So sorry to hear that you have to wait even longer for your results Eva - I know how difficult the waiting is :(
I had a call this morning from the clinical nurse technician at the hospital - he said he was discussing my situation with the doctor this morning and said I should hear back from the hospital later today, or tomorrow morning with an appointment date.
Of course, then there'll be even more waiting (for the appointment) but at least I will have a date.
I hope the next 36 hours passes quickly for your Eva, thinking of you,
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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 :)
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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 :)
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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 :)
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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?
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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.
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I'm in a similar situation, also waiting for results, so understand some of what you are going through.
I had a fine needle biopsy on 21/7 on my neck as I had a cyst there that kept getting infected. I nearly fell out of the chair when the doctor told me a week later that it was cancer! (Lymphoma). A day later I saw another specialist who assured me it was treatable and curable, they just needed to do more tests before I could start treatment.
I then had surgery on 30/7 (excision biopsy). There are over 30 kinds of Lymphoma and the results of this will tell me which one I have, and also what treatement I will be receiving. That was 12 days ago and I'm still waiting anxiously for the results.
I feel a bit silly about being anxious waiting for the results. I've already been given the 'bad' news. I just feel as though I can't move on until I know exactly what it is I am dealing with.
But back to you. I have found the telephone counselling staff at Cancer Council really helpful. Can you ring them and let them know there is a chance you may have cancer? They may be able to offer some practical advice.
One thing that has helped me during the last few weeks of waiting has been keeping busy. I haven't felt well some of the time, but still try and plan something for each day, even small things like shopping, or getting my hair cut, or going for a walk or drive with my husband, cooking etc.
I found nights have been the worst, I wake up at 3am and can't get back to sleep. I downloaded some meditation apps on my phone and listen to them - at least if I can't sleep I can relax a bit, I found focusing on my breathing really helpful.
Every day that passes I think "well, I'm a day closer to finding out what's wrong", which means I'm a day closer to being well again :)
Hope all works out well for you.
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Thanks for taking the time to reply Mishy.
I've decided to wait until I know what my diagnosis is and what my treatment will be before I plan to return to work
I'm still waiting for the biopsy results, it's very hard to stay patient! Once I have the results my doctor can refer me to the cancer clinic. If there is a wait for a clinic appointment (say 4 weeks) then I'd like to go back to work during that waiting time, however if the appointment is next week then I will wait till after that.
I can understand why your doctor advised you not to return to work if you work with children. In 2008/2009 I worked in early childhood education. I was on immune-suppressant medication and used to catch so many things from the children, I've never been as sick in my entire life as I was then 🙂
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This is very early days for me. I was only diagnose with Lymphoma 3 days ago, currently waiting for biopsy results and staging. I am currently off work as I have had a nasty saliva gland infection (which was how this cancwr was discovered), and am also recovering from an excision biopsy I had last night. I have a certificate for a month off of work, however I am worried because I have run out of sick leave and only have a weeks annual leave left.
Because of this I would like to return to work in a week's time, and work whilst having treatment, at least part-time. Of course, this early on on the piece I don't know what my treatment will even be, or what type of NHL i have, I only know it is a B cell lymphoma that is in one spot on my neck (CT scan of neck, abdomen, pelvis is clear).
Is working during treatment realistic? Or should I plan on not being able to work for a while? Also, I wondered how long treatment goes for - realise this would be different depending on circumstances though.
I feel like my life has been turned upside down and I don't know where to start! I'll know a bit more next Tuesday when I get the biopsy results, however my supervisor needs to arrange other resources to cover me during time off, so I'd like to be able to give her some idea of what time I may need off.
Any advice appreciated 🙂
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.