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Differing communication styles leading up to a SCT

Hi all,

This is great to have a new section in the forum dedicated for partners, friends and carers. Thank you.

We were told that my partner had to go in for her SCT in January, this has now been moved back to late April. The lack of communication about this from her team is quite concerning though she has been told that a specialist 'transplant coordinator' will be in touch soon so that we can discuss the practical side of things e.g. what to take in, what is allowed etc. However, it's deeply frustrating to have to wait quite a bit longer (and seeing her health deteriorate so much).

We have very different communication styles (internalising vs externalising) and I wondered if anyone else has had a similar issue and if they had any advice on this matter? I tend to try/want to plan to the nth degree (or as much as practicably possible) whereby my partner is less inclined to do so. Our different styles are slowly exacerbating an already difficult situation and I'd love to reach a middle ground.

Thanks in advance for any thoughts anyone has.

Comments

  • Hi Sputnik and thanks for posting, I'm one of the online community champions.

    I can understand your frustration at the delays, particularly if your partners conditions appears to be deteriorating. I'm assuming she's had chemotherapy treatment already to get her to the stage where she can proceed with the transplant?

    For me eveything was a bit of a whilrwind and I went straight from three months of pregressively more intense chemotherapy straight into the transplant, and in all honesty I don't feel ready to face the transplant. I felt so weak and porly after the last round of chemo I almost asked them to delay so that I could recover a little. Perhaps the delay in your partners SCT will give her a little breathing space?

    I presume she will still be having appointments to check on her health in the lead up to the SCT. That should give you an opportunity to ask her medical teams any questions you have, and my advice would be to write down the questions relating to your concerns before her appointment so that you can make sure you ask everything you need to. It is frustrating to come away from an appointment realising you've just remembered something you meant to ask..

    The specialist transplant co-ordinator will be a big help when you know who they are as they will be able to give you practical advice on the transpplant and what you can and cannot do in and out of hospital. There is also a wealth of resources on the Anthony Nolan website and guides that will take you through the process. I've signposted a couple of links below that you may find useful.

    https://www.anthonynolan.org/patients-and-families/preparing-a-stem-cell-transplant
    https://www.anthonynolan.org/patients-and-families/having-a-stem-cell-transplant

    The first link includes some advice on packing your hospital bag and suggestions of what your partner should take with her for the short time she will hopefully be in hospital. There was also a discussion here on the forum recently which you will hopefully find useful as it gives an insight from me and other patients about what they found useful to have with them.

    https://www.anthonynolan.org/patients-and-families/patients-families-forum#/discussion/558/home-comforts-in-hospital

    As far as planning is concerned you can plan practical things, like how often you will visit your partner; how you will manage things at home whilst she is in hospital; if you have children, who will help out with them if necessary, and so on. Beyond that my advice would be not to plan to the minute detail because things will change and you need to maintain some flexibility and adaptability. We are all unique and everyone has a different transplant experience, so there is no telling how long your partner may be in hospital, how well she will be when she comes home, and how much supprt she will need during her recovery. As far as the transplant is concerned you should take each day as it comes and adjust accordingly.

    I hope this helps, but we are here to help you through this so if you have more questions please ask away and we will help as much as you can. As the name of the forum suggests we are all patients and families ourselves and many of us have gone through or are going through transplants. Mine was 9 years ago so I'm an old hand at this, but there are many with more recent experiences. All of the time we are supported by the briliant Anthony Nolan team who provide expert advice and answer the more technical medical questions we cant help with.

    All the best,

    Steve

    Tom_AnthonyNolan
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