite legal but now I certainly couldn't afford to go without the consent of the Ministry.

Our GP wrote a letter for me which I duly sent over together with a current prescription, unfortunately this wasn't enough either.  Our GP telephoned last night to say that the PCT were unable to comply with attesting his letter.  Why is beyond my comprehension.  Last night I emailed Dr Owens at James Cook and at 8.00am this morning I had a letter .. our surgeons have more to do and their time is very important, so for him to take time out again to help is just unbelievable but really appreciated.  I have emailed this straight to the Minister and hope that this will do, then obviously the originals will need to be posted and then they will issue a travel permit.  We have no idea how this is done and whether or not we need to go to London to get the permit.  Lets hope all this can be done sooner rather than later, I would hope to be in Dubai within the month but who knows.

Out of desperation we tried for Barbados but flights from Manchester are once weekly and no seats available until end of April.  Gatwick with BA is a nono because of the strikes and where else is extremely hot, sunbeds with 3 inch cushions and guaranteed sunshine that doesn't rely on BA to get there.

One good bit of news I read in the paper yesterday, people with terminal cancer that want to try unauthorised treatments can now buy or pay for the treatment themselves but won't be thrown out of the NHS system, at least if you want an alternative chemo that isn't NICE approved the NHS will administer it as long as we provide it.  I would hope that any treatment gives us more than the 3 months which is a requirement by NICE.  heavens above, going through chemo to only get 3 months doesn't sound pleasant at all, especially if you are knocked silly by the chemo. 

Better get my backside in gear and get to work, will keep you upto date with the Travel Permit.

Oncologist Debate

I do hope this week turns out to be better than last, what with Lexi not eating and bleeding from her tail\anus (can't pinpoint the hole for all that fur) and me feeling tired it can only get better. 

I had slept in again this weekend and have had a few naps during the week so I was surprised when I couldn't get off last night  and was still lying there listening to hubby snoring and the dog panting till 5am this morning.  At least I had kept an eye on her from licking her back end but lo and behold when I went to sleep the dog had her nose in and licked the wound open again.  I didn't stay awake because of the dog I just couldn't sleep, its been weeks since insomnia has struck and then its usually 3 hours during the night, this was from going to bed till just past 5.  At least I rested my limbs although my side is getting increasingly more painful.  I have decided it must be the diaphragm settling down and digging in as my mind really doesn't want to go anywhere else.

I was speaking to Dan last night and we were discussing the use of Gemcitabine and Mitomycin, the combination drug used by Prof Vogl and wondered how many people have tried it in Britain.  Remember I sent an email to J Steele asking if this could be a drug we could use if Alimta had been tried .. oh still waiting for a reply ..  but we need another chemo and we need hope.

Through the meso circle I know that quite a lot of people are getting a raw deal from their oncologists and this maddens me... most feel that they are written off once they have had alimta and then the cancer returns.  Are we reading to much into it or is it that the oncologist has nothing to offer therefore doesn't know how to deal with us or is it please leave me alone and let me treat and spend on those who have a better chance of survival.  I would hope it isn't the latter because our oncologists are an important member of our team.  Yet still we hear of meso sufferers been told its Alimta or nothing, a trial with placebo or nothing .. why aren't they interested in going that extra mile.  If you take info in regarding a current drug that you have read about why do they pooh pooh it straight away?  Would they honestly feel the same if it was their lives or that of a member of their family.

Do we one day just wake up and say ok I will stop fighting - how do we come to terms with that idea, I know that at some point we won't have a choice but while there are options out there, proven or not, aren't we worth the risk of trying it .. as Dan said what have we got to loose our life?

I guess this article isn't what you want to read on a Monday morning but hopefully will give you food for thought, maybe we should set up a nationwide Meso Sufferers Group, rate our service, oncologists and treatments between ourselves then with our own facts and figures demand what we feel is available within the NHS and what we really should expect.  After all didn't the Carers meeting in October say that we need a little more than the usual cancer sufferer.

This brings me back to CT Scans, lets have them 3 monthly - if we can treat all on the NHS whether they have ever paid into it or not then surely those of us who have worked our entire lives and won't be claiming our state pension, can be afforded a scan.  This could help buy some sufferers more time as most people don't know the cancer has started to grow again, after all it takes months even years (in my case) before the disease is even found and in most cases they have no symptoms so how does the sufferer know its started again if it can sneak up on you.  The scan would ensure that any movement is shown and a treatment can be sourced before the spread is to great where options are limited or don't exist at all.

Now you can get off to work .. once hubby is out of the shower I can go in ensuring Lexi doesn't lick her bum while left to her own devices and get myself off to work too.

Having a Moan!

Another week has nearly past us by and life seems to be the same day in and day out.  No matter how many times I tell myself to enjoy each day as a bonus I never do, I expect too much but never seem to accomplish anything.  The builder came back with a price to knock a wall down, erect a new internal and a dwarf wall 9' wide by 20' long, the price .. way way OTT, part of me is wondering why I really want to bother altering the house once again but then when I sit in my office and am freezing I want it done like yesterday.

It's like our holiday, before I flew to Dublin I had contacted the Ministry of Health in Dubai to see about travelling with morphine.  They emailed back the next day stating their requirements, legal Letter from hospital that is treating etc.  I forwarded this on to my lung nurse asking if she would organise with my MDT Leading Doc, this was January 26th.  I received an email on Monday saying that the Doc feels my GP should do this.  Since when was our Doctors surgery a Hospital!  So holiday is back on hold as the documents have to go to Dubai for authorisation before we can travel.  Why Dubai, well its so easy from Newcastle airport and I know the weather will be perfect.  We could do Barbados but travelling in a car to Manchester puts me off, I can't do more than an hour in the car without paying a price the next day. 

My ribs are still painful and last night my kidney kicked off again, although I was drop-dead tired when I climbed into bed getting comfortable was a big issue, not least that Lexi wanted a good third of the bed and laid in an awkward position too.  Then you wake up and your stomach feels knaff .. yet I want to be alive but I want to feel somewhat better.  The camera is a no no even though it could rule out somethings.  I am going to the docs tomorrow as the dizziness has come back and it is worse when I turn on my right side.  In Pilate's on Monday I thought the world was rolling when I moved to my right to do some exercises.  Not a pleasant experience, plus am dizzy in the shower again so have started with the anti sickness tablets to combat the dizziness caused by the stomach tablets - which aren't doing anything as yet!

I guess we are lucky because back in the 1940's they didn't have medication like this and although Doctors were worshipped they didn't have the knowledge or the tools to fix you, so thankfully we are in the 21st century but its not doing a lot for me today. 

The conflicting scan results haven't played around in my mind - so that's a good thing, but I have requested a scan again for March, wonder if that will happen or will I have to keep pushing for it again like last time.  These are the trivial things that really get on your nerves.  I know that everything can't be fixed but pressure could be alleviated if scans came through without you having to badger.  It's just another hassle you can do without.

Bear has been into work twice this week and well behaved on both accounts, apart from drinking antifreeze!  He loves all the attention he gets.  Lexi has eaten the last couple of days, we have resorted back to dog meat without biscuits, for breakfast and lunch and a chicken breast mixed with pasta or rice for tea.  It has vanished in seconds and she is looking for more.  If it is colitis then giving her the same food everyday can bring on another attack as her body will build up the proteins which in the end attach her insides.  If she was human I would say she would be smaller than a size zero for her height.  The vet said she is on the very lean side for a German shepherd, I say she is on the danger level for her breed.  Hubby even gave her a digestive biscuit (if I had done that world war 3 would have broken out in our house) but I have convinced him that rich tea would be better as they aren't made with butter.  I can't bear the thought of the dogs being ill, mainly because it is hard to diagnose what's wrong and treating them isn't always easy .. I suppose a bit like my knaff stomach!

Some good news and bad news over the week, one is John Edwards has had a rise in patients seeking surgery, bad news is that another of our meso circle died. 

It's strange but I don't often think about losing the fight with mesothelioma, only when I hear that it has taken another life - then I get back into the thoughts of I must live everyday to the full - which lasts all of 10 minutes.  We are a strange breed us humans, during our life we ponder on the meaning of life and what it's all about, does it matter if this document doesn't get photocopied or an article read - sometimes I wish we still lived in caves and our only worry was whether we would eat that day, did illness play a large part in our ancestors lives? 

If you have reached this point of today's entry then I hope one thing comes out at you, live for today and I will try better to do the same.  I haven't even gone into work this morning, although I did log on to check a few things but am going to have the rest of the day off .. see I am following my own advice, but will feel guilty for it tomorrow!

Prof Vogl sent me an email yesterday too, he told me to keep up the fight and he will keep up the research, that was nice.  There are only a few who really do take more than a passing interest in meso, some say they have a special interest but when the nitty gritty hits they back away but thankfully we do have a few that stay the course, John Edwards, Andy Owens, Dr Abtin, Prof V, Prof Suh,  to name a few I am sure you know a few to add to the list but it will be a far cry from those who treat other illness's.  I wonder if MESOTHELIOMA is still a dirty word in the medical circles. 

Better get something done otherwise my new vow of making the most has just gone out of the window, take care meso mates, keep battling and no surrender - keep the chinaman at bay and make the most of our day.