A lot has happened since I last picked up my cyber pen. As I may have mentioned before , my problems with fatigue, memory loss and downright lousiness have been put down to Chronic Fatigue Syndrome , which is a bit of a sod to say the least .
As a lot is happening and more people are showing interest in Breast Cancer In Men , so I think its only right that I try and write some more no matter how hard I find it . Its a shame that I can’t do one of those montages that we see so often on films , but hey ho .
I also have to get to grips with this blog stuff as a lot has changed on here since I was last here (cue another montage )
The wonderful Ricky Champ with the Men’s VMU unofficial logo . Ricky is doing a lot to raise awareness in MBC.
Men diagnosed with breast cancer are being invited to share their experiences in a new, dedicated forum, after research highlighted that males living with and beyond the disease often do not get the support they need.
Psychologist Dr Kerry Quincey, an active researcher from the Institute of Psychological Sciences at De Montfort University Leicester (DMU), is spearheading the initiative and launching what is believed to be the UK’s first ‘virtual meet-up’ (VMU) for men affected by breast cancer.
The idea came about after Dr Quincey – whose research findings revealed men did not feel they were offered the same level of support as women when undergoing treatment for breast cancer – spoke with US-based charities AnCAN and the Male Breast Cancer Coalition, which together have set up a similar forum in America.
Well-known UK breast cancer charity, Walk the Walk, which launched its ‘Men Get Breast Cancer Too!’ campaign in 2017, is also involved in the initiative.
“My findings demonstrate a need for improved care and resources for men with breast cancer – including communicative means, and especially between peers,” explained Dr Quincey.
“The VMU will be a designated safe space hosted by men, for men, once a month. The meet-ups, which will be free for attendees, will be peer-led and hosted by male breast cancer ‘thrivers’.
“All men with a history of breast cancer diagnosis, based in UK-convenient time-zones are welcome to join the meetings.”
Dr Quincey has been working alongside breast cancer thriver Doug Harper, who participated in her research study, to develop the concept and get a closer insight into what patients want and need.
“I was diagnosed with Breast Cancer in 2012 and because it was and still is so rare in men, it’s hard to find other men talk to,” said Doug.
Doug Harper is working with Dr Kerry Quincey to launch the VMU
“Speaking to others who have gone through, are going through or about to go through what another individual has, is priceless. I had so much love and support at the time but not having contact with fellow sufferers left a gap in my support system.
“This forum can change all of that. Sharing experiences, giving advice and sharing stories, even just chatting about anything, is something that myself and others have been missing. As we go on, I’m sure we can help to raise breast cancer awareness in men too.”
There are approximately 400 new cases of breast cancer in UK men presenting each year and the disease is responsible for proportionally more male deaths annually than some men’s cancers, including penile and testicular forms – 22% of men diagnosed with breast cancer die, compared to around 21% of those with penile and 2.5% of those with testicular.
As one of the charity’s ‘go-to experts’, Dr Quincey has a close working relationship with Walk the Walk and has been a strong advocate of their male breast cancer campaign, raising awareness and encouraging students and staff at DMU to check their chests.
Sally Orr, PR and Communications Director at Walk the Walk, said: “We have been working for more than three years with a growing number of men diagnosed with breast cancer on a Men Get Breast Cancer Too! awareness campaign, which has gone from strength to strength.
“Because Walk the Walk recognises the importance of the men meeting other men, once a year we get them together – many of them have never previously met a man who has had breast cancer. The UK VMU, taking place monthly, is a huge step forward in supporting all men who have a history of the disease.
“It is wonderful to have Dr Quincey collaborating with Walk the Walk as one of our Health Experts, she is passionate about raising awareness for male breast cancer and her professional advice and experience are invaluable.”
The new VMU, which will launch this Thursday 22 October during International Male Breast Cancer Awareness Week, is also supported by NHS clinicians at Leicester’s Glenfield Hospital Breast Care Centre.
Mr Aonghus Ansari, a surgical registrar at Leicester’s Hospitals, said: “There is a taboo that breast cancer is a disease that only affects women, this can have a profound psychological impact on men’s well-being and resilience.
“The VMU will offer men an opportunity to share their experiences with breast cancer and to also listen to other men’s experiences. Realising that they are not alone in their experiences can positively influence their perspective and encourage them to be more open about the effects of cancer on their lives.”
Dr Quincey works with many breast cancer charities through her research. Earlier this year she was named the first collaborative psychologist for Against Breast Cancer (ABC), a national non-profit organisation that funds ground-breaking research into secondary spread breast cancer, focussing on prevention, detection and therapies, while in August she was named a member of AnCAN’s advisory board.
She is also a panel member of the DMU Medical Forum, a national research group set up by fellow lecturer, Associate Professor Gillian Proctor, which aims to improve support for people affected by breast cancer.
Dr Kerry Quincey
“The goal is to provide men affected by breast cancer with a go-to meeting point where they can open up and talk freely about their experiences with male peers,” added Dr Quincey.
“It is crucial that we continue to raise awareness of male breast cancer and give the men affected a voice that can be heard.
“Through our ongoing research and the incredible work being done through the Medical Forum, DMU is proud to be at the forefront of making a change.”
The first VMU will take place on Thursday 22 October at 8pm (BST). To join the conversation or for more information, contact Doug Harper by emailing doug.harper@themensvmu.org
I intend to write a catch up soon , but for now, here is some important (or indeed good) news for my brothers in UK/Europe. For ages some of us have been working on the possibility of having a network where those of us that have had or have BC can network (as the modern parlance dictates that we say) and I am pleased to say that we have started on this project. Speak soon
Love peace and a packet of family size Liquorice Allsorts
MEN LIVING WITH/AFFECTED BY BREAST CANCER – I am working with Kerry Quincey, Peggy Eddy Miller , Male Breast Cancer Coalition and AnCan to develop a new peer-led online monthly support group specially for UK/European men. See Flyer. Please contact me to register your interest at kerry.quincey@dmu.ac.uk
See those links in light blue? You can click on them for further info. (Clever ain’t it?)
One of my pet hates is starting any sentence (spoken or in print) with the word ‘so’, I don’t know why, it just does not seem right. But on this occasion I see no other option. Here goes..
So, here I am banging on and on about Tamoxifen for what seems like a decade and it turns out that it is not the only culprit. It seems that Chemo Brain is also involved in messing with my quality of life.
Rewind to a couple of weeks ago (of course if you are reading this more than a few weeks after this post is published, then that becomes redundant . For all I know this post could have gone through some space time continuum on some crazy loop where you end up talking to Frasier Crane, but I digress).
After being told by various people that there was no alternative to Tamoxifen, SJ , by chance, spoke to my breast care nurse, Sarah and explained my problems and arranged an appointment with the brilliant Dr Kristeleit (who in the past I have referred to as Dr Chemo).
I was back on the MacMillan Brook Unit, where I was first told about this bastard disease, where I had my chemo and where the wonderful people there made me well again. This may seem strange, but it actually felt good being back. I imagine for the very reason that I just stated. They made me well. More power to our wonderful NHS!!
Dr Kristeleit’s first question was ‘why had I not seen him before to try and rectify this’?
I said that I thought it was not an option. He took me off Tamoxifen, which I had been on since January 2012 and replaced it with Letrozole, which is a hormonal therapy drug. It is used to treat breast cancer in women who have been through the menopause. As usual due to the lack of men that have BC there is still no specific drug for us. That is just the way it goes.
He explained that it may or may not be any better, side effects wise, than Tamoxifen, but as he always says regarding cancer treatment ‘Everyone is different’ you can never tell how an individual will react to certain meds. Time will tell. He also informed me that it was now policy to give us all these drugs for ten years now instead of five, so fingers crossed. Still he told me there are other alternatives if these do not work.
He then told me that the chances are that it is not just Tamoxifen that is the cause of my poor quality of life and told me about Chemo Brain. I had heard of this but not in great detail, I assumed that it was just something that happened during chemotherapy treatment.
It is actually a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment
Some of the symptoms that I have are
Difficulty concentrating
Difficulty finding the right word
Difficulty multitasking
Fatigue
Short-term memory problems
Trouble with verbal memory, such as remembering a conversation
Trouble with visual memory, such as recalling an image or list of words
It’s unlikely that chemotherapy is the sole cause of Chemo Brain. Researchers are working to understand what causes it
It could be that
A cancer diagnosis is quite stressful in itself and this can cause memory problems
Certain cancers can produce chemicals that affect memory
There is no standard treatment or medication for this as yet and although the general consensus is that it is a temporary condition, no one seems to know how long temporary can be in this case. I for example have had these symptoms since about the beginning of 2013 (and that is a guess because of my memory)
The recommendation is to do brain exercises. I now watch as many quizzes as I can and I am ironically pretty good at these, but cannot remember how to spell ‘because‘ or what I was talking about 15 seconds ago.
( I had to spell check ‘because’ again) (and there also). ( I better stop this or we may actually end up in some space time continuum on some crazy loop where you end up talking to Frasier Crane)
Still at least it is good to know what is causing these problems.
Just to mention that I had another run in with the nurse in the Mammogram Dept See here before I saw Dr Kristeleit.
I went to query my Mammogram appointment. I was told to go to a certain room, where I was met by the same nurse as last year. She was a bit rude to me and we had another shouting match. She remembered me. She said that she would do my mammogram then instead of next week because I was annoying her. I am not an annoying person, but we always clash. I hate confrontation. Still, saved me another trip to the hospital. I am aware that men with breast cancer are rare and I almost feel as if she is persecuting me. Hopefully she will have worked on her person skills by next year.
I am still working with MacMillan AND Breast Cancer Care. I think it is healthy to involve as many organisations as possible in awareness and both these organisations are really good at it.
Also there should be another short video from me for Male Breast Cancer Coalition soon, with me going on about Chemo Brain. Not to mention (although I am) some publicity about MBC for Leyton Orient Trust ergo Leyton Orient fans (I would rather not talk about the team at the moment thank you very much)
My friend Janine Booth a bloody great poet, activist, and Peterborough United fan, announced this week that she has contracted the bastard disease . As anyone that knows her would expect, she is tackling this news head on.
I would like to share a poem that she wrote a few hours after receiving the news.
That’s is all for now, except to mention that I was watching The Chase and to the question ‘What was Rasputin’s first name’? I answered Ra Ra. Not sure why SJ found it so funny
This is a video I was asked to do for the Male Breast Cancer Coalition. As you can see, I am talking about my favourite subject.
Hello reader. A lot has happened since I last posted .Jeremy Corbyn was surprisingly elected leader of the Labour Party. We have a new Mayor in London. Donald Trump has (even more surprisingly) become a front-runner as president of the US and in doing so made a Bush (Jeb in this case) come across as moderate. Oh and Leyton Orient went through another couple of managers and became even more of a laughing stock.
Anyway, it is not all doom and gloom here.
Below is a post wot I wrote on social media a few months ago as an exclusive to be put in this blog. I am thinking of turning it into a musical.
The past few weeks have been rough for me. I have been feeling even more tired than normal, often having to go to sleep at various times of the day at short notice. Everything is a chore. I have also developed pains in the muscles in the upper part of my arms, which wake me up a few times during the night. I get the feeling that these and all my other symptoms are now a part of my life and will always be thus.
I went to see my diabetic nurse (she is not diabetic herself I do not think) and my GP, to discuss these symptoms and to see if it is down to the dreaded Tamoxifen or if my diabetes is partly to blame.
Well the opinion of both is that it is nothing to do with the diabetes and everything to do with a drug that is supposed to be for women but is taken by men as well only because there is nothing else available and there has been no fucking research into men and Tamoxifen. Ergo there is nothing I can do except tough it out, until I stop taking them after 5 (or possibly 10) years. This brings up another problem as to the question of me wanting to get off them, because the consensus of the medical experts is that it (probably) stops a recurrence of breast cancer, so I am not sure that I want to stop taking them anyway.
All of this has given me bouts of depression, but hey you just cannot please some people can ya? 😉
Right, let’s try and brighten the mood.
Oh I KNOW!! Here is a story from last September
In September of last year, I went for my annual mammogram. There was a nice atmosphere in the seating area I looked up and saw a sign that I had never noticed before in the waiting area. “Gentleman please sit in the main waiting area or corridor, this is a female waiting area”
I thought nothing of it as I was there for a mammogram and that was where I always sat.
I was chatting to a woman who was there for a mammogram and her husband was there with her.
We were having a laugh and swapping stories as you do in these situations. A young lad arrived looking scared, I was trying my best to comfort the lad and said that even if it was breast cancer, it seems that they had caught it early enough so he should be fine.
After about 40 minutes, a nurse came out and shouted to the myself and the other two blokes that we had to move. I said that I was there for a mammogram and that I had every right to sit there, as did the young lad. It was all very humiliating, but I did not want to appear to be a troublemaker.
We were move about eight feet away along the side of the corridor. Where we could still see and hear them obviously. So now the woman had to be on her own and not allowed to speak to her husband.
Then to my horror the nurse who had made us move, was also the nurse who was giving me my mammogram.
As it happened, it was the most comfortable one I have had.
I challenged her on her decision to move us and she said that it was for reasons of chivalry and that men should give up their seats for women!!
I could see that it was pointless arguing with her, but surely, it is more down to how one feels health wise rather than gender, there were actually plenty of seats for everyone there.
Nobody there was in gowns .SJ had been in the x-ray dept a couple of months before and there was no separation there and that was with men and women in gowns. Strange
It’s bad enough having to have it done, without that humiliation.
Oh. This blog is not very happy, is it?
How about another joke? My mate is learning about the capital of Egypt while manipulating my back He calls it Cairo Practice.
Calm down at the back.
I am pleased to say that I have taken part in more media work (more of which in my next post, which judging by how long it took me to write this one, will be in 2018)
Just after my last post, I had the fortune to be on Radio London with the delightful JoAnne Good (who I have just noticed shares her birthday with me and some beardy bloke that I know)
It was by far the best interview that I have ever given, thanks to the fact that Jo had actually done some research into me via this blog, so I did not feel under pressure and did not have to explain what I had been through as Jo was doing a lot of that for me.
Have a listen
Aye aye, that’s ya lot.
Hoping to have another post up before August, but then again, I am hoping to be able to play bass like Jack Bruce
As promised, here is a catch up. Warning, most of this is a Grump A Thon.
All links to other pages are in blue.
My last post about my condition was over a year ago. The reasons that I have not posted since then are twofold. First, I cannot get my brain to work well enough to write a blog and second, not a lot has changed. I am still a Tamoximoron.
Tamoxifen is still messing me up and I am not sure if my continued lack of tolerance and mood swings are down to the medication or getting old, but I am fed up with it . Maybe being fed up with it is what makes me lack tolerance and my mood swings. It’s a thorny issue.
One of the many effects from taking Tamoxifen is that my motor skills can sometimes go haywire. Most noticeably on a keyboard. I am also having trouble noticing spelling mistakes and I often write capitals in the wrong place.
I now cannot spell ‘because’ for example without the aid of spell checker. I have no idea why this happens or many of the other side effects like fatigue, dizziness , memory loss (sometimes I can forget what I was saying a few seconds before), random aches and pains oh and memory lost ( I am sure I have done that gag before) and a massive lack of concentration. I can now only read with complete silence, which is sad because I love to read . I almost feel like Burgess Meredith in that episode of The Twilight Zone This is of interest regarding Men and the taking of Tamoxifen .
Still, mustn’t grumble. Oh hang on. I must!
A packet of the bastards last night, just after it laughed in my face
I have also developed Liver Spots on my feet . Well, I say spots, but they have covered most of both my feet and are making their way up both my legs. Where will they stop??
As I mentioned in the post from the other week , I got married last year and went on honeymoon to Rhodes. We had a fantastic time, but (Grumpy Alert again) I realised, when I was by the pool,that I was not keen to show off the scar on my chest. Stupid really, but it became an issue. I was concerned as to what other people would think, which is not really me. I refused to take off my shirt until I saw a fella with massive changing pigmentation on his upper body and I thought that if he could walk around topless , then so could I .Thanks mate, whoever you are. Although I shall call you Terry for the purposes of this blog. Thanks Tel.
I was also chosen to help publicise the BCC’s campaign ‘Pass It On’ at Wembley with Queen of the Selfies Jill Padayachee who Raised £1260 for BCC through her pink pout selfie campaign and inspirational Sky News sports presenter Jacquie Beltrao both of whom have survived the bastard disease.
Jill, Jacquie and me. I am trying hard but failing to breathe in. I begged for another angle, but to no avail
‘The Male Breast Cancer Coalition (MBCC) is a collection of male survivor journeys and various medical professionals coming together to bring awareness’ and is based in the United States and they are spreading the awareness further afield. I am honoured (or should that be honored?) to have have become involved with them. There are more groups and pages springing up on social media about MBC, which is encouraging.
And a few weeks ago, I was contacted by Kerry Quincey a PhD student at De Montfort University, regarding a research study she’s conducting into men’s experiences of living with and beyond breast cancer. We spoke via Skype for well over two hours and I was surprised at how rewarding it was for me personally. I showed Kerry 15 photographs that I had chosen from my BC experience and spoke about them. I found out things about the experience that I did not realise before. That was not the object of the exercise, but I felt enlightened. I am looking forward to reading the transcript. I reckon there are a couple of songs in there.
Research on men with breast cancer is also pretty rare although in 2012 more men died of Breast Cancer than of Testicular Cancer, even though the incidences of Testicular Cancer are far, far greater so if any MBC chaps are interested in taking part , then contact Kerry from the details below.
Steve White And The Protest Family have recorded the song that I have mentioned a few times on here Never Mind Your Bollocks, about checking your man boobs and is on our album . The aptly titled This Band Is Sick.
I think that is it for now, except to say that we have lost a few more people to this bastard disease since I posted in June 2014. So please check ya bits lads and lasses.
Yeah, I know it has been a year since I posted. A lot has changed. A lot has stayed the same! I got married which was fantastic. Leyton Orient went from being unbelievable (in the best sense of the word) to being unbelievable (in the worse sense of the word) Oh and my band has released an album!! I am still a Tamoximoron and often feel about 30 years older than I am.
I will be posting a catch up in the next few weeks. Expect a moan fest!!!! But I am posting this, as it is something close to my heart.
When I first posted my blog I was contacted by a fellow Breast Cancer person (I don’t use the word sufferer ) who also had diabetes as well. Sarah Mendoza has been an inspiration to me since then and we have both supported each other.
Since I have known her, she has been concerned about the lack of support for kids, who have loved ones with cancer and I have offered some support for this. I am proud to say that I am on the steering committee of Kidz United, but make no mistake, this is down to the guts and determination of one person Look, it will probably be better if I let Sarah explain this in her own words
Sarah wants to raise funds to create a drop-in, in West London, to support children & young carers who have a seriously ill parent or loved one
Sarah Mendoza, is a 45 year old Type II Diabetic, Volunteer youth worker/ artist & mum of two girls (Kayleigh, 24 and Sophia, 10) & a supportive friend to many, was diagnosed with aggressive early stage breast cancer September 2009, followed by a stage 3 recurrence July 2012. November 2014 Sarah underwent corrective surgery on her left reconstructed breast, as well as preventative mastectomy on her remaining right breast. She is now in remission, but still receiving treatment (Tamoxifen) in hope of the cancer never returning.
Sarah is known for her pro-active optimistic approach to her journey with breast cancer. She is using her experience with cancer to make improvements in support for children/young carers in the UK.
In 2009 Sarah went in search of support for her two daughters, she soon realised that the support was non existent.
She realised that there was nothing to help combat how her two girls were feeling. On investigating to why there were no support groups for children/ young carers in the UK, she was told by various organisations & medical staffs, that they were aware of the hole in support for families with children, but it was down to her if she believed a support group was needed within her community.
Due to the fact there was no support for her daughters Sarah went in search of a distraction. As a cancer patient money was a major factor in what Sarah could do. Yet she was determined that her cancer journey would not leave a negative impact. For her youngest daughter Sophia she created a hobby they could share, named Paint C Out, which meant combining Sarah’s skills as a self-taught artist and her youngest daughters’ new hobby collecting selfies/autographs from stars off the big screen and stage in central London.
Paint C Out is now having an Art/photo exhibit of their journey at Tabernacle, Notting Hill, 35 Powis Square, off Portobello Road, London W11 2AY
But this is not enough for Sarah she is also intending on walking 400 miles from London to Scarborough, August 1st, 2015. To help raise awareness to the issues children/ young carers face in the UK & to raise funds to create the drop in so desperately needed in West London.
She will also be walking the catwalk @ The Show with 31 other breast cancer survivorsforhttp://breastcancercare.org.ukOctober 7th, 2015 @ Grosvenor House, A JW Marriott Hotel, Park Lane. Which I also did in 2012 .
Sarah’s youngest daughter Sophia, told an actor. “There is plenty for big people, but nothing for little people!” We need this to stop and the drop in centre in West London is the first step to hopefully make having more of them.
All funds raised from this page and her walk and the selling of her paintings will go into creatinghttp://www.kidzunitedagainstcancer.orgthat would act as a rest bite and provide activities that the whole family can be involved in.
Sarah & Sophia created this video to highlight the issue of isolation & fear during their long journey with cancer.
I am so proud to know Sarah and be a part of this amazing project
Love peace and veggie pork pie from Holland & Barrett
I went to see the sick person’s friend at ATOS the other week. After a few days they contacted me by text, which I thought was a bit familiar. They told me that I am still not fit for work, as my GP had told them for ages.
It annoyed me that the person that was seeing me had giving up nursing for the NHS to work for these evil gits.
I am still getting a load of negative effects from my treatment, including fatigue, dizziness, mood swings, memory problems and losing concentration. Never great at multi tasking, I am finding it impossible at the moment. I find it really difficult to walk upstairs especially when carrying anything. I also have problems with my memory (I know, it was a given).
I have always thought that these problems were Chemo related , indeed the symptoms arrived around the same time as my treatment. I am now thinking that it may be down to the Tamoxifen
which I have been taking since before my mastectomy. Looking into research for men and Tamoxifen, SJ found this from breastcancer.org. Many Men Stop Taking Tamoxifen Breast Cancer.org
What is worrying is that there is hardly any research into men taking the drug as, of course there are not that many men who have contracted BC. In this study, there are only 64 men who have taken Tamoxifen. This is hardly an exhaustive study. Even NO NO Hair Remover questioned more people!
I know that a lot of my female friends that have taken it have had negative effects. The fact that can cause Cancer of the womb tells me that all is not right. Tamoxifen is after all only a blocker. A lot of us feel that the full effects are unknown and feel like guinea pigs, but to be honest, what else can be done?
As the website says
Treatment side effects, some similar to those experienced by women treated with Tamoxifen, were fairly common, including:
weight gain (22% of the men)
sexual problems (22%)
hot flashes (13%)
memory and thinking problems (9%)
blood clots (9%)
vision problems (3%)
Other less common side effects included mood problems (such as depression), stomach problems, bone pain, leg cramps, and sleeping problems.
Of the 64 men who got tamoxifen, 13 (20%) stopped taking it — either on their own or as directed by their doctors — because of unacceptable treatment side effects:
The advice is ” If you have side effects that you believe are related to your treatment, be sure to talk to your doctor about the side effects and steps you can take to minimize them”. But the truth is, the is no other alternative drug wise and no one in the medical trade knows for sure what being taken off of the drug will do long term.
My friend Chris pointed me in the direction of this Cancer Research Reflexology and I will be looking into this.
In better news, I was invited to contribute to the Breathless Breastless Project which is “an inspiring and powerful breast cancer art exhibition showing in Aberdeen UK June & September 2014”.
They have talented artists working with breast cancer survivors to create a powerful exhibition, launching in Aberdeen and hoping to go on to a wider audience in the UK.
Encouraging confidence after cancer. Enabling emotional expression.
Opening night
To have been asked to be involved in such a project is an honour and I hope that it comes south of the border so that I can support it more. Here is my actual hat that I wore during and after chemo and my thoughts on losing my hair
I know the tone of this blog is not as high as it normally is, but there are times when the whole bastard disease gets to you. Seeing your friends suffer gets to you. I know I am clear but it gets a bit tiring .
As Louise Stedman from Breathless Breastless says “People say, ‘oh that’s great, you’ve kicked cancer’s ass’. They think it’s all over but it never goes away,”
Don’t get me wrong, I am not going to stop raising awareness and contributing where ever I can, but sometimes it just gets to you.
The word mammogram (or variants of the word) appear four (well five now that I have written it here) times in the first few paragraphs of this blog. Sorry for the monotony, but I have lost my thesaurus.
In my last post, I mentioned that I was not to have a mammogram. In the end, it was decided that I would have one as I had not had one since before my mastectomy.
At the start of November, I put me breast under the clamp that is used for a mammogram. I was pretty calm until I was told that I ‘if I heard nothing in the next three working days, then I would have the all clear’. I would be sent a letter soon after.
As this was on a Friday, that meant me panicking for five days every time the bleeding mobile rang.
I settled down after I had not received a call by Tuesday night. But hang on, did the three days include Wednesday or not? It was all a bit of a strain.
Anyway, I did not receive a call and relaxed. About two weeks later, I realised that I had not received the letter. Yet again I panicked.
My mind went into over drive. “They never said that they would contact me by phone over the three working days. Maybe they were going to tell me that the cancer had returned via letter and they had sent it to my old address” Not beyond the realms of possibility as I had only just moved. In the end, I rang my wonderful breast care nurse, Sarah, who told me not to worry as they never sent letters and did not know why the person doing the mammogram (Mammogramist?? I dunno) ever said that. She had a quick look at my notes and said I was all clear.
I do wish these people would think before they said things. It is my life and by association, those around me that they are playing with. Maybe that should have been in brackets that bit, but I am wearing the 9 and 0 buttons out on this keyboard.
As I have said before, whether you like it or not, cancer defines at least a part of who you are and this cancer lark is that it is never that far from your thinking.
Saying that, it was not at the very front of my mind when I went to see my GP on 10th January this year, two days before my cancerversary. That is (for those not in the know) the anniversary of my diagnosis, I rather like this term, as it is a celebration that you have beaten the bastard disease for yet another year.
Some aspects piss me off. I have noticed some chancers online selling items for each year like a wedding anniversary.
Anyway, I digress…
I went to see my GP with a number of complaints that I would like to have fixed. I mentioned the sudden appearance of the gap that has appeared on my skull and he told me not to worry. I mentioned my fatigue (again) which I assume if still from the chemo and how I keep forgetting things and not being able to err err errr what time is it/? SORRY, concentrate I assume that this is Chemo Brain Macmillan info on Chemo Brain
I was told not to worry about that either. I mentioned my two trigger fingers and he has referred me to the hospital, which is nice. Hopefully they can be fixed before the band starts gigging again. He once again bollocked me for not taking my diabetes as seriously as I should.
I then mentioned that I could feel food going down my windpipe. He asked me how long I had had this and I reckoned about six months. He then gave me the same look that he gave me when I took off my shirt over two years ago and he gave me an emergency appointment for a scan and biopsy etc.
In that split second, I realised that my life could be changing again. “Could it be cancer again”? I asked him. “It is a possibility” he said.
“Let’s get you down for an endoscopy as soon as possible” I asked what cancer it could be and he said windpipe. Actually he said Oesophagus but I can’t spell that word.
I came home and went straight onto Google. Not sure if that was wise, but I did.
I looked it up and it said that in the hit parade of cancers (I may be paraphrasing here) it is number 9 in the charts but very serious. 10% chance of living for five years.
I left the computer and sat on the sofa and nearly passed out.
I received my appointment, which was for 20th January. The next ten days were full of confusion. I often went onto websites to see if I really had all the symptoms and sometimes I thought not and other times I thought I did.
Deep down, SJ and I were convinced that I could not have it. Not this soon after I had been told that even before the chemo I was probably all clear.
Trouble is friends and whisper it. I was convinced two years ago that I did not have it.
I kept myself busy over the ten days. I went to see my beloved Orient win again. “Typical” I thought. The best season Orient has had in my lifetime and I may not be able to see it. That would be bloody typical of them!
I went to two meetings with me mate Sarah (Third Sarah mentioned on this post so far, catching up with mammogram) about her exciting project Paint C Out that I am involved in. Can I just add that this post was supposed to be all about Paint C Out until all of this shit happened. I will have to leave it until the next post. For now have a butchers at this http://paintcout.wordpress.com/about/
Went out with SJ on my birthday to see Stewart Lee (brilliant) while three of my daughters baby sat for us. I did not tell them about my ‘drama’, they had suffered enough in the last few years.
I also had a Fans Forum meeting at Orient. But always in the back of my mind was the results of the Endoscopy. I was not sure if I could carrying doing the work I was doing if I was diagnosed with cancer again. I assumed that I would be having treatment ASAP.
I somehow got to 20th January, which the first day at Pre School for Spencer. I was in such a state. I am not too proud to say that I was feeling so emotional every time I thought of him and my girls.
Anyway. The Endoscopy. I was told that they were going to put this bloody great tube down me windpipe which would go to my stomach and chuck a left, ask for directions, come back up again and then have another go down there in case it missed anything.
I had two options. I could let them do it after they had sprayed my throat or I could have sedation but only if I had someone who could drop me home after the treatment. Luckily my guardian angel Andrea (who should change her name to Sarah to keep this post tidy) was at hand to pick me up. I had been told that the first option was horrible by those that had had it.
THERE MAY BE SOME RETCHING, MR HARPER
I went to see the guy who was going to stick the tube down my throat and after a chat he persuaded me to just have the spray as it would be over in about six minutes, which suited me, because I just wanted to know the results. You know, just in case I was going to die sometime soon, I would like to know.
After we spoke, I realised that if anything was going to ‘The Lab’ to be tested, then the chances were that would be cancer and I would have another few days wait.
I laid down in a foetus position and a nurse put a contraption on my mouth that stopped me talking and where the tube would go. All that was missing was Bruce Willis and a pool ball. The throat spray was strange, it felt hard to breathe.
The fella started to put this tube in my mouth and I retched so violently that I actually pulled the tube out of my mouth. I couldn’t handle. He asked me ‘what was I doing’? and I said gmmmmpp mmmppphhhh mmmmhppph.
He actually said that no one had reacted that quick before and that I had better be sedated.
ALL TOGETHER NOW!!!!!
He gave me ,what he told his assistant was a strong sedation as I was going to need it.
Next thing I know, I am on a bed and the Tube bloke told me that there was no cancer and that it was something else. I can’t remember what because as I was told, the sedation makes you forgetful. Sadly I can still remember the retching and sensation of a tube the size of a boa constrictor (artistic licence there) not even reaching my throat.
I found out after that I had reflux .
How do I feel now? Over the moon. I have not stopped smiling since I found out. My feelings of the last 11 days are hard to describe. The fact that I was waiting for a Doctor to say yes or no to what would be a life changer in a split second cannot be described
Like most people, I always have something to worry about. My main worry before I saw my GP was so trivial. I have to remember how I felt during those ten days and how it wiped out so many worries.
Finally, I would like to pay tribute to one of our Breast Cancer Care models that we lost late September. Clare Rayner.
As I have often said on here, I am in awe of all of those that I had the honour of sharing the catwalk with in 2012 at the Breast Cancer Care Show.
As a group, we stay in touch, meet and give each other strength.
The group is emptier for losing Clare, but we remember her with a smile and admiration
Clare was a strong lady, who took crap from no one. At the same time, she knew how to have a laugh.
She had been fighting secondary breast cancer since 2009.
I have nothing more to say except RIP Clare, we all will miss you
XXXX
My blog posts were few and far between before this one, but this is really taking the (diabetic) biscuit.
Its six months!!
People that do not know me may have thought that I had died (Unlimited edition).
This post is a bit of a downer, but its not all been doom and gloom. There have been some great times, including me getting engaged to SJ
Pic by Cassandra Fox
and a project that is up and coming (more of which on a later blog) and a fantastic trip to Derry.
Speaking of which
With Paddy Nash and Diane Greer (and Funky Lol) doing Paddy’s song Rubber Bullets
They say that a week is a long time in politics.They say it takes a second to score a goal. (hang on, this could make for a great lyric)
Im not sure who ‘They’ are. They may be a Rutles type parody of Van Asda’s 60’s top pop group.
For me, the last 6 months have been the same health wise as the time I stopped my cancer treatment. That was at the end of December last year.
To be honest, I am sooo fed up with feeling like this.
THE FATIGUE, THE FATIGUE!!!! Charlie may not surf, but he gets tired at the drop of a hat.
For a few months, I always fell asleep at around 3pm. Luckily this has stopped now. It would be a waste of the season ticket that I have purchased at Leyton Orient.
Even now, I feel that I am a victim of narcolepsy, as I get such tiredness. On a positive note, as the day goes on, I feel less like going to sleep.
This creates its only problems at night. I now have insomnia and find it hard to sleep at night. I have always found that the best way to doze off is to put me Ipod on and listen to either an audio book or comedy show.
This works up to a point, in that I fall asleep after about 10 minutes, but then wake up again ten minutes later. Now, the smart money would suggest that I should take the Ipod off and then I will sleep. Sadly this does not happen. I cant sleep again! So I put on another Radio Active/Mark Steel/Jeremy Hardy(great bloke but has a thing against non meat eaters AND where have you been since the ConDems took over mate?) or whoever.
I have even tried a couple of those Hypno sleep recordings. They don’t work either.
I am not going to take sleeping tablets. I rattle enough as it is, what with the Diabetes, blood pressure and stopping you getting cancer tablets.
Blimey, this is getting pretty depressing, so here is my favourite band with my favourite (only) son dancing along to them
If I stretch my left arm (the one that I had my lymph glands removed from) back, it hurts like hell (cue Tommy Cooper gag). I cannot carry anything for too long and find walking up too many stairs a bastard and have to rest for about 20 minutes.
1 4 da teenagers
Playing with the band is ok to an extent. If I have my bass on public transport, I make sure that I get to the venue early so that I can recover. Recently, in two occasions, on returning home SJ has wanted to call an ambulance because I have looked so ill.
But hey, its not worth moaning about !!!!!!
I had a wonderful fathers day with me girls son and SJ
Ha. Unlike me, the girls hate publicity
The mental fatigue can be just as bad. Hence the fact that I have not been able to write this blog for six months.
I am currently on six month check ups which I hope is not too far apart. But I trust my Oncologist. Although, I am not getting a mammogram or scans, just a quick feel of my upper regions.
Sorry that this blog post is so so down.
The main part of my last blog involved the trouble I was having with Seetec. I am pleased to say that the powers that be at Seetec saw my problem and quickly did something about it. My old caseworker at Lewisham got involved and made sure that this would not happen again. If only she had been involved at the start I know that she would have sorted it.
The staff are being educated on how to react to someone in my position.
I would like to thank everyone that supported me both on Facebook and Twitter. The only person that I asked and who did not reply, was my local MP Clive Efford. He was too busy voting in favour of the Govt Workfare thang.
One of the key things about this cancer lark is that you meet people that are also trying to kick cancers arse. Most are better than me at doing so.
Through the Breast Cancer Care Show last year, I was lucky to meet 23 other people that are now my heroes.
Not only that, I was contacted by some through other means like Twitter that I never even met.
One such person was Francesca Marvell. Fran died aged 33 from secondary breast cancer in April of this year.
Fran contacted Breast Cancer Care and got me as a model at The Show last year.
She gave me so much support through Twitter, even though she was suffering herself. She was a great help to me. It is also Fran that I have to thank for getting me into Breaking Bad.
So that is it for now.
Life is actually not too bad at the mo, apart from the above.I will be back soon with less doom and gloomage
I am also intending to get my solo music project (Sarcastic Fringehead) back on track, once I get the gumption to do so. In the meantime. Here is my greatest (only)hit
One of 300 Men 