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!
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.
· 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.
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!
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.
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