Having told you all the downside the other day I have to report a different story today.
I was loitering in the foyer of Aylesbury Theatre yesterday, waiting to collect Poppy and Alfred after they had watched Peppa Pig with their two Grannies, when a very nice girl walked up to me and, after apologising profusely for being nosey, asked if I was going through Chemo.
She then explained that she did last year, finishing in October but is still having Herceptin through a PICC line in her chest. To those not in the know, having to have Herceptin is, in short, a bit of a bugger. It means your strain is more difficult to treat and the whole process is a lot longer. However, this girl was so bright, cheerful and positive that after she had left I felt much more positive too. In fact, I still do, nearly 36 hours later.
It is a strange thing this disease. It is like joining a club (oh dear, the repetition bell is ringing loudly in my head, so I apologise). I had never set eyes on this girl before but after a brief chat in a public place surrounded by hundreds of people, a bond is formed - we are in this together - and it did not seem at all inappropriate for her to give me a hug and a peck on the cheek as she wished me luck when we parted company.
I know that if I saw her again in the street we would both be eager to catch up on each other's progress as it is a battle we have in common.
I have no idea what her name is but I wish her every success with her treatment and would like to say a very big thank you xx.
Monday, 30 July 2012
Friday, 27 July 2012
Just a quick one
I have been reading through my own blogs in the last couple of days and have realised how often I repeat myself. I am so sorry. I am so sorry. Ha ha ha ha ha ha...
But I am, honest.
On a slightly less funny note - and I mean this.
My inspiration, my confidante, and most importantly, my friend, who dealt with what I am dealing with now, this time last year has had some horrendous news this week.
She has some 'spots' on her liver.
I am devastated for her. She is one of the world's beautiful people. She does not deserve this. Neither do her family, who are all wonderful and kind people too.
I am not an overly religious person. I have a healthy respect and belief in whoever controls our lives and destinies. However. Whoever or whatever you send a missive up to in times if need, I would ask you to spare a thought for her and her family as they once again face hell.
Thank you.
But I am, honest.
On a slightly less funny note - and I mean this.
My inspiration, my confidante, and most importantly, my friend, who dealt with what I am dealing with now, this time last year has had some horrendous news this week.
She has some 'spots' on her liver.
I am devastated for her. She is one of the world's beautiful people. She does not deserve this. Neither do her family, who are all wonderful and kind people too.
I am not an overly religious person. I have a healthy respect and belief in whoever controls our lives and destinies. However. Whoever or whatever you send a missive up to in times if need, I would ask you to spare a thought for her and her family as they once again face hell.
Thank you.
Tuesday, 24 July 2012
Silver linings
So I am back. Again. Thank goodness.
It has taken me this long to post another blog as I struggle a bit emotionally when I think about how ill I felt during the last bout of chemical hell. I felt so ill I couldn't even manage to say good night to the small people each evening. Bad enough that I couldn't go to tuck them in and read their stories, but I was so blown sideways that they couldn't even come in to see me.
On talking to the, as ever, wonderful breast care nurses it would appear I suffer quite badly from the toxicity that comes with the chemo. It is quite rare (oh lucky me) but it affects ALL my senses - any smell is unbearable, a person talking in the same room as me is too loud, no sitting or lying position is comfortable and so it goes on.
Another trip to hospital, this time to check my cell counts on Sunday evening, as I was still bed ridden five days after my chemo and developing a sore throat and sore glands.
Having berated the NHS in a previous post thanks to some slightly dodgy treatment I have to say that the treatment we, yes we, received this time was second to none. A very attentive doctor who knew why I was there, and had already spoken to Oxford's 24 hour oncology line to get up to speed. Very speedy attention from two nurses both of whom were kind, calm and brilliant at their jobs - one in particular who is so good at taking blood I did not feel a thing and it would appear she certainly took enough - at least 7 vials.
When I say we received amazing treatment, once it had been ascertained in the short term that I was NOT suffering from a life threateningly low level of white cells etc, the doctor was as concerned that Ian was ok as me, the patient. He repeatedly turned to Ian and asked "How are you?" or "Are you ok?" And when he came to give us the results of my blood tests he was all smiles, cheerful and even slapped Ian on the back as we were leaving!! A silver lining to having to spend a Sunday evening in A&E.
I am now on the countdown to the third and final dose of this blend of drugs, with three doses of a new drug to come after that. Once I have got over the side effects from this upcoming dose I really am on the countdown - the number of doses remaining no longer being higher than the number I have completed.
Having seen the oncologist this morning he has decided to modify the doses of two of the drugs I am to receive but leaving the horrid drug at full strength. This is out of necessity as it is THE drug of choice that is the most effective. However, reducing the other two may well lessen the side effects although he lacked conviction when saying this so fingers crossed.
Having been dreadfully negative at the beginning of this post - for which I apologise profusely - I am now feeling alot better having shared the horror. Therapeutic for me. Rubbish for you, the reader. Sorry. Revisiting the awfulness has made it have slightly less impact. Perhaps that is the other silver lining?
Thank you for bearing with me x
It has taken me this long to post another blog as I struggle a bit emotionally when I think about how ill I felt during the last bout of chemical hell. I felt so ill I couldn't even manage to say good night to the small people each evening. Bad enough that I couldn't go to tuck them in and read their stories, but I was so blown sideways that they couldn't even come in to see me.
On talking to the, as ever, wonderful breast care nurses it would appear I suffer quite badly from the toxicity that comes with the chemo. It is quite rare (oh lucky me) but it affects ALL my senses - any smell is unbearable, a person talking in the same room as me is too loud, no sitting or lying position is comfortable and so it goes on.
Another trip to hospital, this time to check my cell counts on Sunday evening, as I was still bed ridden five days after my chemo and developing a sore throat and sore glands.
Having berated the NHS in a previous post thanks to some slightly dodgy treatment I have to say that the treatment we, yes we, received this time was second to none. A very attentive doctor who knew why I was there, and had already spoken to Oxford's 24 hour oncology line to get up to speed. Very speedy attention from two nurses both of whom were kind, calm and brilliant at their jobs - one in particular who is so good at taking blood I did not feel a thing and it would appear she certainly took enough - at least 7 vials.
When I say we received amazing treatment, once it had been ascertained in the short term that I was NOT suffering from a life threateningly low level of white cells etc, the doctor was as concerned that Ian was ok as me, the patient. He repeatedly turned to Ian and asked "How are you?" or "Are you ok?" And when he came to give us the results of my blood tests he was all smiles, cheerful and even slapped Ian on the back as we were leaving!! A silver lining to having to spend a Sunday evening in A&E.
I am now on the countdown to the third and final dose of this blend of drugs, with three doses of a new drug to come after that. Once I have got over the side effects from this upcoming dose I really am on the countdown - the number of doses remaining no longer being higher than the number I have completed.
Having seen the oncologist this morning he has decided to modify the doses of two of the drugs I am to receive but leaving the horrid drug at full strength. This is out of necessity as it is THE drug of choice that is the most effective. However, reducing the other two may well lessen the side effects although he lacked conviction when saying this so fingers crossed.
Having been dreadfully negative at the beginning of this post - for which I apologise profusely - I am now feeling alot better having shared the horror. Therapeutic for me. Rubbish for you, the reader. Sorry. Revisiting the awfulness has made it have slightly less impact. Perhaps that is the other silver lining?
Thank you for bearing with me x
Friday, 6 July 2012
A quick addendum
I have heard through the grapevine that the big BIG BIG bonus of this hair loss is that the grey hair doesn't come back.
Although I have to admit it is a pretty extreme way to get rid of them.
Surely dyeing it would be easier?
Although I have to admit it is a pretty extreme way to get rid of them.
Surely dyeing it would be easier?
It's chilly!
I am sitting here with a woolly hat on. That's it, the hair is all gone - most of it has fallen out and the rest? Well let's just say that the clippers have had an outing. There is only so much patchiness I can put up with! Plus, whenever I put a hat on it pulled the hair in so many directions it was almost like having needles sticking into my head. Feels so much better now.
I have been worried about losing my hair, not just from the point of not having any but also because it going will highlight the fact that I have a rather large scar on the right side of my head (which used to be my biggest scar, now overtaken by the one on my chest, obviously) and I thought it would be really obvious. It turns out, now I can see it, that it is not so bad after all. Plus I do feel I will never again worry about it showing through my hair (when it grows back).
Poppy keeps wanting me to show everyone that my hair has fallen out - I may as well not be wearing a hat! No. That would be too chilly...
Having decreed that I was not going to wear scarves and preferred the idea of a range of funky hats I have had to realise that hats are all well and good when you have hair to bulk them out and hold them in place. Nowadays they just slide down over my eyes constantly causing minor issues when carrying out everyday tasks. Such as driving. Tricky!
I have found a wonderful website thanks to a recommendation from the friend of a friend who went through this last year. Ana Bandanna. Started up through necessity when a family member went through chemotherapy hair loss and couldn't find any reasonably priced scarves on the market. Once again, it would appear that the instant you put an unavoidable need such as disability in front of something the majority of suppliers take it as an opportunity to double the price. My point? If one firm can produce bandannas and scarves for £5-£7 a time why does another firm feel the need to charge £15-£20 for a similar item? Yes, I know, quality of material etc etc will make a difference but for goodness' sake! The same goes for disability aids. With this, yes I appreciate the research and development that has to go into these things but if they made things more affordable they would sell more of them and make the same amount of money. This method of thinking is why I will never be an entrepreneur and make millions.
Apologies for the rant. Am feeling cross with social services for constantly moving the goal posts and only running Poppy's carers one month at a time meaning we have to have constant meetings with people over whether the care will continue to run beyond this month and whether we will be left high and dry with no help during chemo.
Oh well. Will have to wait and see what they say when they ring back this time...
In the meantime I am going to go and seek out a nice woolly hat to wear. The one that came with the new tractor seems comfy so apologies to the fashionistas if you see me walking around with a beanie with a picture of a tractor on the front but comfort before vanity at the moment I'm afraid!
I have been worried about losing my hair, not just from the point of not having any but also because it going will highlight the fact that I have a rather large scar on the right side of my head (which used to be my biggest scar, now overtaken by the one on my chest, obviously) and I thought it would be really obvious. It turns out, now I can see it, that it is not so bad after all. Plus I do feel I will never again worry about it showing through my hair (when it grows back).
Poppy keeps wanting me to show everyone that my hair has fallen out - I may as well not be wearing a hat! No. That would be too chilly...
Having decreed that I was not going to wear scarves and preferred the idea of a range of funky hats I have had to realise that hats are all well and good when you have hair to bulk them out and hold them in place. Nowadays they just slide down over my eyes constantly causing minor issues when carrying out everyday tasks. Such as driving. Tricky!
I have found a wonderful website thanks to a recommendation from the friend of a friend who went through this last year. Ana Bandanna. Started up through necessity when a family member went through chemotherapy hair loss and couldn't find any reasonably priced scarves on the market. Once again, it would appear that the instant you put an unavoidable need such as disability in front of something the majority of suppliers take it as an opportunity to double the price. My point? If one firm can produce bandannas and scarves for £5-£7 a time why does another firm feel the need to charge £15-£20 for a similar item? Yes, I know, quality of material etc etc will make a difference but for goodness' sake! The same goes for disability aids. With this, yes I appreciate the research and development that has to go into these things but if they made things more affordable they would sell more of them and make the same amount of money. This method of thinking is why I will never be an entrepreneur and make millions.
Apologies for the rant. Am feeling cross with social services for constantly moving the goal posts and only running Poppy's carers one month at a time meaning we have to have constant meetings with people over whether the care will continue to run beyond this month and whether we will be left high and dry with no help during chemo.
Oh well. Will have to wait and see what they say when they ring back this time...
In the meantime I am going to go and seek out a nice woolly hat to wear. The one that came with the new tractor seems comfy so apologies to the fashionistas if you see me walking around with a beanie with a picture of a tractor on the front but comfort before vanity at the moment I'm afraid!
Wednesday, 4 July 2012
Side effects
I am now feeling normal again. It took about 9 days but I woke up last Wednesday and actually felt mainly human. I have improved steadily since then and even hazarded a glass of wine on Sunday and Monday. I have not however felt the need to carry on with the glasses of wine as it just don't taste the same anymore! Can only do me good, I suppose...
Sadly, this Sunday didn't just herald the return of the vino it also heralded the beginning of the end for my hair. Sudden hair loss? Definitely. In the space of one day I lost half my hair. Obviously Poppy sitting on my lap pulling it out in great handfuls whilst gurgling with laughter did speed up the process somewhat but it is now Wednesday and having had my hair cut very short on Monday I have had to resort to the clippers today to bring it down to a Grade 2 as there are now more gaps than patches of hair. I am hoping that it will now be a bit more comfortable when wearing a hat as so far it has been rather sore when the hat moves the hair as the skin is very sensitive.
As for any other side effects I appear to be, and my fingers are firmly crossed here, quite lucky. I had a very dry mouth for ten days so drank loads of water to counteract it and my gums are a little sensitive but not SORE like they could be. As for bruising and bleeding, anaemia, diarrhoea, kidney problems, numbness and tingling, gritty eyes and the other endless side effects listed in the information leaflets I seem to have avoided the main horrors. As I say, fingers crossed.
So. I am now bald and have some hearing loss (more than normal) but apart from that, the horror of a fortnight ago seems slightly unreal.
We saw the oncologist yesterday who was appalled to hear how badly the first dose had affected me and said he would prescribe the mega anti sickness drug for me that is only licenced to be used on patients for whom all other drugs have failed. Did I think I qualified? My lovely husband jumped in at this point and said that he had taken to placing buckets strategically round the house so yes, he did think I qualified. The consultant agreed and went to put it on my prescription but then saw that it had already been put there by another doctor when I was rehydrated!
I am approaching next Tuesday with a mixture of terror, as I now know how horrible it can be, a small bit of confidence that they will give me the right anti nausea drugs so it won't be as bad as last time and more than a shred of excitement (still? have I not learnt?) because it will be two down, four to go. Each one done is one closer to the end of them.
And I defy anyone not to get excited about that!!
Sadly, this Sunday didn't just herald the return of the vino it also heralded the beginning of the end for my hair. Sudden hair loss? Definitely. In the space of one day I lost half my hair. Obviously Poppy sitting on my lap pulling it out in great handfuls whilst gurgling with laughter did speed up the process somewhat but it is now Wednesday and having had my hair cut very short on Monday I have had to resort to the clippers today to bring it down to a Grade 2 as there are now more gaps than patches of hair. I am hoping that it will now be a bit more comfortable when wearing a hat as so far it has been rather sore when the hat moves the hair as the skin is very sensitive.
As for any other side effects I appear to be, and my fingers are firmly crossed here, quite lucky. I had a very dry mouth for ten days so drank loads of water to counteract it and my gums are a little sensitive but not SORE like they could be. As for bruising and bleeding, anaemia, diarrhoea, kidney problems, numbness and tingling, gritty eyes and the other endless side effects listed in the information leaflets I seem to have avoided the main horrors. As I say, fingers crossed.
So. I am now bald and have some hearing loss (more than normal) but apart from that, the horror of a fortnight ago seems slightly unreal.
We saw the oncologist yesterday who was appalled to hear how badly the first dose had affected me and said he would prescribe the mega anti sickness drug for me that is only licenced to be used on patients for whom all other drugs have failed. Did I think I qualified? My lovely husband jumped in at this point and said that he had taken to placing buckets strategically round the house so yes, he did think I qualified. The consultant agreed and went to put it on my prescription but then saw that it had already been put there by another doctor when I was rehydrated!
I am approaching next Tuesday with a mixture of terror, as I now know how horrible it can be, a small bit of confidence that they will give me the right anti nausea drugs so it won't be as bad as last time and more than a shred of excitement (still? have I not learnt?) because it will be two down, four to go. Each one done is one closer to the end of them.
And I defy anyone not to get excited about that!!
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