I wondered if anyone else found it difficult to get to grips with the Watch and Wait concept and how did they explain to others why they were not going to receive immediate treatment. I found it really difficult because I could not understand why I was not going to receive immediate treatment ‘to make me better’ either. A very good friend even offered me her redundancy money to have treatment privately.
I have one of the ultimate watch and waits. A rare slow grower called Primary Cutaneous Follicular Lymphoma (PCFL) Diagnosis was a real shock and major panic. I had always been very healthy so to suddenly get this was tough. More so when it did not fall into the normal lymphoma boxes. Its very rare and few encounter it so it took a while to get to the Watch & Wait.
I did a huge amount of studying on the subject and had been expecting some very tough times ahead but at each visit things did not add up. My results had them confused - why was I looking well, why no B symptoms, why were my bloods always ok but my biopsy was definate lymphoma?
Talk about turning you upside down & inside out. There were times when I wished they had found what they wanted as it was all dragging out so long. I was losing confidence, but then a freak encounter with Doxycycline antibiotic prescribed for a sinus infection ( non connected) changed the game. My lesion began to retreat, handy because by this time it was quite a lump between my eyes and in my eye socket. So I reasearched Doxycycline & lymphomas and bingo some results. A reassessment of the whole case by the MDT and I had my diagnoses, narrowly avoided radiotherapy and straight on Watch & Wait. But that was fine by me as by then I understood all about low grade lymphomas and how, being incurable, were much better managed with the least amount of treatment. Totally opposite to other cancers and another toughy to get your head around but seeking knowledge & information saw me through.
In a nut shell, cancer treatments are tough, disruptive and unpleasent to have to endure. They are improving all the time and will be there when you really need them but take heart if you are put on Watch & Wait enjoy some normality for as long as you can. Then you will have more strength to handle treatment when required. Take more responsibility for yourself, keep well, be nice to yourself, destress & only call the clinic when you notice changes.
I am a strong believer that high levels of stress enable cancers to develop so I am on a no stress at all diet from now on
Hi Karen, thanks for your post, I love your philosophy for life, sounds good to me.
Hello @Karen-Ireland how is the diet and no stress going?
Diet doing well, blood pressure right down and I have adopted a no care policy. Much easier when staying away from clinic check ups.
Hi, I’m newly diagnosed with essential thrombocythemia one of the rarer type blood cancers and I’m on watch and wait at the moment , I am taking an aspirin a day and will be having check ups every three months from now. I’m feeling a little down and tears today and I’m worried about what my future holds though trying to stay positive
Hi, you say you are newly diagnosed, that is a life changing shock so I am not surprised you are a ‘little down’ and tears today. It is so scary realising you do not know what the future holds. I remember feeling in this weird bubble for ages. I thought I was the only person in the world with blood cancer. It took me a very long while to take all this in and to start to come down from my emotionally high alert. I was so fearful, anxious and scared. It really took a toll on me emotionally and physically. I so wish I had this community forum and the Bloodwise support line (details above) to realise I was not alone and there were people who really understood what I was feeling and thinking and were there to support me. Sometimes I found family and friends were struggling as much as I was coming to terms with my diagnosis and did not know how to be with me. Please keep posting and tell us your fears. and be kind to yourself.
Thank you so much for sharing your experience with essential thrombocythemia. I am sorry to hear about your diagnosis and whilst I am pleased to hear that you are trying to stay positive, it is very understandable that you have days where you feel a little down.
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