Dear Nichola,
Having been married to someone who was a lecturer for many years I remember that at times of stress he would still have to put on his “game face” and put on a show for his students. I think this adds to the problem of being ill whilst working as you can’t just go in hide away and be invisible. So I think it’s important to take this into account when thinking about the level of workload you take on board. You sound like a very conscientious person and I am sure your colleagues are aware that you are giving your all given the extra burden you are carrying.
Teaching is a vocation not just a job and its needs people like you.
Best wishes
Alfie
2 Likes
Thanks for your reply. You’re right, it’s more than just a job and I want to do my very best. It’s a shame I can’t afford to drop a few hours but for now that’s not an option. But I am concious if what my body needs and will try and just go with this. However, putting on that ‘game face’ can be emotionally draining. Thanks so much for sharing. It really does help x
2 Likes
The counselling has really helped me to reflect on what I need. Although a constant challenge it’s one I’ll keep working at. You share an awful lot of insight on here which has really helped me xxx
2 Likes
I think this thread will be so helpful to those newly diagnosed with blood cancer and adjusting to the changes that come afterwards, thank you all for sharing your experiences.
Does the ‘bubble’ feeling ever go away? Are there different bubbles depending on where you are in your blood cancer experience?
1 Like
Dawn, yes, my bubble went away very gradually I think it was when I felt people were not looking at me as ‘Erica, the person with leukaemia’. Perhaps I very occasionally feel in another type of bubble when I am feeling very different to the group of people around me.
1 Like
Hi, I was diagnosed last week, over the phone, with SLL/CLL. My appointment with the hematologist is not until 2nd May so I am feeling very anxious. All these questions I need answering.
1 Like
Welcome to our community forum, I cannot imagine how you are feeling at the moment, anxious probably hardly covers it. My newly diagnosed feelings, fears, what if’s and thoughts have coming whizzing back to me just reading your post. I sometimes feel that medical people have absolutely no idea of the impact their words. I don’t ‘fight’ or ‘flight’ I just freeze emotionally and physically and it took me a long time to come down from high alert and in the bubble I describe above after dignosis. That was 15 yrs ago and I have been a very lucky girl and have been on ‘watch and wait’ (active monitoring) ever since. What I have noticed on this community forum is that we are all very special, unique beings but that we all seem to share very similar fears, thoughts and emotions. I find the Bloodwise booklets are very helpful and for me writing a list of all my fears, thoughts and feelings and symptoms down before medical appointments really helps me and writing down the replies I receive. The community forum has empowered me to ask all my questions and another question if I have not understood or felt my question answered. I bet the 2nd May seems a lifetime away for you and the one thing I would say is please try and look after yourself and give yourself the odd treat. If you need to contact the Bloodwise Support Services, please call 0808 2080 888 (Mon-Fri 10am-4pm Weds 10am-1pm) or via email at support@bloodwise.org.uk. Have you got any support from family and friends?
1 Like
Thanks for your response. Yes I have a fabulous family and great friends so feel very lucky. I have Chiari malformation and had brain surgery in 2012 and was then diagnosed with Lupus. So to get this latest diagnosis was a shock. I have read some of the booklets which are really informative and helpful but i want to know about my specific situation- what stage? Will I be watch and wait? Etc.
1 Like
Hi, it sounds as if you are forming the right questions in your mind. You have had and lot going on since 2012, yes, it must have added to your shock. I am so glad that you have fabulous family and great friends they are priceless. We cannot give you medical answers because everyone, their medical history and all their symptoms are so individual. However I have CLL, you might hear from someone with SLL/CLL with their experiences. Take care and keep posting.
1 Like
Hi Stella, welcome to the forum. I am sorry to hear you’ve recently been diagnosed, especially over the phone which I imagine was challenging? As Erica has mentioned, diagnosis can throw up huge emotions, worries and questions, and its understandable to want information on you and your blood cancer specifically. I am pleased you have read some of the booklets, and that they were informative and helpful, it may be helpful between now and then to make a list of the specific questions you want to know, so you have a clear idea of what you would like to get out of the appointment. I imagine there are lots and lots of questions, hopefully speaking to the haematologist will begin to answer some of them.
You mentioned above that you were diagnosed with CLL/SLL - our booklet mentions a little on SLL “Small lymphocytic lymphoma (SLL) is a type of blood cancer that affects the same type of blood cell
(lymphocytes) that CLL affects. It’s basically the same disease as CLL, but the difference is that it affects your body in a different way. If most of the cancer cells are found in your blood and bone marrow this is CLL. If the cancer cells are mostly found in your lymph nodes, this is SLL. CLL and SLL are treated in the same way.”
So sorry to hear of the challenges you’ve faced with your health, am so glad you’ve found our forum. If you would ever like to talk through some of your questions or worries then our support services are available as Erica has kindly shared above.
How are you feeling today Stella?
1 Like
Hi, thank ks for the welcome and information.The thing I am struggling most with is the fatigue. I do any little everyday task and I am exhausted. Luckily it is the Easter holidays so I can rest.
2 Likes
Hi, fatigue is one of the main symptoms of many blood cancers and other conditions. Personally, I do not deal with what personally stresses well since my diagnosis, it is and everything else all too much for me suddenly. My fatigue can set in immediately after I have overdone it emotionally or physically, or it can come on up to 48hrs after I have overdone it. I think it is OK to have the occasional have a nap and to accept I will probably never have the emotional and physical strength again. However personally I find fresh air, just a bit of exercise and interactions with people help me. Also a fairly healthy diet and a routine for meals and sleep etc… Personally I don’t do evenings and I realise the world does not fall apart if I say ‘No’ and I am lucky enough to be able to be able to have a social life earlier in the day. I hope the Easter holidays will give you a chance to recharge your batteries, please let us know.
Some fantastic advice from Erica there about managing fatigue, it is a side effect or symptom that seems to cut across all types of blood cancer and you are not alone in finding it hard. I hope you’re able to rest, and take some time to do things that make you happy. Take care Stella.
1 Like