Unacceptable delays...

hi
i'm sorry to have read your entry. it really does sound like you're having a difficult time. I can only hope things happen quickly for you.

i had a similar gp experience to you. back in 1999, i was aware i had a 'problem' but was probably being too 'typically male' when i tried to put it out of my head and not think about it. i eventually made an appointment with my gp. he examined me and suggested an ultrasound and said he would arrange it. a week later, a letter arrived from my gp. it basically stated that he now thought an ultrasound was not needed as the 'lump is discreet from the testi' and 'was of no great concern'.!!! so i thought no more of it. my mother, however, made me get a second opinion. within 2 weeks i had had an orchidectomy.
when i sat in hospital i was amazed at the lack of professionialism, the slack attitude and the incompitence of my gp. i made a complaint but he retired very soon after.
maybe there is such a thing as 'post-code lottery'...how terribly sad that we are not all given the same options etc.
i have had most of my treatment at addenbrookes in cambridge and the people there are generally pretty good.
where are you being treated?

hello again.
regarding chest x-rays, ultrasounds and ct scans. these are so important and they really should not take a lot of setting up (time). i know i have been in for routine check-ups and they (my nurse practitioner, bless her) managed to get me an ultrasound virtually on the spot.

i think you need to get to hospital, arrange a meeting with your oncology doctor/nurse specialist and make a huge fuss. otherwise, please be aware that you are generally free to choose where you want to have your treatment and that may be something you could look into?

most importantly, though, tc is such a treatable cancer that you will get better and life will return to normal.
i know it sounds crass, but try to be as positive as you can as i t really does make a difference.
i really think you need to go directly to your oncology department though, as your gp really is out of the equation, and get them to help you.

all the best!

I cant believe how long its taking to get it sorted for you.

Where are you being treated?

I know the waiting is the worst part, i had my ultrasound on December 5th 07 and was told I had a tumour. This was 12 days after i saw the GP and 16 days after i first noteced the swelling. I will have my I/O on monday 17th Decemeber.

What were you blood marker levels prior to your op or after it?

Keep it touch

Mat

Hi Tim,

My husband was treated for penile cancer last year (2007). We went through a similiar problem of poor communication. Though fortunately everything happened really quickly and smoothly as far as getting his treatment is concerned.

My advice is to go to PALS (Patient Advice Liason Service) at the hospital. Though I did not go to them at the time, I was too caught up in the trauma of things. I wished that I had. Other people have told me that they have helped sort out communication problems for them. The consultant and other medical staff improved in their treatment of them and there was not any recriminations.

We were having problems sorting out an appointment for his next stage of treatment. I did go to PALS then and they sorted it out for us.

All the best hope this helps

P.S.

Try www.tc-cancer.com an american support forum for testicular cancer which looks good and the u.k.version, which is www.testicularcancer.org.uk

Hi Tim,

Where is the doctors and hospital you talk of, just so I can give them a wide berth.
I cant believe what I have just read. Although I cant offer any advice I would just like you to know We are out here thinking about you. I hope they pull their fingers out and get on with fixing you as soon as possible.
I wish you lots of love.

Debbie.

I'd be inclined to go to A&E and complain about the chest pains. Once you mention the swollen glands, they may well refer you for further tests.

I am very aware of the role of the GP as gatekeeper - my wife died as a result of a GP dismissing what were text-book symptoms of cancer.

...unfortunately I can understand how you feel about the NHS, and about every category from gps to consultants and professors making errors and being poor communicators. It seems that there is a frightening hiatus between good and bad oncology departments in this country, and you have come into contact with the worst of the worst. Well, I have not done so well with my own "cancer journey" through the wilderness of my own local hospitals (you can read some more medical errors and omissions on MY profile). You sound as though you feel some guilt attaches to you for not diagnosing yourself immediately! Well, unless you have spent five years training day in day out on the human body, it is unlikely that you would have realised anything amiss earlier. We are bombarded with complaints from gps that they are inundated with paranoid patients trotting in with ephemeral symptoms convinced they have cancer, so that anyone rational tends not to presume the worst from the start. However, you clearly perceived that you were suffering serious problems, and it seems extraordinary how dense and dismissive your gp has been. Well, it's been nearly two months now, and I wonder how you are doing? What did your scans reveal and how are they treating everything - hopefully MUCH more professionally than heretofore. Please let us know how you are feeling. With very best wishes xxxx Penny

Hiya. I'm so angry after reading this story, sometimes the NHS amazes me - for all of the wrong reasons!
My advice would be to go to A&E, and if you are not happy, keep going. A dear friend of mine was diagnosed with pancreatic cancer and passed away 6 months after disgnosis. She had been going to her GPs for 18 months, and they just told her she had gallstones. One lesson I always learnt from her was that she said to me "I wish I had just gone to A&E" I think that sometimes you really need to nag. I never used to but if I'm not happy now I will just say so. Good luck with your treatment and please let us know how you get on x

Have just read your story and had typed you a good long message - went to preview comment and lost the lot! So am going to post this and see what happens and then I will write again!!! (I thought I was good with computers but obviously not).

Michal's Mum (Wendy)

Getting the hang of things now!!

My son is 21 and has testicular cancer too. Has had the operation and is due to go into Christies in Manchester tomorrow to start chemo.

I would say use A&E. We have up to this point in time been to A&E four times!! The first was in Jan when Mike had severe stomach pain. Came home having been told it was referred pain from a bad back. Second visit, again in pain but told to go home and see Dr (which he did.Dr no use whatsoever but actually got a scan booked for 18 March. March 11 (ahem my b/day)Mike saw another Dr and off we trotted to A&E again. Spent most of the day there and ended up on the observation ward where they put you when they are not sure whether to keep you or chuck you out. As it happens the nurse in charge on that ward knew us as she had worked with my husband a few years ago and between her and me fighting his corner as it were he was admitted. Incidentally one of the Drs had said go home and wait for the scan. I said he is not coping with the pain he needs to be admitted and things sorted out.

Anyway that's what happened and he had a scan the next day and that was it we were off on the rocky road.

I think what I am trying to say is you need someone one with you who will fight your corner and make a bit of a fuss if need be.

Oh by the way - fourth visit to A&E - it was a Saturday and had had a bad day with Mike. It was late at night and I was asleep when husband woke me to say he was taking Mike to A&E as he was having difficulty breathing. To cut a long story short it turns out Mike had taken himself off all his medication that day (hence the bad day) and was having what we can only describe as withdrawel symptoms from the drugs. They say they are not addictive but we think differently. This is a young man we are dealing with trying to do things his own way. I think he was just trying to see how he coped with the pain without any pills. He is absolutely clear that he keeps on taking his medication until we get treatment now!!

I am not sure where you are up to with treatment etc but I will be thinking of you and hope to get an update.

Michael's Mum (Wendy)

Your poor son - what a terrible and sadly all-too-common tragedy. Thank goodness you are good at creating a bit of a sir where it's needed. Yes, I think it must be very hard for someone young and previously fit and active to have to come to terms with taking lots of little pills every day. The cocktail of them probably does cumulatively need to be eased off, even if individual drugs claim not to be habit-forming. I hope Michael is now getting the treatment. Why are some sectors of the medical profession so dense? Well, my brother used to be a pharmaceutical rep, and came home with quite a few horror stories about gps whom he got to see another side of. Medicos obviously do have a couple of personae, because my brother had met my oncologist and told me what a great chap he was with good sense of humour. I think that was why I was quite shocked at his bluntness and brusqueness. I did make him laugh later, telling him what I was really suffering from was "iatrophobia" - had to explain to him that means "morbid fear of doctors". xxx and good luck to all of you suffering and those caring. xxxx Penny

It's good to talk to you. Have been following your posts just lately - you have a great sense of humour thru it all!!! I like your picture too.

Well we are just getting ready for Mike's first trip to Christies and his chemo session. He is going into the Young Oncology Unit there and have been told it's excellent. It's for young people up to the age of 24 I think, so he won't be surrounded by old biddies!!! Wish us luck and you take care.
Best wishes Wendy

Yes, I wish you lots of good luck for Mike's first chemo session. It can seem a bit daunting at first, but he'll make friends amongst people of his own age-group, and you'll soon be ticking off the sessions (sorry cycles). I hope that the side-effects of the chemo are minimal, but if you have any anxieties or just want to share all the colourful details with us instead of off-loading things onto relsatives or friends, go right ahead! xxxx Penny

It was a very long day with chemo not starting until 5.00pm! We saw some lovely nurses and the two Drs dealing with us were wonderful. They took all the time in the world with us and so far can only praise them. Allayed any fears Mike had or dealt with them and answered question after question. First drug (BEP) was ok but Cystplatin made him feel sick. There was more anti-sickness drugs if he wanted and I think once they changed his pain relief and he was totally pain free (for the first time in 4 months I might add) then we could all take a deep breath. Husband and I even had the pleasure of complementary massage which was much needed. I know this is only just the beginning but at least now we know what's involved etc. The YOU (Young Oncology Unit) has two bays of four beds, plus side rooms. Four boys on one side and Mike and 3 girls on the other. Don't think he was too impressed with that as girlfriend with him! (only joking). There was also an Oasis room with guitars, music centres and all sorts which parents were not allowed into. There was also accommodation so if you wanted to stay you could. Aswell as bedrooms there was a living room, kitchen, washing machine- everything you would need. I suppose if people are travelling a really long way that is good. We only live about 40 mins so will be travelling back and to. Do I sound as tho I work for Christies or something! I think it's probably just the relief etc that something is being done. Anyway we'll see what today brings and how many times I get told off by Mike for something!!! Yesterday I turned around as we were being shown the accommodation and didn't realise but my should bag had knocked mikes arm (just where the cannular was in) so had to get nurse to come and sort it) NAUGHTY MUMMY. See if I can behave myself today! Wendy xxxxxx

I finished my treatment at Christies at easter and found the facilities there really good. The staff were wonderful, really caring and taking time to make you feel like a person and not just another patient. Hope everything runs smoothly for you and your son. Glenis xx

It sounds as though Christies is a superb place, and especially geared up to understand how to make younger people feel at ease. The guitars sound great - beats staring at daytime tv! Did you mean Cisplatin? If so, I can empathise with the intensity of nausea on that one. I had Metoclopramide, and at one stage Ondansetron against that (the O gave me terrible constipation - prune juice if that happens!). Surrounding are very important. In the hospital I attended for treatment, at first we had a pleasant chemo suite, with view of trees and what I at first presumed to be an historic lace factory (partner explained it is the prison, but it's Victorian and looks attractive). Sunshine used to flood in, and it had a calm feeling. Towards the end of my treatment, the Powers that Be, ordered a swap, and we chemo day patients ended up in a horrible dingy room. When I looked at the map I realised we now had a fine view of the Mortuary! Hmm nice! They'd done this as it was a bigger room, and could fit a lot more chairs/beds. We still only had one nurse, and the poor woman was rushed off her feet trying to look after minimum 50% more patients. Everyone's chemo machine bleeping at once, and it was so remote she could never find anyone to countersign the drugs to hook us up! Sure it made sense in the accountants' dept though..... Good luck with today. xxx Penny

Thanks!! Yesterday went ok as far as the chemo side of it. But we have a very angry young man on our hands now who has become very difficult to live with. Hey ho - I suppose it's part of the process but it makes it very hard to live with. Am leaving it to girlfriend this pm and husband tonight to go and see him. Am having a day off from it and hope to come back a bit stronger. It was 80 degrees in my greenhouse just now and I've planted so many seeds that I'm sure in a few weeks I won't know what to do with it all - runner beans, french beans, tomatoes, Courgettes, broccoli. It's a delight to sow a seed and watch it grow into a plant and then bear fruit. I think husband will talk to nursing staff and see about some counselling - does this really help I wonder? How are you doing? I love the doggy picture. We are great labrador fans. We had two a brother and sister. The girl had to be put down when she was 3 due to kidney problems and doggy dog had to have a leg amputated due to cancer so was running around on three legs for a long time but then we lost him. A year ago (we live on a farm) we found a stray dog ( a cross between a lab and collie) and Michael loves him to bits. Do you think he was sent to us for a reason??

Yes I did mean cisplatin! Had a better day yesterday in respect of the chemo. Mike had had a good nights sleep but was hell to be with during the day! Nothing I said or did was right etc etc. I suppose that's part of the process but it's hard to take. Husband is going to talk to the nurses or drs tonight to see if some counselling would help. I suppose it's still early days. Am having the day off today. Girlfriend is going this pm and hubby tonight. Hopefully this will recharge my batteries. Have been like a mad thing this am in the greenhouse (8o deg) sowing lots of seeds etc. I think I might have to set up my stall at the gate if it all grows!!

Wendy xxxxx

Yes I did mean cisplatin! Had a better day yesterday in respect of the chemo. Mike had had a good nights sleep but was hell to be with during the day! Nothing I said or did was right etc etc. I suppose that's part of the process but it's hard to take. Husband is going to talk to the nurses or drs tonight to see if some counselling would help. I suppose it's still early days. Am having the day off today. Girlfriend is going this pm and hubby tonight. Hopefully this will recharge my batteries. Have been like a mad thing this am in the greenhouse (8o deg) sowing lots of seeds etc. I think I might have to set up my stall at the gate if it all grows!!

Wendy xxxxx

Sounds like anger against his situation, but it's hard that you're being the target instead. Counselling sounds like good idea if it's available. Meanwhile you stay in that greenhouse - I find planting things and sowing seeds, looking at our frogs in the pond (ok, I admit I do talk to them!) and just generally hearing bird song and watching green things grow is very positive. The weather has had its great moments lately, depending upon where you are, and we've been amazed by the beautiful skies in the evening. I do hope that Mike settles into a routine and just gets on with it. It's horribly frustrating suffering from fatigue, sickness and looking in the mirror and seeing someone you don't really recognise staring back at you, but equally it must be awful for you, looking on. Is he taking it out on everyone, or just you in particular? I'm glad that you have family and friends to share the visiting with. Lots of love, xxx Penny

A better day than I thought, if you know what I mean. Mike had a very sicky morning. I went with hubby in evening after all and although feeling poorly back to his old wicked sense of humour - I even got a hug!! He had been taking it out on everyone I might add.
Things change by the minute don't they. Will keep the counselling in mind tho as someone else I know said it helped them greatly. I think he's realised that he's lucky to have his mum and dad and two older brothers and a girlfriend all rooting for him. Hopefully will get him home today or tomorrow. We had a lengthy Shaving of the Head discussion. It was either the horse clippers, sheep shearers or his friend (who is also bald) to do it!!!! I am a dab hand with the horse and sheep clippers so no worries there!
Hope the sun shines this week-end and we can get out and get some fresh air. We have wonderful views of the hills where we live so just being outside is a tonic.
Lots of love and thanks for all the support
Wendy xxxx

just read all about you it such a disgrace what happens in our hospitals and the gp's. My husband had penile cancer last year but the uroligist forgot to let us know he had this condition and didnt send a letter back to our family gp, so he could start treatment. All because of this my husband had a massive lump in his groin which we thought was a hernia which was removed and we were told it was a massive tumour. I swear i could have killed someone my husbands life wasnt worth much to the doctors. In Ireland the waiting times in hospitals in a disgrace and nothing is explained. My husband now has two more tumours which have to be removed in two weeks. We find it very frustrating the doctors dont explain anything and we have been sent to 3 different doctors who wont look at his file so i end up tellng them whats wrong with him. I just hope everything sorts itself out for you Tim. Best Wishes Pink.