probably the last post as i don't want to get boring (i think you already are luv! says Taigh reading this over my shoulder and not missing an opportunity for an insult-thanks for that my loving teenager!)
Anyway i'm still in recovery mode which is frustrating at times, especially when i have a really good day with minimal pain which makes me think - yay its getting better and i have a little dance around the kitchen. Then the pain comes back (maybe its the dancing?) and i'm stumbling around the house trying to straighten my body up and counting the hours for the next pain killer slot. I suppose its going to take some time but the energy needed to stay positive sometimes eludes me. Im comforted tho by chats with my friend Peter who went through heart transplant surgery with his twin brother recently and is now comparing scars with me and trying to remember rude jokes about drambuie (my other painkiller) to cheer me up! Everybody i talk to tells me how brave i've been but i honestly don't think i could have done it without the total love, support and positive messages from everyone i know. My 'district nurse' Liz has been an unfaltering rock and i am constantly amazed by her unconditional love and limitless humour which has helped me forget the pain and dragged me out of what could have turned into a black hole of depression.
- the copy of a letter to my GP I received as a result of the post operative clinic visit cheered me today. They write in such a charming way that it is easier to relay word for word-
I was very pleased to review Mrs Romanczuk in the clinic today. She is making an excellent recovery although she still needs to recover strength and wellbeing. Unfortunately Mr Strauss who performed the operation is on annual leave and I am sure that he would be delighted to know that the patient is recovering well. Perfectly reasonably Mrs Romanczuk asked me about the risk of recurrence. She does have a low grade liposarcoma and therefore there is always the low risk of recurrence but hopefully of the order of 10-15% Obviously we will watch her carefully in this clinic for a minimum of ten years. I hope that the patient is reassured.
I am!
Saturday 18 December 2010
Friday 10 December 2010
outpatient news
have had my first appointment at Marsden as an outpatient. It was a hell of an effort to get there in the snow but we found some good taxis prepared to weave their way to Fulham (for a price) in the sliding icy roads. It made me get dressed and behave almost like a normal person though and i haven't looked back- goodbye pj's in the day! We were told that Dirk had gone off to Australia on holiday and so we were seen by the head of clinic Mr Thomas as well as visits from the specialist nurses and one by one the other doctors who were involved in the operation and post operative care- it really is a special place.
The news is good- they assured us they got all of the tumour out even though there were added complications such as it being attached to my diaphram as well as everywhere else which made the operation take considerably longer. Because an operation is the only means of getting rid of this type of cancer they explained the chances of it coming back where based on the success of removing every bit and they had done this successfully. Having said that i asked what would be done if it did come back and Mr Thomas stated "well, then we'll have another go at it!" .
He explained further that the investigation carried out on the tumour meant it was a low grade tumour but that had they not caught it at this time then it would have turned into a higher grade- ffffphew!!! He said they were very pleased with my recovery to date - as i sat there skinny and crouched, complaining about being very weak and not eating and feeling like i was going to keel over- his advice to do anything it took to speed up a sense of normality by doing a little more each day and even using alcohol if thats what i needed!!?? I questioned the need to take the antibiotics each day for the rest of my life and Mr Thomas explained that this was a controversial subject- he explained that some countries didn't feel the need to play it this way and preferred to treat an infection crisis as and if it happened- then he asked me " are you around children very often?"- nough said!!!
The news is good- they assured us they got all of the tumour out even though there were added complications such as it being attached to my diaphram as well as everywhere else which made the operation take considerably longer. Because an operation is the only means of getting rid of this type of cancer they explained the chances of it coming back where based on the success of removing every bit and they had done this successfully. Having said that i asked what would be done if it did come back and Mr Thomas stated "well, then we'll have another go at it!" .
He explained further that the investigation carried out on the tumour meant it was a low grade tumour but that had they not caught it at this time then it would have turned into a higher grade- ffffphew!!! He said they were very pleased with my recovery to date - as i sat there skinny and crouched, complaining about being very weak and not eating and feeling like i was going to keel over- his advice to do anything it took to speed up a sense of normality by doing a little more each day and even using alcohol if thats what i needed!!?? I questioned the need to take the antibiotics each day for the rest of my life and Mr Thomas explained that this was a controversial subject- he explained that some countries didn't feel the need to play it this way and preferred to treat an infection crisis as and if it happened- then he asked me " are you around children very often?"- nough said!!!
Monday 6 December 2010
monday am
found some blog i'd written in a notebook at 5am while in hospital so thought i'd add it. no time to think- constant checks from different nurses to check the epidural still working (using frozen chemical spray, sprayed up and down my body, or in one instance an ice cube in a glove??!!), heart rate, bowel xrays, insulin, blood pressure, temperature- name date of birth (i suppose in case someone else snuck into my bed when they were not looking). My body, were i not so ill would be in remarkably good shape, scary though to see your arm and leg muscles diminish just when you need them to run away-slim but crouched over..shuffling. I've got holes all over me from needles and tubes, catheters and canulas that appear to be removed two each day at the moment- the doctors know i want rid of them and play into my game- if you eat a jelly and don't throw up we can take that one out- if you do a poo you might even be able go home-and no you cant take the stockings off! I was asked yesterday if one of the holes was a port!!?? had i missed something-and since learn that you can come and be plugged in to the Marsden for treatment- like a laptop upgrade.
I've got lifelong pills to fight infection, injections to un-coagulate my blood (which i have to self administer for two weeks at home-arg), pain killers, pills to stop painkillers making me sick, meds to stop painkillers giving me constipation and on and on. I am happy because they have taken out the tube which was going into my stomach via my nose and i haven't thrown up but i'm not really eating and haven't been to the loo and have been told the tube might have to go back in if things don't improve- i madly order lovely food each day from the menu and it stays on my table until its cleared away. The problem being that everything i put in my mouth tastes like cardboard- which i can chew and make into paper mache alright but then cant swallow. Felt a little panicked last night as a new patient was admitted next to me (not a patch on the previous asian lady whose tracheotomy voice box did indeed make her sound like Mr Bean calling out for co-codemol and ketchup) I eavesdrop avidly as new patient has been re-admitted after surgery for bowel cancer and there is now a blockage meaning she threw up her crumpet this morning and then regret listening as they manually re-insert the tube to her stomach as she convulses on the bed.
There are two other women in the ward with me now- one who is turning rapidly yellow and now orange and another opposite me who i spent time in intensive care with- her only interaction to suggest 'we need one of those Alison, don't we' as she mimicked smoking a cigarette when asked to cough after surgery (another ongoing challenge i find myself in) -not funny- i decided not to humour her and cant be bothered to make friends at this stage but just stare at her in case she does anything entertaining. Its worth the wait, she is morphed up to the hilt today, behaving like a headmistress let out for the day, laughing and joking with the staff, talking to herself and her machines and prancing around her bed getting tangled in the wires. 'i didn't mean to, i didn't mean to' she rambles before alerting staff that she had leant on a tube with her elbow - then finding something hilarious shouting 'oh no it was my finger har har!'- who am i to talk i'm probably writing this on my sheet. Haven't had any elephants or dolphins to report probably because ive had epidural drugs rather than morphine, in fact only one syringe of morphine which i was given to squirt in my mouth and which appeared to do nothing. The tramadol drugs i was initially taking gave me some weird experiences though and i felt like i spent whole days falling in and out of sleep only to look at the clock and see it had moved five minutes on each time.
I've got lifelong pills to fight infection, injections to un-coagulate my blood (which i have to self administer for two weeks at home-arg), pain killers, pills to stop painkillers making me sick, meds to stop painkillers giving me constipation and on and on. I am happy because they have taken out the tube which was going into my stomach via my nose and i haven't thrown up but i'm not really eating and haven't been to the loo and have been told the tube might have to go back in if things don't improve- i madly order lovely food each day from the menu and it stays on my table until its cleared away. The problem being that everything i put in my mouth tastes like cardboard- which i can chew and make into paper mache alright but then cant swallow. Felt a little panicked last night as a new patient was admitted next to me (not a patch on the previous asian lady whose tracheotomy voice box did indeed make her sound like Mr Bean calling out for co-codemol and ketchup) I eavesdrop avidly as new patient has been re-admitted after surgery for bowel cancer and there is now a blockage meaning she threw up her crumpet this morning and then regret listening as they manually re-insert the tube to her stomach as she convulses on the bed.
There are two other women in the ward with me now- one who is turning rapidly yellow and now orange and another opposite me who i spent time in intensive care with- her only interaction to suggest 'we need one of those Alison, don't we' as she mimicked smoking a cigarette when asked to cough after surgery (another ongoing challenge i find myself in) -not funny- i decided not to humour her and cant be bothered to make friends at this stage but just stare at her in case she does anything entertaining. Its worth the wait, she is morphed up to the hilt today, behaving like a headmistress let out for the day, laughing and joking with the staff, talking to herself and her machines and prancing around her bed getting tangled in the wires. 'i didn't mean to, i didn't mean to' she rambles before alerting staff that she had leant on a tube with her elbow - then finding something hilarious shouting 'oh no it was my finger har har!'- who am i to talk i'm probably writing this on my sheet. Haven't had any elephants or dolphins to report probably because ive had epidural drugs rather than morphine, in fact only one syringe of morphine which i was given to squirt in my mouth and which appeared to do nothing. The tramadol drugs i was initially taking gave me some weird experiences though and i felt like i spent whole days falling in and out of sleep only to look at the clock and see it had moved five minutes on each time.
Friday 3 December 2010
4 in the morning
im alive......and beginning to feel more so as of today- although pain stops me from sleeping too well-hence the time i am blogging. The last two weeks have to have been the worse and most bizarre of my entire life. Feel like ive called upon every emotion learnt over the years whilst having a kind of out of body experience that has enabled me to endure all that has gone on. I know im not the only individual to feel like ive stared death in the face, planned for and written a goodbye letter to my son and looked at the house for the last time but it is a solitary and lonely experience that no amount of love and support could effect and for that reason it has been life changing and levelling in ways i don't think i'll fully get until some time has passed.
Although i was happy to be discharged from the Marsden so early it has been a difficult time managing the pain, moving about the house and hiding from all you lovely people who want to check im ok. I just needed some time alone to deal with the trauma, roll about the floor with constipation (caused by the pain killers), get some strength and gain back my sense of taste so i could eat again. It was especially weird looking down at my body which still appears to be someone elses that has been transplanted to me below my neck while i wasn't looking. I've lost two and a half stone to date but as a prof at the clinic stated the other day 'yes but it wasn't all you was it my dear!" My clothes are my previous size of course so i look like one of the weight watchers photographs of before and after where you could fit another person in your jeans whilst wearing them-well almost!
Although i was happy to be discharged from the Marsden so early it has been a difficult time managing the pain, moving about the house and hiding from all you lovely people who want to check im ok. I just needed some time alone to deal with the trauma, roll about the floor with constipation (caused by the pain killers), get some strength and gain back my sense of taste so i could eat again. It was especially weird looking down at my body which still appears to be someone elses that has been transplanted to me below my neck while i wasn't looking. I've lost two and a half stone to date but as a prof at the clinic stated the other day 'yes but it wasn't all you was it my dear!" My clothes are my previous size of course so i look like one of the weight watchers photographs of before and after where you could fit another person in your jeans whilst wearing them-well almost!
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