Went for CT results today- not what I expected
The 2 lots of ESHAP chemo I have had have had no effect, like none. There is no plan as yet as I appear to be beyond standard protocol now. I know this is not good.So, no stem cell transplant next week. I see the consultant next Thursday who is currently discussing my case with his peers.....I am looking at a different chemo, maybe an experimental chemo, at the moment no one has any idea......ARSE.
On the plus side we came 3rd in local pub quiz (my first ever) so.......happy days! Won a bottle of wine - hurrah! Anyone keen for next week :)
Actual bummer
x
Thursday 30 June 2011
Wednesday 29 June 2011
big day tomorrow
Eeeeeeeek!
Get scan results and plan of action tomorrow, not been thinking about it too much til today now quite nervous. Got my head around intensive chemo, stem cell transplant and one month hospital stay......so that will be the GOOD news! But what if, what if.....bugga I have plans!
x
Get scan results and plan of action tomorrow, not been thinking about it too much til today now quite nervous. Got my head around intensive chemo, stem cell transplant and one month hospital stay......so that will be the GOOD news! But what if, what if.....bugga I have plans!
x
Monday 27 June 2011
All good
The glumness didn't last thank goodness! My son's celebration ceremony went well, I am so proud of him.....and it turns out his friends don't think I am at all embaressing so it made him feel better too. He jammily appears to have landed the coolest job ever thanks to a great friend of mine, and spent the afternoon yesterday out on a boat helping out with wakeboarding! I watched him walking off down the road today to catch the train and he is such a different kid to a year ago, he's ace, I am so happy.
Busy weekend socially with lots of nice food, drinks, chats and dancing. Again so grateful for my ace friends and good times. Feeling well physically and mentally.
Quite a quiet week ahead, scan results and plan thursday. Probably go to London Saturday back Monday then Wednesday is hospital time. Starting to think about what to take with me, my little brother has lots of films and comedy for me, a friend is lending me a box set of 'cold feet' which will see me through a few days, mum is insisting I get into crosswords hmmmm but I draw the line at jigsaw puzzles! I have an unstocked mini bar for things I may fancy, might treat myself to a Roberts digital radio and maybe a 3D nintendo jobbie?? I might just ask to be sedated for 4 weeks actually!
I think I am getting better at this whole thing, seriously, an attitude of acceptance has made it so much easier to get through. I really thought after my 6 months of chemo in NZ I would never ever go through any more treatment, it was so awful. Now physically this is comparable but psychologically with the support through the Drs, Nurses, Auxillary Nurses, Counsellor, IV access specialist, Alternative Therapists, Financial advice, Wig technician......and then friends, family, my boss, work colleagues.....I feel I am in a massive safety net and I can't fall through any holes!! And consequently my husband can stay my husband and not my case worker!! I need to acknowledge here that my work colleagues in NZ became my friends and my family when I was ill and did everything and anything that they could and were with me every step of the way. I will never forget the massive acts of kindness that they showed me during that time and I couldn't have got through it without them. I guess the difference is here I trust that my care is coordinated and planned and people are on top of it, something unfortunately I didn't have last time. But also there is a difference in me, I am taking this on with more guts because I want to get through to the other side - there's still so much more fun to have! It's all good!
Busy weekend socially with lots of nice food, drinks, chats and dancing. Again so grateful for my ace friends and good times. Feeling well physically and mentally.
Quite a quiet week ahead, scan results and plan thursday. Probably go to London Saturday back Monday then Wednesday is hospital time. Starting to think about what to take with me, my little brother has lots of films and comedy for me, a friend is lending me a box set of 'cold feet' which will see me through a few days, mum is insisting I get into crosswords hmmmm but I draw the line at jigsaw puzzles! I have an unstocked mini bar for things I may fancy, might treat myself to a Roberts digital radio and maybe a 3D nintendo jobbie?? I might just ask to be sedated for 4 weeks actually!
I think I am getting better at this whole thing, seriously, an attitude of acceptance has made it so much easier to get through. I really thought after my 6 months of chemo in NZ I would never ever go through any more treatment, it was so awful. Now physically this is comparable but psychologically with the support through the Drs, Nurses, Auxillary Nurses, Counsellor, IV access specialist, Alternative Therapists, Financial advice, Wig technician......and then friends, family, my boss, work colleagues.....I feel I am in a massive safety net and I can't fall through any holes!! And consequently my husband can stay my husband and not my case worker!! I need to acknowledge here that my work colleagues in NZ became my friends and my family when I was ill and did everything and anything that they could and were with me every step of the way. I will never forget the massive acts of kindness that they showed me during that time and I couldn't have got through it without them. I guess the difference is here I trust that my care is coordinated and planned and people are on top of it, something unfortunately I didn't have last time. But also there is a difference in me, I am taking this on with more guts because I want to get through to the other side - there's still so much more fun to have! It's all good!
Friday 24 June 2011
This too shall pass
It's my son's informal ceremony today to celebrate the end of his GCSE course, as we were talking about it this morning he told me that I could come as long as I wasn't embaressing......I promised to behave.Then I realised that I was feeling some reluctance to going, but why? I have no other commitments today, am I just being lazy?? No, I have woken up today feeling a bit down which is in big contrast to my recent joy - I don't really know where it's come from. But the upshot of it is that I feel low in confidence and don't feel up to going and meeting new people and being a normal grown up. My jeans are too tight and my hair is short and thin - I feel like crap. I can cope very well with the people I know and actually socialise a lot (am cooking for 9 tomorrow then we are all out to watch a band). So I explained to him how I was feeling and said I didn't want to go, he was cool and said he would get a train and then hang out after with his friends. A few minutes later he said actually can you come? And you do look nice when you make an effort (bless him). So I will put my face on, 'do' my remaining hair, get changed and just try and man up, for my son.
I suppose what goes up must come down and the same for my mood but I have 12 days til the big hospital stay and I intend to make the most of it so how to shake it off!!? I just want to sleep. I miss the energetic super fit (slim) me I was before biopsies, chemo, steroids etc....Just yesterday I went through the photos of this last year to choose a load to collage and take into hospital, man I have had so much fun! When I looked at photos I thought ok good times will be back and I will be lovely again! Today the thought of the photos makes me feel a bit sad and nostalgic for a diminishing self......what a difference a day makes!
This too shall pass........
I suppose what goes up must come down and the same for my mood but I have 12 days til the big hospital stay and I intend to make the most of it so how to shake it off!!? I just want to sleep. I miss the energetic super fit (slim) me I was before biopsies, chemo, steroids etc....Just yesterday I went through the photos of this last year to choose a load to collage and take into hospital, man I have had so much fun! When I looked at photos I thought ok good times will be back and I will be lovely again! Today the thought of the photos makes me feel a bit sad and nostalgic for a diminishing self......what a difference a day makes!
This too shall pass........
Wednesday 22 June 2011
Life can be so nice
It is pouring with rain! It was midsummer yesterday! Do you know what though I don't care that it looks like winter out there.....Why don't I care because I feel great, I feel normal! And each day of feeling ok is a gift to me and pretty much nothing else matters! This is doing wonders for my relationships! Particularly with my beloved, small stuff? - get over it! Even past dramas which I usually cling on to for dear life are beginning to stay where they belong, in the past! Because dammit today is MINE and no one and nothing is going to take it away from me!
Overall I feel that I am coping better emotionally with this lot of chemo in comparison to the ABVD. The Drs told me that this regime (ESHAP) was more intense and yes probably physically I feel pretty battered for 7-10 days. I feel totally exhausted, can sleep up to 18 hours a day, appetite goes very strange, I get dreadful constipation and subsequent pain and bloat. Feeling like that day after day makes me grumpy because I get bored and frustrated, but what gets me through is accepting it, and knowing it will pass and will feel not just ok again but bloody great!! I guess with the ABVD I only had a few days of feeling 100% and then I was back in again cos it was 2 week cycles, plus I was trying to work, and I was the other side of the world, there was no organised support in NZ, and I did not have any faith in the coordination of my care (another story) and there was no end in sight because the plan changed frequently, I had no plan for what I would like to do once I was better, and I was angry too I had gone through a real crisis of faith - how can this happen? I am so positive and fit and young etc....I resented the illness for as I saw it robbing me of my youth....by the end of 6 months I was literally on the floor and at that point asked my GP for anti depressants.
This time.......I am home!! YAY! So am lucky enough to be able to call on any number of people friends and family to accompany me to appointments, rub my feet, generally entertain me! I am not working at all until I am better which is huge weight off my shoulders,I had my hair chopped once it started to thin sounds obvious but last time it thinned and thinned until I shaved it, I live right by the sea which is sooooooo good for me, I started anti depressants as soon as I suspected a relapse, I have 100% faith in my amazing team at the hospital so I can relax and just be a patient, I have a clear plan of care, oh yeah I have a picc line! Picc line is frieendddd! My relationships with my beloved and my son are in a really good place, the recent yoga study and practice I have done has helped me keep perspective, I accept what is happening for what it is and aim to walk in the experience and learn form it rather than resent and reject it, and I have a growing list of stuff to do when I get better!
So, today I have a scan, then counselling, then massage :)
Next wednesday 'they' will discuss me at the MDT meeting and I see them next Thursday for plan which will probably be 6th July hospital admission BEAM chemo then stem cell transplant then recover then home ....hurrah!
Fingers crossed then for a clean shiney scan!
Overall I feel that I am coping better emotionally with this lot of chemo in comparison to the ABVD. The Drs told me that this regime (ESHAP) was more intense and yes probably physically I feel pretty battered for 7-10 days. I feel totally exhausted, can sleep up to 18 hours a day, appetite goes very strange, I get dreadful constipation and subsequent pain and bloat. Feeling like that day after day makes me grumpy because I get bored and frustrated, but what gets me through is accepting it, and knowing it will pass and will feel not just ok again but bloody great!! I guess with the ABVD I only had a few days of feeling 100% and then I was back in again cos it was 2 week cycles, plus I was trying to work, and I was the other side of the world, there was no organised support in NZ, and I did not have any faith in the coordination of my care (another story) and there was no end in sight because the plan changed frequently, I had no plan for what I would like to do once I was better, and I was angry too I had gone through a real crisis of faith - how can this happen? I am so positive and fit and young etc....I resented the illness for as I saw it robbing me of my youth....by the end of 6 months I was literally on the floor and at that point asked my GP for anti depressants.
This time.......I am home!! YAY! So am lucky enough to be able to call on any number of people friends and family to accompany me to appointments, rub my feet, generally entertain me! I am not working at all until I am better which is huge weight off my shoulders,I had my hair chopped once it started to thin sounds obvious but last time it thinned and thinned until I shaved it, I live right by the sea which is sooooooo good for me, I started anti depressants as soon as I suspected a relapse, I have 100% faith in my amazing team at the hospital so I can relax and just be a patient, I have a clear plan of care, oh yeah I have a picc line! Picc line is frieendddd! My relationships with my beloved and my son are in a really good place, the recent yoga study and practice I have done has helped me keep perspective, I accept what is happening for what it is and aim to walk in the experience and learn form it rather than resent and reject it, and I have a growing list of stuff to do when I get better!
So, today I have a scan, then counselling, then massage :)
Next wednesday 'they' will discuss me at the MDT meeting and I see them next Thursday for plan which will probably be 6th July hospital admission BEAM chemo then stem cell transplant then recover then home ....hurrah!
Fingers crossed then for a clean shiney scan!
Tuesday 21 June 2011
Harvest Day Update!
Ok so Monday 20th June was Harvest Day........well the staff on day case have been eyeing up my veins for weeks and were having some discussion regards whether my veins were sufficient or I would need groin access...haha the male matron looked at my arms and said hmmmm you may have to shave your minge! brilliant! another reason to be home! only in the UK...
Anyway the lovely haematology nurse got a cannula in my weedy vein in right cubical fossa for the return and then popped a solid larger guage metal cannula in the left to extract the blood ( I was super brave btw, well that and the fact that it didn't hurt as much as I anticipated) The blood test in the morning to see if I had sufficient stem cells in circulation needed a value of 20 to continue........mine was 131 (oh yeah) so the 10 days of injecting myself in the belly had worked! Had to sit still (chore) for a whole 306 minutes while my entire circulation went out and back in 3 times!
Got some side effects from the anticoagulant, it depletes your calcium and I felt very odd, quivery, starting from my face and moving right through body - yuk. I was given a glass of milk but that didn't help so I had calcium infusion and then a magnesium infusion also. Have to say I didn't feel normal til it was all over but was manageable. I called the unit when I got home and the result was that I had enough stem cells for 4 transplants!! check me out!
I have a CT scan tomorrow (fingers crossed it's gone!) and then 2 weeks off! Then.........4 weeks in hospital for chemo, transplant and recover! Happy Days :)
Anyway the lovely haematology nurse got a cannula in my weedy vein in right cubical fossa for the return and then popped a solid larger guage metal cannula in the left to extract the blood ( I was super brave btw, well that and the fact that it didn't hurt as much as I anticipated) The blood test in the morning to see if I had sufficient stem cells in circulation needed a value of 20 to continue........mine was 131 (oh yeah) so the 10 days of injecting myself in the belly had worked! Had to sit still (chore) for a whole 306 minutes while my entire circulation went out and back in 3 times!
Got some side effects from the anticoagulant, it depletes your calcium and I felt very odd, quivery, starting from my face and moving right through body - yuk. I was given a glass of milk but that didn't help so I had calcium infusion and then a magnesium infusion also. Have to say I didn't feel normal til it was all over but was manageable. I called the unit when I got home and the result was that I had enough stem cells for 4 transplants!! check me out!
I have a CT scan tomorrow (fingers crossed it's gone!) and then 2 weeks off! Then.........4 weeks in hospital for chemo, transplant and recover! Happy Days :)
Thursday 16 June 2011
Yay!
Yes! Finally, well 5 whole days post chemo I feel completely normal! I love feeling well it rocks!! Yesterday evening went out to my friend's for dinner, four school mates together being bloody stupid, childish, serious, grown up, happy, sad, nostalgic, optimistic, counselling, lecturing, confessing, laughing, crying .........all in 3 hours! Marvellous! i love my friends soooo much and always feel energised after time with them.
Then today we arranged to meet at 9 (I was singled out last night and in a early morning text not to dare be late!) - I was there at 9 sharp actually and shortly after when all the girls arrived we were pretty much racing out to sea in a rib to check out the River Exe Cafe, genius.
This arvo I went and saw my little sister and her baby girl we had a lovely afternoon gassing, sitting in a traffic jam to Totnes (!!!) and drinking hot chocolate, got some proper smiles from my niece (she's not only advanced but clearly loves me).
No pills today!!
Just about to do GSCF injection... no bone pain which is worrying me....
Bloods tomorrow - fingers crossed all good
Now watching apprentice :)
Might dye hair tomorrow?
Ahhh what a great day
x
Then today we arranged to meet at 9 (I was singled out last night and in a early morning text not to dare be late!) - I was there at 9 sharp actually and shortly after when all the girls arrived we were pretty much racing out to sea in a rib to check out the River Exe Cafe, genius.
This arvo I went and saw my little sister and her baby girl we had a lovely afternoon gassing, sitting in a traffic jam to Totnes (!!!) and drinking hot chocolate, got some proper smiles from my niece (she's not only advanced but clearly loves me).
No pills today!!
Just about to do GSCF injection... no bone pain which is worrying me....
Bloods tomorrow - fingers crossed all good
Now watching apprentice :)
Might dye hair tomorrow?
Ahhh what a great day
x
Wednesday 15 June 2011
What? Why?
Ok so in the last 24 hours as a virgin blogger I have discovered and considered several things:
Laters x
- A lovely American couple already had the genius title of love, life and lymphoma...but I can't actually work out how to change it at the mo, sorry guys.
- After googling 'chemo chic' to investigate my business idea of central line cover wear and cool headwear etc I found the most amazing, witty and informative blog on cancer ever.The realisation that mine will never be as entertaining or simply just as good nearly halted my blog career right then and there!
- My blog doesn't come up on a google search so will have to give URL to interested people
- Which led me to consider, who is interested and why am I doing this??? (and it's not just to humiliate my 17 year old son)
- I think this process will be cathartic
- I like writing
- I am spending a ridiculous amount of time indoors, shortly to be more
- There are people all over the world that care about me and this is an easy way to update those who are interested...
- Finally and I think most importantly, at every stage of this lymphoma experience I have been seeking other peoples experience online to see how on earth they got through it, what was their story? How did it affect them physically, mentally, emotionally? What were the treatments and side effects like on a day to day basis? I wanted to read things like day 1 ESHAP was like this......etc Not what to expect from a leaflet but how it felt. So if my day to day experiences of lymphoma, chemo, stem cell transplant etc can help eliminate the fear of the unknown for someone then that's cool.
- Tea
- Coffee (even Costa's flat whites)
- lemongrass and ginger cordial (dammit)
- wine (outrage!)
- pretty much most sensible food
- Kentucky (haven't gone there yet but am picturing some fillet, zinger, minger, dinger burger fat bastard combo? does that exist?)
- Dr Oetker pizza (have been there several times)
- Croissants! (unacceptable!)
- Ginger Nut biscuits (for the nausea you seeeee)
Laters x
Tuesday 14 June 2011
4 years ago....
So...4 years ago just about to the day on the other side of the world I finished 6 months ABVD chemo and my ace choc lab Busta became a dad, happy days! 3 weeks of radiotherapy to make sure and back to work as a midwife at Whangarei Hospital, goodbye cancer!! 2011 - I have been back in the UK a year, Busta's gone, the pups Molly and Dudley stayed in NZ, Cancer is back - the cheek! And thus starts my blog..love, life and lymphoma......
I am now the proud owner of a PICC line which is actually a godsend just doesn’t look very sexy! Once that was in and healed I started chemo 9th May Mon to Friday, including a continuous bag to wear at home(def not sexy but found a cute little bag to wear over my shoulder as they had made a hideous thing out of tubi grip) different chemo regime to last time this is prelude to stem cell transplant. Going in and out everyday was a chore but it wasn’t toooooo bad. Being in there for hours is kind of like a really boring flight to nowhere when you get all agitated and over it and cant sleep or do anything and feel a bit rubbish on top of that! They scared the pants off me b4 treatment not with my prognosis (fair to middling basically) but by telling me I may put on 7kgs in a week, 7kgs OMG! I had to be weighed everyday and I made the nurse hold my home chemo bag in case it added more grams, anyway thankfully I pulled through and only put on 2kg which is now wee’d out, thank god. At least with my sexy picc line theres no more cannulation for me – hurrah!!
Had the last weekend of my 5 month yoga course at the end of that chemo week I was all ready to embrace it but bailed and got picked up a few hours later! Basically, couldnt hold a conversation, couldnt eat, couldnt listen to theory, couldnt actually do any yoga so realized was probably better off at home! Still it was good to see all my fellow yoga peeps, it has been really good and seriously once I have kicked cancer’s butt again I am sooo going to an ashram in India for a bit, its on!
Ha check this out, I asked my consultant for a physio referral as I had seen leaflets around for benefits of exercise and STC, ha they nearly bit my hand off! Apparently I am the first person to enquire about it and they are really excited to work with me when I am an inpatient. I will have a static bike, weights and a wii fit in my isolation room, how cool is that ?? I am all in for the free personal training! Shallow? Moi? As if…
So after that weekend of feeling like actual death I woke up last Monday with ZINGGGGG!!! I felt brilliant all week, realized that I hadn’t been malingering over the last week at all! Also realized how ill and tired I was pre treatment in the light of now feeling back to normal!! So when I went for bloods and check up that week I was massively grumpy to find out my white cells were in my boots and was advised not to socialize or even go to the shops in case I catch something and basically die! My consultant seems to think I am in denial as I told him I was clearly cured and probably don’t need any more treatment, to which he replied here’s some prophylactic anti bugs and come in Monday for a magnesium infusion, how rude!
So Monday I had the infusion, more bloods which showed nearly no white cells, excellent! Now I have to stab me self in the belly every day with stuff to stimulate white cell growth in bone marrow, good times!! Lucky I am bloody hard as nails really!
Second lot ESHAP started June 6th, same again except I was mentally prepared, taking longer this time to feel back to 'normal'. Hair falling out so have had it chopped (ended up having a lovely sunday being totally pampered...it started as a haircut and I came out manicured, pedicured, fed and feeling very special). I have also had a fab trip to London where I laughed more than in ages and met some very wonderful people.
So apart from the inevitable ups and downs, things are good, I have been looked after well by family and friends. I am in danger of overusing ‘but I’ve got cancer’ to get anything from tea and chocolate to gifts and holidays…… and to get out of housework, shopping etc Oh well maybe if I go quiet for a bit I can pull it out later for something I really want!?? I know am such a bitch!
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