Sunday, 30 August 2009

Looking for a baby

Just remembered we have decided to find Lexi a new sister so if you know of any beautiful long haired german shepherd puppies for sale please leave a message.

I had thought about a Newfoundland too but I don't think there is a lot of breeders in the North East or Yorkshire area.


Good News

Just a very quick note as I feel rotten again today, but I must let you all know.

I received an email from a lady who had the operation a couple of days before me by John, She is back to normal and playing golf 2 to 3 times a week. It is such wonderful news that this can give back life and more importantly back to normal.
I don't understand why I am so unlucky but for others out there they should know it can go right. The lady had a worse time than I did in the hospital and left 30 days after operation but without drain in place and no fluid, infact the only painkillers she took were paracetamol. Whereas yours truly came out with more morphine and nerve pain tablets plus drain but only 11 days after operation.
That is all for now but I am sure you are as joyful and happy for this lady as I am.

Friday, 28 August 2009

Mesothelioma Groups on Macmillans

I know that most of you trawl through the Macmillan site for mesothelioma, when I first was diagnosed I went on Cancer UK and there wasn't a section for meso so I went under general I think. These days meso has got a name, probably not the best, and it does finally have a section. Infact I didn't visit any sites from 2005 till 2008 then I was ablated and wanted people to know about this treatment. What is she waffling about .. well I just want to point out that there are two groups set up on Macmillan's now, one is the EPP, for those who have had the full monty operation and some of us have added our names who haven't had the full monty, then a separate group for Mesothelioma. So if your out there with this disease get yourself members of the groups, this would give a better idea of numbers on how many we are!

Yes I am still off work why else do you think I would be on the computer on a morning! It's not that I feel as bad as last week but still feel out of sorts with myself. Also took a muscle relaxant last night, that's two nights in a row, otherwise I would be in pain. I feel like under my arm is swelling up, have checked it in my reflection but it doesn't look it, but it feels a lot bigger.

I'm not certain but I think Prof Vogl is also looking at cryo-ablation to complement his chemo treatment. I wonder what gave him that idea!

I guess this is the last of the summer, infact its the last of the weekends we class as summer, I know September is officially summer but the last time we had a hot September was 1997 but that was a bit of a wash out! Since being married this is the longest time I have gone without having a holiday. Before getting hitched I was too involved with work and would hardly take any time off, even a Sunday! now I am craving, even if I was to be bored rigid on a beach, I am still craving.

I haven't had my scans sent to me yet either so haven't been able to send one to Dr Abtin, if I haven't received them does that mean that John hasn't had one either! The politics of the NHS is getting worse. They say there is no money in the pot for pensions yet how many civil servants walk out of government\council jobs at 55 with an index linked final salary pension!!!! Why don't they change them to the type most company's offer 40/60ths of what has been paid! That would certainly put a stop to the over spending, then we may just have some left for the NHS! I mean if they can't afford to put the stamp on it I'll pick it up!

If John see's the scan and the air leak looks like it is stuck forever he may give me the heads up on flying, just a long week end in Spain would do right now, sun on my scarred and tortured back would be a blessing. Whinge whinge Whinge, that's me today!

Have a good bank holiday everyone. If you are going in for surgery next week I hope everything goes alright, if your having chemo remember to drink plenty of water (if possible) if its radiotherapy stay out of the non-existent sun and for everyone else make the most of a typical wet bank holiday.


Sunday, 23 August 2009

Mesothelima the Silent Killer

Last night I decided to take a sleeping tablet, it had been a long day as we attended a neighbours wedding. For the first time in over 9 months I wore a dress but after an hour my poor ribs were hurting. I couldn't exactly wear a baggy t-shirt or top! We stayed for a good 4 hours and I was well chuffed that I held out so long.

But with being overtired from not sleeping properly and in pain I took a sleeping pill. I awoke at 7 as lexi wanted to get up, found myself pottering around the house for an hour, feeling quite yak! so I went back to bed. I was surprised to open my eyes at the clock saying 11 am. Yet I still didn't feel that good. Hubby was over the moon when I said I was going to lie down on the sofa as he got to watch the Grand prix without being interrupted.

I am maybe being a little too cautious as well, 4 people at work have come down with a summer flu (at least I pray its not swine flu) so am undecided whether to go in tomorrow or not. Have so much work to catch up on and although I can do quite a bit on line to the office it never seems the same. You can never have all the information you need on a computer, hence my office has cupboards, bookshelves and boxes everywhere (at work not at home).

Yes, I believe I am still coming through the side effects, although not as bad. Two weeks over you would think I had to be back to normal by now, but no. Getting fed up of myself feeling this way. I may sound like I'm always complaining on here, and sometimes on emails that I may send to friends, but when I talk to people I hardly every mention how crap I feel.

Do we ever feel better! We have to fight for so long to get treatment and understanding that if the cancer doesn't wipe us out the process of getting better does! I saw my Doc and was disgusted to hear about the fight he was having to get my local MDI team in place up here.

I look at what I have probably cost the NHS, original operation for discovery and radiotherapy. The Oncologists times and the nurses but free drugs from Ely Lilly. A couple of CT scans and xrays from 2005 to 2007. Privately paid oncologist since together with privately paid chemo, Two trips to the States, no NHS until I went for the operation with John in Sheffield. Yet it seems the local team don't want the burden of me!! Maybe I should have been a meth head and alcoholic, bet they would have bent over backwards to treat me then. So I ask again what have I cost the NHS, next to nothing in comparison with the aforementioned who probably don't even pay PAYE. Yet when I fill out the good old self assessment or send in any additional tax, (you know bank interest that you save rather than spend) I should request they pay me back what I've never used up.

I haven't had children, so no free education that costs us the tax payer. I haven't been on the dole or claimed sickness benefit (although I do now have my Blue Disabled Badge) so I look at it this way, surely I should be in credit!! No I'm not wanting to sound like I am having a go at anyone that is ill or needs benefits etc, just the fact I've cost nought in comparison yet unwanted incase I do. Okay change of record

I bought this stupid hosting site for my website, (if I ever get it running) but haven't a clue what to do. Anyone ever used 123.reg as a host please help!!! They said set up included yet I can't even get into the set up!

You can tell I'm getting somewhat better, the pain isn't the best and still taking 240 of morphine per day. I have done Pilates twice and it seems strange trying to pull by nonexistent diaphragm in! I do know by looking in the mirror how bad my posture has become, especially more so since the young lady pointed it out.

My ears are still ringing but the dizziness is starting to go, even when I go to bed it is nowhere near as bad as it was when I came off the tablets or even when I was on them! At least something positive there.

Recently I haven't been as positive, yet here I am cancer debulked and possibly gone forever, yet I feel bleak. I don't know where I stand anymore. As a person I know who I am but I feel guilty if I say I don't feel good, I can't blame cancer because its not there and if I blame it on surgery I feel guilty as the surgery has kept me alive. Has anyone else experienced this feeling of lost? Will my ribs hurt for the rest of my life, will lying on that side always hurt on movement, will stiffness still sneak in if I've sat in the same position for more than 30 minutes? Can I wake up and ever feel normal again.

When I was a work-aholic I was up and out of the house with 30 minutes max, these days its 2 hours turn around on a morning and that's without washing my hair! I don't seem capable of hurrying to do anything anymore. Maybe I don't like what I'm becoming and maybe it has something to do with age rather than physical health! All I know is that I don't like it.

Thankfully have heard no really bad news lately, everyone within the meso circle seems to be doing fine .. long may this continue.

When you have an illness like mesothelioma its amazing how many people don't class you as important or as in as much danger as having breast cancer. If mesothelioma had as much publicity as breast cancer my guess is we would probably have had a cure for it by now. It's a man made cancer so we must have a man made cure! I know we are pushing the boundaries like never before with campaigns etc but seems we are still in the never lands where publicity is concerned. Since February have you heard anything on the news or local radio regarding mesothelioma .. no . but I guess you have heard lots about breast cancer. How do we get the same acknowledgement as potential killer on the loose?

A colleague was telling me that due to a water fault she had to call the council in the check something in her loft. Turns out she has all the pipes lagged in Asbestos, there hasn't been a big hoo haa on TV news about it, the whole street has to be assessed for it yet nothing in the papers or on TV. Not that I want to drive people into terror but surely this should be something that the whole town she lives in should be aware of. They may have asbestos lagging and not to use their attics unless they have been checked by a qualified person to ensure they are not dangerous. She told me the guys said the asbestos was okay but they have now sealed the area around it. What would have happened if the family used the attic for storage and had banged into the pipes and brushed the asbestos off by accident. How many people do store goods in the attic? I've seen people, just push a bit harder it will squash up against something. How do they know they aren't squashing a box up against asbestos and brushing the top off. Come next xmas when they come to pull the tree out of the loft they may well think its covered with dust but it could be deadly dust for all they know! Twenty years later they may start feeling breathless, will they remember the Dust on the xmas tree box, or old boxes of pictures etc they stored in their attics.

I guess its time to eat something, I had a laugh went for bloods and MOT at docs the other week, some kind of yearly programme they are now doing. I asked if I could have my blood stats or oxygen level checked, they have a machine in the nurses office but the request was shrugged off. (So much for an MOT then). I would love to know how much oxy I have these days. When I was undiagnosed and in a bad way my oxygen level was always around 99%, (amazing really wasn't it) now with a prune for a left lung I would love to know. Any ideas how I get the nurse to check it?

Thursday, 20 August 2009

Meso is better than this

Here I am still suffering, I did start to feel better but to be fair I was taking sleeping tablets so at least I had more than 30 minutes, problem is they are addictive and I don't want to get stuck on those and never sleep normally again!

I tossed and turned all night and by 6.30 I was worn out. I let Lexi out, who really didn't want to get up, then read the paper. I still felt sick and to be honest I am fed up with myself. Yet by 8 pm at night I am starting to feel good, then its bed at 10 and the whole thing starts again.

I am also wondering if I am hanging for a cold or something but as yet that hasn't shown itself. Went to the Docs yesterday and he offered me alternative anti-depressants. I couldn't believe it as I wasn't on duloxetine to fix a black outlook I was taken them to kill the bloody nerve damage pain. All I have succeeded to do is give myself cold turkey and realise my side wasn't ready to let go of the painkillers!

I feel swollen under the left arm, and my ribs seem raw, have had some sharp needle pains (only way I can describe them) but will have to put up with it ... I took the jump so now I will have to swim. I can't remember feeling this bad when I was full of cancer!

So here we are nearly 2 weeks later and still feel bl***y c**p so beware my friends it wears you down. I have been to work but have got nothing done as my mind just can't concentrate but if I stayed home I think I'd pick a fight with hubby so better out of the way.

Going for blood tests etc tomorrow maybe they might show something up. Have found out that my scans still haven't been sent so am not amused and that my GP has had a fight to get me on the MDI team up here. Will let you know the outcome soon.

Still fighting on .. ridiculous after all this time

Saturday, 15 August 2009

Still withdrawing

Its 5 days since the withdrawal symptoms started, (do I sound like BB?).

This morning I wished I could have got through to the NHS Direct as I still felt terrible. For a couple of nights I have taken a sleeping pill to help not hear the explosions taking place inside my head so I thought I'd try a night without to see if I would feel better this morning. So I ended up with sleep deprivation too! I would nod off and it felt like hours then wake up look at the clock and it was only 3 minutes since I closed my eyes. This happened from 11.10 last night till 7.00 this morning. Maximum sleep period was 33 minutes and what woke me was the dog opposite barking like mad at 3.48 am!

My nephew rang me from his hols, as his Dad told him I'd been out of the office since Monday (yes I had to take time off work I feel that ill). I'm pleased he rang as he received an A star for Physics, somehow he managed to sit an O level from Cambridge University. So obviously I am as proud as punch. Anyway I said I felt I could now understand how someone trying to kick a drug habit felt his answer was amazing it went:

"Auntie Jan, people go to rehab for 6 months when they stop taking drugs, you think you can stop taking tablets overnight!"

I said "But they are just pain killers", he replied "Yes that play with the old grey cells in your head!"

He's such a caring lad, to see him at 6' and not yet 17 he is amazing. I am trying to get him to sort me a web site out as I think it would be easier for posting different information. I taught him basic computers when he was 7 now the teacher will become the student as he will need to show me web pages and how to write them!

So back to this withdrawal, I go up and down like a yoyo. My temperature is anywhere from 35.1 to 37.1 (36.5 is normal for me). This morning I just wanted to feel sorry for myself but hubby gave me no sympathy at all, there's nothing he can do and it's not like acute pain. Yesterday was the same. I find about 12.00 I can sleep for an hour but my bones ache. Then I feel hungry, then I feel sick. Even worse my coffee on a morning makes my stomach turn and I can't abide Tea first thing. Have tried to drink lots of fluid but I'm not much of a juice drinker, like everyone a glass of cranberry during the night and that's about it.

Once I've eaten (quite difficult when you feel sick at the same time) I feel slightly better but it doesn't last long. Also having problems concentrating.

I went on a website regarding withdrawal from the tablet and found a whole load of info, part of me thought about taking a tablet again to see if it would help then try one every other day for a month but whats the point I'd be unlucky enough to still suffer the same extent. Also I did have a bit of a panic as it said it can cause heart failure. As I have already had that this year I was even more worried but I have been checking my BP and pulse, although its everywhere its nothing like when I did have heart failure so I think I am safe there.

Spoke to my other brother today, he suffers from MS, and has to take similar tablets for nerve damage. Neither of us have been able to stomach the same kind of tablets, when he swapped one to another he went through this for 2 weeks. I couldn't remember him being off work though. I always feel a whimp around him because MS has taken so much from him yet he too is still at work 6 days a week. So you can imagine when I feel crap and go down the corridor and say 'I'm going home' he looks at me as if to say what for you'll get over it!

So still suffering with no end in sight. I won't keep boring you with the details but you will know when this episode is over, you'll hear me yelling from the roof top!

I just hope they don't call me in next week for the radiotherapy, I would have to cancel.

Wednesday, 12 August 2009

Duloxetine Withdrawal

Firstly, you all know that I have never held back the truth about pain, the ups and downs of the operations to remove the mesothelioma and of course I have published a couple of untasteful photographs. I never said my site would be for the faint hearted and I will always believe if you plan to win the battle against mesothelioma you had better prepare yourself for the biggest fight you will ever face.

Now my operation should be a thing of the past, I went back to work early April, I know it was too soon in medical terms but yet for me it was the right time. I doubt I would have got on top of the pain without Duloxetine for the damage to my nerves. I had mentioned coming off them earlier and should have known I would have problems. At one point I was on 60 morning and night but I couldn't handle them, they (so I still believe) made me dizzy and also caused tinnitus. So after a short period I dropped back to 60, if I suffered any withdrawal at that time I probably didn't notice as I was still suffering quite badly from pain, tiredness and everything else that goes with going under the knife. A few weeks, no less than a month, I dropped to 30 a day and planned to come off them reasonably quick. Discussed this with Trevor and not a problem, one less tablet to take and also lets see how the side is.

I took the last one Saturday morning and on Sunday felt okay. Monday afternoon for no reason I could feel my mind getting aggitated. Had yet another bad nights sleep and on Tuesday I felt ill, went into work my ribs felt like I had someone re-pour the concrete on them so movement is quite restricted and thought I had the start of flu. I had to come home, slept for 3 hours and felt a little better. Had a terrible night again, this time timberines were banging around in my head if I moved it, my ears are ringing, dizzy, headachy etc etc. I got up at 7 feeling restless and yak sat outside in the sunshine for 45 minutes deciding whether I wanted to throw up or not. I had a meeting scheduled at 10.30 with an external consultant so rang him at home to cancel and went back to bed.

Poor Hubby nearly died when he saw me re-enter the bedroom and climb into bed, this is not a Jan thing, he asked if I wanted the Doc but I declined, afterall it was only 8am!

Slept on and off till 10.30, got up and felt even worse. Gary had printed off a list of withdrawal symptoms and side effects, the only few I don't have are the really mindbending stuff! Well no that's not true, I have about 12 of them. He forced me to eat as that seemed to help yesterday, so I downed a sandwiche then fell asleep in the sun, well kind of a sleep. Have phoned the pharmacist so ensures me it should decrease everyday but can take 1 to 2 weeks to completely go. If I feel exactly the same or worse by Friday to contact the doctors.

So you win on one hand and lose on another. I was so excited about having a good scan, I even went to pilates on Monday and thought I was heading on the right track, but I always seem to get knocked back. I haven't managed to go to healing today, when really that should be something I should have done, but didn't dare drive and what if I was sick in the middle of it!

I went on and on in the early days about how wonderful this tablet was and it has to be said it did its job on the pain, why do we have to have such severe downsides!

Saturday, 8 August 2009

CT Scan

It was that time to see what's happening inside. On Friday I went for the Ct and after the scan found myself lying there for quite a while. I thought there might be a problem with the fluid in the chest cavity but was surprised to have the Doc come in and see me. It was the false diaphragm he wasn't sure about, also the heart sac. It felt quite good to be the first patient he has ever had under the scanner with false internal bits!

Afterwards went to see the Specialist Lung Cancer Nurse and we had a quick preview of the scan. The right lung is perfect, I was a little worried in case my old friend thought about shifting sides! Hubby seemed to check out the left more, it was only a quick preview, but the air leak still hasn't gone and my lung looked like a prune in comparison to the white space and the air pocket.

Looks like no flying this year ... I was so hoping it would go as I really would like to sit in the sun and know its not going to cloud over and rain or the wind pick up. Infact, they are muck spreading near us and if the wind blows the wrong way, need I say more. Hopefully this will let the guy who's going to zap me know how far he needs to go inwards and ensures that nothing new spouts growth. Also another good reason to have gone on holiday before that starts as after radiotherapy its factor 50 on quite a lot of the left side. More patches of white and brown. One day someone will shoot me thinking I'm some kind of cat loose on the beach!

It was also a sad week the week before my pain management doc retired. Although I am thrilled for him I will miss him. I decided to get in touch with him (recommended by a family friend) in May 08 when I was still well. I wanted him to know me when I could run around and not be ill (little did I know I was really ill). He has given sound advice and especially after the operation he and my GP worked well together to make sure the pain was as bearable as possible.

A friend of mine is off the see Dr Vogl soon, although not meso, non small cell lung cancer, I hope it works. Unfortunately Dr Abtin was unable to help due to the position of the cancer but thankfully Dr Vogl may manage to get to it.

Once I get a full low down on the scan I will let you know my plans, meanwhile I'm praying for sunshine tomorrow and a lazy day with a good book and a nice brown body.

Sunday, 2 August 2009

Pictures from January

This two pictures are ICU on the 15th January after 9 hours down the operating theatre.

Here I am all smiles 3 days later, what operation?

I must of been in no pain here.
Its quite nice to see such a large smile on my face I must have managed to stay awake longer than 20 minutes. Apparently when hubby and friends came I kept falling asleep on them. I would be in the middle of a conversation then go back to sleep wake up and finish what I was saying. (So I've been told)

You can see my lump, One warning I will give, do not push yourself up the bed on your bum dragging your back up the matteress, thats what I did and I think this is why I have a lump. I actually thought I had a bandage for protection but I was pulling at the staples, my own fault then! The other you can see how far the scar comes round and obviously one of the drains left in position. This is the one that caused me so much pain and I think is still the reason my left breast still hurts so much. If I hadn't had such a long body the drain would have been in a better position. Guess it would have helped if I didn't have so many drain sites from before

Your probably wondering why I am showing you these, I don't quite know myself but if you are planning to go through the operation you know what is to come and I honestly think it makes you stronger. I knew how bad the drains would be from previous surgery, I thought I knew how bad the operation was going to be but I under estimated how bad it was going to be. Yet here I am 6 months later, 6 months that I wouldn't have had.

My life is still mine, you all know I was back at work long before expected to be, yes I still suffer with pain but pain lets you know your alive and as long as you can deal with the pain the sun always shines because your still here

I always promised I would be truthful about pain, discomfort and life and to this day I have remained so. If you are contemplating this operation, and I seriously hope the majority of you are, look at these and tell yourself you will be like this and come through the otherside better than me.

One last word, everyone has a different pain threshold and some people may recover without too much pain in 2 months, others may take longer, but you have nothing to lose if your meso is in a position to let you have it removed.