Waiting for diagnosis after surgery

[Sueblue]

Thanks for your kind words Evaboo :) I used to be a good sleeper until recently! Some nights I have been awake all night, on a good night I'll sleep through to about 3am. The free app I downloaded from the App store is called 'Relax and Sleep Well Free'. It goes for 27 minutes and left me feeling quite relaxed. My only criticism is that I found the narrators English accent a little bit distracting. Still, it worked and I was surprised at the end that nearly 1/2 hour had passed. I downloaded a few free ones from the App store, haven't tried the others yet. Unfortunately I don't have a date for results, although am hoping to find out something tomorrow. I've been having a few communication issues with the hospital. It was the ENT section who made the initial diagnosis, but I have to follow up with the cancer clinic for the excision biopsy results. I rang them today and they said I can't make an appointment as I don't have a referral there. Yet the ENT team assure me that they have faxed referrals to the clinic 3 times.... I am going to see my GP tomorrow to see if he can speed things up a bit, he has already been in contact with Pathology there and requested they fax him the results.

[evaboo]

Oh Sueblue, As if it's not pants enough without the hospital messing referrals up. It makes me wonder if they understand the misery of extra day brings. I know my delay has been down to circumstance not problems but it's frustrating all the Sam. Hahaha I'll definitely download the pommy Relax and Sleep Well app and try it out tonight. You. Ever know, it might remind me of Blighty...... Cold wet and dark LOL I found a pile of free podcasts on iTunes too, perhaps take a peek and see what you think. I'll be thinking of you tomorrow.. Let me know how you get on. Evaboo

[Juno888]

Hi Suebloo I just wanted to intro myself and let you know I am around also. I am a bit further along than you but it's all so new to me and every day is unknown territory. Last night was the best sleep I have had since about 2 days before I got my results last Friday. For me it has taken a few days to sink in and get to a place of acceptance. I hope you find out some news today also and I hope it is all good. It's hard enough dealing with this journey without bureacratic bungles. I am lucky I have contact with an oncology nurse at the hospital who was part of the multidisciplinary team so she was my connection. Although they get busy and I have been forgotton. But I know I am one of many. I am waiting for an apointment to find out about my radiotherapy treatment next week and it's dragging I can tell you. It's the waiting and wondering. For me it's how big a deal my treatment is going to be and for how long. A few other questions about the extent of the cancer cells remaining etc. Anyway I totally agree with you, keeping busy is good and meditation is a big help. I am an advocate for counselling as well. I have a counselling session this morning myself so I must get my A into G and get going. Wishing you all the best and take good care of your self. Juno

[evaboo]

Hi Sue, How did you get on honey? did you get your results through your GP? Did you get the ONC appointment sorted out for you? Just want you know we're here for you if you need us. Eva x

[Sueblue]

Thanks Eva, No, still waiting unfortunately :( There had been a bit of a communication mix up at the hospital, with Haematology saying that I couldn't be given an appointment as I hadn't been referred there, and then ENT saying that the issue was with Haematology as they had sent 3 referrals through... On Tuesday I did manage to find out that I have been assigned to a doctor at the clinic, and my file (for want of a better word!) was with the doctor waiting for review. Each patient is allocated an appointment on a priority basis. The receptionist I spoke to said I should hear from them by the end of the week (which is today). So, I'm going to ring them later this morning. If I still don't have an appointment, or if the appointment is a few weeks away, I've decided I'm going to find out how I can get a copy of my pathology results. Then I'll take them to my GP. That's my plan anyway. I'm trying to stay patient, I understand the whole priority thing, and that's not the issue really. I don't mind waiting a month to see a specialist, but I DO mind waiting a month to find out what type of cancer I have, if that makes sense! How are you going Eva? When do you get your results?

[Sueblue]

Hi Juno, Thanks for your kind words. It's reassuring to know I'm not alone in this. From what you are saying, I guess I have to get used to this waiting game. I'm generally quite a calm, relaxed and patient person! But on Monday it will be 3 weeks since I found out I have cancer, and as there are so many types of Lymphoma I just want to find out what I am dealing with - Then I can get busy researching and preparing questions to ask the doctor. I'm like you also in wanting to find out how big a deal my treatment will be. I want to know will I still be able to work for example. At the moment I'm on extended sick leave from work until the 28 August. I've found its all well and good to have a certificate, but I've ran out of sick leave, and only have a week's annual leave left, so work is paying me 2 days annual leave a week and then 3 days leave without pay each week. Also, a lot of the work I do is project based, and so they have been put on hold, but I need to let work now when I will be back. It's funny though, the work and money related problems don't feel as significant to me as my health! As for keeping busy, yes I am finding that is helping. I try and plan something for each day, yesterday was a haircut! I've also taken up knitting again, haven't had time to do that for years. I've decided to knit squares for 'Wrapped with Love', who send blankets overseas. And I've enrolled in a free 4 week online university course (through Open2study). On the home front I've been de-cluttering and sorting things out. I am thinking about counselling too, and deep breathing/meditation has definitely been helping when I wake up in the middle of the night and can't get back to sleep. I think that breathing and relaxation techniques will probably come in handy during treatment too. I hope you have found out about your appointment Juno, good luck with your treatment next week :) Sueblue

[evaboo]

Hi Sue, Oh it's so frustrating! You're way more patient than me. I'd be sitting on their doorstep until some one gave me an appointment and my path results. I hope you get some good news today and some progress. I understand the need to prioritise appointments, you're doing really well. Keep us posted, we're rooting for you. I'm still waiting for my results from the surgery on 5th but I got the bill for my path tests yesterday, great, bill me but don't tell me...... What can you do? LOL Roll on Monday when hopefully I can move another square on this bizarre board game! It never quite goes the way you expect though lol. Sending you positive thoughts and peaceful nights Eva

[Sueblue]

Thanks Eva. I rang Haematology just then and they were unable to tell me anything as my file is still with the doctor. The receptionist did say that if I was concerned I could ask my GP to ring the doctor. I also spoke to Pathology, who said that results can't be released to a patient, but they can to a doctor if they give their provider no. So now I'm off to my GP to ask for his help! I have a massive headache today so needed to see him anyway for a script for pain relief, and I'm going to see if he will give me clearance to go back to work part-time. The way this is going I will have used up all my leave prior to diagnosis, leaving nothing for treatment! Sending you positive thoughts for Monday :) Sue

[evaboo]

Hi Sue, hope you get some answers today and that your GP is able to get that path report for you. Hope the headache goes quickly soon too. Eva

[Sueblue]

Thanks Eva. I went to see my GP today and he arranged to have the path report faxed to him. It turns out I have to be patient for a while longer... unfortunately because the cells were necrotic (dead), they were only able to confirm that it was B cell lymphoma, there were no viable positive cells to test any further... and the recommendation is a rebiopsy! I can't believe I have to go through this whole process again (waiting, surgery, more waiting). On a positive note, on the suggestion of one of the Cancer Council staff, I rang the clinical nurse technician at the hospital. I explained my situation and he has promised to follow it up for me on Monday. I don't expect to jump the queue or anything, but don't mind being switched over to another doctor who has less of a wait time, he was going to look into it for me. I felt more reassured after speaking to him. He said that the wait for an appointment is most likely due to the fact that this lymphoma is localised, and is in the early stages. He said I should be fine to go back to work part-time, as a lot of people work through their treatment. So I've booked a meeting with my manager next week to discuss returning to work. I want to keep the arrangements flexible so that I can take time off for treatment and appointments as required, but at least work will keep me busy and keep my mind off things a bit. I want to think about something else other than cancer! The next step (after seeing the specialist) will most likely be a PET scan to see if the lymphoma has spread anywhere. If not, they'll then make a decision on how they are going to treat the localised cancer (radiotherapy, or radiotherapy + chemo). He said unfortunately it won't be over in a few weeks. So, all in all, even though I haven't progressed any further, I'm glad that I followed up on this today. At least I'm not waiting for results anymore... I know that there are no results to wait for, if that makes sense! Unfortunately I still have the headache, but hopefully a good night's sleep and some strong pain killers tonight will fix that :) Sue