Oh @Unclejack confused and frustrated you will be.
My hospital dermatology appointment is now a year later than it was supposed to be.
Also my rheumatology appointment which was supposed to be last April was chased by me a month ago and I got pushed back and forth from rheumatology and the medical day unit and I await a contact from rheumatology and, guess what, I will chase them again next week.
Hospital holidays, sickness, Covid, strikes, overbooking etc. have been stated as reasons.
I have to say though my GP surgery are fantastic x
Oh @Unclejack confused and frustrated you will be.
Sorry to hear this @Unclejack - it sounds as though you’ve been through a great deal here. I hope you don’t mind me jumping in - I just wondered whether you’ve ever spoken to your hospital’s Patient Advice and Liaison Service (also known as PALS)? It may be worth talking your concerns through with them to see if they can support you at all, if that’s something you feel happy to do. We’re also here for you if you want to talk anything over (0808 2080 888). Take good care of yourself.
I think it is risky criticising a dept. that you hope may extend your life!. I have very little confidence in the NHS. At least at the moment I am well and that’s the main thing.
I have recently started drinking 2 or 3 cups of green tea per day and chamomile tea 3 cups per day. Researching effects it seems these teas affect blood clotting. Apparently platelet aggregation can be reduced.Can you point me in the right direction for info about which drinks or diet that might help platelet count. After reading studies that suggested that green tea and chamomile tea could allegedly be helpful in the battle against many forms of cancer it seems to be difficult to find anything that doesn’t seem to reduce blood clotting. I suppose for most reducing blood clots is beneficial but with low platelets that is not the problem.
- Living well with blood cancer
Personally I just follow a healthy balanced diet (with the odd treat).
I don’t drink tea, of any kind, or coffee, as I don’t like them, but I am a fan of tap water, boiling or cold, and of course my 9.30pm hot chocolate made with boiling water.
Others will have other thoughts.
Good idea to raise this
Hoping you are feeling okay. Thanks for the quick response and advice. I started drinking several cups of green and chamomile tea a few months ago. Not noticed any side effects. But researching reputable medical websites found out that it could react with warfarin and clopidogrel antiplatelet medication. So I thought bearing in mind my low platelets 65000 at last test better check this out. Unfortunately it seems most spices and herbs have a bloodthining effect. Which I suppose is to be expected because many are beneficial stopping blood clots etc. AS AN ASIDE I WAS TAKEN OFF CLOPIDOGREL LAST APRIL. So I am hoping that should limit effects on my platelets. Also at my last bloodtest my cholesterol level had fallen to two which seems odd considering I have changed my diet considerably and eat more cheese eggs etc. I have actually put on about 12 pounds in weight. Still use my exercise bike for an hour everyday but arthritis in my shoulders has stopped my normal daily workout. At least I think it’s arthritis perhaps it’s those 40 mg statins side effects. It’s time I had a conversation with the doctors as you suggested to see if they are necessary. Anyway I continue to research everything I can in the hope perhaps I can slow this disease down. I absolutely eat like a horse and except for my bad back and arthritis feel very well. I think my knowledge of Chronic myelomonocytic leukaemia (CMML) is beginning to reach a very high standard.
Strangely in my mind I prefer to call my problem bone marrow failure sounds slightly less worrying than leukemia. I will not stop trying to beat this problem. Win or lose I will go down fighting! Anyway thanks for your sage advice, always appreciated. I hope all affected by this disease are holding their own especially the Chronic myelomonocytic leukaemia (CMML) patients.
Thank you for the message and it is really positive that you are making changes to improve your health. As @Erica mentioned a balanced diet is key along with regular exercise.
In my experience there are no definitive foods or drinks that can influence the production of platelets. I would always discuss any significant changes in nutrition or in taking supplements with your Haematology Team.
Do give us a call if you would like to talk this through: Blood cancer information and support by phone and email | Blood Cancer UK
My research has unearthed certain fruits that can assist platelet production. Pomegranate, papaya leaf extract, wheat grass , and keeping on top of VIT C, Iron, all support platelets. Of course curing the disease is a different matter.
My hope is to slow the disease progression and stay well for as long as possible. After talking to Erica right at the start of this journey it gave me hope that longevity could be well beyond my initial expectations. I realise things are different for everyone inflicted with any cancer. My neighbour was diagnosed with lymphoma at the age of 58 he immediately retired thinking he hadn’t a lot of time left. He passed away at the age of 86. He did have many treatments and it was controlled but not cured but the NHS really did a marvellous job. Another workmate of mine had lung cancer he medically retired straight away and I found out recently he was well in his eighties when he passed away! So even on this journey nothing is certain and everyone reacts differently. I only take a multivitamin and Vit D in supplement form my other ‘treatment’ is diet.
I check everything for side effects etc. on reputable websites. 73 on boxing day and I wouldn’t know there was anything wrong except for abnormal blood tests! We walk miles, and I spend an hour per day on my exercise bike no problem. I still get very stressed when it’s blood test time. Anyway Merry Christmas to you and all the staff at blood cancer UK.
sufferers and survivors everywhere.
@Erica and @GemmaBloodCancerUK
Hope you are well. Have been unwell myself this last 7 or eight days. Started last Wednesday with toothache. Luckily dentist saw me Friday checked my teeth and said couldn’t find evidence of a problem. That same day my nose literally started running like a tap! I felt a bit rough but no more than past colds. Toothache subsided over last weekend. On Sunday I noticed a swollen lymph node under my jaw on the same side as the toothache. I’ve occasionally had these before over the years as probably everyone has so I think it is connected to my toothache. Today I noticed another one smaller and more under the jaw towards neck. Slightly tender but like the first they can be moved. I just hope it’s infection related and not leukemia related. I feel well no other symptoms, no night sweats etc. Fortunately had my routine blood test today in preparation for haematology telephone appointment next Wednesday. I suppose it’s natural to panic a bit these days.
I carried out a COVID test which was negative.
Do you think today’s bloodtest will highlight if there is or not a connection to my diagnosis?
Just a wee bit worried.
What a week you have had @Unclejack and as you know I am certainly not medically trained in any way.
Perhaps it does not matter if your blood test does not show up anything.
You have a haematology telephone appointment coming up on Wednesday and you can raise all your concerns then.
Perhaps write down everything you want to say beforehand and be pleasantly assertive and make sure you cover everything.
If you say you are a wee bit worried that just might be an understatement.
Please let us know how you get on and really look after yourself
Thanks for the advice. You know what it’s like, the slightest health problem and the imagination and fear goes into overdrive.
Yep, @Unclejack my imagination and fears sure have an overdrive gear and I see things very visually in my mind too.
So sorry to hear that you have been unwell. How are you feeling today?
It sounds like that your blood test and clinic next week are timely as hopefully you will be reassured. As you mentioned, it is natural to panic but the blood test and clinic appointment should ensure you have the opportunity to discuss these symptoms. Please do mention the timescale of the symptoms to your Haematology team as that will be useful for them. The Full Blood Count will be useful in terms of comparing to your last test? It can show when you have an infection or virus as the white blood count can be raised.
Hoping you feel better soon,
Thanks@ Gemma. Feeling well. Cold has just about cleared. The second swollen gland I can’t find today. The first one seems smaller. I did a COVID test a few days ago which was negative.
Hopefully just a normal reaction to a dental infection and a cold. Normally I wouldn’t have taken any notice of these things as over the years experienced this many times. Other than abnormal blood tests I’d think there was nothing wrong. Still battling on with my changes of diet.
I do take a multivitamin and Vit D3 supplement.
My haematologist put Vit D levels on my blood test form because most are Vit D deficient especially in the northern hemisphere. After researching the subject I think everyone should have their Vit D levels checked as routine. Seems the NHS still use the 1920 data for Vit D levels. Many experts say the guidelines are far from adequate. They also say Vit D is essential for the immune system and every cell in the body has Vit D receptors. Anyway if I can get my Vit D levels up to optimum with the approval of haematology it may help the situation. The optimum level is stratospheric compared to what is recommended. Sorry to go on but when you’re fighting for your life it does concentrate the mind.
Anyway I would like to thank you all at blood cancer UK and wish you a merry Christmas and a happy new year. Especially @Erica who is always there with advice and support.
Oh @Unclejack thanks so much and what a good opportunity to wish you a very merry Christmas and happy new year too xxx
I’m a little bit confused. Have recently gained access to my records and tests via NHS app.
Have noticed two occasions the letters between GP and haematology mention Chronic myeloid leukaemia. Perhaps it’s just a accidental omission of the 2nd M in Chronic myelomonocytic leukaemia (CMML). After reading about Chronic myeloid leukaemia seems prognosis is much better than Chronic myelomonocytic leukaemia (CMML).
On another letter it read probable Chronic myelomonocytic leukaemia (CMML)?
The word probable seems a description when something isn’t certain. It seemingly would be a great Christmas present if my Chronic myelomonocytic leukaemia (CMML) was actually Chronic myeloid leukaemia. Sorry clinging to straws again.
Would like your opinion
Best wishes unclejack.
Oh @Unclejack, keep clutching at straws.
Perhaps your question is best asked of your medical team who wrote the letters.
I would say be pleasantly assertive and very specific and ensure you get the answers you want.
I write my notes out first so I cover everything.
Please do let us know what they say.
Take lots of care of yourself
Many thanks for your response. Sometimes I get very exasperated especially as I approach my haematology appointment TOMORROW (TELEPHONE APPOINTMENT). I had a dental infection quickly followed by a cold and I am worried how this would affect my blood test. I feel well, BUT I did before diagnosis. The thing that winds me up is the more knowledge I acquire the more my confidence declines.
I realise our NHS is overwhelmed and things are going to get a lot worse. I actually found out that after being told there was no ambulance available for 10 hours and telling the ambulance telephone operative that I would go by taxi, an ambulance arrived at my address less than one hour later!!! The situation seems to be nothing more than a joke. That’s East Midlands Ambulance Service for you. For all the technology and medical improvements I honestly believe we have certainly the worst health service in the industrialised west. It seems if it wasn’t for people like yourself and blood cancer UK things would be unmanageable. Anyway enough of my ranting but it does help to get things off your chest. As an aside I’m 73 on boxing day and still feel well.
So am grateful for that. Hopefully my chat with haematology won’t upset the apple cart. Merry Christmas to you and I hope you are well. I was amazed
Sorry hit the wrong button. I was going to say I was amazed how long you have faced this problem amazing.
You have a rant @Unclejack please do let us know how your telephone appointment goes.
Have a brilliant birthday on Boxing Day and you are still feeling well, what a complete win - win in my eyes.
I am so grateful for every birthday and cancerversary
Please let us know how everything goes