Your cancer story?

[suze]

Thanks

You DO sound very energetic ... I never do any baking, though I used to love it as a teenager at my parents' home, but with just the two of us, I fear the calorie count is just too high

I've having a week off my strict diet, with a few sweet treats this week ... but otherwise I am pretty careful to eat the anti-cancer diet which doesn't really include any cakes or biscuits ..

when had dry mouth from chemo, I used a different toothpaste they gave me in the hospital, cannot recall the name but it was quite good to just take a little bit on my finger and let it moisten my mouth ... sorry I cant recall the name, it is very expensive but you can get it on prescription, which you should be getting free anyway ...

[anne]

I had another set of blood tests done at my new GP surgery recently, and one of the partners wrote me a letter expressing some concern and suggesting I should discuss a hospit, al referral, but I've agreed with my GP that my wonky bone marrow and high platelets are normal for me and there isn't really much we can do about them right now apart from continuing with aspirin and staying healthy. Chemotherapy beckons within a year but it won't be anything like the regime I had for the breast cancer, and I'm determined to enjoy myself (within my means) because good health may not last ... The doctor told me I was lucky to realise that, that so many of his patients will have a stroke, say, and then regret not doing the things they wanted to before they were ill. I am getting more fatigued and achey though, and often find it hard to catch the words I want to use. But I do realise I'm lucky - a bit late in life I realise how blessed I am.

[suze]

Anne, I think you made such a good move shifting yourself to Wells and opening up new horizons in your life, it has been a very powerful move, and given you options to realsie what you value ..

It is always nerve-wracking thinking of future treatments, but when it actually arises you will adapt to it, and hopefully you can really suppress those anxieties for now, while you are enjoying your life so much

I also want to say that I will never forget how sweet you have been with me over the past 5 years since I got my diagnosis (well it's NEARLY 5 years!)

Probably because you have been through this yourself, you were very empathetic with what I ws going through. You made your own experience a real strength in our friendship. Your constant attention to what I was facing was always appreciated, and you always had your eye on what was happening, or on the horizon. Thank-you.

Thank-you, too for all your lovely hand-made cards and other greetings that you have sent to me over the years to punctuate the dark-times ... you brought a little brightness into my life with each of them, and I really do appreciate that .. stilll do, because all of them are still here in my box.

Thank-you
x
x
x
x
x

[anne]

oh you are a soppy so-and-so but a very lovely one, suze. I'm so glad you feel I have been able to support you during the last five years and I appreciate your kind message xx

We all support each other in whatever way we can, I like to think. Perhaps the trick is learning to be self aware, and understanding one's skills and limitations.

The cards haven't dried up by the way - they are in the next stage of development. ;D (Harpie and Birdie haven't disappeared either ..)

[anne]

I'm off to see the nurse at the surgery tomorrow, and will discuss with her help with diet. My other lifestyle thingummies are quite healthy but I still overeat, even healthy food. The doctor has suggested that perhaps I might not need to go onto the chemotherapy regime for my thrombocythaemia .. we do have choices in life .. and it would be a shame to start taking extremely toxic medication partly because I can't be bothered to lose weight and also attempt to lower my blood pressure naturally.

I'm also wondering how to bring my blood problem into conversations when appropriate. Technically it is a form of slow growing bone marrow cancer (following my breast cancer) - it's not lethal per se, but it can result in blood clots around the body. Sometimes my joints ache very much, and I sleep a lot. How to explain that to people .. how to explain any drugs I may have to take, or bone marrow examinations - it's a conundrum. The relief and support of chatting to other people who have similar situations is so helpful. So perhaps the nurse can advise me with this as well.

[suze]

Hi Anne, is there a forum for ppl with this condition? They just got one going at Beating Bowel Cancer and I think it is so useful for the sort of thing you suggest, to talk through how you deal with issues.

One bit of advice my sister gave me was to have scripts prepared for certain situations, and that is really what you are trying to do with this question .. I suppose .. you dont want to go chapter and verse with everyone, an'd in general it's a bit of a silencer to mention cancer if you dont have to .... but you need a narrative that explains your situation, sometimes.

hmm

is there any other more well known condition that you could claim as your own cos its symptoms are similar, so you could say I have an illess/condition that's a bit like xxx illness xxx which means I need .. yyyyy (say: certain foods or rest or whatever it is you need to explain)

I hope you can get better control of your blood pressure by less intrusive means than chemo ...

[anne]

Thanks suze. Scripts are a good idea, I suppose this is what I'm trying to achieve - a way of explaining myself to the new people around me. For the first time today I found myself missing our old home, and our old surgery where everyone knows not just me but family members and our combined and complicated medical history. It all bounces off each other doesn't it?

Thrombocythaemia is caused by the bone marrow producing too many platelets and it's related to leukaemia where the bone marrow produces too many white cells. There are other unusual similar conditions but leukaemia is the one everyone has heard of ... unfortunately that sounds so dramatic ... this is one thing I was hoping to discuss with the surgery nurse today but she didn't 'take the bait' when I told her it was difficult to find people to talk to (which is why I felt nostalgic for my old surgery).

You are right about finding a forum - but it's very rare so usually gets included with leukaemia - which is a bit of a hurdle for me to accept I suppose. There is a support group for thrombocythaemia (and two related conditions) at Guys in London and they run a little forum. I will also explore the Macmillan site.

I wasn't clear about the reason for drug treatment. The drugs/chemo act on the bone marrow to stop the cells duplicating themselves - but it's very toxic (as is anything that acts directly on the bone marrow). If I am overweight and have high blood pressure then the likelihood of clots forming is greater and for that reason it would be important to take this drug regime.

If, however, I can get bp and weight down and be as healthy as possible then I could possibly "choose" between taking a chance on blood clots against taking a chance on toxic damage from drug treatment.

Anyway, it's good to write this down and get things clear in my mind. x

[mumndad]

Anne sorry to hear about your thrombocytheamia I take Warfrin is that toxic.
To be honest Ive never taken much notice of whats in the tablet.
I did get a blood clot I think it was last year but it seems it somehow broke itself up, or did it whos to know.i just keep taking the pill and hope for the best.
To be honest I just hate tablets my Mother was the same, apart from insulin late on in life she didnt take much medicine and she was 96 when she died.
Obviously when you are very ill like alot off you lovely people who come on here are or have been then medicine is what you need and are grateful for it.
Freds just got up so will sign of and get ready to go shopping. Bye for now L.M. xxxxxxx

[anne]

Hello mn'd, thankyou for replying. My mother took warfarin following a minor stroke and I know it is quite different from the drugs that would treat thrombocythaemia.

The warfarin acts directly on thick blood whereas the drugs I'm describing act on the bone marrow where blood cells are formed. I have a problem with my bone marrow not working properly, but on the other hand I have no problems with cholesterol or fatty build ups in my blood vessels. So it's swings and roundabouts.

I hope I haven't worried you?

btw will say hello in the September thread soon, but gotta go cook tea now x

[suze]

Oh, sorry I misunderstood a bit, partly cos I fused this with my dad's issues re daibetes and controlling that aspect of blood ..... blood pressure etc ...

Bit clearer now ... why not try again with the nurse? Or maybe Macmillan?

I see the Mayo Clininc has quite a bit about it, incl some You Tube talks! Modern technology, eh!

The Mayo was something my GP recommneded me to use for background info ...

[anne]

Thanks suze - I haven't seen the Mayo Clinic site. Yes, the one I've got is 'Essential Thrombocythaemia' (the American spelling is slightly different), and the three drug treatments they describe, hydroxyurea etc, list the various horrible side effects, including the *possibility* of the ET turning into acute leukaemia.

So you can see why I would want to avoid drug treatment if possible, ha!

This is the Support Group I mentioned, think I might get in touch ..
www.mpdvoice.org.uk/

No worries about the blood pressure - I mentioned it in a rather confused way myself!-

[suze]

Welll .. there is always that balance between doing a bit of research so you know what is going on and what your options might be, and getting yourself really distressed by the endless horror of it all! LOL

[Mark]

Anne, I am not qualified to comment here, but still can realise how worried you are. Don't put extra pressure on by trying to be gentle to others about what's going on. Unless, what you are really saying is that it is too upsetting to you when you have to spell it out. I think you must be braver than I am.

[suze]

Yes, that's a good point, Mark .. we have to decide who we are protecting and why in this sort of thing ..

I personally prefer not to go into too much detail cos it is upsetting TO ME to keep focussed on it ... and that is the main reason why I never go to any social events at the college, although I get invited, I only want to see ppl who realy already know stuff, and not get asked 50 times "how are you?" or get that sympathetic look from former colleagues ..

at the moment the prospect of more treatment is just WAY TOO MUCH in my head ... it is making me gloomy ..... so I have to relaly try to not dwell on it ..

but if it is necessary to tell other ppl for some reason it DOES help to have worked out in advance what few words you want to use to convey it ..

[mumndad]

Never been one for asking to many questions about my health, I just think the least I know the less I have to worry about.
Then on the other hand when its family or friends who are not well I get very concerned for them, like I am at this moment.
Bye for now L,M, xxxxxx