I just thought I'd let you all know how Diana, Rob and Mike are doing because they are such an important part of this story and their love,care and support has been so constant! Rob has been in the midst of exams and has managed to just apply herself to the task in hand knowing that she would soon be home. She and Ade are both mad Man U supporters and they watch and debate all the games together in separate locations! He loves his 'footie' conversations with her and I know that gives him a huge lift! Mike has now finished school and last night was his Prom! I know that loads of pics were taken so I'm sure at least one of them will be posted soon! He has researched 'different' sorts of treatment for Ade and is the most incredible young man...quietly getting on with things and being a tremendous support to his Mom at home!
And then there is Diana! Diyenu, Edna or Eddie! Let me tell you that Ade is no easy customer and her patience and compassion are endless! She almost has a medical degree now and understands more than you can imagine of what this process involves and what all the tests mean! She has at times had to deal with a very difficult patient and thankfully she has tennis! Can you imagine how she wacks that ball!? There are times that are really tough for her and I know she also has to cope with work and the house and Max(lovely doggie) and a constant barrage of calls from Ade's sisters! I cannot even begin to tell you all how much we appreciate and love her!
And I simply cannot forget to mention Max. Max is glued to Ade when he's home. He lies next to him,sits with him, goes for a forest walk with him and stares at him all the time! He used to be a snarly, snappy, don't like anyone dog...or that's how it felt to me....but now he is the most mellow lovely dog in the world! And coming from me that is huge!
I will update later today!
Thursday, May 21, 2009
Good days and not so good days
Here I am as Ade's scribe from sunny Londinium! Yes it's me Russ and I've been employed again to keep you all up to date with how he is progressing! I have been given permission to tell it like it is and I am sure that he will let me know if I miss anything out!
I thought I'd just copy the note that I sent to a few of you on Monday 18th and Tuesday 19th and continue from there.
Hi Guys,
Just spoke to Ade and it was amazing! He actually answered the phone and I was so happy that he did. Really does mean that we are headed in the right direction!
He is still in hospital and has been moved out of ICU to a room on the cardiac floor! He has an army of great doctors looking after him but he is still fragile and really managed to get himself into a serious condition. He is slowly regaining some strength but will have to be on a whole shop full of drugs for a while! We can deal with all of that and he will just have to do as the doc ordered and of course listen to the rest of us!
He actually walked around the ward today which is excellent news as he was showing signs of pneumonia! Being bed ridden does not help the drek in his lungs but being up and about does….
I will know more later when I speak to Diana who is tired but fine! I left last week and Phil came in so at no time have they been on their own! I will keep you all informed of as many details as possible! Please forward my email to anyone who wants an update and thank you so much for all your love and concern. Our family are truly amazing and the friends unbelievable!
Lots of love,
Hi all of you,
Here is your daily update and not so great today!
I have just spoken to him and from what I can gather the mental decline started yesterday pm! He is terribly low and very,very tearful and depressed! Then along came an awful night of disturbed or very little sleep and to top it all a rubbish nurse! Well you can all imagine,knowing Ade as you do, how that made him feel.
He has just had enough and desperately wants to get home but realises that unless he is much stronger and that all the test are ok this will be delayed. This is very hard for him to deal with! I know that it is easy to say just have a bit to eat and drink a little more but Ade just can’t when he’s low and this situation is not helping at all!
So now we have brought in the cavalry!
My Mom is going tomorrow and although she has not been that well she will be with him,gowned up, in hospital and force feeding him, taking the slack that he can so easily dish up and being even tougher than Phil or me!
He asked me to do his blog so I will officially take over and I agreed if he would speak to me several times a day so I could genuinely let you all know how he is doing!
So sorry it’s not as ebullient as the day before but I think we’ll have to get used to this seesaw effect for awhile and just accept that an inch a day forward is great progress!
Lots of love,
Russ
Rochelle Bass
I thought I'd just copy the note that I sent to a few of you on Monday 18th and Tuesday 19th and continue from there.
Hi Guys,
Just spoke to Ade and it was amazing! He actually answered the phone and I was so happy that he did. Really does mean that we are headed in the right direction!
He is still in hospital and has been moved out of ICU to a room on the cardiac floor! He has an army of great doctors looking after him but he is still fragile and really managed to get himself into a serious condition. He is slowly regaining some strength but will have to be on a whole shop full of drugs for a while! We can deal with all of that and he will just have to do as the doc ordered and of course listen to the rest of us!
He actually walked around the ward today which is excellent news as he was showing signs of pneumonia! Being bed ridden does not help the drek in his lungs but being up and about does….
I will know more later when I speak to Diana who is tired but fine! I left last week and Phil came in so at no time have they been on their own! I will keep you all informed of as many details as possible! Please forward my email to anyone who wants an update and thank you so much for all your love and concern. Our family are truly amazing and the friends unbelievable!
Lots of love,
Hi all of you,
Here is your daily update and not so great today!
I have just spoken to him and from what I can gather the mental decline started yesterday pm! He is terribly low and very,very tearful and depressed! Then along came an awful night of disturbed or very little sleep and to top it all a rubbish nurse! Well you can all imagine,knowing Ade as you do, how that made him feel.
He has just had enough and desperately wants to get home but realises that unless he is much stronger and that all the test are ok this will be delayed. This is very hard for him to deal with! I know that it is easy to say just have a bit to eat and drink a little more but Ade just can’t when he’s low and this situation is not helping at all!
So now we have brought in the cavalry!
My Mom is going tomorrow and although she has not been that well she will be with him,gowned up, in hospital and force feeding him, taking the slack that he can so easily dish up and being even tougher than Phil or me!
He asked me to do his blog so I will officially take over and I agreed if he would speak to me several times a day so I could genuinely let you all know how he is doing!
So sorry it’s not as ebullient as the day before but I think we’ll have to get used to this seesaw effect for awhile and just accept that an inch a day forward is great progress!
Lots of love,
Russ
Rochelle Bass
Tuesday, May 19, 2009
Catch-up
For all those wondering why you haven't heard from me in a few weeks - it's because I have been in hospital. And believe it or not, the hospital system does not allow me to sign in on my blogspot account!
So here's the brief update - even though it feels like the longest time. I was readmitted to the hospital 10 days ago because I had difficulty breathing a few days after the last surgery. My oxygen level was low and there was some fluid build up around my heart and lungs. That was all starting to resolve and on friday morning, as they were prepping me to leave, they did one last blood test. My white blood count had skyrocketed and I was moved immediately to the icu. Within 2 hours I was treated with massive doses of anitibiotics. Any of you who have ever spent time in a hospital know it takes them forever to do anything - but they really moved like lightening on this one!
I can tell you this has been an ordeal. In the icu you are prodded, poked and generally annoyed non-stop. Days meld into nights and all you are aware of is noise and beeping. There is no such thing as restful sleep - or any sleep! My white blood cell count has come down a lot and the infection is responding to the treatment. Today I will be getting 2 litres of blood and then I will be moved to a room where I am less tethered and can walk around and begin my recovery. Thank you all for your calls and concern. It means the world to me.
Ade (dictated not read)
So here's the brief update - even though it feels like the longest time. I was readmitted to the hospital 10 days ago because I had difficulty breathing a few days after the last surgery. My oxygen level was low and there was some fluid build up around my heart and lungs. That was all starting to resolve and on friday morning, as they were prepping me to leave, they did one last blood test. My white blood count had skyrocketed and I was moved immediately to the icu. Within 2 hours I was treated with massive doses of anitibiotics. Any of you who have ever spent time in a hospital know it takes them forever to do anything - but they really moved like lightening on this one!
I can tell you this has been an ordeal. In the icu you are prodded, poked and generally annoyed non-stop. Days meld into nights and all you are aware of is noise and beeping. There is no such thing as restful sleep - or any sleep! My white blood cell count has come down a lot and the infection is responding to the treatment. Today I will be getting 2 litres of blood and then I will be moved to a room where I am less tethered and can walk around and begin my recovery. Thank you all for your calls and concern. It means the world to me.
Ade (dictated not read)
Thursday, May 7, 2009
I'm home
Before I forget, here is the link to the Biotech company:
http://www.championsbiotechnology.com/index.html
www.personalizedcancertreatment.com
Carpe Diem.
http://www.championsbiotechnology.com/index.html
www.personalizedcancertreatment.com
Carpe Diem.
Wednesday, May 6, 2009
Hospital day
I'm still in the hospital in the same observed unit. CSU for those of you who know the lingo! I'm actually feeling really good. Some pain and discomfort but mentally upbeat. All my chats with the doctors have been positive and encouraging but please don't expect me to remember it all! Diana has all the info and Russ is the backup! I had to get my body working again (no need to go into details!) And that was what I did! By mid afternoon I was moved to my own room and what a great room it is! Mike and Diana joined Russ and I and we settled me in! Hopefully I will be off home tomorrow!
Carpe Diem.
Carpe Diem.
Tuesday, May 5, 2009
Mouse implant day
The best thing about my psychiatric appointment was that Dr Ward reassured me that what I was experiencing was a long large panic attack! The mind is so vulnerable and the speed that I went into decline is just unbelievable. It is so difficult to haul yourself out of this frame of mind and the things that went through my head were hideous! My sisters were my support this weekend (Diana being in Toronto) and hopefully this won’t happen again. Dr Ward intends to up the dosage a little of the tablet I take but understanding more does help enormously. My frame of mind was so much better as we left for St Joseph picking up Phil from the station on the way.
I suppose I should explain a little of what I am having surgery for……..! As you all know I have my team now set up at St Joseph’s and the team there have been great. I am also under the care of an oncologist at Sloane Kettering in New York and with another oncologist at Johns Hopkins here in Baltimore. We have been so fortunate in finding these amazing doctors and the most awesome thing is that they are all happy to work together to try and find the most suitable treatment for me. Yesterday’s surgery was for Dr Sidransky’s team to begin their molecular analysis of my specific tumour. In order to do this they need a sample of the tissue and any of the fluid around it. The surgery was done by Dr Krasna who is the head of the team at St Joseph’s and the results will also be forwarded to Dr Miller in New York! One of the studies involves bits of the tumour being planted into special imunosupressed mice! The cancers are then treated with different types of chemo to find the most appropriate drugs for me. At the same time there are some molecular studies being done on the rest of the samples. Of course I am giving you the briefest synopsis of this incredible procedure and I’m sure there will be those of you who want to read more. I will post the places to log onto so you can do that!
Dr Sidransky’s team met us the hospital. Sara is the director of the personalised oncology service and the nurse who explained everything again to us and Jim Martell who is the founder of this incredible Biotech company called Champions. Sara went into theatre with me and she collected the samples which were then speedily taken to the team waiting to do the implants at Johns Hopkins. Jim sat with Diana, Russ and Phil while this was taking place and he was a huge support to them all. Sara kept them informed of my progress and was there to explain again and again as needed! We actually all felt amazing and excited the whole day. It felt like we were part of new world treatment. This is how we can all hope that cancer treatment will be for everyone in the future. Personalised and accurate and with all doctors working together! We were like Trekkies with me as the Captain of the Enterprise going into uncharted territories! It is hard to describe a surgical day as uplifting but it truly was and we all appreciated very much the compassion and commitment from Sara and Jim. I saw them all in recovery and we had all spoken to Dr Krasna by then. The surgery went well, Dr Sidransky got his bits and we could not stop smiling! Dr Krasna did say that he did not find much malignant tissue in the fibrotic mess around my lung so we were overjoyed. I could actually feel myself not going into meltdown anymore! We will have some more results in 48 hours and of course I will keep you posted. I know there have been many calls at home from you all so thanks again for all the love and support. Especially to my Mom who has been in constant contact with all of us and is the core of the strength that we all have! Your "Adrinki" loves you very much!
Carpe Diem.
I suppose I should explain a little of what I am having surgery for……..! As you all know I have my team now set up at St Joseph’s and the team there have been great. I am also under the care of an oncologist at Sloane Kettering in New York and with another oncologist at Johns Hopkins here in Baltimore. We have been so fortunate in finding these amazing doctors and the most awesome thing is that they are all happy to work together to try and find the most suitable treatment for me. Yesterday’s surgery was for Dr Sidransky’s team to begin their molecular analysis of my specific tumour. In order to do this they need a sample of the tissue and any of the fluid around it. The surgery was done by Dr Krasna who is the head of the team at St Joseph’s and the results will also be forwarded to Dr Miller in New York! One of the studies involves bits of the tumour being planted into special imunosupressed mice! The cancers are then treated with different types of chemo to find the most appropriate drugs for me. At the same time there are some molecular studies being done on the rest of the samples. Of course I am giving you the briefest synopsis of this incredible procedure and I’m sure there will be those of you who want to read more. I will post the places to log onto so you can do that!
Dr Sidransky’s team met us the hospital. Sara is the director of the personalised oncology service and the nurse who explained everything again to us and Jim Martell who is the founder of this incredible Biotech company called Champions. Sara went into theatre with me and she collected the samples which were then speedily taken to the team waiting to do the implants at Johns Hopkins. Jim sat with Diana, Russ and Phil while this was taking place and he was a huge support to them all. Sara kept them informed of my progress and was there to explain again and again as needed! We actually all felt amazing and excited the whole day. It felt like we were part of new world treatment. This is how we can all hope that cancer treatment will be for everyone in the future. Personalised and accurate and with all doctors working together! We were like Trekkies with me as the Captain of the Enterprise going into uncharted territories! It is hard to describe a surgical day as uplifting but it truly was and we all appreciated very much the compassion and commitment from Sara and Jim. I saw them all in recovery and we had all spoken to Dr Krasna by then. The surgery went well, Dr Sidransky got his bits and we could not stop smiling! Dr Krasna did say that he did not find much malignant tissue in the fibrotic mess around my lung so we were overjoyed. I could actually feel myself not going into meltdown anymore! We will have some more results in 48 hours and of course I will keep you posted. I know there have been many calls at home from you all so thanks again for all the love and support. Especially to my Mom who has been in constant contact with all of us and is the core of the strength that we all have! Your "Adrinki" loves you very much!
Carpe Diem.
Monday, May 4, 2009
Chemo 2 (Round 5)
Monday came and went in the rain! I had so much to do before the surgery so the day actually passed quickly and of course Diana was on her way home! Fixed the broken tooth, copied all my medical notes for the millionth time and by 2pm I was back at St Joseph’s for a routine ECG for pre-op assessment and then my normal round of Chemo! By the time we left it was almost 6 and so Russ went off to Bikram Yoga and I went to fetch Diana! I can’t say I wasn’t anxious about the surgery tomorrow but I did feel a lot better than the past few days. I knew I had to get an early night because the next day was my surgery and an appointment with my psychiatrist….who would have thought that I would be putting those two words together…MY and PSYCHIATRIST! No jokes please!!
Carpe Diem.
Carpe Diem.
Sunday, May 3, 2009
Weekend update
Hopefully today Saturday we will go and visit Rob and I’m sure that will help too!
I will definitely update you all over the next two days especially as I have my London based secretary, therapist, confidant, and of course big sister back! What a deal. Phil, who holds equal status, may come visit from New York on Sunday. In some ways I am the luckiest son, brother, husband and father anyone could imagine. In other ways it's just damn unfortunate luck!!!
I really didn’t feel that great today but it seems that this is no longer an excuse for ‘she who must be obeyed’ aka my big sister! I was allowed a small extra nap after my 100th bath …it’s my keep warm method and it also mellows me for about ten seconds!. Anyway nap I did and then it was time for an outing. I really had to dig deep and force myself out so I booked a massage and Russ had a manicure! I did feel good after…good enough to drive around Baltimore looking for the Tulip Gardens that are hidden in an amazing area of a beautiful suburb! Just being out was good for us both but second time around we didn’t find the Tulips…!? Maybe tomorrow?
Another nap guaranteed post lunch and then off we went to see Rob on campus. Today is the Cancer Walk. Scores of young students walking round a track all night raising money for Cancer. The atmosphere was incredible,tents pitched to keep the walkers dry and rest the weary, food to feed the masses and all this on a Saturday night when they would all normally be out partying. I was really proud and appreciative of all their efforts. Once it started raining we left for home. Not a bad day considering how I felt in the morning!
Sunday and it’s Philly day! My little (middle) sister arrived at 10:30am and it was so good to be together. She came down on the early train from NY to play with us and she is no fool! She’d looked up the exact location of the Tulips and we were armed with a map! Now why had I not thought of that? Mike joined us for a breakfast at Lennies and then the three of us and Max went to see the Tulips! This is a huge area between some gorgeous properties that is planted by the neighbourhood each year and is filled with amazingly coloured Tulips and totally stunning azalea bushes. It was magical especially as it did not stop raining!
Phil left later that afternoon and Russ and I went to see Earth. What a great movie! Makes you glad to be alive in such a magnificent world!
Tomorrow Chemo and dentist! Did I mention that I broke a tooth eating PASTA!! Called Dr. Brewster (Diana’s boss) and she kindly fitted me in on Monday am. I’m just taking it calmly…never rains, just pours!!!
Carpe Diem.
I will definitely update you all over the next two days especially as I have my London based secretary, therapist, confidant, and of course big sister back! What a deal. Phil, who holds equal status, may come visit from New York on Sunday. In some ways I am the luckiest son, brother, husband and father anyone could imagine. In other ways it's just damn unfortunate luck!!!
I really didn’t feel that great today but it seems that this is no longer an excuse for ‘she who must be obeyed’ aka my big sister! I was allowed a small extra nap after my 100th bath …it’s my keep warm method and it also mellows me for about ten seconds!. Anyway nap I did and then it was time for an outing. I really had to dig deep and force myself out so I booked a massage and Russ had a manicure! I did feel good after…good enough to drive around Baltimore looking for the Tulip Gardens that are hidden in an amazing area of a beautiful suburb! Just being out was good for us both but second time around we didn’t find the Tulips…!? Maybe tomorrow?
Another nap guaranteed post lunch and then off we went to see Rob on campus. Today is the Cancer Walk. Scores of young students walking round a track all night raising money for Cancer. The atmosphere was incredible,tents pitched to keep the walkers dry and rest the weary, food to feed the masses and all this on a Saturday night when they would all normally be out partying. I was really proud and appreciative of all their efforts. Once it started raining we left for home. Not a bad day considering how I felt in the morning!
Sunday and it’s Philly day! My little (middle) sister arrived at 10:30am and it was so good to be together. She came down on the early train from NY to play with us and she is no fool! She’d looked up the exact location of the Tulips and we were armed with a map! Now why had I not thought of that? Mike joined us for a breakfast at Lennies and then the three of us and Max went to see the Tulips! This is a huge area between some gorgeous properties that is planted by the neighbourhood each year and is filled with amazingly coloured Tulips and totally stunning azalea bushes. It was magical especially as it did not stop raining!
Phil left later that afternoon and Russ and I went to see Earth. What a great movie! Makes you glad to be alive in such a magnificent world!
Tomorrow Chemo and dentist! Did I mention that I broke a tooth eating PASTA!! Called Dr. Brewster (Diana’s boss) and she kindly fitted me in on Monday am. I’m just taking it calmly…never rains, just pours!!!
Carpe Diem.
Friday, May 1, 2009
Diana leaves for Toronto
I did manage to drive Diana to the airport with Russ in tow and by the time we got home I was exhausted and went to bed whilst Russ schlepped Mike to Bikram Yoga! And I thought I could rest…!!!
First a call from my Thoracic Surgeon Dr Krasna to say that he had spoken to one of the Oncologists I saw last week and that he was on board to operate and deliver the two nodules needed for the treatment I have elected to pursue. Then Dr. Sidransky called and explained the procedure again and as I was on my own I had to take all of this on board and prepare myself for Tuesday surgery! Russ and Mike came home with a little food but my mind was….well you can imagine!
So here I am at the beginning of a new chapter and although we have an amazing team here, New York and London I feel like I’m flying solo with no instruments and no fuel! My family are so supportive and really understand how fragile I become in these situations and I am trying to find the courage within to embark on this next stage.
I have realized that being with people is so much better for me. Mike had a girl friend over for dinner last night and sitting round the Shabbat Table together was great and I even felt quite normal.
Carpe Diem.
First a call from my Thoracic Surgeon Dr Krasna to say that he had spoken to one of the Oncologists I saw last week and that he was on board to operate and deliver the two nodules needed for the treatment I have elected to pursue. Then Dr. Sidransky called and explained the procedure again and as I was on my own I had to take all of this on board and prepare myself for Tuesday surgery! Russ and Mike came home with a little food but my mind was….well you can imagine!
So here I am at the beginning of a new chapter and although we have an amazing team here, New York and London I feel like I’m flying solo with no instruments and no fuel! My family are so supportive and really understand how fragile I become in these situations and I am trying to find the courage within to embark on this next stage.
I have realized that being with people is so much better for me. Mike had a girl friend over for dinner last night and sitting round the Shabbat Table together was great and I even felt quite normal.
Carpe Diem.
Thursday, April 30, 2009
Our visit to st. Joseph
By Thursday morning we actually thought I’d caught something as the physical manifestations of my mood were so flu like that we went to St Joseph to seek medical advice! Thankfully all my blood work came back normal and we were assured that there was nothing lurking anywhere. They did, however, suggest I talk to someone and in true St Joseph efficiency by the time I arrived home we had a number to call and I am seeing Dr. Bemedek (Psychiatrist) tomorrow. In times like these we need all the help we can get to keep on an even keel so I will seek the help of this doctor too! All of this is so new to me…I sometimes cannot believe the difference in just over a year.
Carpe Diem.
Carpe Diem.
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