Hi @Adw265, I’m so sorry to read that your fatigue has been getting worse, and that your registrar rushed through your appointment. That’s not easy. As Erica has mentioned, you’d be so welcome to call our Support Team if you’d like to talk any of this over (Blood cancer information and support by phone and email | Blood Cancer UK). We can also talk to you about second opinions if that would help, although I appreciate you said you’ll be moving. Do you have a Clinical Nurse Specialist (CNS) that you could speak to in the meanwhile? Has anyone done recent blood tests to look into the fatigue by any chance?
Fatigue can really be such a difficult one to cope with, especially when we feel our workplace is perhaps not understanding about it. I was wondering if you’d seen our money and work webpages at all? They talk about your rights at work, reasonable adjustments, and so on, and also reference an organisation called Acas. Acas have a helpline and offer advice on a number of work-related issues.
Take good care of yourself, and do remember that we’re here if you need any support.
Starting to get a little nervous, I just had my latest consult with my oncologist, up until now I’ve had alternating telephone/face to face consultations six months apart. Now it has changed to every 2 months. Apparently my spleen is enlarged along with lymph nodes in my throat.
The only thing that bothers me is the possibility of bone marrow testing, when my wife had Acute Myeloid Leukaemia she found the bone marrow test very painful.
Hi @MikeW Bone marrow biopsies are quite often talked about on here and the opinions range form painless to painful.
A lot of people ask for pain relief, I think telling our medical teams our fears and that we are nervous helps because often by tensing ourselves up we make procedures more difficult and painful.
However I am glad to hear that your oncologist is monitoring you more closely just in case.
Procedures are being improved all the time.
Of course you will be bothered, even anxious, about unknown tests and procedures and the waiting to know.
I will copy your post to the Blood Cancer UK nurse advisors in case they can add something @BloodCancerUK_Nurses and if you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Please do let us know how you get on.
Look after and be kind to yourself
Hi @Erica,
When my wife had the biopsy she was given a local anaesthetic cream, I think it was called Emla, which was applied 1/2hr before the procedure. Even so she did complain to was very painful. Fortunately I have no fear of needles, despite having a blood test twice a day for several months when I was around 12yrs old. These days my vein hide when a needle approaches
I was just wondering if biopsies have changed over the years.
Hi @MikeW I don’t know if biopsies have changed over the years, but I think most medical procedures have.
That is a good question for the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses .A handy hint before any type of needle test is to drink plenty and I was told a hot drink also helps.
Take care
Hi @Erica I do try to have questions ready but then forget to ask them. Maybe I should use a pen and paper rather than relying on my phone. One question I did ask was whether I had ET, Polycythaemia vera (PV) or both and the response was that I have a MPN and that what’s they’re treating me for. I didn’t think that was very helpful. Or maybe I’m wrong and it doesn’t matter what I have as long they do what they feel is necessary.
Hi @MikeW. As @Erica said it is only natural to feel nervous. Have you discussed your concerns with your team? Pain relief is available and sedation is available to. Have they said you may need this procedure?
Hi @TanyaBloodCancerUK that for your kj d words and the very helpful advice. Once I’ve gone through it all hopefully I can come up with a plan that will suit both myself and work. Take care.
Hi @Nichola75
I’m jumping the gun a bit here. There hasn’t been any discussion about any future procedures. Having gone through it with my late wife, I’m possibly projecting her experiences onto my situation.
My first bone marrow biopsy in 2017 with 5 local anesthetic was very painful never again!
I had my second one with gas and air as recommended by my CNS and I had my further ones with gas and air.
I could feel the sensation of what was going on and sharp pain if I didn’t keep on top of taking in gas and air
My CNS sat with me and when the painful part was coming encouraged me to take in more gas and air which then sent me off into some far off place
I’m a bit of a crier after the effects of the gas and air
Cup of tea and a biscuit and drive myself home
Oh @Leefer I hope that you will feel perkier after your iron infusion.
Please do let us know how it goes and how you are doing.
Take lots of special care of yourself
Hello all. I’m on Watch and wait with Myelodysplastic syndrome (MDS), diagnosed October '22. Over recent years I’ve had dental problems eg gum infections and abcesses resulting in extraction. These can be symptons of Myelodysplastic syndrome (MDS) and I’m wondering if anyone knows if we are entitled to exemption from dental costs. My dentist is no longer offering NHS treatment - only private. There are no dentists in my area taking on NHS patients. I have no option - go private or go without! I’m worried about the cost of private dental care.
Sending best wishes to everyone.
Angie18
Oh @angie18 interesting question I had similar dental problems after my diagnosis with another blood cancer.
I have to say after the extractions in 2006 and 2 dentures (which took time to get used to) I have not looked back since.
As you there were no NHS dentists in our area so I went private and yes, it cost me a fortune, luckily I was working which made it easier.
Because it was private it never crossed my mind to see if I could get financial help.
I found it worth asking how much my dental care would cost and if I could pay in installments.
The Blood Cancer UK support line might have some thoughts on 0808 2080 888.
Macmillan Cancer support might have some support available.
There is also the Myelodysplastic syndrome (MDS) Support group MDS Patient Support Group: Information & Help for those affected by MDS
I hope others can share their experiences and thoughts.
Please keep posting, dental problems are horrible, look after yourself
Hi @angie18, thank you for your post, and we do hope you’re doing okay? It’s so understandable to worry about these costs, especially in the current climate. It may be the case that you’re able to get help with health costs, including dental care. You can use this tool to check online.
In case it’s helpful, this NHS webpage goes over a few suggestions of what to do if you’re struggling to find an NHS dentist, and may be worth reading over.
You might also find our ‘Blood cancer: money and work’ page helpful. This includes information on other benefits and also financial support. It also contains information on other help you might be able to access, such as one-off grants and help paying bills, in case that’s useful to know. Citizens Advice and Macmillan are also good sources of information. Sometimes hospitals have advisers that can help you apply for any financial support such as benefits you may be entitled to.
I do hope this is somewhat useful. Please don’t hesitate to give us a call if you’d like to talk this through at all (0808 2080 888).
Thanks Erica, for those really helpful suggestions. I have an appointment with haematologist coming up so will run it by them. Will also follow up your other ideas. Paying for treatment in installments would be less of a blow I suppose…might have to go with that. Take care.
Angie18
Hi Erica, What a good idea. I am feeling very isolated as I have been in hospital for almost eight weeks, and have just got my laptop. I had a stupid fall whilst staying with my daughter ans fractured my hip, I spent five and a halh weeks in Queens Medical Centre in Nottingham, The operation was the easy part as the next ten days were a blur. I had an infection and my blood counts went haywire. Luckily every treatment was run by the haematology team. I was later transferred to a hospital nearer to my home and am now under my regular haematology team, A I have Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap, it is a constant battle trying to balance the effects of one treatment against another, I had just reached a satifactory platlet count after 18 months treatment and it is now back over 1,000, . Today, I was told that I can go home on Friday -whoppee !!!
