Wednesday 7 September 2011

Eradicating Bob is Scary

On Monday I met with the Chemo nurses who took me through all the reactions you can have to chemo – there are a lot of reactions out there, but they are mainly only potential –the same person on the same chemo regime can have different reactions.  Basically you can say I am poisoning my body to kill all those unhealthy cells along with related possible reactions, but it also kills the healthy cells so I can’t fight infections.  Other things I can look forward to is a change of taste buds – maybe cravings and a liking to more spicy food (much to my son’s delight as he loves spicy food), a loss of appetite and putting on a stone of weight due to the steroids and muscle build-up, constipation/diarrheal, blood clots, rapid heartbeats, tingling hands and feet, mouth ulcers, and also for me because of my diabetes raised sugars and hypos.  The only one that seems certain is that I will lose almost all of my hair within 14 days after my first chemo session.  It’s the only time since diagnosis that I had tears in my eyes – it didn’t think it would happen that fast – I thought it would be a gradual process but no it is more brutal than that – oh and that also means upstairs and downstairs! Other things I hadn’t considered is that I may get a runny nose as all the hairs go from their too! The only good thing about losing my hair is that! I won’t have to shave my legs and under my arms for a while, and have a free Brazilian!   



So to my shopping list;

- Sun cream - no less than factor 3
- Hat & long-sleeved shirts etc to cover up out of the  sun (just as well it seems the summer is over!). 
- Tissues for my running nose
- Digital thermometer for taking my temperature – what with the expected hot flushes and my menopause could come, and hypo’s because of the steroids I may not know if I have a fever or not and will need to check.
-    Nail varnish -  base coat and top coat varnish – nail varnish apparently protects the nails from the chemo. 
Wig – appointment made with wig maker – a trip into Ipswich and consultation.  I was told I would get a free wig – but its more like an insurance policy whereby I need to pay £60 first and NHS picks up the rest.  I suppose considering the wigs cost about £200 each this is not such a bad deal.
- False eyelashes just in case I lose my eyelashes
- Eyebrow pencil – in case I lose my eyebrows
 -   Head Scarves  – my wig consultation will also go through this and show me how to tie them – so that is good and a trip out of the house
- Larger warmer clothes as I could put on as much as a stone in weight from the steroids and winter is coming!
- More Plastic  gloves for dealing with all those icky jobs – like mould in the microwave – eugh! No infections for me.
- Lemons and pineapple – good for mouth problems
- Oily fish – good for blood count and diet
- 2 litre bottle of water – so I know how much liquid I am using – need to keep hydrated need to dring a least 2 litres a day
- Chilli to spice up my food!
- Fruit for smoothies - easiest way for me to get those vitamins into you - did you know you should take mult-vitamins or vitamin C while having chemo as can react on the blood count results!
 Today I actually had the chemo and boy was I nervous – although really there was nothing to be nervous of as everything can happen once you get home!  However, apparently I have moving veins so that was the first problem – warming up my hand and arm to  bring the veins, two goes at finding one and successful the third time.  I have been advised that I may need/want a PICC – which is like a catheter and involves fitting a small tube up my arm and attachment which I will need to have permanently on over the 12 weeks of treatment so finding veins won’t be a problem.  I am considering it – it will also involve a weekly trip to the hospital to have It cleaned out.  I may wait until my next treatment to decide but I will let you know – I can see problems in what to wear in the day with this thing all the time with me!
The afternoon was ok.  The staff were extremely helpful and friendly, reassuring that they are always there night and day and that if I feel strange in any way at all that I should call them and get myself checked out.  Urged not to let things go but keep on top of anything health related.  I had some strange sensations such as when the steroid went through it was like sitting on small needles for a little while (a common reaction) a “Hedgehog” the nurse said, a brain freeze for a couple of seconds,  and  a strange sensation in my mouth and head – but it was all just for a couple of minutes.  I  felt weary afterwards but not sure if this was more for setting down on a comfortable chair and a pillow for a couple of hours.  Although now later at home the tiredness is coming  over me like waves.   Not sure how I am going to force my son to tidy up every night – he’s tired enough from doing maths on his last lesson on the first day of school.   Says he going to bed at 8pm – but now is 8:15 and I haven’t dinner out yet – note to self prepare dinner night before chemo next time!
One of the things offered to me today was a Feeling Better workshop – which will tell you things like alternative therapies which are available, make up and beauty tips etc – apparently the goody bag is absolutely fantastic – so looking forward to that later in September.  Its not all bad news!  One bit of advice given me was why not shave your whole hair off and then just concentrated on your face – but I am not sure about this – I know its just an ego thing and I know my hair will grow back – but your hair is so much like your identity in a way – perhaps I will feel differently when the first clump comes out.
 Things taken home with me today from hospital and doctors:-
 ·  New blood count monitor as mine is broken – needles and strips
·   Steroids to be taken for the next two days – four at a time
·   Anti-sickness pills to be taken three times a day for five days
·   Imodium – just in case
·   Extra depression pills
·   Insulin
·   Strong mouthwash
·   Promise of date for Feeling better workshop
·   Referral to Specialist Diabetic nurse to speak about diet, carbohydrate counting (have never done this) and keatones – my doctor surgery diabetic nurse doesn’t feel qualified to advise me on this so need a specialist up at the hospital.
 I  know I want to go back to work this month but I can see them getting fed up with me and all the hospital appointments I am going to need!  I spoke more in detail with the nurse.  Typically the reactions come within four days.  So if I have my chemo on Wednesday I could be feeling much better on the Monday.  So take three days off on chemo weeks.  Days 10-14 is when your bone marrow is at its weakest and when you find it incredibly difficult to fight off infections – this is the time you need to try and avoid people with colds, coughs etc and may feel at your lowest ebb – this is the time that I could suddenly say I am not feeling well enough to come to work and if anyone at work has colds and coughs should stay away.  I think I will look more into working at home when this happens if this is possible. They may let me have a work laptop but need to investigate this because not normal policy for secretaries where I work.  We are a little old fashioned!  Well this is what I need to discuss with them next week.  I think I will write out a little schedule for them.  Mind you if all hinges when I have my chemo session and I can’t have it due to low blood count then that goes out of the window!!!!
The most important thing for me to do is to regularly check my sugar levels as the steroids can cause havoc with them, and adjust accordingly if I can.  Constant highs and lows are not good and constant high’s can cause problems with the kidneys.  I am so much more aware now of my diabetes – which Is also a good thing and in the past I have not been so diligent.  Now is time to take the “bull my horns” and get on top of it!
 
Its now the first morning after chemo – went to bed at 10pm sleep by 11pm and up at 5am!!! Just can’t get back to sleep. My throat feels a little sore, I am a little queasy and drinking water – that’s what woke me up. The more I drink – the more I want to go to toilet! It is important to flush the stuff out of me, and stay hydrated. At the moment is coming out a funny red orange – the same colour as went in me. Oh well I’ve had blue so not so strange!

How do I feel?  Well it’s the next day after the chemo and I woke up this morning at 5am (virtually unheard for me) and couldn’t get back to sleep! Of the many thoughts whirring round my head, I felt a little bit guilty of myself being totally wrapped up in myself!  My friends and family out there are having their own health problems, my dad blacked out last week, my sister has an extremely painful frozen shoulder and if physio can’t sort it out may need an op, my cousin fell down some stairs and hurt herself, my uncles grandson is in hospital with bowel cancer, a couple of friends have to also have constant blood tests for their blood count, one due to Leukaemia and the other from a blotched up operation, others who have children suffering from chronic conditions and so on.  When I receive a call I try to find out what is having in their lives as well but it’s not as easy as you think all the time as people are sometimes reluctant to let me know.  I want to be able to sometimes know other people’s problems because sometimes its gives me a jolt and I can say that mine are such a problem after all.  I want to say thank you to my facebook friends as well - its a privalage to keep in touch with you all!
 There is no denying that I am fearful of the process for eradicating Bob but it is important too that I do not live in a “bubble” and try to carry on as much as possible living my life as normal as possible both for my sake, and my son’s, and everyone around me.







 The only one that seems certain is that I will lose almost all of my hair 14 days after my first chemo.  It’s the only time since diagnose that I had tears in my eyes – it didn’t think it would happen that fast – I thought it would be a gradual process but no it is more brutal than that – oh and that also means upstairs and downstairs! Other things I hadn’t considered is that I may get a runny nose as all the hairs go from their too! The only good thing about losing my hair is that! I won’t have to shave my legs and under my arms for a while, and have a free Brazilian!   







Things taken home with me today from hospital and doctors:-



·         New blood count monitor as mine is broken – needles and strips

·         Steroids to be taken for the next two days – four at a time

·         Anti-sickness pills to be taken three times a day for five days

·         Imodium – just in case

·         Extra depression pills

·         Insulin

·         Strong mouthwash

·         Promise of date for Feeling better workshop

·         Referral to Specialist Diabetic nurse to speak about diet, carbohydrate counting (have never done this) and keatones – my doctor surgery diabetic nurse doesn’t feel qualified to advise me on this so need a specialist up at the hospital.



I  know I want to go back to work this month but I can see them getting fed up with me and all the hospital appointments I am going to need!  I spoke more in detail with the nurse.  Typically the reactions come within four days.  So if I have my chemo on Wednesday I could be feeling much better on the Monday.  So take three days off on chemo weeks.  Days 10-14 is when your bone marrow is at its weakest and when you find it incredibly difficult to fight off infections – this is the time you need to try and avoid people with colds, coughs etc and may feel at your lowest ebb – this is the time that I could suddenly say I am not feeling well enough to come to work and if anyone at work has colds and coughs should stay away.  I think I will look more into working at home when this happens if this is possible. They may let me have a work laptop but need to investigate this because not normal policy for secretaries where I work.  We are a little old fashioned!  Well this is what I need to discuss with them next week.  I think I will write out a little schedule for them.  Mind you if all hinges when I have my chemo session and I can’t have it due to low blood count then that goes out of the window!!!!



The most important thing for me to do is to regularly check my sugar levels as the steroids can cause havoc with them, and adjust accordingly if I can.  Constant highs and lows are not good and constant high’s can cause problems with the kidneys.  I am so much more aware now of my diabetes – which Is also a good thing and in the past I have not been so diligent.  Now is time to take the “bull my horns” and get on top of it!





How do I feel?  Well it’s the next day after the chemo and I woke up this morning at 5am (virtually unheard for me) and couldn’t get back to sleep! Of the many thoughts whirring round my head, I felt a little bit guilty of myself being totally wrapped up in myself!  My friends and family out there are having their own health problems, my dad blacked out last week, my sister has an extremely painful frozen shoulder and if physio can’t sort it out may need an op, my cousin fell down some stairs and hurt herself, my uncles grandson is in hospital with bowel cancer, a couple of friends have to also have constant blood tests for their blood count, one due to Leukaemia and the other from a blotched up operation, others who have children suffering from chronic conditions and so on.  When I receive a call I try to find out what is having in their lives as well but it’s not as easy as you think all the time as people are sometimes reluctant to let me know.  I want to be able to sometimes know other people’s problems because sometimes its gives me a jolt and I can say that mine are such a problem after all. 



There is no denying that I am fearful of the process for eradicating Bob but it is important too that I do not live in a “bubble” and try to carry on as much as possible living my life as normal as possible both for my sake, and my son’s, and everyone around me.






Saturday 3 September 2011

Sponging of Bob

The title of this blog is down to my dad – and why – its because I have started to use my sponge boob given to me at the hospital when I had the mascetomy.  The first time I wore it, I asked my son if it looked even and spent the whole day adjusting it trying to make it look as droopy as my other boob – my son said it was just not right for him to be looking at his mother’s boobs all the time!  I can’t wear a special bra yet or be measured for one because my scar hasn’t healed and it would be most uncomfortable – McMillian have sent me some great brochures to look at and I even may be eligible for a grant to have some free ones.  Never knew there were so many kind of false boobs you can get – different textures, weights, sizes, colours and for uses for different things such as swimming – and all look very flattering and pretty.  Breast Care also have models who have had breast cancer and who do fashion shows for them– so there may be some retail therapy to look forward to in the future!  I have been advised in the meantime to buy some crop tops as they would be just right to fit the sponge into.  I would love to go and get some but money is so tight at the moment after sorting out vet bills (although cousin paying half) – the fleas and booster jab, buying school uniform including casual trainers, school shoes, trainers and football boots and some warmer clothes for my son – there is just not enough to go around for me at the moment – its an expensive month and all this considering I am not sure at the moment how much I will be earning September – I think I need to get a top up loan to get me through so I am no longer living on my overdraft, but I don’t think the banks will lend to me at the moment! 

On a much more positive note the sponge boob has made me much more aware of my posture and I am now no longer walking around like a hunchback, it has also given me more confidence when going out especially on social occasions – although I am aware I look a little wonky now and again!
Going back to work has been weighing on my mind and I’m not sure how it is going to work – I am getting bored at home pulling out my hair with daytime TV and getting addicted to Facebook games – let alone my sleep patterns all over the place  - I need to seriously think about getting back into a routine and my son going back to school next week should help with that.  I am avoiding going out and about to many places I used to go to because I know I will be tempted to spend money on things that are not really a necessity. I have an overdraft which I am  living on and don’t seem to be able to catch up, its not as if I haven’t been given any cash injections some family, benefits etc, but this month I really think  is going to be difficult – the bills mount up and I am just about paying them, food is getting more expensive and my son is not good at not asking for things from me that cost money even down to a daily chocolate bar (oh and I do resist strongly but feel a little guilty when I do ) – on top of that my only vice smoking seems to be the most sensible thing to give up  to save money – but it is sometimes the only thing that  seems to put my stress levels down – trying “rollies” but its not going well!.  I don’t manage my money very well and I don’t know why – its not as if I buy expensive things – I shop at charity shops for almost everything  I need, but with the school holidays just gone by and being home everyday has been expensive in itself.  I know a lot of people are suffering at the moment with the economic downturn so its not just me and because of the cancer is something happening to people all over the world and especially to single mothers with no second income.  I am trying my best and my next step is to try and apply for social housing along with the hundreds of other people who are – maybe my cancer and history of domestic abuse can be turned to a positive thing here!

As I have found on my journey nothing is straight forward.  My chemo starts on 7th September and I have an appointment with the nurses to go through side effects on the 5th of September.  I was hoping to go back to work on that date – the day when my son goes back to school – it just seemed such a good date at the time, but now that is very much in the air.  My work have been great but because I can’t clarify if I will feel well enough to work after a chemo session they are not sure how their sickness policies fit in – I do feel sorry for them because I only starting working with them in December and then I have been off sick from May – six months trying to get myself established and to get to know the job – three months now off sick recovering from ops and not knowing what is going to happen from next week.  My start date back to work is the 15th of September and I will probably go back part-time or in a staged way – but if my salary goes down then I will be in more trouble.  The consultant said it is very much in my hands if I work through the chemo or not but it does depend on what the side effects will be for me – it is different for everyone – the only certainty is I will lose my hair.  Many people do work through the chemo, others part-time and others are too ill and can’t work at all. The lack of being in a secure position and not being able to plan much for the immediate future is the most frustrating of all

Talking about hair, I have been looking at hairstyles thinking what kind of wig I would like -  I could go blond long haired or as my son wants to have a Mohican!  My dad offered me my mum’s wig (she died of Ovarian cancer some 6 years ago) but I didn’t fancy going grey unless I could dye it!!  As you may have read in another blog I have had my hair cut short and in a spiky style so as to prepare for the chemo.  Being spiky means I will be able to brush my hair over any bald spots without it showing for a while.  My cousin heard about a women who has gone through the same thing as me but  loved her wig so much – she has stayed bald and brought all kinds of wigs which she wears for different occasions – a meeting is going to be set up for me to meet her and I am looking forward to it!

I first wrote this blog at the end of August, but seem to have had a bit of a “blogger block” and its been a couple of frustrating weeks, son on school holidays getting bored and causing mayhem at home, lazing around and being shouted at to walk the dog, help around the house etc – I have done a lot of shouting – perhaps my anger has turned into a different direction which is not good! , but despite everything and although I have worries, I am staying pretty positive and in a strange way am quite content – but I know I am a bit like an ostrich hiding its head in the sand (which is a tendency with me) – if I don’t think about it too much it won’t touch me until it happens – what I can I do but go step by step. 

 I started menstruating today – the first time in months but another more serious side effect is that the chemo is likely to bring on my menopause (hot flushes to look forward too as well ) but I do feel thinner  - the bloating seems to have gone, so perhaps the doctor was right “body-shock” from the ops and stress making me feel as if I was pregnant!  It was, however, a big shock to find out how much weight I have put on since my first op and I am trying to address this -  I have managed to take the dog for a walk now and again, and trying to ensure I do have a walk every day as well as keeping on top of house work (although that is not quite as successful).  Arm exercises are still tricky and I have been referred to physio – still not doing them right and I can’t get my arm behind my back properly.  I think there is also an exercise class at the hospital for those with cancer so I think I will look into that soon as well.

So its all still a waiting game,  a pause on the rollercoaster of life .  I watched a programme about the life of Bill Hicks and his stand-up routine about life and rollercoasters.  It resonated for so many reasons.  For many years now I feel that my rollercoaster of life has had too many twists and turns, ups and downs and that it should go a bit slower on a bit more of an even run – the constants in my life are my family and friends and  it is those people who are my lifesavers.  My Aunt did make me laugh – she sent me a cartoon of a ladder and the steps of my cancer journey and all the people round me who cares – its these little kindness and knowing I am being thought of  that makes the world seem a brighter place.  My Aunt’s best friend also has just gone back to work after a year recovering from breast cancer, a double mascetomy, more ops, chemo and radio-therapy.  Her hair has grown back and she has just come back from a holiday.  She is in her 60’s so if she can do it, I definitely can.  I also heard about an old school friend in China who is now just going for regular check-ups.  I would like to also send my best wishes to my friend I met in hospital who  has just gone through an op for reconstruction, after having one five years ago, when breast cancer was found again and now recovering from her op at home.  Keep your chin up! There is light at the end of tunnel (although someone once said to me make sure the light isn’t a train about to run you over!).

I went to a great free music festival last Saturday,  joined a choir and will be singing Beetle and Abba songs – It was  uplifting for me as I like to sing (but don’t do it well!) and it should help me with my breathing – heard that this can be one of the side effects of chemo feeling breathless . Being taken out for a quiz night at a local pub was also a highlight and being on the winning team even better – I also attended a community meeting about problems round the Hythe area run by Source (a Christian group who I want to join and support more than I am doing at the moment).  I have made a decision in that I don’t want to wait for the world to come to me anymore and that I should be going out and meet the world on my own terms.   There are things I need to try and do now to put in place before I have the lack of energy to do it later with the chemo treatment. 

Something to look forward to is  Christmas -  my last chemo is scheduled for 21st December and my dad would like us to be with him -  but it’s too early for me to even think about Christmas – I have no idea where I will be within myself both emotionally and health wise then.  It is still day by day, step by step and finding something positive in everything and every day as I go along this journey.  You can choose to let life get you down, or you can go with the flow and be as happy as you can, I have chosen  to do the latter!