Wow Robson , what a rollercoaster! Indeed the steroids are making me impossible to live with. I feel so bad for my husband but he is trying really hard to understand and has been a great support. That’s good your taste haven’t been effected. Still early days for me so we will see if that changes! Oh I didn’t realise they would stop immunosuppressants whilst having ECP. I know there is side effects from this too but anything has to be better than steroids. Wish you all the bestxx
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All I can say is that I am lucky in my marriage that it was me that got sick, because there is no way that I could live with me if the boot was on the other foot. Joking aside I have met many along the way who have lost their jobs, their partners and even their homes.
Ignoring every other single aspect of my relationship it remains that I cannot fight this on my own, so compromises must be made and I end up doing a lot of things I don’t really want to and she ends up not doing many things she would like to. None of this is unique but it is worth stating the cancer really does effect everyone it touches and not just the person with the diagnosis.
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Starting ECP does not mean that immuno-suppressants are automatically stopped. It is just that ECP offers its own suppression without the side effects of the drugs- so enabling those same drugs to be reduced or stopped.
On that subject Drs like prescribing drugs, in my experience it is up to you to question your consultant at clinic appointments if you really do need to be taking all these chemicals. You will be surprised with the answer that comes back, suggesting you try reducing and see what happens. It usually goes along the lines of “your a sensible chap who knows his own body…”
It is up to you to be proactive with your treatment and take the lead (sensibly) - hence the term “professional patient” that our team uses.
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Thanks robson. I have also been talking to them about what is completely nesessary drug wise. Especially when they decided to put me back on so many when the gvhd kicked in. That’s great to hear your wife is such a big support to you and you are able to see how you have been. I keep telling my husband just wait until I’m off the steroids things will get better 
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Okay. Sorry to preach to the converted.
Things will get better but there may also be some pretty nasty bumps on the way that you must try and anticipate to mitigate.
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It’s difficult. On the one hand I want people to treat me as normally as possible but I also don’t want people to think that it’s gone away and nobody needs to mention it again. I get regular attacks of joint pains which are too frequent to not be in some way connected. I’ve escaped relatively unscathed from most of the symptoms though. When people stop talking about it then you kind of get to a lonely place and spend a lot of time with our own thoughts dwelling on things. I’ve been completely open about my illness with everyone and happy to talk about it whenever anyone wanted to but I guess it’s not exactly party conversation 
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Very true Franco.
It is an unfortunate fact that as a cancer survivor you remind others of their own mortality; not surprisingly perhaps, a reminder that many do not welcome. Cancer has cost me several of my old friends (not very good ones I hear you say!)
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Here we go again! Normality.
Sitting in the surgical admissions lounge waiting to be called. I am seriously not looking forward to this.
The biopsy on the long term GVHD sore on my lower lip proved it to be cancerous, so now within just 4 weeks of me calling it in I go under the knife.
I just wish that this gift that keeps on giving would skip me so I can get on with life. We’ve a trip booked for my wife’s big 60 end of next week. Will I be up to going? Or letting the side down as usual? We shall have to wait and see. Sick of it 
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I’m so sorry to hear this. I hope you both still manage to get away if anyone needs a break it’s you. X
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Hi Robson, you describe your circumstances so well and I am sure many of us know them all too well. Let us know how your appointment goes and how you are thinking and feeling. Also tell us more about your planned trip for your wife’s 60th, is there a back up plan and if you both go, we want to know all about it. Fingers crossed for you and wish your wife a very happy birthday from us all.
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Oh cancer, the gift that keeps on giving! I am sorry to hear of your latest problem, but I guess that it is a good thing that you are being seen so quickly.I hope that the removal is not too extensive.
Fingers crossed that you are able to get away next week, and I hope you are able to celebrate your wife’s 60th in style. Bath is a beautiful place to wander round.
Let us know how everything goes
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In the discharge room waiting for pharmacy. Are there any hospital trusts out there where pharmacy is not the bottleneck? Any?
I put my life back into their hands, and under local anaesthetic (thanks to lung damage from GVHD ) the surgeon performed a “lip wedge”, cutting out an area from my bottom lip the size of the top joint of a thumb - I was pleased to see this C swimming in a pot of alcohol! So am I cancer free again now? The photos of (that I did ask to see) were pretty gruesome.
I think it is time to grow a beard again.
I’ll sign off now as the pain (2 hours post opp) is really kicking in.
Thanks for all your support.
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Wow. You had the energy to share your thoughts after that ordeal, I’m in awe. Sounds horrendous. You’re really overdue some good luck. Hope it comes soon. Beards are good!
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Hi @Robson. How are you feeling today? I hope the painkillers are working. Hospital pharmacies take ages to dispense medication. The problem is that they are dispensing for the whole hospital, and discharges are last on the list. Many was the time when I was an inpatient, got discharged in the morning, but still was waiting for my bag of goodies at 8pm! On chemo days it was more straightforward as my consultant had put in his request early, so got meds on my way out.
A beard sounds a good way to go. What is the plan of action now? Any further treatment? The most pressing question is…Is the trip to Bath still on? Best wishes to you and your family
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Much better thanks 
The 2 weeks between diagnosis and the opp induced a massive wobble the day/night before - Zopiclone from my vast drug cupboard saved the night at least (plus a couple of pints).
Despite extreme discomfort, immediately post opp my irrepressible positivity started to return.
I maxed out on Ibuprofen and Co-codamol plus Zopiclone ( just like you are not supposed to!) I woke at 4 with my chin on fire, repeated the dose and that’s the last painkillers I have taken.
So now I am sitting in my lounge in the winter sunshine, drinking hot chocolate through a straw (well a mug of hot milk with a bar of Cadburys in it) listening to Frampton Comes Alive.
Life is good #livingthedream
A question Louise, where did you get “the trip to Bath” from?
Try New York LOL! (well not too loud or I’ll split my stitches 
)
And yes I can confirm as of today, I am up for it 
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Oops! Senior moment! A friend on the forum had told me of plans to go to Bath. Not much difference between that and New York! LOL!!!
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I am so glad the concoction of painkillers helped, although I suppose I should warn others that we would not recommend exceeding the stated doses, mixing meds that should not be
mixed and probably the alcohol would not be advised either !!!
However I think we can both say that personally your hot chocolate recipe, through a straw, and listening to Frampton Comes Alive works wonders.
Due to multi infections I had a whole lot of teeth removed at once a few years back and it was the one example of agencies working together. There was a specialist dentist, my GP and my haematology consultant and I was put on a course of antibiotics before and after and a booster antibiotic during the extractions. It was also done under local anaesthetic and it was like a comedy sketch because I swear the dentist nearly had a foot on my chest at one time and he ended up covered in blood. All I enjoyed consuming was tinned custard and ice cream for ages. My husband was dispatched to replenish my tinned custard supply and he returned with a jar of birds powdered custard, trust me the custard did not taste the same. When I went back to work I was relegated to the office because the bruising on my face and neck was so bad. A couple of weeks later we went to the Henley Regatta and my first solid food was fish and chips, which I really fancied, eating it was absolute agony, but worth it. Sorry I have waffled on a bit. Take lots of care and keep posting how you are.
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Dear Erica, I perceive that you interpret my previous post as being a bit gung ho?
Whilst I readily accept that taking the oh so addictive but occasionally useful sleeping tablets with alcohol is not advised, we are not talking about a skinful here! Indeed following my blood cancer diagnosis I stopped drinking everything apart from beer, and then never more than 3 pints at a time. I just don’t want anymore than that.
Regarding the painkillers that I took post operation, I attach “The pain ladder” guidance from the NHS that I was discharged with. I was on Step 3, only substituting the recommended DF118s with Co-codamol (availability). I did not exceed the stated doses or even approach the 24 hour limits.
What I was trying to express was a can do, get on with it attitude that all us “professional patients” must have to survive.
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As you say we are professional patients and we just get on with it, it is now our new normal, which definitely is not the same as getting back to normal. Have no fear I was not concerned about you abusing as opposed to using pain medication. Thanks for the NHS guidelines. It’s interesting how many of us have changed our drinking habits post diagnosis. We both appear to have changed to hot chocolate. Let us know how your op is healing, the beard growing and New York plans.
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Hi Mrs Griff
Our son has acute lymphoblastic leukaemia and is having his SCT…Friday 14th February, our daughter is the donor. It’s such a awful, scary time.
I just want normal back 
Hayley
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