Bad news/good news

Yes, it’s a true rough road during these times. Let’s look for the steroids do the job and tide him over until treatments starts.  

I do remember the ‘wait’ felt like it lasted forever but once my treatment started the effects were very quick.

Hold on ((hugs))

Thank you, just want him to have some quality of life which he hasn’t at the moment due to all the swelling n tiredness but it’s a new day, the suns shining and I at least hope in 2/3 days time steroids will kick in and the swelling will subside. Will prob take chemo to sort out his tiredness but all small steps

Saffie

Good morning Sadie.

On this blood cancer journey each day is a new day so face each day with renewed optimism, hope and faith that this is moving in the right direction.

When everything went bad I had a small delay from being referred to Heamatology until I got to see the consultant team.......a lost letter and being marked as ‘did not attend’ but my GP was able to overcome this quickly.

But during these few weeks I was living on Tramadol (not a great experience) not sleeping and at times was on my hands and knees on the floor, shacking my head, trying to help the weight of my brick sized growth on my neck move away from the trapped nerves...... the pain was unbearable but once I got the first 15 min blast of chemo it was amazing.

Even some of the staff came in and watched along with my wife as the swelling reducing and after weeks when my jaw was seized - I could actually move my mouth, to the point that I asked for some toast. I was sent home the following day and was able to do the 3hr trip to Edinburgh, to our daughters had some Christmas Dinner two days later.

But that first hit was short lived as it was a quick fix to get me through Christmas so went back a few days after Christmas Day to start my treatment for real.

Hang in there - this can be improved ((hugs))

That is the only thing I can be thankful for in that throughout this lymphoma build up he has not been in pain, unlike you, sounds an even worse but probably just different journey you have been on.

The hospital admission to try and remove some fluid and stabilise his sodium was made worse in that being a bank holiday weekend he was looked after by the medical team and the doctor was absolutely adamant the extreme swelling of everything below the waist and low sodium were nothing to do with the lymphoma.

Luckily, he moved out of the emergency ward and thankfully a Haem Dr appeared to see us yest and explained all the currant symptoms are lymphoma related, and most should resolve after three days of steroids and then get a chemo plan in place

Huge sigh of relieve.

Saffie

Yes, every blood cancer journey is so different even with the same type of Lymphoma and as I had a rare skin Lymphoma that took me on a rather exciting journey - see my profile......actually it would be good if you put some info in your profile as it does help folks looking to help out.

It is very important that his Heam team are consulted at every step.

I have had a number of post treatment admissions over the past years with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, Septics and we always asked for the on call Haematologists to be contacted as there are so many knock on effects and symptoms that a Doctor in a Triage or admissions ward will not understand.

My medical records are now marked “Heamatology to be consulted at all times”

Having had two Stem Cell Transplants just complicates all my health issues and I am still living with a reduced Immune System.... but I am over three years past the point I was told I would most likely not be around, so living life to the full.

Lets look for this all to move in a positive way - quickly xx