Frequency of appointments

Hi Tessa 

It’s so hard when doctors say different things and yes it does knock our confidence too. I think feeling safe is very important and if keeping that appointment next Tuesday helps you feel safe then I’d say you’ve done the right thing. 

Do you definitely need a blood transfusion? Or is the cross match a just in case? 

Xxx

Dear as a fellow leukemia patient I understand what you mean about the visits to the hemotology department making you feel like you have a safety net. I have a weekly blood test that technically I don’t need but after my previous relapse i want to know the minute something changes. Communication in hemotology is not the greatest and I have found that you have to compensate for that by being quite assertive. My mantra is if you don’t ask you don’t get, so if you feel uncomfortable only going once a week speak up and then they might be able to reassure you that it  is the right approach, it’s doesn’t help when they can’t agree between themselves ! 

The Tuesday cross match will be useful to save time Friday and quite likely I will need a unit by Friday.

 I'd rather not go in twice a week, its more that I want agreement of original doctor before they change the schedule too many times.

Thanks Tessa

Daloni, I keep getting told different things. One minute I’m expected to set up this month pre-emptive support and then the next I’ve got another 6 months. I’m pleased with the later news but having P.Net cancer is very confusing.all this while I’ve thought I’ve had the common pancreatic cancer. It’s hard when the doctors don’t sticks to their facts.

Hi

That must be completely discombobulating. I think it goes to show just how complicated are the human body and cancer. I tend to go with the most optimistic outcome while preparing for the most pessimistic in situations where I’m getting conflicting advice or info from my docs. 

xx

Hi Tessa  I do wish these doctors would talk to one another every now and again, so this sort of thing doesn't happen but that must seem complicated to them or something because this happens a lot! I think you are right to go to the other appointment on Tuesday, especially if you trust the doctor that made that arrangement and as you say, it'll make it a shorter appointment on Friday! It's no wonder you feel indecisive if they can't make up their mind. In the end, it's surely up to you, especially if you feel this is a safety net, you go and tell them how you feel! Good luck!

My late boyfriend was a huge fan of the film Life of Brian. There’s a song Look on the bright side of life. John used to change the words and sing Look on the black side of life because I’m generally very moody. So my song now is Look on the bright side but expect the black side of life. One thing we all have to have...is a sense of humour! 

(to recap) The Saturday before Christmas my platelets dived to 3 which rather alarmed me. Saw my regular outpatient doctor the Tuesday before Christmas who had my new January schedule prepared. This was twice a week appointments as I have been doing for several months.

I asked her whether she thought I was going downhill, but she said my CRP (inflammation) and platelets were just uneven, and she would ensure I got regular top ups. So although twice a week visits are pretty gruelling and really get me down, I could see the clinical need for it. This doctor is very thorough so I trust her judgement.

Friday a different doctor who I don't know well breezed in and said my levels were even, and was going to change my schedule to weekly. Also told me not to come in following Tuesday, but I was unhappy at such a different analysis to my regular doctor. So I rather insisted on coming in anyway.

Felt pretty ok over weekend, even went for two walks, but Monday my mouth got full of blood blisters. Tests Tuesday (today) showed platelets dived to 3 again, and my haemoglobin only just above transfusion trigger level. So much for being even!

Didn't see regular doctor today but one I know, who is also thorough, and she went through results, Her theory is erratic platelets are due to an unknown infection, which also makes my CRP (inflammation) marker erratic. But they have been looking for the infection since November and can't find it. Senior consultant and my regular doctor now think it is all due to underlying disease.

I don't know where this leaves me in terms of predicting progress of the disease. Maybe I can't but I want to transfer to hospice before I am on my knees.

Doctor today said find something to look forward to, or that makes the appointments feel worth the effort. There isn't much on the list so far. When the weather is better I will enjoy trips out and seeing spring flowers, but that seems so far away at the moment. My main reason to stay alive is so my funeral guests don't have to stand around in the cold.

Tessa

Dear tessa, I’m sorry to hear you have been having such a hard time. You mention your prognosis, in my experience haematologists are very reluctant to give any definitive timelines and will just continue treating you until disease progression gets the upper hand. If you want to be referred to the hospice you can do it by seeing your gp, you don’t have to wait until your at end of life stage and can get all kinds of support in advance of that time. Access to palliative services is generally not well integrated in the world of blood cancer and to some degree you have to bypass them and go to the gp to get referred to local services.

Hi Tessa 

Gosh you are having a hard time of it. I’ve been in the same position as regards an underlying infection over several months. It’s becoming apparent that it’s actually the underlying disease. It feels like crossing another rubicon. 

I think the advice to find something to look forward to is good although I can see it’s hard for you. For me, the inability to look forward is a sign of depression. 

 is right about accessing hospice care. It’s usually via the GP and in some places you can self refer. Visiting the hospice doesn’t have to mean you’re dying - it can mean you’re finding a way to live your best life. 

Lots of love, dear Tessa, and as happy a new year as you can manage 

xxx