Preparation I

And so, my preparation has started. My personal preparation really started last Friday, when after a number of identical conversations, I took the bull by the horns and sent an email.* And that, is all I want to say about that. For now.

The Transplant Plan, 5th July 2013, 13:06

Greetings All,

This email, may be somewhat premature as the Medically Trained People are yet to confirm with absolute certainty that I will be going into hospital in 11 days time, so I am probably tempting fate, but having weighed up the pros and cons of exposing you to The Plan, the pros won out. Mainly, and I mean this with all care and respect, so I do not have to have the same conversation with everybody I come into contact with over the next week.

First things first, some of the detail is still a bit hazy and I need to get further clarification from my CNS about it, but what I do know, goes something like this;

Before that though, you need to know that the timescales are all estimates, but everything is dependent on my bloods, how quickly the chemo takes hold, and how quickly I recover.

Tuesday 16 July
I am to be in the Macmillan Cancer Centre by 08:45hrs, luggage and all. On that day, I will get a PICC line (semi permanent line in my arm, to save having cannulas every other day). Once the PICC is in, I will be given the chemotherapy. During this time, I will be staying in Ambulatory Care, staying in a hotel called The Cotton Rooms on University Street, and getting my treatment in the cancer centre. I will only be allowed to travel back and forth between the two. On the 17th, I get the new stem cells.

They estimate that I will be in Ambi Care for 3-4 days before I become too poorly. Once that happens, I will move into the tower.

In the tower, I will be located on the 13th or 16th floor and I will know not which, until I am in there, I have requested the former for the wifi. Again, they cannot tell me how long I will be in there, but they estimate 3-4 weeks.

For the first week, after I am in hospital, I will be quite ill. I am talking, shitting my pants sort of ill. From what I hear, the side effects are such that I will not have the energy to see people nor speak to them, however, I am going to play this by ear, because if I am going to have to be in a room for that length of time, without moving (near the end, I will be allowed a wander round the hospital), I will want to feel the presence of others, even if I am snoozing.

If you do decide to pay a visit, you should be aware that I am only allowed two people at a time, you will have to wash your hands and stuff and you may have to put on a gown. Again, with that, we will have to suck it and see. If you are going to find it difficult seeing me in a state of ill health, which includes me walking at a swift pace to and from the toilet and vomiting, do not come. Originally, many months ago, I contemplated limiting attendance during this period, because, poo can be embarrassing, but if its going to happen it is going to happen, so, if you are strong enough to handle it. Then do come.

The other rules, are simple. No gifts. I cannot eat fresh fruit and flowers are a no-no. If I need anything, I will text message an order. And the most important one is, if you feel at all poorly yourself, DO NOT COME. I will have no immune system during this period.

Whilst I am in, I may have some sort of contact tree going, depending on my energy, that will be confirmed in due course. If it turns out that I do not want to see anybody, for example, then I will find a way of communicating it. I know enough about me however, to know that I will need some sort of attention to get through it. If I do not respond to my phone and you are worried, you can contact my Mum or sister. Their emails are above, or you can get Big Sister on [DELETED]. Work folk, are probably best to go via [Middlesborough].

After I am out, the plan is still for me to go back to Deeping, for about a month (again, subject to change), until I feel well enough to look after myself. It would not be fair to [Housemate] and Bruce if I came straight back to the flat.

I will lose my hair again, but much more of it. I am hoping to lose a lot of weight. I kid you not.

Last but not least, I very much want to see all those who are near and dear to me prior to going in to hospital, but the clock is ticking and I do not know how I will realistically manage it. I have a lot of work to do, so I need to try and get that stuff sorted too. I am not sure what next week will look like and if my fatigue will be gone completely. I am hoping it will and I am hoping that I will do my best to see as many people as I can. When I do, just remember, that you know, based on this email, as much as I do.

I apologise for being a bit crap in staying in touch of late… It’s the drugs fault. Quite horrid. I would have loved nothing more to have been a social butterfly, but the powers that be had other plans. I want to be clear, it is not a reflection on anyone. As [DELETED] rightly pointed out, the situation makes me angry and frustrated.

So there you have it. Thanks for you know… I imagine that over the next few months, I am going to need a lot of TLC.

Much love,

EJ.

If I have missed people off this email, it is purely because I do not have their email addresses/I am forgetful.

Sent from my iPad

* Please note that names and a few sentences have been amended to protect the Network (and myself)

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3 thoughts on “Preparation I

  1. Terrij says:

    Good luck. You are in my thoughts every day. Remember to eat ice on the day you get the chemo. The first few days you will probably feel ok but then the shits & no appetite will set in for a few days. You will be fatigued but when your numbers start going back up you will start feeling better. We were surprised my daughters hair didn’t start falling out until day 14 . She went home on day 17 & had to be really careful till day 100. People could visit but had to be really healthy. We called stem cell day “REBIRTHDAY”. Every day got better & better. You are young . You will do a good job fighting. From what you have described what you all ready have been through I know you can do this. Positive thoughts & prayers are out in the universe for you. Mama jones(USA)

  2. Good luck Emma. Your expectations read about right for me. I felt grim from about day +5 (from SCT) to day +10. But after that, I’ve felt progressively better each day and week. Hell, I’m even regrowing my bodyhair now! I’m certainly way way better now than I have been at any point since some time before my diagnosis. I hope the same for you.

  3. Good luck Emma. I think of you all the time and wish you all the strength in the world. xxx

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