Last post ....maybe . (1 Viewer)

[Violet1]

Hi Cobweb, have also been diagnosed with meso but back in August 2014. Am currently in LRINFIRMAY having been stable over the Xmas period but a flare up with pain has caused me to be here. With tha chemo it depends on which course you have and they can taylor it to suit . My first lot I was all over the place but it did have good effects especially before surgery to remove as much as poss, although not as successful as hoped. Second lot currently cycle 5 helping and would strongly suggest getting referral to prof fennel at Leicester, such a knowledgable and optimistic person. Wish you all the best and keep positive it's the best advice I can give except to talk to Mavis

 

[Cobweb]

Hi Violet

Sorry to hear you have Meso but happy to see you are still fighting it . Mavis did also suggest that we contact prof Fennel in Leicester but so far we have not done so . We live in Whitby and our nearest good hospital is James Cook in Middlesbrough where my husband was diagnosed. They have offered chemo as well as possible operation in Sheffield after chemo .....but have not been too optimistic about how much time it might buy . Travelling to Leicester for treatment seems a long way although if a cure was on offer we would make the effort . At the moment husband is feeling slightly more breathless but otherwise OK and he is still enjoying his food and vine and has even put on some weight over Christmas which we really enjoyed . I hope that everything works out OK for you and that you will be out of hospital soon .

Good luck

Cobweb

 

[Violet1]

I'm sure knowing how this lot react to helping each other you could park on a driveway overnight etc. And know that the best intentions are also there. The team here are geared up differently to other hospitals and all sing the same song, I started at addenbrookes but after seven diff doctors and consultants in six appointments none of who said the same thing confidence gone we were told by somebody else at a support group about a)operation with a mr nakas and b)prof fennel and the oncology team.
We were offered to have chemo nearer to home but feel the support and team here knew exactly what I need, if I didn't believe that I would not have bought our m/h new in June .
Whilst a cure is not on the table yet, every day brings it closer and my chances of being first improves, as the lottery says you gotta be in it to win it.
Prof fennel is one of the leaders in this research even so far as offering trials in Holland via other colleagues, not joking as when came up in clinic our daughter lives 45mins from Amsterdam so only the costs of food would be needed, and travelling time almost halved.
I won't lie, the chemo can be hard at times and the breathlessness a pain in the butt as was very active at work and play but I am determined to get the most before my sell by date which at the moment is a dot on the horizon .
Should you want to talk pm me and I will leave number you can reach me on.
Neil

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[MitchandJenny]

Fabulously supportive !!!!
Cobweb, you only need to post the plea for a parking place on someones drive near by and you will be flooded with helpful offers I'm sure..
Once again,, the best of luck..
Mitch..

 

[Cobweb]

Jenny &Mitch Not Possibe since MH was sold a few days ago .
Violet . Thanks again for your encouraging words ...we might take you up on the
Call front. At the moment we are fearing that the pleurodesis my husband had at the time of the biopsy has not worked since last CT showed fluid in the area again . Also he has a lump on the scar and it seems that the Meso has seeded to it ....he did not get radiotherapy to the scar at the time . He has called the hospital and they are arranging an appointment next week to drain the fluid and discuss what to do next . We might discuss being referred to Leicester at the time or any drug trials going . Otherwise he is feeling OK only disappointed that the pleurodesis did not work and that the meso has seeded.

Regards Cobweb

 

[Detnor]

We can only offer our thoughts and prayers.
I lost both my parents to mesothelioma, my dad from his work in shipbuilding and my mum being exposed to the asbestos from his overalls which she shook daily and washed - a situation that is far too common. When diagnosed, they gave my dad a few months, but he lasted three years, nobody knows.
I hope you can stay positive.

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[simsy56]

What can I say that hasn't already been said? My heart goes out to you both.
Be strong, be positive, and stay tuned to this site for comfort, company, and friendship.

Craig

 

[Violet1]

There is accommodation available in student rooms via the hospital, Sue is currently resident at £25 a night for first four nights then £15/night or £175 for a fortnight. Shared kitchen/bathroom between 4 bedrooms each block. Need anything else I'm here

 

[Stonemags76]

My thoughts are with you. Remember that, although your husband needs support, so do you. Look after yourself in all of this, and you will be able to be stronger for him.

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[Flying Fifer]

I don't know you, but like everyone who has already sent you a message - our thoughts and prayers are with you both. I can understand where you are coming from as my Husband has a debilitating illness & we take each day as it comes. We cannot plan ahead as many people do and at times I am jealous of that. It is great that you have plenty of MH memories to look back on - laughing is a good medicine. All I can add is keep up your positive thinking as it DOES help keep everyone connected to you strong. Our good wishes to you.

 

[Peter Sansom]

So sorry to hear this cobweb. We're relatively new to the MH world, being ex caravanners. So on the proverbial learning curve. As said previously on here, you have had eight years of the MH'ing life, and a boat across the pond (which I envy you). Different approaches to the chemo treatment thing...for and against, and can understand your decision. You both sound positive and have my admiration in what is a very difficult time. My best wishes and good vibes to you (afraid I'm not religious)

 

[cruiser]

We are so sorry to hear about his illness . We know what you are going through. We wish you all he best. So easy to say . But never give up. I have added two years my life. And still going ,not strong but still going.

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[Frentchy]

1. And the French want to re-open these mines and continue to sell this known lethal material, to un suspecting 3rd world countries. Its premeditated Murder, on the Scale of Weapons of mass destruction, and has been since before the 1950's
   
2. Asbestos mining stops for first time in 130 years

 

[steles]

Mr and Mrs Cobweb, so sorry to hear your news. my husband died of meso almost a year ago now. he was diagnosed and given 5 months to live, but we were lucky enough to manage just over two years. the trick is to live one day at a time, and be grateful for what you have and for the lovely times you've spent together.and you have to do what feels right for you, not necessarily what others have done. it's not easy, but the folk on this website are amazingly supportive. make sure you find a local Macmillan nurse - they are worth their weight in gold and won't interfere, but are always there for you when you need them most. at the most challenging times, you'll be so thankful for the way they smooth the path for you both. my heart goes out to you, I know how difficult it can be. pm me if you want to chat on a more personal level.

 

[vin0114]

So sorry to read of your sad times, keep strong for him. My very best wishes.

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[JaG]

So sad to read posts like yours, and so soon after retirement too. When we read posts like yours, and as we get older there are more and more, it brings home that time is running out for all of us. Like you, we made that decision to live life to full until it ends...and who knows when that will be. One thing is for sure, it will come to us too one day in one form or another.
Good luck in whatever you both decide to do and we hope you can have more good times in whatever time there is left for both of you. God bless you both.

 

[The Happy Hooker]

We are an easy drive from Leicester and have spare rooms should you need one. I'm sure you both will make the right decisions for you. Thinking if you at this difficult & confusing time, Lorraine & Dave x

Jenny &Mitch Not Possibe since MH was sold a few days ago .
Violet . Thanks again for your encouraging words ...we might take you up on the
Call front. At the moment we are fearing that the pleurodesis my husband had at the time of the biopsy has not worked since last CT showed fluid in the area again . Also he has a lump on the scar and it seems that the Meso has seeded to it ....he did not get radiotherapy to the scar at the time . He has called the hospital and they are arranging an appointment next week to drain the fluid and discuss what to do next . We might discuss being referred to Leicester at the time or any drug trials going . Otherwise he is feeling OK only disappointed that the pleurodesis did not work and that the meso has seeded.

Regards Cobweb

 

[steles]

Jenny &Mitch Not Possibe since MH was sold a few days ago .
Violet . Thanks again for your encouraging words ...we might take you up on the
Call front. At the moment we are fearing that the pleurodesis my husband had at the time of the biopsy has not worked since last CT showed fluid in the area again . Also he has a lump on the scar and it seems that the Meso has seeded to it ....he did not get radiotherapy to the scar at the time . He has called the hospital and they are arranging an appointment next week to drain the fluid and discuss what to do next . We might discuss being referred to Leicester at the time or any drug trials going . Otherwise he is feeling OK only disappointed that the pleurodesis did not work and that the meso has seeded.

Regards Cobweb

Cobweb if you do choose to be referred to Leicester (meso HQ), there was also a reduced rate B&B at Premier Inn NW, about half a mile walk to Glenfield where there's a special hospital bus to LRI, or buses outside to Glenfield and Leicester. Liz Darlison at Glenfield is amazing and, if you haven't contacted her already, I recommend you do. I'm hoping you have one of the new specialist meso nurses in your area too. there is so much help and support out there, but you do need to know where to look.

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[Shrimp]

So sorry to hear your news and sorry that you've had to give up your MH.
Our thought are with you.

 

[Gray B]

Don't need to say I was very sorry to hear about your husband. I slightly know we're he is, the same time he was diagnosed I was diagnosed with advanced localised prostate cancer (aggressive). Start 2 months of radiotherapy in February know idea what the future holds as there so many different stories out there. I only retired June 15 and we were looking forward too using the van quite a lot this year and in the years to come. Some people say it's a good cancer to have (compared to others ) but from we're I'm sitting I not so sure.
As for the asbestos thing sort of worked with it in the 70s (indirectly) and it has always been at the back of my mind.
Anyway all the best to you both.
Kind regards Gray.

 

[scousebird]

Don't need to say I was very sorry to hear about your husband. I slightly know we're he is, the same time he was diagnosed I was diagnosed with advanced localised prostate cancer (aggressive). Start 2 months of radiotherapy in February know idea what the future holds as there so many different stories out there. I only retired June 15 and we were looking forward too using the van quite a lot this year and in the years to come. Some people say it's a good cancer to have (compared to others ) but from we're I'm sitting I not so sure.
As for the asbestos thing sort of worked with it in the 70s (indirectly) and it has always been at the back of my mind.
Anyway all the best to you both.
Kind regards Gray.

Good luck with your treatment

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[f6c]

So sorry to read about your husbands condition.

 

[Cobweb]

Many thanks to you all for your kind words and advise even offering accommodation and practical help . Many have sent PM with offers of help and encouragement . Many thanks....We might take you up on the offers if the need arises. We have a network of friends and neighbours here at home who have already helped with many tasks . Husband has been feeling quite well for the last couple of days and we have taken advantage of the sunny weather going for gentle walks .....We have almost felt normal for a few days and hardly thought about Meso . Sometimes denial can be a good place to be .

I wish any of you with cancer the best of luck with treatments and hope that you can stay positive .We do have many friends who have successfully recovered from prostate cancer as well as breast cancer and friends having treatment at the moment . We also have friends who have worked with asbestos for years in shipbuilding as well as builders who are fit and well ....although now a bit worried. I spoke to a lady who's husband died of meso a few years ago .He had worked as an electrician where he had been in constant contact with asbestos . He was a very fit man who owned a gym and regularly pushed himself to the limits . His workmates also in contact with asbestos are all OK and some could be described as "couch potatoes" . My husband was also very fit regularly mountainbiking on the N Yorks moors ....this made us think that maybe the meso was somehow activated by pushing your lungs to the limits ? Total guesswork of course ! Maybe sitting on the sofa watching TV is the answer !


Regards Cobweb

 

[g8ysn]

So sorry to hear about your husbands health keep positive and just be there to support him all the best for the future

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