Visitors since 20 January 2010

Friday, 29 January 2010

Clipping The Wings Of The Angel Of Death

I have to go back a bit and do some explaining! In early spring 2009 when I was referred back to my GP from the Oncology department at the Hospital I was not referred by the oncology department to the Macmillan Palliative Care team, however my GP did. Now I have already written at length about the Macmillan Nurse “D” and how he doesn’t speak to me – but as there are only two Macmillan Nurses covering my home area I was left with “G” – shortly after I was referred to her she called in on us and the meeting really didn’t go all that well. Firstly “G” was 40 minutes late – and perhaps I’m over reacting but I did think that someone could have called and let us know that she was running late – seeing a Palliative Nurse for the very first time is quite a stressful thing and the nurse being 40 minutes late doesn’t help.

Secondly “G” arrived with someone – she made no introduction or explanation until they were both on the sofa in the living room when she introduced her colleague as "someone who was shadowing her" and did we mind her – the colleague - being present. I found this very odd – the time to ask about the presence of a third party surely should have been asked of us over the telephone before her arrival. “G” did not know us and – as I already said – meeting a Palliative Care Nurse for the first with all the implications is very stressful. “G” then asked a series of questions – apparently memorised from a list – And I totally understand why some of them were asked.

“Do you know what’s wrong with you?” and so on and so forth – eventually we got to “Do you know why I’m here?” and I answered “Because you’re the Angel of Death?” - Well OK perhaps it wasn’t very funny but it would have been nice if she had said something like “You’re OK – I’ve left my scythe in the car” instead of getting angry with me.

The next day I saw my GP and I told him that I hadn’t got along very well with “G” and he put that into my case notes. Unfortunately a few days later there was a meeting at my surgery which included “G” – “G” was sat directly opposite a large screen onto which case notes were flashed and she sat staring at “It would be true to say that Richard did not get along with “G””

A couple of days later I received a letter through the post from “G” telling me that after talking with my GP and with my partner Gavin she was taking me off her active list.

In June 2009 or perhaps July I started seeing my GP about the coughing and about my constant tiredness – and he started treating the first and trying to find a cause for the second. At the same time he suggested that I would be a good idea if once again I was put in the care of a palliative nurse. I said that Gavin and I would prefer not to have “G” as we found her unfriendly and of course the other nurse for this area would not speak to me. After much and many conversations “G” accepted me as a patient and we accepted her as my palliative care nurse. Shortly after this she rang me and we had a conversation which I can’t really remember.

Now we come to the present day – or at least a week ago! On Monday the 18th of January I rang the Macmillan Help line and talked at length – at length? it was over an hour - about how I felt abandoned and invisible – in fact much of what I put in the first posting in this blog and the reason that I started this blog. At the end of our conversation the nice lady on the end of the telephone asked if I minded giving her my name and postcode and of course I didn’t.

The very next afternoon I received a telephone call from “my” Macmillan palliative care nurse “G” wanting to know “how I was” - was this a coincidence? I don’t think so although I might be wrong, but it was only the second call I had received from her. I have reported the conversation with “G” in a previous post. But it was as a result of this I saw Dr “K” at Pricilla Bacon Lodge with the happy results detailed in a previous post.

However and additionally I had a rather bizarre conversation with Dr “K” – she wanted to know why I hadn’t been referred to her – as a Palliative Care Doctor – months ago – I explained my difficulties with the Macmillan Palliative Care team – One won’t talk to me and the other removed me from her case load until asked to put me back – Dr “K” was surprised that someone hadn’t been contacting me at least every 4 weeks to find out how I was. ....... But she then rather shut up about direct issues and talked indirectly – I was asked if I wanted to stay with “G” to which I replied that as far as I knew there were only 2 Macmillan Nurses in Norwich and she said that there were 20 in Norfolk and she would be very happy for one of the others to care for Gavin and I. I then said that I would talk to Gavin and I have done so – and so we will have a new Macmillan Nurse very soon.

I feel very ripped off by “G” but heartened by Dr “K” and her “We can’t cure the Cancer but we can handle the symptoms attitude” – I also like Gavin’s comment that he doesn’t care who we have as a Macmillan Nurse “As long as they’re friendly”

Thursday, 28 January 2010

Not Breathless - Just Coughing!

Yesterday I had an appointment at Priscilla Bacon Lodge with a Dr “K” whose speciality is palliative care, for what I thought was an assessment for a breathlessness clinic. Within a few minutes – a walk along a corridor – she knew that I didn’t have a problem with breathlessness but that I did have a problem with coughing – so much junk in my lungs that they, the lungs, are trying to get rid of it in the only way they know how – hence the coughing! And she assures me that one way or another they can get the coughing under control. I do hope so as this will change my quality of life in a big way – I’ll be able to go to the cinema and theatre – HURRAH! For now I will continue with almost the same treatment that my GP – Dr “RB” prescribed except I am now on “Oxynorm” rather than “Oramorph”.

I also mentioned how tired I was all the time and how much sleeping I do - now it’s possible that this is due to calcium deficiency Dr “K” said. And I haven’t been tested for that. Calcium deficiency would also explain the dry mouth. So more bloods to be done but I am really hoping that it turns out that I am calcium deficient as this is very treatable and would make a big difference to my life.

I was very nervous about going to Pricilla Bacon Lodge but I am very glad that I went and very pleased to have met Dr “K” – at last I am receiving proper care for my conditions – as Dr “K” says the Cancer is not curable but we can get the symptoms under control. And that brings me onto another matter and something which I am very angry about, but will be the subject of my next post.

Tuesday, 26 January 2010

Then the Phone Rang

On Thursday the 21st January I got two telephone calls – the first was from my GP – Dr. “RB” who – incidentally – I find most excellent -- with my test results which have been covered in a previous post, but also requesting that I see him every one or two weeks – I did (do?) feel that every week was a bit short so I have booked a series of fortnightly appointments! HURRAH! He asked me if there was anything else he could help me with and I suggested that there were two things – firstly the lottery numbers for Saturday and secondly the appalling day-time Television – unfortunately he was unable to help – BOO!

The second phone call was from “G” – the Macmillan palliative care specialist nurse – I’m not sure if that is her correct title though! Anyway we talked for about an hour about various things. But I suspect that the really important thing was that she has put me forward for a “Breathing” or "Breathlessness" Clinic for which I shall be assessed tomorrow – I pointed out that I didn’t get breathless, it was the coughing that was a problem “G” then pointed out – correctly after I had given it a bit of thought – that the coughing certainly got worse when I spoke! So assessment tomorrow!

“G” and I also spoke about two other things – my feeling that I had dropped off the face of the earth when my chemotherapy finished – which is apparently very common in Cancer patents. And to a great extent that is being addressed now by Dr “RB” asking to see me frequently – every one or two weeks, the possibility of a Breathing clinic and also this blog! “G” and I also spoke about the “Elephant in the room” – “D” – at length but there is little that she can do there except to be aware of how I feel and I think that I am happy with that situation.

I think that I like “G” – she is certainly very “no-nonsense” but that is not a bad thing when dealing with the grumpy, demanding and irascible, and she seems to have my best interests at heart.

Friday, 22 January 2010

The Results are In!

A week or so ago I had “bloods” and a Chest X-Ray and today I got the results today.

There is no significant change in the “Bloods” from when it was last done – HURRAH! However the X-Ray reports reads like this

PA Examination. Comparison made with previous examination dated 24 September 2009.

There has been a significant increase in the volume of the metastatic deposits situated in both lungs. The largest tumour is in the LEFT lung mid zone with a maximum diameter of 11 cm. Pleural spaces clear. No other features.

Which I guess explains the coughing for those who have spoken to me on the phone recently! The good news is that I don’t cough when lying down so I can sleep OK – but it’s really difficult to explain what you’re doing if you lie down on the floor in Tesco!

Thursday, 21 January 2010

The Mystery of the Missing Palliative Care Nurse

Some time ago I had a very good friend "D" who worked for Macmillan - I liked and respected him and we got along really well. We first met when we were both volunteering for a Gay Switchboard and we became firm friends. He was a guest at Gavin and I's Civil Partnership. After my diagnosis of cancer “D” was wonderful and explained all sorts of things to me. A good friend and one I respected a lot.

Then one day I rang "D" and only got an answer-phone message - I didn't really think anything about it - he was probably out shopping or some such - but it kept happening and on "D"'s mobile and home phone all I got was voice mail - when I knocked on his door there was no reply - ever. I kept trying to contact him for some six months culminating in leaving what I now realise was a very sad and rather pathetic phone message. Still no contact.

This was all going on whilst I was undergoing chemotherapy and then in May 2009 chemotherapy finished and I was passed back to my GP for best possible palliative care. My GP put me in contact with one of the two local Macmillan palliative care nurses – of course one of these two is “D” but he did not arrive and we saw the second nurse – “G”. Gavin and I had the usual extensive chat with her. During the course of this conversation I did ask about “D” but she was very dismissive and just said that “D” felt he couldn’t see me because of our friendship – I said to “G” that I didn’t think “D” and I had a friendship as I hadn’t seen or spoken to him for some 18 months or so. Anyway shortly after this conversation “G” dropped me from her list – probably quite fairly as at that stage in May 2009 I didn’t really need Macmillan’s help.

My GP retired and another GP took over and in November 2009 – I was starting to cough a lot – the new GP thought it would be a good idea to have me in contact with the Macmillan Palliative team again. He spent a lot of time telling me about “D” not knowing that I knew him and not knowing that “D” wouldn’t speak to me and hadn’t done so for nearly two years. When I pointed this out he said words to the effect of “Nonsense I’ll speak to him” but then and later the GP told me that “D” had said to him “Richard has been told at length that I cannot deal with him as I consider him a friend”

Of course that had never ever been said to me, although I would in fact have been very understanding if this had been the case – I feel that we could have remained friends and put boundaries in place so that we never talked about cancer. But I never had the chance to say that to “D” and I feel very bitter – conversely I have also been left with only one of the Macmillan Palliative care team – what happens when she is away on holiday?

Thank you

Thank you everyone for yesterday's messages of support - They really did cheer me up a lot

Wednesday, 20 January 2010

Sucking on a Fisherman’s Friend

The coughing is really annoying – it started in a small way about 7 months ago and I didn’t really think anything much about it. But slowly, as time progresses, it got worse until sometimes I am now left doubled over and almost unable to breath – When I first saw my GP he didn’t want to give me anything to help with the coughing but relented and gave me a codeine based linctus – this worked after a fashion but as it made me constipated and I had to balance poohing against coughing!

Then I saw my GP in the first week of January and I have moved onto a morphine based medicine – I believe it to be actually a painkiller rather than a cough mixture and the idea is to make me less susceptible to the cough reflex and – HURRAH! – it does seem to be working. The downside is that it makes me feel fuzzy round the edges and so I do try to limit the number of doses I take.

Although the coughing is very annoying for me - and I suspect even more so for my partner Gavin - in one way I am lucky with the coughing – it only happens when I am upright, lying down it doesn’t seem to happen. That means that I can sleep.

I am also getting through a lot of Fisherman’s Friends - I have boxes of “Original”, “Cherry”, “Mint” and “Blackcurrant” and I’m awaiting delivery of a box of Lemon flavoured ones! So I spend my days sucking on Fisherman’s Friends and swigging morphine based medicine.

Tuesday, 19 January 2010

Feeling Down

In May 2006 I came home on 6 weeks leave – I was a Ship’s Captain – but I had a bit of a stomach ache and this was diagnosed as cancer of the colon. I had the usual surgery to remove part of the large intestine, but a scan just before the operation showed the cancer had spread to my liver. The surgery was a success and I went onto palliative chemotherapy – 4 different chemotherapies one after the other as each one stopped working – by this time the cancer had also spread to my lungs.

Throughout I was being told that I probably had about 6 months but I had wonderful support from nurses and oncologists and I felt that I knew what was happening, there was always a bustle of people asking me how I was and taking bloods and other tests. Then in May last year – 2009 - it all stopped – I had run out of chemotherapies and I was returned to my GP for best possible palliative care – now the medical support changed - it was very much call me when you’re ill and to see my GP means making an appointment 2 to 3 weeks in advance.

I do have support from my family and friends but all this has been going on for a long time and in many ways I feel it is me supporting them rather than being supported by them. I get very tired and I cough a lot but generally I am in good health.

I have been introduced to the local Macmillan palliative support team but there is only two of them and one of them won’t talk to me. The other one I have met once and spoken to once on the phone and that is the sum total of out interaction.

I feel very let down – as if on the completion of the chemotherapies in May 2009 I was just dropped through a hole and became invisible. And so today I rang the Macmillan help line and talked for an hour – towards the end the nurse asked me what would help and I didn’t really know but I have thought about it and I know now what would help.

I have terminal cancer and I want someone to notice me!