BODY CHANGES

Hi Wendy, totally get your thoughts about the GP surgery, it’s the same with going into hospital clinics.

There is always a chance of picking up a bug especially in a GP surgery as it is full of sick people ;)

I would always go with clean handkerchief that had VIck or Olbas in it, over my mouth and nose. But my GP surgery were great and always arranged that I was taken immediately, even although they may have been running behind as they understood the risks - give the surgery a call.

My Heamatology and SCT Clinics actually had dedicated ‘clean’ rooms for those who were more at risk so we did not have to sit in the crowd.

My skin issues did not start until day 85 to 150 but creams did the trick for me.

You are doing great. 

((Hugs))

Actually, looking back. Two of my five stays in hospital post SCT can be connected to catching infections from other people including my granddaughter - it’s just a lottery and some folks go though post SCT with no infections - but the average is 2 hospital admissions in the first year post SCT.

If I have to go to the GP - which I try to avoid - I am let in through the back door and sit in an empty room until my appointment.  My consultant has told me to refuse to sit in the waiting room and insist on being kept separate. 

My immune system is still very weak and I am still not revaccinated, 21 months post allo.  I still wear a mask if I go into places that are busy with people and only rarely go out to eat if I have rung ahead, explained and asked if they can make arrangements - as far as possible - to keep me away from other people.   Invariably this has been accommodated with sensitivity.   I carry wipes to wipe supermarket trollies and dont touch chip and pin machines.  I wash my hands frequently and carry antiseptic gel. 

Fabulous service at the new Terrace Restaurant at RHS Wisley on Thursday.   There is space between tables anyway, but they steered newcomers to the restaurant away from tables near me and reserved me a table tucked out of the way.  They explained that they had cleaned the table extra carefully for me, too.  Five stars for them! 

I have not caught a single infection since my allo - other than one cold that I caught, ironically, while I was still a patient on the transplant unit and the flaming virus hung around, but  without any symptoms, for 11 months. 

Hi, thanks for the reply. The receptionist at my GP has said that I will be able to sit in the interview room whilst waiting for my appointment, away from other patients. I am now suffering from painful aches at the top of both arms. I am lucky to not have any infections since my SCT which is six months ago now, but I seem to be getting quite a few side effects and only now when I have such a lot of time on my hands am I feeling the mental effects and cry at the drop of a hat. I am definetly stuck in the "why me" zone. It doesnt help that I have not had an easy life and have the most disfunctional family ever. I have four siblings, two of whom are full siblings but due to their self inflicted problems, neither were deemed suitable to become my SCT donor. They dont even know as I never mentioned it, the doctors couldnt believe it. I am so angry that I have decided to keep away from family members and all their problems. I am sorry to rattle on but am lucky to have a lot of true friends who I can rely on, and my own immediate family, husband and two children, who have been fantastic. I have all my fingers and toes crossed that we come out of this and carry on enjoying life.

Wendy

Good morning Wendy, the SCT journey does indeed bring along so many issues and for some, makes us reflect on ‘life’ and that includes everything that has happened that had brought us to this point in time.

You have been through a life changing process, a mental battle and physical struggle. Even being 6 months post you would think that you should be moving on ‘quicker’ but for most, this tends not the case.

So sorry to hear about your family struggles and the pain this has brought but I am so pleased that you are surrounded by a loving family.

You may have seen this in our ongoing thread Life after a SCT - A Survivor's Guide

My head SCT Consultant told me that going through a SCT was like doing a boxing match and a marathon every day I was in hospital and this was done without any training

She also gave me a 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.

((hugs))

Hi Wendy,

Personally I found the post SCT period the worst from a mental perspective so please don’t think you are alone in that. I was having some complications and was quite frankly fed up after 18 months of intensive treatment. As to the “why me” question, I think it is important to allow yourself to go through a grieving process, to be kind to yourself in allowing yourself to acknowledge the bad stuff about your current situation and let those thoughts out in order to ultimately let them go.

It might take a long time and you should let that process take as long as it needs to. There will then probably come a time when you’ve given yourself time to process all those emotions, that you might recognize a time when you want to take back control of your life, so then I would advise to ask yourself “why not me”. Life comes in many guises, some of them more difficult than others - we each have been given our own unique path to follow and I believe there is beauty and joy even in the most difficult of paths. 

For me, it took quite a while, perhaps a couple of years, before I could process the thoughts I was having, and work out a way to take things forward with what was left in front of me on my unique path. But I believe the way forward is always there within all of us, it might just take a bit of time to find it.

Greg

Wendy, I do love how our little SCT Community can talk from their own first hand experiences, how we dealt with our journey and what worked for us.

I love Greg's prospective on posts as he, in many ways has been on the same SCT Rollercoaster as us all but at the same time he and the rest of us have experienced different facets that SCT can bring...... this is a great strength of being in Community.

I find I will always talk very practically - but my main battle has been the long term physical challenges. I did not have much mental issues to deal with and being a life long, very pragmatic person it was "tomorrow is a new day - move on"

You are doing great ((hugs))