Shivers on watch and wait

Anyone else with FL suffer from shivers? I don’t have a temperature but feel like I have the shivers all the time as if my thermostat has gone wrong

Take care everyone :grinning:

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Hi @Kimmie17, I have CLL and I am on watch and wait and my thermostat is completely up the creek. Take care. How are you coping with isolation?

Hi @Kimmie17 and @Erica

I hope you are both doing okay?

Kimmie, I’m so sorry to hear this, that does sound uncomfortable for you. Do you find anything helps with this at all?

I thought I would include a link here: it covers our information on follicular lymphoma and what kind of symptoms people can experience. Hope that this is helpful to you.

Kimmie, has there been any opportunity for you to speak with your treatment team about this, and explore both what could be the root cause and how they can support you with this?

Please do keep us posted on how you are getting on, and so sorry once again, that you are experiencing this.

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I have been contemplating ringing my unit up, I’ve noticed me right side of my neck is slightly swollen. My left side never really went down after treatment. I’m there on 17th July anyway.
Thank you for replying :blush:

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Hi there! I’ve coped quite well, but found it tougher just lately. I don’t have any desire to dash out though! How about you?

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Actually @Kimmie17, that is exactly how I feel about shielding, it’s weird isn’t it. I always feel if there is something that doesn’t feel right it is worth making that call for peace of mind. Please be sure to let us know how you get on on the 17 July as well.

Thank you, I’ll try to remember :see_no_evil: it was the 6th but they have moved it. My consultant said 2 weeks ago he wanted to see me this next time but was actually retiring. They have moved my appointment as no clinician is available.

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@Kimmie17 of course Kimmie :+1: and to echo what Erica said, if you do notice anything new, anything that doesn’t feel quite right or anything you’re concerned about- we’d always encourage you giving them a ring.

It can sometimes also help just to make a note of everything you would like to talk through and questions you have, before an appointment or a phone call. This can help take the pressure off trying to remember everything.

@Kimmie17 have you been able to get a lot of support from your treatment team?

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I haven’t contacted them much…I know it’s ridiculous but I don’t like bothering them too much. I’ll see how I feel on Monday and I might ring them. I’ve felt like my glands were up this afternoon but 2 paracetamol sorted me out.
Thank you for the support. I do make a blog of how I feel and I always write questions down, very helpful and useful advice.

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Hi @Kimmie17, it is not ridiculous, I always though like you that I did not want to bother, well anyone actually. But someone said to me that that was how I was brought up. I would rather worry myself than ask for help or advice. When I have made the call I am giving them the opportunity to get the whole picture of my health, which actually helps them treat me and could save them time in the long run. I also feel so much better after the call. Yes, the NHS are wonderful and very busy, but they are there to treat me as well. Keep letting us know how you are, we are here to support you.

Thank you so much, it’s not easy to talk to family and hubby…still in denial and telling me I’ll outlive him :face_with_raised_eyebrow::roll_eyes:

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Hi @Kimmie17, I also have a husband that is in denial and I was diagnosed in 2003. For me it is often only people on our forum that really understand what it is like being me. However I have some good friends for emotional support although they often want to fix me and make it all better. That’s the trouble with always being the strong, independent and dependable one.

I appreciate you sharing that, it drives me to tears of frustration that I can’t talk and share how I feel. And, with symptoms that worry me, he would never encourage me to ring up.

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@Kimmie17 that’s so understandable Kimmie, and it definitely sounds like there’s a lot you and @Erica can relate to each other about too.

It can be easier said than done of course, but we’d always really encourage you all to see that in no way are you bothering anyone. If anything, it sounds like you are being incredibly responsible by keeping an eye on your health and asking about anything you’re uncertain on.

I’m so sorry to hear it has been tricky with family @Kimmie17 that does sound difficult for you, though you seem so proactive in tying to find ways to help yourself. Do you find the blog writing helps?

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Visiting the blog helps, I just get busy and forget to come on! All contact is greatly appreciated.

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@Kimmie17 that’s really good to hear Kimmie! It can make such a difference finding something which helps you personally. And of course! we completely understand, life can get busy sometimes, but we always reassure our members, the forum is here whenever they need it :slight_smile:


Hi @Kimmie17. I just wondered how you were doing? I have follicular lymphoma but haven’t experienced that yet. Are the symptoms any better? I hassle my team all of the time but am lucky as my clinical nurse is pretty amazing and responds to emails so quickly. I’ve decided that there isn’t such a thing as too much bothering - blood cancer brings with it so many challenges and it’s only natural that the littlest of things worry us. Also, it’s those little things that sometimes are the most important. You know you’re body so always good to check. This is such a useful place to share isn’t it. I struggle sometimes explaining my feelings - especially regarding being on watch and wait three years post treatment. Be great to here how you are X

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