Let's see if we can collect some helpful information and real life experience that we can signpost folks to after they have come home from their Stem Cell Transplant.
A couple of useful things I found were:
My Consultant told me that going through treatments like these was like doing a boxing match and a marathon every day over the months of treatments and this was done without any training.
Think doing the London Marathon without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality - it took me a good 2 years and I was 60 at the start of my recuperation.
Yes some folks bounce back quickly post treatment but more than often folks take a considerable amount of time to recover. 6 months is the average recovery time…… at 3 months post my second SCT I was just out of my wheelchair and able to do a few steps with my walking sticks…. I was not able to feed myself due to my bad Peripheral Neuropathy and even then I was not eating much……. Your body has been through far more then you imagine so be kind to yourself, give yourself a break as you are doing good and honestly this will pass.
My consultant also gave me this basic scale for classifying where I was on the recover journey.
50% = when in the hospital going through the transplant process.
60% = significant medical/physical issues that do not allow any physical activity apart from a shower and short walk and not able to prepaid food. Reliant of others for preparation of food.
70% = Significant medical/physical issues that do not allow any specific physical activity (not including a shower) but short walks and making a pot of soup. Will nap after the task.
80% = Physical issues that limits you to one activity per day. (not including shower) Able to prepare some food for a couple of people but most likely still taking a nap after activities.
90% = Some physical issues remaining (weak legs etc) but able to do a few tasks and may not be fully fit for permanent work but could do part time work. May have to .take a nap after doing tasks or work.
100% = No physical after effects and able to do multiple tasks including being back to work.
She also said on average the recovery is about 6 months with your recovery improving about 10% per month post SCT
A web page by the Anthony Nolan Trust - The First year post SCT (link)
A web document by Dr Peter Harvey - Life after Treatment (link)
((hugs)) to your lass moomy.
I love getting out and about on a frosty day.....big coat, hat and gloves - great .
We have had a blanket of snow for the past 5 days - just beautiful so I think I am well past last weeks infection to get some air.
I thought my immunoglobulin fix last winter would get me through this winter....... did not factor in four under 7 granddaughters willing to share everything with granddad lol x
I thought I would add this info I shared on one of our other Lymphoma Forums this week.
Over the past 3 winters I have been admitted to hospital 5 times (30+ days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x3, Septicaemia x2 and GvHD.
We learned a lot from our very first A&E visit three years back.
We turned up at A&E on a Friday at 11.00 pm and was put in a side room once we explained about my medical history....... this room also had lots of kids toys in it.......so it was the place where children could go to play..... so what was hanging around?
As a 'walk in' to A&E (In Scotland) you will normally be seen by a duty GP first and as you imagine most people are sent packing and don't get through to the treatment areas...... but it can take time to be seen.
This GP gave me a check over, I had a fluctuating temperature and we knew there was an issue but he sent me packing........36 hrs later I was blue lighted back in with a temperature of over 40 degrees, Septicaemia and Pneumonia!!
I was quickly taken through A&E along to General Admissions then up to Heamatology and after a week I was out. But the Heamatology Department were furious as this should not have happened as I should have went straight up to them. A review was done on general cancer admissions........ basically I had seen a locum GP who did not understand the protocol :(
We now have a standard system we follow for getting me a hospital admission.
We have all the gadgets at home so we can do a full Obs so we can have this info at hand.
Our Heamatology department told us NOT to turn up at A&E (unless it was life threatening) but to call 111.
My file is Red Flagged so from the point of the start of the call they understand that we know what we are talking about and this is available where ever I am in Scotland.
We give them the details including the Obs and 5-10 mins later we get a call back from a clinical specialist.
They will contact our local Hospital and book me straight into either General Admissions (missing out A&E) or straight to Heamatology if a bed is available. If required they will organise an ambulance but as we are only 10mins from the hospital we normally use the car as this is much quicker.
We have a 'grab bag' ready all the time with everything I need for admission.... x2 short sleeve tops and x2 PJ bottoms as once you are on two cannulas for Antibiotics and Fluids it is very easy to have an accident when the bowels move and you are out of it :( ........ soap bag, electric shaver, spare phone charger, one box each of all my meds, spare hearing aid batteries, slippers........
My iPhone has all my Emergency Information available through the Passcode Screen showing my *Medical ID information. This is very important if we are away from home (out of Scotland) as this information also contains info about me being at risk from Transfusion Associated GvHD so if i need blood products these need to be Gamma Irradiated. it also contains the names and contact number for all my consultants.
The longest its taken from calling 111 to being on IV is about 60mins the fastest 30 mins.
"Those who fail to learn from the past are doomed to repeat it" as the great Winston Churchill once said :)
Made me laugh Yvonne.. all the time they say put in weight so you eat everything and then you hit your perfect weight... and then you just keep on putting on weight regardless lol.
Now I want to lose at least 1 1/2 stone!
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
Some gental ((hugs)) I remember thinking that it was great that I was back to my teenage waste size...... but once everything levelled out I am just about back to my pre treatment size.
As bad as GvHD can be, it does show the fight for supremacy in your body is still going on so let’s look for your new you to win this battle and for life to settle down xx
