How lovely, that brought a lump to my throat.
I know you’re greatly worried about your poor prognosis, I was when I was first told, and still am.
I’m still here though and start my 54th monthly cycle of chemotherapy next week, providing my blood test on Thursday shows satisfactory results.
Always makes me anxious, I’m always on tenterhooks between then and the weekend expecting a call from the clinic saying there’s a problem. By Friday evening and no call I can relax.
Remember this always, “ where there’s life, there’s hope”
Good luck and best wishes
Anthony 
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Thank you Erica, That’s nice of you to say that 
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Yea it was my sisters keeper that got me into Jodie picoult too, I’ve never watched the film tho .
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Hi nicberry, hope you are well
We have had a new member join the forum who has et, is that the condition you have ? You might want to check out her post and offer some advice.
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Hi Alfie, yea it is et I have too. I will have a look for her post. Thanks 
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After my SCT I read My Sister’s Keeper, and identified with the sister so much that I emailed Jodi and had a lovely email back a couple of days later. It meant so much to me at the time
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Thank you. I saw the post yesterday and couldn’t remember who I needed to steer this person towards. So pleased that someone had a better recall than me. Best wishes
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Wow that’s a good keepsake to have
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Hi Alfie @Blackhat
I’m not surprised by this although my GP is brilliant but obviously it totally depends… and it shouldn’t. According to NHS England & the government every patient should have the same care 
and once treatment is finished their GP is supposed to pick up with support and treat patients for any post treatment things like mentioned above… I know this isn’t happening & as an Ambassador for Bloodwise & Policy Panel member we are campaigning the government to make some drastic improvements…
perhaps make contact with your gp… by letter if you don’t feel like calling as there may be times when you need some antibiotics etc. You can quote ‘The Cancer Recovery Package’ and ‘Living with and Beyond Cancer’ because these are what surgeries should be aware of and be part of…
Hope this makes sense & I’m happy to answer any questions
Thanks for sharing your experience as this will be very helpful for us, the policy panel when challenging it
Regards Anna
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I have another appointment with my GP tomorrow morning. I mentioned before that he was trying to push aspirin and statins on me and I was uncertain at the time whether these would be suitable for me.
My leg pains are caused by Peripheral Vascular Disease, ie hardening of the arteries in my legs which makes walking painful.
It’s caused by high blood pressure cholesterol and stress, of which I have all .
My blood pressure fluctuates depending on the situation but has decreased.
I’m going to ask him to prescribe statins, I’ve researched extensively and they are not harmful to my present treatment.
He will again push the aspirin option, but I’m going to ask for a referral to a cardiovascular consultant before I decide.
Aspirin is a blood thinner and should not be taken if ones platelet level is low, mine fluctuate at every blood test. One month 69 the next 137.
It is recommended for PVD but this is not the case for certain blood cancer patients.
I can expect my blood pressure to rise when I see him and foresee yet another confrontation.
But I’ll stick to my guns and I’ve no doubt he’ll fire off yet another letter to my Haematologist complaining about my attitude!!
Ps I still keep walking daily as that’s recommended to stop PVD getting any worse and hopefully other veins will start to bypass any blockage.
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Have you considered seeing a different GP? Or is it a one man doctors surgery? You can also complain to the practice manager… its terrible!
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Hi, Blackhat
Just wanted to wish you good luck with your doctors appointment, don’t forget to wear a hard hat to avoid the incoming missiles from your gp when you have a divergence of opinions on your treatment, or a set to as we say in the north. I am glad to hear you are taking walks, it’s something I do most days even though afterwards I sometimes feel it’s not doing me any good, but suspect I would feel even worse if I didn’t do it at all. It’s always good to hear how you are getting on my friend so don’t be a stranger
Best wishes
Alfie
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I only see him as he does the early and late shift when the health centre is almost empty.
As I have a degree of neutropenia I’m wary of sitting in a crowd all coughing and spluttering.
The health centre is pathogens central.
He’s not the most popular doctor, I have seen others on occasion. Not very impressed by them as they have little or no knowledge of MDS.
When we first moved here with young children there was a stable collective of good doctors, unfortunately that’s not the case now, a very high turnover, every visit a new name appears.
As for complaining to the practice manager, I did do this most vehemently in regard to my previous GPs failure to acknowledge that I had an immune system problem, leading me to get diagnosed privately.
My complaint was met with great hostility and went absolutely nowhere.
I wrote about this in greater detail in one of my previous posts.
If you want to take up a complaint against the NHS you need a lot of time and money, neither of which I have anymore.
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Thanks Alfie,
I think he must have been bullied a lot at school, now he can assert himself in a position of power.
The abused become the abusers.
I’m sorely tempted to give him a smack, or a Glasgow Kiss( I don’t know if you’re that far north to recognise that term?)
I wouldn’t of course, I bruise very easily as my platelets are below par. I’d probably hurt myself more than him.
I don’t like being too close to him either, he’s got the most awful halitosis, make your eyes water!!
It does make me laugh though, I can see his face drop when I walk in🤡
I’m seeing him at 8.30 that will spoil his day.
Hi again Alfi,
I tried a different tactic at my appointment with my GP this morning, I was all charm and niceness when he asked what he could do for me.
I said I’d come for a prescription of statins ( I’d already checked with the British Heart Foundation that they would do me more good than harm) I didn’t tell him that.
I also said I wasn’t just being bloody minded by refusing aspirin, if I hadn’t had MDS or my platelets were stable I’d take them. They do fluctuate quite considerably and I bleed and bruise very easily, any further blood thinner would be risky in my condition.
He quite readily accepted this explanation.
I also said perhaps we got off on a bad doctor/patient relationship to begin with and hopefully this situation could now improve. That pleased him a lot.
A successful outcome I reckon.
Best wishes
Anthony🤠
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Hi blackhat,
I believe your modus operandi was to gently massage his ego
A highly effective technique for getting back on the right foot. You will have him eating out of your hand from now on L.O.L
I shall have to keep my eye on you now I know what a smooth operator you are
But in all seriousness, there is a fine line to be trod between being to passive with doctors and gently reminding them it’s not actually about them ! I believe it’s commonly referred to as mutual respect ! One of my gps is a scary poppins type so I have experience of this.
Best wishes
Alfie
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My goodness Alfie, that’s very perceptive of you.
That was precisely my intention, he can be very prickly and I’ve responded in kind which was my mistake.
I’m still very wary but will have to act with a degree of diplomacy in my dealings with him.
I think he’ll respond in kind in future.
“ use your temper, don’t lose it”
I haven’t a clue who said that, but it’s very appropriate.
Best wishes and thank you for your support.
“ together we are strong”
Anthony
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My gp has long been pressuring me to take low dose aspirin and statins for my high cholesterol.
I’ve always rejected aspirin as recommended as an anti platelet agent.
I’ve reseached the use extensively and learnt that if you don’t have a steady platelet level( which I haven’t ) bleed or bruise easily ( which I do) it should not be administered. My gp accepts this.
I have now developed Peripheral Vascular Disease causing intermittent claudication in my legs, causing pain whilst walking.
This can be caused by high blood pressure and high cholesterol.
I’m taking 10mg of Amlodipine daily for the blood pressure.
The best way to stop this getting worse is regular exercise ie walking.
This I’ve been doing (up to 5 miles a day) this will encourage collateral blood vessels to enlarge and increase the blood supply to my legs, it does seem to be having some effect. The pain goes when I’m at rest for 5 mins then I carry on walking, I’ve also made drastic changes in my diet to include more veg and fruit, fibre etc.
Not good enough for my gp it seems as he still is pushing statins.
Now he’s resorting to frightening tactics telling it could lead to unhealing leg ulcers or even amputation.
That worked so I agreed to start taking 20 mg daily of Atorvastatin.
Huge mistake, I started producing pale stools the colour and consistency of concrete and got bad piles into the bargain.
I phoned 111 and the emergency dr told me to stop taking them immediately and see my gp asap.
The same thing that the NHS drug advice site advised as it could be a sign of liver damage.
This appears to be a rare but severe side effect of every statin available in the UK. The enzymes in the liver and bile duct can be disrupted.
My gp seemed sceptical when I told him.
What worried me even more was that I had a pre Chemo blood test yesterday and if I had a liver problem my next cycle of chemo 4/3 would be cancelled.
The assessment nurse took all these details and emailed them to my Haematologist to refer to when she examined my blood results.
The nurse said they would have the results and prescription back in the clinic same day and she would phone me to tell me either way whether treatment would be given on 4/3 or not.
The waiting was agonising, my phone rang at 2.30 and to my relief the nurse told me that the Haematologist had approved the cycle to go ahead.
I could feel the stress flowing from me.
My gp asked for purple and gold top blood results to be sent to him, this the clinic will do.
He’s only going to get the same results as my Haematologist saw as my pre Chemo blood tests are gold and purple top, apart from the fact he gets those sent to him by the hospital each month, if he would just refer to my records he would be well aware of this.
No doubt I’ll get a call from him when he gets the results and start pushing statins again.
After my last experience with them I shall refuse point blank. I shall be very tempted to give him the finger too🤡
I shall rely on exercise and diet etc to bring my cholesterol to acceptable levels
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Hi blackhat,
Sounds like the truce with your gp is off again !!!
My consultant is trying to get me to take beta blockers for my cardiomyopathy but I won’t take them until I get the results from my recent echocardiogram, I am pathologically averse to taking any more long term medication unless there is definitive proof I need it. I have no symptoms and my blood pressure which is monitored for 4 hours 3 times a week at dialysis is perfectly normal but still they try to push blood pressure medication on me. I get the distinct impression that I am participating in a box ticking exercise, so I operate on the basis of demonstrable need. We are I think what is referred to in the medical world " a total pain in the rear end "
Best wishes
Alfie
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You’ve hit the nail on the head Alfie, his attitude changed quite dramatically when I agreed to take the statins. I obviously misjudged the situation in my reaction to him using my fear to get his own way.
Like you I’m reluctant to take unnecessary medication unless it’s to combat my Myelodisplasia and prolong my life.
My blood pressure has lowered considerably but only when I take it 3 times at 2 minute intervals when I’m at home and relaxed. I’m not absolutely convinced that the amlodipine is responsible for the drop either.
When it’s taken in the same manner at the surgery the results are always high.
I’ve also had high blood pressure at my monthly pre chemo blood test and assessment, I assume they expect that as it’s a tense time each month as I always have great concern that this test will be the one that indicates the chemotherapy is no longer effective. It’s never commented on at the time.
I had started waking in a panic attack again since the adverse reaction to the statin, I don’t have to take my blood pressure to know it’s raised then as I can even feel my pulse in my eyes.
I usually take a Valium to calm me down then. I feel dreadful until it takes effect, instead of swallowing with water I suck the tablet to dissolve for speedier relief.
I’m living from one monthly b/t to the next, horrible experience.
On the plus side now I know I’m starting my next cycle on Monday I can relax for a while until the next b/t is imminent.
When I started this topic “always a battle” it is for all of us whatever form of blood cancer the other contributors have.
I’ve read some contributions and note that it’s an even bigger battle for some of us.
I can’t win but I’ll fight on to the last.
I’ll keep questioning like you do.
I comprehensively research anything I’m told to do with my treatment as I want to know everything, good or bad.
I’ve had no adverse reaction to the Azacitidine I’m treated with, some of the side effects are absolutely horrific.
It’s only the meds that my gp is convinced that I should take that give me problems.
The high cholesterol I’ll tackle with plenty of exercise and good diet. If my gp doesn’t like it, tough s*** not allowed to say that on this site but I’m sure you know what I mean?
Stick to your guns Alfie, it’s your body although some of the medical professionals seem to forget that.
Incidentally whilst I was picking up a prescription at Boots today there was an elderly lady doing the same and I heard her say she had the same gp as I have. I asked her what she thought of him, she said she saw another dr when he was away and the doctor said “ he’s a bit up himself isn’t he”
It’s not just the patients who have that opinion but members of his own practice!!
Never give up Alfie, and don’t ever lose your sense of humour however bad things get, if we can’t laugh even at ourselves all is lost
Best wishes as always
Anthony
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