When I say “nothing” for support, I do have yearly blood tests to monitor - though I missed Dec 2020 and Dec 2021 bcos I didn’t want to risk getting Covid just for a blood test when I’ve been stable so long!
Some good questions @Chapsticks that hope you find answers for.
It’s always annoying finding out from knowledgeable people or resources or from people in a similar position recieving different care getting something that would benefit you too… Not saying every medical dept/person is perfect and knows everything but at the end of the day the priority is your health so helping medical teams better care for you by getting clued up and having access to this can only be a good thing. I know sometimes medical professionals always give the dismissive perception and attitude when you highlight something you want investigating or querying based on your own research.
On your blood tests, I’d definitely think about getting it done if you’ve not done so in the past years. Maybe make an appointment first thing or last thing to limit the chances of covid and when it’s less busy.
Look after yourself
Hi Chapsticks, I have has several blood tests, and other tests recently, Cat Scan, Chest X ray, ECG, Ultra Sound, and am in a Hospital Operating Theatre next week, for an ‘Endoscopy’ For which I have to have a PCR test before.
I do alateral flow test every day, as I go out, two of three times a week, in what I consider to be safe space, and obey all the rules. I realise that every day is a threat of some knd to us with Bood Cancer, especially during ‘Covid Times’.
However I have decided to take a risk assessment based, calculated risk, and I am not too bothered , as long as I stick to the guidance, and do my daily Lateral Flow Tests.
I have, also had my lettter from NHS Scotland, stating that they know I am at high risk, and they have informed me about the Ronapreave, and Monoclonal Procedures, should I have symptoms of Covid. I have about five days to get that action done, seemingly.
Other than all that, I live life to the fullest I can, and take it day at a time. Being a life long 'worrier, I have adopted a healthy life style, diet, weight down, lots of Long, Slow, Sort, and Silent Nostril breathing Inhale/Exhale sessions.
I have researched the Scientic research and possible benefits, of Nostril breathing and the importance of the Nitric Oxide levels, obtained, whilst doing so. All the information regarding this, is to be found, and is easily accessable, on the Internet, seach engines.
I hope that, this is of some help, and gives you a reason, for much, ‘Positivity’ in our ever constant fight, for a good quality of life. All the very best wishes to you, Chapsticks. Regards Ron
Hi Nurse Gemma,
I will not be going on the Zoom Watch and Wait session coming up, but wonder if you could assist me. I have a question to do with lymph nodes and spleen. I have Chronic lymphocytic leukaemia (CLL) and have been on Watch and Wait since 2011.
I have not seen my Consultant for many years. Although getting blood tests annually, since about over the last six years or so, I only get a follow up phone consultation from a nurse giving me my blood test results; she always says that I am still on Watch and Wait.
Is this a common occurance with Chronic lymphocytic leukaemia (CLL) Watch and Wait patients?
Additionaly, I am asked about hot flushes at night and also asked if my lymph nodes and spleen have got bigger, yet I am not examined about this. I am not qualified to examine myself but want to know without these parts of my body being regularly checked by my Consultant, is just having a blood test without these examination an accurate way of knowing if I am still on Watch and Wait or what my prognosis is?
In other words, is my Consultant missing something by not checking my lymph nodes and spleen?
Hi @Lulu999 I am in the same situation as you.
I have Chronic lymphocytic leukaemia (CLL) and I have been on watch and wait for 18 yrs.
I used to see my consultant 6mthly or annually then about 5 yrs ago he referred me back to my GP and said if anything goes amiss that I could be fast tracked back to him.
My GP checks my 6 mthly blood results and I keep track of them, but I would go straight back to my GP if my symptoms changed, I gained symptoms or my spleen or lymph nodes increased in number or in size, just like I check my breasts regularly, usually when I am in the bath.
I hope this helps.
Look after yourself
Its been 12 months now, I had routine blood test every 3 months, my white cell blood count is high, Doctor thinks I my have CML and I was checked out for some common signs, but I have no symptoms, except for slight itching, but I have not had, any other test, other then blood. Is watch and wait the only way forward with CML, could the opportunity be missed for effective treatment if not detected early and go to its next stage of Acute Myeloid Leukaemia.
Thanks for your response. I do not know or even feel confident about checking my spleen or lymph nodes. It would be nice if the Consultant did this for me. As I feel fobbed off by this government, I feel fobbed off by my Consultant. I know, from an error, that he was ordered to not bother seeing so called minor cases, which I presume Watch and Wait comes under, thus I started to have only phone contact results with the nurse over the phone, since pre-Covid days. (I was actually given by accident a letter from the Trust by a Registrar, outlining this!) You can imagine how good that made me feel, plus having the so-called support nurse from *ell.
In late summer, I have another phone appointment, but with the Consultant as I asked that I no longer have to deal with Nurse Ratchet! If and that is a big IF, Covid goes away or is somehow under control by then, I wonder if I can get to see my Consultant for an actual examination, but I doubt if he would change to a non-phone appointment. When I had to see my GP about my shoulder blade/upper back/neck problem last October, I asked him to check out my slpeen and lymph nodes but he would not do so.
I suppose professional etiquatecy comes ahead of patient wellbeing.
Keep safe and well.
Hi @Lulu999 I realise my situation is very different to yours and actually now you mention it I also remember feeling abandoned initially when the consultant referred me back to my GP.
I also do feel confident in checking my spleen and lymph nodes.
I am also sure that my GP knows that I am under him for my Chronic lymphocytic leukaemia (CLL) care.
I am also lucky enough to have brilliant nurses and certainly no Nurse Ratchet !!!
I am sorry that your experiences have been so distressing please keep us up to date with how you are getting on.
Look after yourself.
Brilliant Emma, very interested and will send in some questions I have
Both my and my husband’s experiences with the NHS has been both good and both very bad.
A former GP, now thankfully retired, told me after a regular blood test that showed an abnormality, that I had a different terminal disease to Chronic lymphocytic leukaemia (CLL) - one that meant I had about 18 months to live. When I finally got to see a Registrar at the hospital, he said that this GP was talking rubbish and he should not have told me what he thought I had and that it was not up to him to do so, but the Consultant and/or Registrar.
Then there was a botch up when I had a large lump removed from my breast too and left on a trolley after an op for several hours. I asked to see a doctor, as I was in great discomfort, and was told there was no one available - in a hospital! They eventually found a bed for me for two nights, but I was turfed out of that bed much too soon and could not even get dressed by the bed - had to go to the loo to do this. When I went back to work, I had a massive panic attack after a few days, the first of many of the years. In addition, because they needed the bed, the wound was not drained properly and one day I woke up with all this guck coming out of my breast which freaked me out. So the NHS can do wonders, but they are also responsible for a lot of damage, even though not intentionally. For many years our Trust has been failed and Chief Executives come and go.
Then my husband came across a rather religous Oncology nurse, who did not master the art of listening or comforting and besides this, told my husband that God will look after him. You do not say this to a man who has just discovered he has advanced prostate cancer. I know medical staff are only human, but I have always thought that medical staff are not suppose to do harm.
As you say, you are lucky you deal with good medical staff. We have not always had this sort of service, cutbacks or not. Not only did lack of care cause me to have panic attacks after the lump in my breast was removed. I also could not travel on the tube anymore and had to give up my job and find only local work. So this episode, besides being mis-diagnosis re: Chronic lymphocytic leukaemia (CLL) has caused me a lot of life-changing problems and being stressed because of Covid, is only half the story.
Stay safe and well Erica.
Oh @Lulu999 I just don’t know what to say.
Look after yourselves and yes, stay safe and as well as you can.
There is really nothing to say. Regardless I cannot understand how people are due to NHS and support staff.
All I hope now is to get through all my medical appointments over the next couple of months and not catch Covid,
Great to read some of the subjects that have been discussed.
When I was first diagnosed with (Chronic lymphocytic leukaemia (CLL)) I was also diagnosed with Type 2 Diabetes, I had lost over a stone due to two viral infections and some other issues, over about 9 months. So I had the challenge of gaining weight which went against the Diabetes team, but after asking how to gain weight they gave guidance and I have gained over the stone lost. My bloods were taken 4 times in the first year, and for the last 2 years its once a year. My GP wrote to my consultant for guidance on the blood levels that he wanted my to measured against. We now have these and this allows me to monitor myself. My question is can Blood Cancer UK give guidance for watch and wait patients and for each of the Leukemia types a blood count guide. Also a simple list of changes to watch out for in ourselves, so that if we need to discuss with the GP we at least would have a discussion subject.
Like you, I’d really love to learn more about what blood stats mean and also would be very interested in a course about blood cancer. I did a biology degree but totally hated immunology and so didn’t choose to learn much about it and now I’m regretting it! However, most information either seems to be a) too basic b) targeted at specific types of cancer or c) on a level that is really challenging to understand!
How do we get the link please?
Hello all, just wanted to apologise for not being on this thread of late, the phones/emails have been a bit busy with all the COVID treatment issues so have been concentrating my time there. I will see or hear you all on the 8th and @Alice_BloodCancerUK will send the link out on Monday. I will reviewing all the questions you sent and will answer as many as possible, any left over I will answer by message on this thread. Kind regards Gemma
Hello all, for those of you coming along to our Nurse support session tomorrow - please find the Zoom link below -
Blood Cancer UK is inviting you to a scheduled Zoom meeting.
Topic: Blood Cancer UK Online Forum Nurse Session - Watch and Wait.
Time: Feb 8, 2022 01:00 PM Greenwich Mean Time
Join Zoom Meeting
Meeting ID: 856 6895 5577
Dear @Redstripe, it must be very frustrating not knowing what your diagnosis is? It is unusual to be on watch and wait for CML as it is predominately treated with targeted medications (Tyrosine Kinase Inhibitors). It is reassuring that you are having blood tests every three months and that you have minimal symptoms. Do you have a contact that you ask questions to like a Clinical Nurse Specialist? I would suggest asking your Doctor some questions regarding this during your next visit/call. If you would like to message me privately I can advise you.
I’ll be there, I am really looking forward to seeing everyone, it looks a brilliant session.
I will be there as well
Looking forward to it.