Headaches

Hi @Leefer. Thanks, but all I needed was the facts, and you gave me that admirably. I am not one to wallow or winge. It is what it is, and I will just get on with it. Knowledge is power, so if I am in possession of all there is to know about ET and blood cancers generally then I will be equipped to deal with it as best I can. I am only two months into my diagnosis, and there is a lot to learn about it, and as I said, the doctor isn’t very helpful. I found MPN voice has been quite helpful, as well as this forum.

2 Likes

Morning @Chris1
I found I really do need to drink lots beforehand. If I don’t then my tests are often a disaster. Nine attempts was the record with two butterflies in each hand being the final attempts. I am not at all bothered so it isn’t an issue for me but I can imagine this being a real problem for someone else.
But I really can notice the difference by the amount of water I have had and the time of my appointment. Very early appointments when I haven’t had much chance to get much water on board are of the worse - mid afternoon much better. Keeping warm helps too.

1 Like

Good morning to you too @Jules. Oh poor you. Fortunately, as long as I drink plenty of water before I go to the hospital the needle seems to work first time. I am gradually getting used to having blood tests every month, but yesterday’s experience set me back a bit. Hopefully the next one will be done by someone more experienced. I see you keep chickens and have an allotment. I have kept hens for many years, and also grow a lot of my own veg. I don’t have an allotment any more, but a large garden. I struggle a bit with it nowadays as I also have arthritis and spine problems, but I won’t give in. Take care and merry Christmas.

2 Likes

Good on you Chris

Still the early stages for you …i wish you all the best.

2 Likes

Oh Chris , my poor girls :rooster::rooster::rooster::rooster:just taken them hot porridge and a flask of boiling water their water had frozen solid overnight! They were very thirsty girls !
I love my allotment, I also grow lots of vegetables had the best crop of cucumbers Ive ever had this year must have been all that hot weather. My parsnips for Christmas Day on the other hand are looking a little sorry for themselves.
I really get lots out of my allotment relaxation, exercise, healthy eating, a sense of well being. It is my time to look after myself and for a time forget about my lymphoma. I once lost my phone and had buried it oops- so I now leave
my phone behind so it’s also a very peaceful phone free time.


3 Likes

Hi @Jules. Thanks for the lovely pictures. I haven’t figured out how to do that on here, as I am new to the technology of the smartphone. I find once I am in the garden, I get so absorbed in what I am doing, that for a while I forget all about my cancer. I can recommend it to anyone. It is good therapy as well as being good for us. I see you have hybrid chickens. Those are the ones I always have, as they lay so well. It is hard keeping their water from freezing when it is so cold. The advantage of having them in the garden is that I can melt their water trough several times a day. I am retired though, so I am at home all day to do it. I do love my hens. I was worried when I was first diagnosed and put on Chemo as my immunity was low, so I was worried about infections, but now I have thick gloves and carry on regardless. I have already dug my Christmas parsnips, and put them in the freezer. :+1:

2 Likes

Hi @Jules thanks so much for the photos of your Girls and your allotment, it is always great to hear and see more about each other and what they enjoy and how you relax and exercise and you can eat your healthy produce.
Thanks so much and enjoy.

1 Like

Hi @JoJoflowergirl I have been worried about you and I just wondered how you are doing now?
Be ever so kind to yourself xxx

Hi @Erica

Thank you so much for checking up on me. I haven’t been great TBH. Haven’t felt at all well in myself & seem to be picking one thing up after another. Also developed chronic itching which is supposably linked to my type of cancer. The headaches come & go but when I get one it’s days at a time to the point where it hurts to open my eyes. I hate complaining I really do & takes a lot to kick me down but at the mo it’s getting the better of me. Just doing what I can & not pushing myself like I normally do as I know my body is saying no at the mo. I hope you are ok Erica & looking forward to Christmas. Sending you much love & good Christmas wishes. Thank you again x :cherry_blossom:

3 Likes

Thank you @Chris1 i completely get that as I’ve had 3 surgeries to my neck & still suffer ongoing pain & have often wondered before my C diagnoses if it was something else causing them. They really do get on top of you & can make life tough. I have cervical & lumber spine issues & am due another op in new year to lower spine. I just hope my current state of health doesn’t postpone things. Thanks for your reply. Wishing you a very happy Christmas :cherry_blossom:

1 Like

Do your medical team know how you are suffering @JoJoflowergirl ?
Perhaps it might help to write each symptom down, the severity and the impact on your life.
And then be ‘pleasantly assertive’ when you see if they can suggest anything.
I have also got scoliosis of my upper spine, and I have got 7-8 healed and compressed fractures of my lower spinal vertebrae and I have lost 5in in height.
I have not had any ops on my spine though.
Sending loads of medicinal hugs and be ever so kind to yourself xxxx

Hi @JoJoflowergirl. I am thinking of you and hope that you are feeling a bit better today. Don’t worry about complaining. We are all in this together, so complain away. We are here to listen and hopefully help you through your low times. I know how debilitating chronic pain can be, and it will wear down even the strongest of us. Try to keep positive about your forthcoming operation. One day at a time, is enough to worry about while you are struggling to feel well. Try and get more rest if you can, and don’t push yourself too hard. Walking helps to raise the endorphins, which will help with pain levels. Take care, and keep your chin up.

2 Likes

Hi Jo Jo Flowergirl (Nice handle by the way)

I don’t have what you have, but I do get headaches, and I do not know if they are connected with my Chronic lymphocytic leukaemia (CLL).

For what it’s worth, I’m a great believer in experimentation, regarding my condition, and I try anything reasonable.

I have been an advocate of long slow breathing for about three years now, and I have, tried various variations. I have researched this, and their is 'Science and Credible Medical research to support it…

Apart from, the calming, and energy producing effects, I have noticed that if I am in pain, during my Breathing Sessions, if I persevere, the pain recedes, or goes. This applies to headaches. It may not work for everyone, but there would be no harm in trying it out.

Hope this helps, and I do hope you find relief soon. All the best. Ron.

1 Like

I’m so grateful to have you all & your kind support. I hope you are all doing as well as can be. I haven’t come on here to moan but just to let you all know I’m still not good & yesterday got my surgery date for my lower spine to be sorted 31 January. It’s kind of scary as didn’t expect it so soon & know it’s a big one but hey ho will try to keep positive. Just hoping that there are no problems with my surgeon liaising with my haematologist as it’s different hospitals & we all know how hard communication can be amongst them. Wishing you all much love & festive wishes xx :cherry_blossom:

4 Likes

I hope all goes well for you.

Not to long to wait which is good

Let us know how it goes👍

2 Likes

Hi @JoJoflowergirl. That is such good news that you have a date for your operation. I can understand your concern about the two hospitals liaising. My situation was similar when I had my neurosurgery back in 2014. I live on an island with only one hospital which doesn’t do neurosurgery, so they had to liaise with a mainland hospital, and it was mostly straightforward. The only glitch was my aftercare physio which got delayed due to admin errors. Did you have blood cancer when you had your previous ops? If so they should have your haematology records already. If they don’t, I would be prepared to be politely assertive and make sure everyone knows about your blood cancer. I hope you are feeling ok today, and I wish you a happy and relaxing Christmas. Take care of yourself, and stay positive. I will be thinking of you.

2 Likes

Hi @Chris1
Thank you so much! No I never had blood cancer when I had my other surgeries. I have informed them & so far they have liaised well so hoping it will continue. I’ve felt ok today & but more upbeat which is good. Just need to stay like it & get through the next few days. Thank you for sharing your experience with me & hope u have a lovely Christmas. :cherry_blossom:

3 Likes

Hi @JoJoflowergirl If I have to be treated by another hospital department, GP, optician, dentist etc. I always take responsibility for informing them of my Chronic lymphocytic leukaemia (CLL), medications and allergies.
When I had multiple teeth out my haematologist, GP and dentist all worked together and I had antibiotics before, during and afterwards, I was really impressed that I organised it.
We are here for you however you are feeling, be kind to yourself

2 Likes