First off. I would like to say sorry for the length of this post, but I feel that what has happened to me is of importance, not only to me but to others who may be in the same boat.
I went to see my chemo doctor a few weeks ago, for what I thought would be just a signing off and nothing more.
I did not see my regular (hmm does that sound too American?) chemo doctor, but another one that I was introduced to at the end of last year.
His approach was different to Dr Kristeleit.
It is ‘funny’ how different Doctors etc react to my condition.
Dr Kristeleit has always been very confident that there was not much chance of a return of the cancer, due to me having the mastectomy ASAP and that only one of 20 Lymphs had any traces of cancer.
He reckoned that the chances were very high that by the time I had my Chemo, it had probably gone anyway and would not have to be seen for a year.
The new doctor was more matter of fact, saying that there was more chance of a cancerous return to my other breast, as I had already had it. Tamoxifen reduces risk of cancer by 30%, and apparently Metformin reduces the risk in women, but due to how rare breast cancer is in men, they have no way of knowing if it is the same for us.
The same could be said for any stats on male breast cancer. I asked loads of questions but they cannot be answered from the male side of it. They are working from a blank canvas. It is so frustrating, not only for me but for them also.
I did take part in a Cancer Research project where they test and ask questions to 40 men that have had breast cancer and 40 that have not. I hope it does some good, if not for me, then for those in the future.
One bit of positive news on that day was that I was discharged from the Oncology Dept and will now be seen in the Outpatients Dept.
I now have to see my surgeon again every three months and not the year as originally stated.
This got me down when I first heard the news, but I guess that being checked on a regular basis is not going to hurt me.
I am still having adverse effects from the bloody chemo. My feet are still cold, but most annoying is that I still get knackered after walking up hill. This is a problem here in Plumstead, as it is all hills.
Twice in the last month, I have walked the mountainous journey home from the bottom of Plumstead. The first time, I had to go to bed for four hours and the second time; I crashed out on the sofa for a similar time.
This tiredness is not ya run o the mill tiredness; it is what I can only describe as chemo tiredness. Anyone who has had the misfortune to have had chemo will know exactly what I mean.
As I have said before though, I cannot really complain, because the chemo was given to me to get rid of the bastard disease.
OK. I can complain and indeed I am now, but I am sure that you get where I am coming from.
I am afraid that I am about to go on another rant….
This time it is about Seetec. As I stated earlier, I would like you to read this.
Seetec is a provider of government employment programmes and training programmes in the United Kingdom. It is one of several companies involved in the Work Programme, a government workfare scheme.
Here is the thing. As you maybe aware, I have been sadly unemployed since March 2009, after working in the print for 31 years. Thanks to my voluntary work, I have picked up skills in fundraising, publicity and admin. In other words, I tried to reinvent myself. From 2009 until my diagnosis, I was applying for at least 10 jobs a week. The best result I got in all that time was one phone interview for a charity. Lets be honest, there are not many employers that would want an unproven, late 40s geezer in their employ.
I was delighted when I was told by the Job Centre that I was to be going to Seetec, in Lewisham. I was to attend every month and my caseworker was the manager of the branch, We got on really well. In fact I was the star pupil. I redesigned their Job Leads Log (which everyone had to fill in each month) and I showed them how to put each ‘customers’ Job Lead Log online. Blimey, I even applied for a job there!
Sadly (for me) my caseworker was moved on and that is where the trouble started. I saw my new caseworker once and then she left (I could SO do that job!!!!). . I received a phone call to say that the new caseworker could not see me on the date that had been arranged and that they would contact me when they could arrange another appointment.
About a week went by and I tried to contact my new case worker. I rang numerous times and was told that she would ring back, but she never did. I was worried that by my caseworker not seeing my Job Leads Log, I may be deducted money from my JSA. I eventually managed to get an email address for my caseworker, after yet again phoning the reception at Lewisham and sent off an email of my Job Lead Logs from December 2011 and January 2012, but I still did not receive any reply or acknowledgment, even after phoning them a number of times.
After my diagnosis I contacted Seetec who informed me that I have enough on my plate and that I need not attend any appointments in the near future, until after my Mastectomy etc, by a very sympathetic member of staff, who also reassured me that a note would be made on my file to that end.
I was taken off of Job Seekers Allowance and placed on , Employment And Support Allowance (ESA) as I was unable to work.
I contacted Lewisham again and explained the situation. I was promised that my caseworker would ring me back, but again, this did not happen. Again, I was concerned about having my benefit stopped and I wanted to give proof of my illness. I sent an email with my Job Leads Logs and also a copy of my sick certificate and copy of a letter from Queen Elizabeth Hospital stating that I had Breast Cancer.
Once again I got no reply, either via email or by phone.
A few weeks after, on my way home from hospital, I had a voicemail from someone at Lewisham, saying that I had not been to my allotted appointment and that my benefits would be stopped if I (ironically) did not contact them. I rang back as soon as I left the hospital and explained the situation in no uncertain terms. The guy on the phone was very apologetic and promised me that I would not be bothered again while I was under treatment. He said that he would put a note on the system explaining my situation (again).
HANG ON. WE NEED SOME LIGHT RELIEF HERE
Right, as you were….
I received a few more calls threatening me with having my JSA stopped (IM NOT ON JSA!!) last year, for not attending.
On Friday 4th January of this year, I received a letter to my address, telling me that my next mandatory appointment would be 11/01/13. On the same day, I received another letter stating that my next mandatory appointment was on 25/01/13 and National Career Service appointment on 07/02/13 (I have no idea what that is).
Both letters stated that I could lose my JSA (IM NOT BLOODY ON JSA!!!!). I correctly assumed that I was still exempt from the Work Programme and needed to contact Seetec ASAP. In any case, I was still getting over my chemotherapy and radiotherapy (which I had only finished on 18th December) and on the morning of the 7th January, I was still feeling the effects of my treatment.
I spoke to a guy whom I shall call Mr A and explained all that had gone on, in the past year. He told me that I still had to come along that day, even though I was on ESA and that I was not feeling too good. No matter how much I explained that this was plainly wrong, he would not budge. I asked to speak to the manager of the Lewisham branch and he told me that the manager was busy, but he would get him to ring me back as soon as possible.
I explained the urgency of the situation saying that if I was to get to Lewisham that day, I would have to leave soon, even though I was not well enough to do so as the chemo was still hitting me hard and had no idea how I would get there anyway. I could not drive.
I again spoke to Mr A around 10.15 who told me that he had spoken to the manager and that he (the manager) would not speak to me. This (as you will see,)was a lie.
I was really panicking now, so SJ rang up on my behalf at about 10.30 and spoke to someone I shall call Ms B and SJ told her that I was not well enough to come in and that she wanted to speak to the manager. SJ asked who the manager was and was told his name I shall call him Mr Manager. Ms B said that she would pass a message on to the manager (which she did not).
It got to just after 1pm when the manager had not rung back, so SJ rang back and without explaining who she was, said that she wanted to speak withMr Manager. This did the trick and she was put through to him. When she explained to Mr Manager who she was and that he had not called back, he said that he had not been told to ring her back and had not even been informed of the situation!!!!!
What you have to remember here is that I was really ill and in a state of panic, not that these bastards cared. They seemed to be more concerned with covering their arses.
Mr Manager then explained to my partner that (of course) I did not need to attend and that the letters were generated from Seetec’s head office. He expected the letters to continue, but he would put a note on the front desk at his Lewisham branch explaining my circumstances, so that it would be clear that I would not be able to attend appointments. He also said that as I was on the support banner of ESA that I should not be attending anyway. Instead of me coming to appointments, he said that I would receive a phone call once a month to see if my circumstances had changed. This finally put my mind at rest.
SPOILER ALERT: I have yet to receive such a phone call
While my partner was talking to Mr Manager on the landline, Mr A rang me back on my mobile phone and said that he had spoken to the manager and that I would need to come in that afternoon at any time. This was another blatant lie and I can only assume that he was covering up for himself, with no regard to my poor health that day.
Needles to say, I am still receiving letters telling me to come to Lewisham and threatening to stop my JSA (I KNOW, I KNOW) if I do not turn up.
To cap it all on in early February, I received a letter from ‘Evaluation of Decision Making and Appeals’ stating that a doubt has arisen on my entitlement to JSA (!!!) because I had failed to attend Seetec Lewisham as I had been instructed to do so. There were plenty of threats on the letter. I sent them a four page document explaining the incompetence of Seetec Lewisham and after much phoning, I was finally told today by the people at ‘Evaluation of Decision Making and Appeals’ that although they were sympathetic towards me and that Seetec Lewisham were useless, there was nothing they could do about it and there was a chance that I could get another letter in future asking me to explain my non-appearance at Bloody Seetec.
All I was asking was that this could be sorted. Not only for me, but for other people who may not be as lucky as me to have someone as strong as SJ to support me.
I wake up often in a cold sweat thinking about these incompetent bastards and how I think I probably deserve a bit of a break after the shit year I have had. It seems this will run and run.
Onwards and upwards my friends and don’t let the bastards grind you down