Consent

In this world full of litigation and compensation adverts on digital TV channels, it has become ever necessary for the NHS to protect itself from being sued. For a patient, this means that before any procedure, you are required to sign a form to say you understand what is going to happen, and crucially, what could go wrong. 

In My Myeloma history, I have encountered many a consent form. Of course, when I was first introduced to them in August 2012, it did not register in my spaced out mind what they were. The second (I think) one I signed was for my kyphoplasty and I remember the fear of ‘2-3% chance of permanent paralysis’ like it was yesterday. I have consented for every round of treatment, a few of my biopsies, my two PICC lines and the two transplants since. That’s a lot of  carbon paper. At UCH, the most serious procedures come with an A3 consent form resulting in a log of thin white paper shoved into my handbag pending imaginary filing. My medical file gets the top yellow copy.

At University College Hospital, granting consent in my experience, is done on the day the treatment starts. That is not how St Bartholemew’s rolls. For on Monday, five weeks before my provisional Transplant Number 2 date, I sat down and listened to a kind Medically Trained Person reel off everything that can go wrong with the next stage of my treatment. It is not a moment I relished and one I wish I did not need to experience. I am very much in the camp of ‘just get on with it’, in other words, I want to be ignorant. I know that this is my only chance to beat this, what else do I need to know? 

A lot, apparently. 

Whilst I might not want to know percentages and other figures, other people in my life do. I suppose it is an easier way to assess the seriousness of a procedure. Although, facts and figures never truly represent all that is serious about any procedure. For example, nobody ever told me there was a chance that my previous transplants would turn me into a doubting nervous wreck. 

Prior to Monday’s appointment I was told that the recovery period of an allograft is not like that of the autograft. It is unpredictable and long, and I am likely to find this frustrating.  I was told that I will want some Graft vs Host Disease, but not a lot, and I have my fingers crossed for the rash and minor oesophageal problems type of disease, to be treated by steroids and other fun drugs. I hope the latter will bring some weight loss, but that might be negated by the steroids. I digress. After my last trip to St Bart’s, I had also asked Mamma Jones to find out what the chance of me dying from the procedure is. I wanted to know prior to today, so that I did not breakdown in tears in clear evidence that I am lying when I say that I do not care about facts and figures. Previously, I had been told that a full allograft for myeloma has a 40% mortality rate, which I think you’ll agree is rather high. Mamma Jones was told that my impending procedure has a 5% mortality rate, which is much more palatable. 

So that is what I knew from the various conversations I have had about Transplant Number 2. How was it sitting down and having somebody tell me in one go?  Exactly how I imagined.

I had to sign two different forms, one of them twice. The form I signed twice was not on carbon paper, which was disappointing because it is a material that really is a feat in engineering. Alas, I am left with a mere photocopy. 

In medical speak, I am having an Allogeneic Haematopoietic Stem Cell transplant, it says so on the first page. My donor, aka Big Sister is a 10/10 match (score!). In case you wondered, you can have a transplant at a 8/10 match. 

The aim of the procedure? Curative hopefully, but realistically, when one considers the philosophical meaning of ‘curative’, the aim can also be considered palliative. The key part, and one that I knew already, is that nobody knows which camp I am going to fall into. Right now, I am part hope, part realistic and part, I have no got a clue how I will manage my post Allo life.

The process of consent was very much a tick box exercise. Literally a tick box exercise. We, the Medically Trained Person and I, ticked the following boxes to show that I understood the possible short and long term effects. They looked like this:

SHORT TERM
• Nausea and vomiting

• Diarrhoea

• Mucositis 

• Fatigue

• Alopecia

• Immunosuppression

• Infection and Sepsis (particularly viral infection, differing from the concerns during an Auto)

• ITU admission

• Bleeding

• Transfusions

• Pulmonary dysfunction

• Haemorrhagic cystitis

• Veno-occlusive disease

• Nutrition

• Further treatments (DLI, Chemo, HSCT)
• Graft versus host disease in the form of acute skin, liver that may become chronic with affect on lifestyle 
To treat the above with steroids, I may encounter;

• Diabetes

• Myopathy

• Osteoporosis 

• Avascular necrosis 
LATE EFFECTS 
• Infertility (N/A)

• Male impotence (N/A)

• Menopause (N/A)

• Thyroid dysfunction

• Cataracts

• Lung fibrosis

• Psychological difficulties

• Secondary malignancies (aka secondary cancer)

Do not be alarmed. That’s what I tell myself. Do not be alarmed. It’s just the sort of list one will find inside a packet of Paracetamol, the difference being, having a allogeneic stem cell transplant happens less frequently then taking a paracetamol. I do not know about you, but I chow down one of those bad boys at least four times a day. An allogeneic transplant on the otherhand? Once in my lifetime (maybe).

In other words, this is just a list of everything that could happen. Let us put our hands together and say they won’t all happen. Even if some of them do happen, I have been assured that fixing cataracts is next to nothing when one considers what I have already been through.

After all this, all I know for certain is that I will be taking a lot of drugs for a while to manage whatever side effects I get as well as taking medication to help Big Sister’s cells do their thing. If they do not do their thing, I can have a top up. I did not delve any further into what would warrant this nor what it would entail.

Thus far, I have given you no figures, no percentages. I was given those and I’ll pass them on to you, but on the advice I was given on Monday, I urge you to throw them away again. Both good and bad. For if I end up being in the unlucky 70% or 5% or 50%, knowing the statistics of others, will do nothing to benefit nor influence my outcome. Get it? Good. 

• Graft failure <10%

• Cure rate 30-40%

• Acute GvHD 50-60%

• Transplant related mortality (immediate) <5%

• Risk of relapse 50%

• Chronic GvHD 50-60%

That’s it. That’s everything I was told, condensed into a blog and a four page consent form, psychological difficulties and all. Now, all I have to do is get it done. And then wait and wonder and learn. There is a great deal of learning to come. 

EJB x

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3 thoughts on “Consent

  1. Terri J says:

    I wish you all the luck in your journey into Allo transplant. My daughter has been thinking about an Allo also. Her brother is only a 50% match which here in the US they do use at some hospitals( Johns Hopkins, Jefferson in Philly). The statistics we have been given are different than yours, some better but some worse. We find it very frustrating because no one knows what the best thing to do is. Its not like Diabetes where you take your medication, follow diet & you do fine. This is like if you do one thing than you are off the list to try other things or it effects what you can do in the future( all the new things which seem promising that they are working on).
    I know everyone is different but have you been able to talk to anyone who has been through this process that has Myeloma? My daughter & you are about 5 years apart in age so finding someone with Myeloma who has been through an Allo is difficult.
    I will be thinking & praying for you. This is selfish but when you can please share your experiences. As a mother I know what Mama Jones is also experiencing & I will keep her in my thoughts also.

  2. Angie Legge says:

    Hope everything goes well. Your blog is really good food for thought, we do need to ensure informed consent, so people realistically know what they are facing, but I’m not sure many of us ever want to consider those rare and unlikely possibilities.

  3. Cz says:

    My son was diagnosed with Leukemia and had full body and head radiation. He had chemo and a bone marrow transplant with an unrelated donor. He was diagnosed at the age of 23 he is now 31 and had to have all his teeth pulled out and now has dentures because of the radiation. He has chronic graft vs host disease which has turned his skin hard and dis colored and developed neuropathy in his toes and one foot from the graft vs host disease. It hurts him to walk and he is thin and people stare at him because of these things. His wife cheated on him when he became ill with the graft vs host disease and said she didn’t want to take care of a sick person anymore. He has tried to date a few women but after one date they just stop with no explanation. It is very hurtful to him and brings on more depression. I think people need to know that things can turn out well for some transplants but can be devastating for others but still try to have hope.

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