During my last lot of treatment I spent most of my time at home rather than hospital and was never sick. This time is going to be very different and I'm guaranteed to be feeling 'proper poorly' and being sick, tired and sorry for myself. So I'm making plans on what I can do to entertain myself.
I've got lots of books and my kindle il take although I'm not sure what Concentration I will have. I have decided to make the most of all the time I have and do something useful! I want to do crafty things so I've got myself a cross stitch for Madeline's zoom and I've decided I want to sew! I want to learn how to make little gifts and see some clothes for Madeline. Who knows I may be a natural and be clothing all the kids in Manchester!
So if you have any old fabric you aren't using or happen to pass any pretty bits and pieces I could make things from i would appreciate it lots! ( not that I'm being cheeky or anything; ok I am! But chocolate and grapes won't be appreciated as much! )
I started a diary for Madeline when she was a baby that I've never kept on top of as much I want to to I want to print out lots of pics and put them in and get upto date, that will pass hours and hours of even weeks as I'm so far behind!
Any other ideas to keep me busy would be greatly received! I don't want to be sat doing nothing till 2014 but I may have limited capabilities!
Wednesday, 31 July 2013
Where I'm upto!
I'm sure everyone is confused as to what's going in with me so thought I'd do an update post! I think I've just about got my head around things!!! Il try not to waffle but no promises.
My chemotherapy finished almost 3 months ago now ( how long ago does that sound when since then never quite got round to ever totally finishing treatment as my body has always thrown a spanner in the works!
After chemotherapy I was meant to have radiotherapy to my chest ( where the bulk of the tumour is ), this is a consolidation treatment and would just give the tissue an extra blast to make sure any abnormal cells were well and truly gone. Before radiotherapy I had a post chemo PET scan. ( the PET scan is the one that shows up the black blobs where cancer is ). The results came back and showed a great response everywhere apart from my left hip. Before I could complete my radiotherapy we needed to establish what this "thing" in my hip was.
The options for my hip were residual lymphoma, a totally separate bone cancer eg sarcoma or a benign tumour. I had to be investigated in Oswestry as its a specialist orthopaedic hospital and if I did have bone cancer would have my surgery there. I was referred for an "urgent" bone biopsy and was told this would take place within 10 days. 5 1/2 weeks later I had my bone biopsy. A report that contained 2 lines " not cancer, not lymphoma" was faxed over to Christies and I could start my radiotherapy. We are now 3 weeks past that and still no idea what hip thing is as haven't heard anything else but I have an appointment in Oswestry on Friday so maybe I will finally find out what it is!! That's the hip story over!
I turned up to my first radiotherapy session with my Fresh spray tan, pedicure and eye lashes and had a full tummy after celebrating actually starting the end stage of my treatment with some pub grub. I had already been scanned and tattooed ( 3 tiny black dots on my ribs to line up the machine ) at a previous appointment so I hopped on the table and was expecting a 3 min blast. They did a quick scan of my chest before they started. This showed that my chest was very different that in was 6 weeks before and there was a mass and my left top lung was collapsed. Treatment was stopped and the consultant was called. They explained radiotherapy was only a consolidation treatment and wasn't going to cure active disease and the delay in starting had allowed the few tiny cells in there to grow into a 9x7cm mass. ( in hind sight if my disease is so aggressive radiotherapy was only going to keep it at bag for a few weeks or so it was always going to come back ). Another " urgent" ct scan was booked and I did some more waiting.
I had a ct scan a week or so later to show the detail of disease ifr my neck to hips. My professor rang with results a couple of days later. He confirmed that I did have collapse of the left lung where the tumour was squashing it, I also had a lesion ( patchy bit of of disease) within both lungs ( still lymphoma! ).
So the plan of action! Well it's to start all over again with a harsher regime and then a stem cell transplant. I will have salvage platinum chemo as an inpatient 3 times in 9 weeks, within that time they will collect my own stem cells. I will then join the transplant list and when I have a bed I will receive conditioning chemo. This is chemotherapy that is very high dose and lots of different ones that will kill every cell in my body and my bone marrow production. After this I will need to be in isolation as will have no protection from infections. I will then have twice daily full body radiation for 3/4 days then when my body really is poisoned / battered / non functioning I will be given my stem cells back. Hopefully they will 'graft' into my bone marrow and start making my body work again! I will need to stay in isolation for a further 4-6 weeks after that and be getting regular blood and platelet transfusions and my body won't quite manage to do that for upto 4 months after my transplant.
They can't give me an exact date for my transplant as there may be delays and set backs and I may need more chemo than I think to get rid of my disease before transplant. At a guess I will prob be admitted at the end of November till the new year.
Gutted that that is my most exciting time of the year, is my 30th, Madeline's 4th bday and Xmas. I was so excited I booked me and Maddie a party in February! Maybe I was a little keen!
I fear I may have lost a few readers this far down, so well done if you made it this far!
Before I get started with my first chemotherapy I have a bone marrow tomorrow, then sign upto a research trial, then PET scan next week and then I'm ready to go! I'm on steroids now to keep me going till then as I was very breathless and tired without them.
My head was briefly all over the place and I was a proper grump when I realised I'm miss so much stuck in a room without my baby girl but I'm over it now. It's got to be done. It's not the path I would choose but it was chosen for me and I know I can do it no problem so head down and off we go..........
Ps the pic is of my hair now that's all coming through so nice but that will be falling out again in about 3 weeks :( this time I will also loose my eye lashes and eye lashes and be morphed into a shiny headed ET figure shuffling around but il be back to my normal self in 2014
My chemotherapy finished almost 3 months ago now ( how long ago does that sound when since then never quite got round to ever totally finishing treatment as my body has always thrown a spanner in the works!
After chemotherapy I was meant to have radiotherapy to my chest ( where the bulk of the tumour is ), this is a consolidation treatment and would just give the tissue an extra blast to make sure any abnormal cells were well and truly gone. Before radiotherapy I had a post chemo PET scan. ( the PET scan is the one that shows up the black blobs where cancer is ). The results came back and showed a great response everywhere apart from my left hip. Before I could complete my radiotherapy we needed to establish what this "thing" in my hip was.
The options for my hip were residual lymphoma, a totally separate bone cancer eg sarcoma or a benign tumour. I had to be investigated in Oswestry as its a specialist orthopaedic hospital and if I did have bone cancer would have my surgery there. I was referred for an "urgent" bone biopsy and was told this would take place within 10 days. 5 1/2 weeks later I had my bone biopsy. A report that contained 2 lines " not cancer, not lymphoma" was faxed over to Christies and I could start my radiotherapy. We are now 3 weeks past that and still no idea what hip thing is as haven't heard anything else but I have an appointment in Oswestry on Friday so maybe I will finally find out what it is!! That's the hip story over!
I turned up to my first radiotherapy session with my Fresh spray tan, pedicure and eye lashes and had a full tummy after celebrating actually starting the end stage of my treatment with some pub grub. I had already been scanned and tattooed ( 3 tiny black dots on my ribs to line up the machine ) at a previous appointment so I hopped on the table and was expecting a 3 min blast. They did a quick scan of my chest before they started. This showed that my chest was very different that in was 6 weeks before and there was a mass and my left top lung was collapsed. Treatment was stopped and the consultant was called. They explained radiotherapy was only a consolidation treatment and wasn't going to cure active disease and the delay in starting had allowed the few tiny cells in there to grow into a 9x7cm mass. ( in hind sight if my disease is so aggressive radiotherapy was only going to keep it at bag for a few weeks or so it was always going to come back ). Another " urgent" ct scan was booked and I did some more waiting.
I had a ct scan a week or so later to show the detail of disease ifr my neck to hips. My professor rang with results a couple of days later. He confirmed that I did have collapse of the left lung where the tumour was squashing it, I also had a lesion ( patchy bit of of disease) within both lungs ( still lymphoma! ).
So the plan of action! Well it's to start all over again with a harsher regime and then a stem cell transplant. I will have salvage platinum chemo as an inpatient 3 times in 9 weeks, within that time they will collect my own stem cells. I will then join the transplant list and when I have a bed I will receive conditioning chemo. This is chemotherapy that is very high dose and lots of different ones that will kill every cell in my body and my bone marrow production. After this I will need to be in isolation as will have no protection from infections. I will then have twice daily full body radiation for 3/4 days then when my body really is poisoned / battered / non functioning I will be given my stem cells back. Hopefully they will 'graft' into my bone marrow and start making my body work again! I will need to stay in isolation for a further 4-6 weeks after that and be getting regular blood and platelet transfusions and my body won't quite manage to do that for upto 4 months after my transplant.
They can't give me an exact date for my transplant as there may be delays and set backs and I may need more chemo than I think to get rid of my disease before transplant. At a guess I will prob be admitted at the end of November till the new year.
Gutted that that is my most exciting time of the year, is my 30th, Madeline's 4th bday and Xmas. I was so excited I booked me and Maddie a party in February! Maybe I was a little keen!
I fear I may have lost a few readers this far down, so well done if you made it this far!
Before I get started with my first chemotherapy I have a bone marrow tomorrow, then sign upto a research trial, then PET scan next week and then I'm ready to go! I'm on steroids now to keep me going till then as I was very breathless and tired without them.
My head was briefly all over the place and I was a proper grump when I realised I'm miss so much stuck in a room without my baby girl but I'm over it now. It's got to be done. It's not the path I would choose but it was chosen for me and I know I can do it no problem so head down and off we go..........
Ps the pic is of my hair now that's all coming through so nice but that will be falling out again in about 3 weeks :( this time I will also loose my eye lashes and eye lashes and be morphed into a shiny headed ET figure shuffling around but il be back to my normal self in 2014
My jolly holiday
I'm the sort of person that feels really hard done by if I don't get a "proper holiday" with a pool, beach and lots of sun. As we didn't go away last year I was desperate to get away this year.
After booking and cancelling holidays on multiple occasions this year I finally realised I wasn't leaving the country this year! The UK was very kind to me though and with July 2013 came sun sun and lots of sun! That eased the blow an awful lot! I could dig out my summer dresses and sniff my sun cream and felt all summery.
Even more surprisingly we are currently at the end of July and the sun is still shining!
After my radiotherapy was cancelled it meant I could join the family for a week in Anglesey. It's been a lovely break watching Madeline playing with her cousins Hettie and Clara. They had a whale of a time running round the gardens and beach and swimming in the sea. The doggies came and they behaved too and enjoying skipping around!
Time to go home today to get back to hospital appointments but I'm glad I got a lovely relaxing break in the sun, spending time with family and giving my body some nice food / drink and vitamin C before I'm locked ins. Room and poisoned!
After booking and cancelling holidays on multiple occasions this year I finally realised I wasn't leaving the country this year! The UK was very kind to me though and with July 2013 came sun sun and lots of sun! That eased the blow an awful lot! I could dig out my summer dresses and sniff my sun cream and felt all summery.
Even more surprisingly we are currently at the end of July and the sun is still shining!
After my radiotherapy was cancelled it meant I could join the family for a week in Anglesey. It's been a lovely break watching Madeline playing with her cousins Hettie and Clara. They had a whale of a time running round the gardens and beach and swimming in the sea. The doggies came and they behaved too and enjoying skipping around!
Time to go home today to get back to hospital appointments but I'm glad I got a lovely relaxing break in the sun, spending time with family and giving my body some nice food / drink and vitamin C before I'm locked ins. Room and poisoned!
Monday, 22 July 2013
Hip pain
Lay here at 5 am after my usual 430 am wake up call in the form of excruciating hip pain, and thought it would be a good time to write about it while the painkillers kick in!
I've had intermittent hip pain since Madeline was 1 ( 2011 ) and after seeing the GP and physio was diagnosed with trochanteric bursitis ( an inflammation of the muscle surrounding the hip ). As it was intermittent it wasn't too bad and although it was getting progressively worse, my high dose steroids I started on in December knocked the pain on the head immediately!
Throughout my chemotherapy regime dec-may I was pain free, it was such a novelty. No hip pain and my chronic lower back pain went away too. Once this stopped though the pain came back with increase intensity and wasn't much fun. It almost wasn't a shock to then find out on my post treatment PET scan that I had a tumour in my hip.
I was referred for an "emergency" bone biopsy with the specialists at Oswestry orthopaedic hospital and was assured it would be done within 10 days as I still needed to complete my radiotherapy treatment. 5.5 weeks later I was admitted to have this done ( better late than never as the saying goes).
Oswestry was so different to any other hospital I had been to, like a little cottage hospital where the staff are all very laid back! It even had it's own pet peacock! ). I did my own admission paperwork (as soon as they realised I was a nurse ), took my own bloods and didn't see the anaesthetists till I was lay on the table and he was pushing drugs down my line. Certainly didn't see anyone after and went home 2 hours after my GA.
Despite all that it was a nice little relaxed stay and I had some nutty neighbours to keep me entertained!
After 9 days of waiting for results wondering if I was the most unluckiest person to have 2 unrelated cancers at the same time, or some residual lymphoma in my hip. It was in fact neither and I still, ( 3 weeks down the line ) have no idea what it is! The phone call said " no cancer, no lymphoma but we aren't sure what it is" so I'm non the wiser! I have a 3x2cm "area of concern" in the sticky out bit ( well it would stick out if it didn't have such a covering / padding ), below my ball and socket joint.
I'm sure il find out one day! Due to go back for an appointment in a few weeks but until then I'm stuck with popping painkillers and being woken religiously at 430 every morning!
I've had intermittent hip pain since Madeline was 1 ( 2011 ) and after seeing the GP and physio was diagnosed with trochanteric bursitis ( an inflammation of the muscle surrounding the hip ). As it was intermittent it wasn't too bad and although it was getting progressively worse, my high dose steroids I started on in December knocked the pain on the head immediately!
Throughout my chemotherapy regime dec-may I was pain free, it was such a novelty. No hip pain and my chronic lower back pain went away too. Once this stopped though the pain came back with increase intensity and wasn't much fun. It almost wasn't a shock to then find out on my post treatment PET scan that I had a tumour in my hip.
I was referred for an "emergency" bone biopsy with the specialists at Oswestry orthopaedic hospital and was assured it would be done within 10 days as I still needed to complete my radiotherapy treatment. 5.5 weeks later I was admitted to have this done ( better late than never as the saying goes).
Oswestry was so different to any other hospital I had been to, like a little cottage hospital where the staff are all very laid back! It even had it's own pet peacock! ). I did my own admission paperwork (as soon as they realised I was a nurse ), took my own bloods and didn't see the anaesthetists till I was lay on the table and he was pushing drugs down my line. Certainly didn't see anyone after and went home 2 hours after my GA.
Despite all that it was a nice little relaxed stay and I had some nutty neighbours to keep me entertained!
After 9 days of waiting for results wondering if I was the most unluckiest person to have 2 unrelated cancers at the same time, or some residual lymphoma in my hip. It was in fact neither and I still, ( 3 weeks down the line ) have no idea what it is! The phone call said " no cancer, no lymphoma but we aren't sure what it is" so I'm non the wiser! I have a 3x2cm "area of concern" in the sticky out bit ( well it would stick out if it didn't have such a covering / padding ), below my ball and socket joint.
I'm sure il find out one day! Due to go back for an appointment in a few weeks but until then I'm stuck with popping painkillers and being woken religiously at 430 every morning!
Sunday, 21 July 2013
The wanderer returns!
As the title suggests, I'm back! After my influx of posts in January and my stray post in April I thought I'd come back and start blogging again.
Why I hear you ask?! Well I'm not really sure! It's a good outlet for a good moan, it ensures everyone is kept upto date with my weird and wonderful life, I'm going to have an awful lot of time on my hands and lastly I've had more than one person comment on how useful the blog was. It enabled them to be exposed to terminology and areas of life they otherwise wouldn't have had any knowledge of. Plus it's the only time il be able to educate my clever friends on family on anything.
So here goes I will be blogging lots in the coming weeks so everyone can try and make sense of what's going on, including me!
Why I hear you ask?! Well I'm not really sure! It's a good outlet for a good moan, it ensures everyone is kept upto date with my weird and wonderful life, I'm going to have an awful lot of time on my hands and lastly I've had more than one person comment on how useful the blog was. It enabled them to be exposed to terminology and areas of life they otherwise wouldn't have had any knowledge of. Plus it's the only time il be able to educate my clever friends on family on anything.
So here goes I will be blogging lots in the coming weeks so everyone can try and make sense of what's going on, including me!
Subscribe to:
Posts (Atom)