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Non-Hodgkin lymphoma

Affected by NHL? Join this group to share experiences and ask questions to people who understand what you're going through.

While waiting to see the consultant tomorrow- pains

Posted by

i’m writing this in bed, lying awake- I have to go to work tomorrow, so will be up about 7pm.

Every day is bringing unwelcome changes to my body. It is like my nervous system has gone on the blink.

my fingers on my left hand ache ( I’m left handed) and my hand is  a bit numb, my right hand feels stiff but not as painful . My right arm below the elbow is aching and I have had a few cramps in my foot and some stabbing pains in my legs, aches in my thighs.

So feel aching  generally- if I hadn’t had any blood results they d say I was getting a rheumatoid arthritis! I don’t have any sweats or headache, my neck is a bit stiff on the right, but I can’t feel

A swollen stomach -  and no hard lumps that I can feel and a few pains now and then there. Lots of Petechiae  coming up some pinprick size and others larger and raised,more developing  - mostly on my torso but now on my upper arms, and my thighs - though  not that many there yet). 

i had some blood taken yesterday and briefly saw my doc - worried about my blood not clotting - hence the small blood spots popping up.No itching as such.

Plus Tinnitus in my left ear. I’ve been getting this on and off for a few months and trying to ignore it.

I’ve bought a diary to record daily changes.

I’m hoping the consultant can arrange whatever tests I need as soon as possible so I know what my options are. My flow cytometry indicates an indolent B cell- but these changes are coming on quickly- or so it seems to me. Indications are LPL or MZL. With the pains and numbness - is it affecting my nerves? Is the numbness reversible? Will it get a lot worse?what other nasty symptoms will emerge? I’m reluctant to take anything other than paracetamol until I have a full diagnosis.

ive not said anything at work - except to say I have had to go for a few tests. I’m well enough to work at present- I have a desk job and I enjoy it. When to say that I may need time off for treatment?

Igm came up negative- I think this is the protein that makes your blood thick if you have high levels.

it helps to list these symptoms and I’m sure my recent blood results will indicate quite a few changes since it was done about a month ago.

Oh the uncertainty of it all....I think that is the worst part.

Posted by

Good morning Michelle, sleep can be indeed be a challenge but you must do your best to try and park the thoughts that come at silly o'clock as all you are doing is making yourself exhausted...... been there - had the 'T' shirt.

As I am typing this an 'event' reminder came up on my computer screen for tomorrow - I will have been in remission for three years tomorrow.... from a condition that I was told way back that I would never see remission........so be encouraged - I am.

"the pains and numbness - is it affecting my nerves? Is the numbness reversible? Will it get a lot worse? what other nasty symptoms will emerge? I’m reluctant to take anything other than paracetamol until I have a full diagnosis"

No simple answer to those questions :( from my journey my brick sized growth on my neck did trap some nerves and damage muscle so it has taken many years to overcome most of it.....still have a little damage in my neck but its something I work through...... in fact it made me go to an exercise class - so cloud silver lining comes to mind.

I had bad numbness in my hands, more to do with the treatments but most of this has gone - I can play my guitar now :)

Nasty symptoms?..... for some yes, but for a much higher percentage no.

My GP kept a very close eye on me until we had a clear diagnosis and care was handed over to my Heamatology team. He always said "There are no prizes for being brave and putting up with pain when we have various levels of pain meds that can help this until treatment starts".........I very quickly agreed with him once the mass grew round my neck nerves.........but this is all in the past, yes, not a great time, but it was a means to an end.

Stress and worry? stress and worry will have a large negative effect on your body and a high percentage of the things you are feeling most likely are stress related and lack of sleep. One of the drugs I was given in the early days killed off a good part of my hearing and I am now left with the sound of the Hogwarts Express sitting at the station 24/7 lol......... I do have some sleeping meds to take when I feel I am not getting enough sleep but through the years I have been able to tune the noise out.........and if I don't have my hearing aids in its a good excuse to ignore my wife - don't tell her.

You sound as though you have a good understanding of medical stuff or you have lived on Dr Google? I never did ask for the real details about my bloods, in fact, over all the years i never had bad blood results until I actually started treatment. Eventually I was looking at my counts to find out if I needed yet another blood transfusion, but on the whole I had more to deal with just keeping the whirlwind in the brain under control than thinking about stuff my team had completely under control.

My great GP of 28 years was like a good friend and even now after he retired a few years back we meet up for coffee and I was even designing a new roof his family croft on the west of scotland.

He was very honest and to the point........ one phrase that sticks in my mind, and in the very early days it helped me through the years....... "Mike - all the worry and stress in the world will make no difference to what your tests will say and what treatment journey you will end up go on....... but worry and stress WILL pull you down and make going through treatment that much harder"........ great and true words that set me up for some long and hard years.

The next time you are not sleeping come on to the Community and try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names like .

Telling your work? In the early days when I was still working in Education I was totally open with my line manager as they did have to make reasonable adjustments to my teaching schedule as I was at hospital three times a week for months. I was retired before the full on treatments started and there was no way that I could have worked through my treatment  but I have to say not many folks go on the same journey as a few of us have to go on.

You may have to talk with your line manager or your HR department as they may need to make adjustments to cover you if and when you are off work. Its not an easy discussion but on the h=whole most employers are good and accommodating.

Keep posting as we are around to help as best as we can. Talking with folks can help so you may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

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Up at 7pm you must sleep all day