Feeling very down - horrendous recurring headaches - just want to die - other issues - stenosis and compression of foraminal nerves in lower spine - have had previous major spinal surgery now awaiting injection treatment - two knee replacements and awaiting surgery for shoulder op. A couple of weeks ago after flu jab not sure its coincidental my inner arm from my elbow to wrist has lost sensation - a bit like numbness when you go to dentist and it’s wearing off but its permanently there. I’m sorry I’m moaning but I have had enough yes I have good days but they are few - we have recently moved to country - and I should be enjoying my time - lots of decorating to do but no strength to do it. The headaches the bone pain are really getting me down
Oh @Jola13 you have so much going on at the moment and you have recently moved to the country as well.
Thanks so much for having the courage to post your really honest post
I did not feel you were moaning you were just saying how it is for you at the moment.
Firstly the Blood Cancer UK support line is there for you on 0808 2080 888.
Do you have any support you say ‘we’ have recently moved?
Have you moved away from friends etc?
If you were to need them The Samaritans are there for you on 116 123
I’ve been thinking and I get a great low after moving, although I am also happy to have moved, conflicting feelings.
As for all your medical problems and debilitating symptoms have you had to move your medical facilities as well?
Perhaps a visit to your (new) GP might help you too.
Perhaps tell them as you have in your post to us.
You are part of our forum family and be ever so kind to yourself and look after yourself and please do keep posting how you are doing
Dear @Jola13
We have read your post and really wanted to check that you were safe as your words were very concerning? Do you have anyone at home with you to help manage your pain and support you? We can hear that you are experiencing extreme pain and want to encourage you, like @Erica has done in her post, to talk to your GP or your treatment team as soon as possible. If your pain is unmanageable I would suggested calling 111 or 999 to get immediate help.
If you would like to call us on the Blood Cancer UK support line is there for you on 0808 2080 888.
Please do ask for help in managing your pain as it sounds extremely overwhelming.
Take good care
Gemma
Hi Erica Thank you -we are still with our old GP in Harrow plus the Haemo in Harrow too. I was going to call my specialist nurse today but had to vent sorry. Am lying in bed in our RV parked in drive as house is not ready. Only kitchen and lounge is ok. We were excited about moving away from London and it was a long time coming. Finances to refurbish were hit by complicated sale and let downs so everything is taking time. We had to apply for a lifetime mortgage. So lots going on. I had to take a Maxalt for my headpain. I will send a text for my nurse to call me xxxx
Oh @Jola13 wow, you really have got so much on your plate.
I cannot imagine what it is like for you living in your RV parked on the drive of your new house.
People often do not talk about financial issues, but for me when they are issues I get very scared.
I also do not deal with what personally stresses me well since my diagnosis, it gets all too much and my fatigue sets in.
Please do not apologise to me for not calling your specialist nurse, you can only take on so much.
@GemmaBloodCancerUK has given you a great response, be ever so kind to yourself and please do keep posting.
Hi Erica
Spoke with Nurse he told me To go to A & E which I will do tomorrow as the pain should be more controlled. The head pain needs to be checked out to rule out a bleed. I will go tomorrow morning now. Yes I am the same with financial things but tend to blot them out, as I would spiral out of control emotionally. We will get there - I just need to get this pain under control. Have a good weekend.
Good idea to go to A&E @Jola13 please do let us know how you get on.
Perhaps if it gets worse go to A&E asap.
Be kind to yourself
Dear @Jola13,
I just wanted to check in and see how you were?
I am so glad you managed to speak to the nurses, I do hope your visit to A&E went as well as it could and you have got some help and support? Do let us know how you got on?
We are here for support should you need us, our number is 0808 2080 888.
Best Wishes,
Heidi J (Support Services Nurse)
Hi Heidi
I am OK, as best as I can feel. I have such a multitude of things going on that I don’t know what’s affecting what, at any given time. Burning sensations in my joints, together with all the aches are a constant - I am tired all the time but try to keep going, I don’t sleep very well am up most of the night I can’t sleep on my left side due to the pain from the stenosis in spine and my right side is affected by my shoulder which is due to be operated on. I take Gabapentin, Arthrotec, Alluprinol, Aspirin, Sertraline, Zopiclone, Codeine, Statins, Omeprazole, Tibolone, Paracetamol, preventative remedies for my Lower bowel to prevent inflammation as I had a burst abscess on my sigmoid. and of course Hydrea for the blood cancer. I wish I had a day without all of these meds I dread to think what they are doing to my liver, although all my blood appears OK.
I did not go to A&E as I was so tired. This Thursday I am in London to see the orthopaedic team about my shoulder and spine and will discuss the new numbness in my arm.
I will update you on Friday. Thanks for caring Jola x
Hi @Jola13 sorry to hear that you did not get to A&E on Monday.
It helps me to have everything clearly written out before appointments, all my medical stuff plus fears, questions and practicalities, it takes some of the stress away for me.
Really look after yourself, we are very unique complex beings.
Yes, please update us on Friday, we do care.
Hi Erica,
Sorry for the delay in response. I have finally got a date for a procedure on my spine - a diagnostic nerve block. it appears I will need to have a complex spine operation. L-1 -L2 - L-2- L3 L3-L4 (L4-S1 incl are already fused. )
C5-6 and C6-7 are fused C3-4 has crumbled and T6-7 is compressed.
My consultant is not surprised that I am in a lot of pain, am still waiting for the date for my shoulder op. I had one of those headaches yesterday stayed in bed all day. Much better today. Hope you are well jola
Oh @Jola13 I really feel for you.
I am glad that you have had a better day today.
I hope you get a date for your procedure soon.
Please do keep posting and really be kind to yourself.
HI Erica
Just had my 3 monthly check with Haemo my platelets are up - nearly 600 - my Doc has said to see him on Dec 2nd - to discuss a change of meds, as I’m having all these reactions. Ropeg injection once a week instead of Hydrea. or Interferon or Anegralide but there is low stock at the moment. The Ropeg is new to the hospital and arriving in the next couple of weeks.
Any info on these? would be much appreciated. Jola x
Hi @Jola13 I will copy your post to the Blood Cancer UK nurses for you, @BloodCancerUK_Nurses
x
Thanks so much x
Hello @Jola13
I hope you’re doing ok. Reading through the thread it seems you’ve had a lot happening over the last month or two.
You’ve said that you have an appointment on the 2nd December with the Haem team, so do make sure to write out any questions you have and take them along.
Yes, you’re right, the Ropeg (aka Besremi) is new in the UK, it is to replace another Interferon treatment known as Pegasus. We do have some information on why this drug is now available here: MPNnews/pegasys-shortage Your consultant will be able to discuss the various doses and frequency of a new treatment once this is decided with you, as this can be very individual based on your past medical history and blood test results. The main differences to note though are that Interferons are injections and not tablets, and they also work in a different way to hydroxycarbamide when controlling MPNs. Side effects vary from person to person, but on the whole I think interferons are generally well tolerated. Again, discussing your individual health history with your team is important. For Besremi (Ropeg) you need to have good cardiac, liver and kidney function, as well as being cautious if the patient has a history of severe psychiatric disorders.
If you want to talk through any thing else about the different treatment types, or you have any other questions, you can call our support line. It may be easier to be more specific on what you’d like to know over the phone and we’d be more than happy to speak with you: 0808 2080 888
Take care, Heidi.
Hi Heidi
Thank you for this info it is tough at the moment spending another day in bed another headache finally slept most of day surrounded by my 9 cats. I will call when I feel up to it.
Best
Jola Denby-Ashe
No rush to call us, just when you feel able, if you want to.
Take care of yourself and if the headaches continue then do push for a sooner appointment.
Best wishes, Heidi.