Finished chemo & having a rant ;)

[Juliana]

Hi all,

I finished chemo last week - hurrah!

I have to say I found chemo much harder 2nd time around, emotionally - than I did first time around. Several reasons I guess, mainly because first time around you are given hope, that it could cure you, that slim possibility that you grasp hold of and help steer you through the sessions. You don't get that 2nd time around it seems, you are on the same ride - but they don't bother telling you to buckle up for safety as it doesn't seem to matter anymore, however, they will still take a picture of you screaming on the way down

During my course - Gemcitabine - once a week for seven weeks I missed one session due to my white bloods being too low so it was postponed, and one week due to what I like to call my 'episode'. I noticed as the weeks went by that on the morning I was due to have my chemo, I would start feeling sick - even before my treatment - I knew it was psychological but it still made me feel horrible. During my episode I turned up for my treatment, having taken my anti-sickness a while earlier, feeling nauseous and slightly out of breath. The nurses were marvelous, they took me to a quiet - empty room and gave me a glass of water and let me settle down a little. When ready, I went to my treatment room which had about 3-4 other patients seated, having treatment. I sat in my chair, smiled at the nurse on duty even though I knew she would take several attempts to get the needle in (as she always does, and it always bloody hurts) and tried to relax. I then heard the sound of someone's infusion coming to an end - you know....the bing bing bong....and found myself gripping my knees with my head facing down....and tears falling into my lap. I also noticed I couldn't breath much......

The nurse asked if I was ok, but didn't require an answer as I think my whole demeanour gave the game away, so they brought a partition in, sectioned me off and put me on a comfy lie back seat/bed type of thing.....with a blanket. By this time I was pratically hyperventilating and my face was sodden with tears, I could barely speak when asked questions and increasingly felt that I wasn't supposed to be there.

Anyone else felt like that? That you weren't actually supposed to be there...? I know my circumstances are a little different....as when they found my tumor 4yrs ago they told me it was a cyst and that it would never turn cancerous and shouldn't bother me, unless it grew bigger than what it was (which was the size of a grapefruit).

However this cyst did bother me, all the way through a pregnancy - making my life very unpleasant and the life of my unborn baby very precarious....(he was born perfectly healthy - even at 5 weeks early). It continued to 'bother' me until they had to remove it 2 months after having a c-section, and then caused me a great deal of 'bother' when it proclaimed itself cancerous, and had spread it's intention to some nearby lymph nodes.

So.....my 'episode' was in full swing. I had definately got the party started and I had a lovely fan on me, plus a blanket, plus a blood pressure sleeve and a glass of water. I was still crying and couldn't understand what was happening to me, as this has never happened to me before. The nurses rallied around and tried to get my oncologist to come and talk to me, he sent a young DR who was on his team, who I'd never met before and who had no history of my diagnosis/treatment just what I was supposed to be doing on that day/course. She was nice, postponed my cycle till the following week, prescribed me a sedative to take an hour before treatment to help me relax and advised I may need to speak to a counsellor.

To cut a long story short - I took my sedative - even had some cream to help numb my hand for the impending x marks the spot (1st time for once!) and I managed to attend both sessions without any tears.

I was very, very sick after my last session though, vomitted with such force that I burst the blood vessels around my eyes, forehead and neck and for extra effect my glands swole up on both sides of my neck making me look like a bullfrog. I didn't have a temperature, but a DR did come out to check on me just incase.

All in all - my treatment lasted for just over 2months, during that time I have not been contacted by my oncologist, or my specialist nurse - not even after 'crying a river' at the CDU. This is what I find hard the second time around, the complete and utter lack of interest in you as a 'viable' patient. I literally feel like I have been put on a conveyor belt to impending doom, whilst last year I was positively on an escalator....going up!

Even at the meeting with the oncologist to discuss the return of the cancer, I had several questions about trials/cyberknife/alternative treatments etc and it just felt like an episode from Little Britian with the 'computer says no' character.

Anyway....I am feeling much better now and managed to take my little one to play group this morning. I guess at some point I will be summoned for a scan, then an appointment to discuss my scan.....can't wait

Kind regards,

Juliana

p.s. I may email Dr. W. Liu about his work with the 73yr old, containing her PC for 3yrs using combined Gemcitabine and Lenalidomide and see if he can work his magic on the 37yr old (ok ok I'm 38....but only by a few weeks!).

[Nardobd]

Hi Juliana

I'm sorry that you've found chemo such hard going this time. I won't harp on about it because it's over now. Suffice to say that you could have, and should have, been helped more.

The situation with your oncologist and specialist nurse is appaling. Even if the issues you brought up weren't suitable for your circumstances, the onologist should have explained why rather than just saying no. I know that they are limited by time but that's not your fault and if you have questions you are ENTITLED to answers. I am what is colloquially known as a "mouthy cow" and am not afraid to insist that Ted is treated properly - in his response to my formal complaint the Chief Executive of my local Primary Care Trust apologised no less than 8 times!

My advice to you would be not to wait to be summoned but to ring the hospital and speak to the oncologist's secretary and ask for an appointment to discuss your options. Tell her that you would like a double appointment and don't take no for an answer. If she refuses, ring the local PALS office and tell them you've been refused an appointment. They will then take it forward on your behalf. Before the appointment, write down all of your questions so that you don't forget anything. If the oncologist says "no" or answers in some other brusque manner, ask why not. If any action is agreed upon, ask when that will happen, write down the answer and if it hasn't happened within the time stated contact them and ask why.

As for the specialist nurse, ours was astounded to be told that we'd had problems. Apparently, they rely on you to contact them rather than making sure you're ok. She may be able to help with explanations but, of course, she doesn't play a part in decision-making. Nevertheless sometimes the moral support is just as important. Try giving her a call and see whether she's happy to meet with you to discuss the situation and to assist you in composing your questions for the consultant.

Finally, I have come across another therapy which I've detailed in a separate post. I'll keep everyone up to date as and when I receive a reply.

Take care

Nicki

[Juliana]

Hi Nicki,

Thanks for the reply x

I paint a gloomy picture of my oncologist no doubt, but really he is quite pleasant to me when I do get to see him. With the 'no' scenario it was more a reflection of what options were available to me 2nd time around, ie: radiotherapy = no, surgery = no, clinical trials in Wales = no. He tried to explain why certain avenues were closed to me, like when I approached him about Cyberknife, but his initial reaction was just a 'no' until I pressed further for an explanation.

I also get frustrated that even though he is supposed to be a top oncologist, they don't seem to investigate/read up on any of the other possibilities/alternative treatments available. You know.....like thinking a bit 'outside the box'. Whether it's considered rule breaking I don't know, but it's almost like they are allowed to pick any colour in the rainbow to treat you with...as long as it's blue.

I should become more mouthy....my Father says I should nag, nag, nag until I annoy them into doing something atleast. I will try, but I tend to get emotional - which ruins everything!

If you fancy a holiday down the Gower though, let me know - and I will make sure you come stay when I have my appointment

Kind regards,

Juliana x

[Nardobd]

Thanks, Juliana, for your responses on this and the PDT thread. In my former profession (law) there appeared to be a direct correlation between pleasantness and lack of ability, ie the nicer a lawyer was, the worse they were at their job. However a lawyer is trained to think laterally and on multiple levels to achieve a satisfactory outcome, whereas doctors are not trained in that way. A doctor is trained to diagnose a disease (or whatever) and then follow the prescribed treatment plan - a bit like a flow chart. Some doctors overcome that training and think outside the box but that tends to be when the prescribed treatment for the disease hasn't had the desired effect. I suppose it's understandable - after all, if I use unusual clauses in a contract which aren't enforceable it's unlikely to end up in someone's death!

Your father is correct, and it doesn't matter if you get emotional. I know that you will be embarrased about it but you shouldn't be. You must realise that it's completely understandable and acceptable in such a traumatic situation. Any oncologist will see emotional people on a daily basis and should be able to deal with it. If they can't, that's their problem. However, if you feel that your emotions are going to get in the way, then see whether you can get an advocate to come with you to the appointment. That could be your specialist nurse, someone from the PALS team or, possibly, a Macmillan nurse (I'm not sure whether they will do this, but it's worth a try). You should meet with your advocate beforehand so that they know what points you're trying to get across. Then, if you get emotional during the appointment, they can continue to argue the case on your behalf.

Speak soon

Nicki x

[Ellie]

Oh, the emotions you go through, reading these pages! I was so upset for you, Juliana, knowing what your history was, your young age, young kids, and feeling your desperation that everyone had given up on you. Everything must seem so bleak to you.

And then in comes Nicki - doing the research, explaining things so easily and so straight forwardly - and fighting for everyone! You really are such an inspiration, Nicki! I'm sure every one of us wants her at our next oncologists appointment! IHave you thought of going into politics? If you were standing for prime minister, I for one would definitely vote for you, with your sense of planning and organisation and straight talking!

Seriously, I'm sure we all feel we are on a rollercoaster - being told one thing, learning another, having our hopes raised, then dashed again. Personally, I can't stand knowing there is all this new research going on and glimmers of hope appearing, yet I know it will probably not be of any benefit to my husband. I made a list of "new" treatments and asked about them, only to be told that nothing would help once there is secondary pancreatic cancer. But, he is responding well to chemo (Gemcetabine), his tumour has shrunk and his CA19-9 levels are the lowest since Dec 08, so we have to keep hoping.

Don't give up, Juliana! Yes, you've finished your chemo and feel like no one is there for you. Fight for something more! Is there a hospice near to you? I only ask because my husband has had excellent help, backup and support from the staff at one near to us. It's not that he needs their care in the expected way, but they are providing wonderful care in helping him cope with his prognosis and helping him make the most of everything now.

I know it can't be easy in any way, Juliana, but please try to stay positive and just take one day at a time.

Thinking of you and sending my very best wishes

Ellie

x

[Juliana]

Thanks Ellie & Nicki,

Yes, life is a rollercoaster....and that's why forums like this are great to vent off, share info, sympathise and dare we say it - have a laugh

I am now going to ring my oncologist's secretary and demand to be cured asap please as this 'cancer' stuff is starting to get on my nerves a tad (translated means = I'm going to ring and ask if there has been an appointment made for my CT scan yet....).

Will keep you guys posted - and thank you so much for replying to my thread xxx

Juliana

[Juliana]

Hiya all,

Just had my appt through for my CT scan. It's booked in for the 4th November. My chemo finished the 8th of October, so it's 4 weeks post end of treatment before they scan me.....just seems a long wait, I thought they would be eager to see if there had been a change for the good - even more so if there has been a change for the worse.

I don't know if there is a standard length of time before you get scanned post chemo, anyone know?

Juliana

[Nardobd]

Hi Juliana

I don't know if there's a "standard" period post chemo before you get a scan, but four weeks seems a long time to me. Ted only had to wait about 10 days. Mind you, I think that's cuz I'm such a stroppy cow and they know they can't get away with anything! Do you also have an appointment to see the consultant? If not, that could mean you're waiting even longer to find out what the current situation is.

Personally, I would see a four week plus wait as unacceptable and I would be using such arguments as "If my GP referred me because he thought I might have cancer, you would have to see me within two weeks. How come I have to wait a month or more?".

This refers to what is commonly called "The Two Week Rule" - if a GP makes an urgent referral of a patient suspected of having cancer then the patient should not have to wait more than 2 weeks to be seen. The hospital will then try to argue that this is to ensure that patients get treatment as soon as possible and you have already had treatment so the same principles don't apply. My response to that would be something along the lines of "But what if the scan shows something which requires a different treatment or other important information which affects my situation?". The arguments are circular and you just have to keep saying "Yes, but.....". Eventually you will wear them down!

Good luck

Nicki x

[emcee46]

Just a couple of bobs'-worth from me which may, or may not, be helpful. When my partner was diagnosed, the consultant surgeon we initially dealt with said that, if we weren't totally covered for cancer on private medical insurance (we weren't), he wouldn't find any drawback in that - given the improvements in general UK cancer care over the past four years or so (his words) - but, if things like scans were a bit slow in coming on the NHS that is probably the only time he, himself, would look at paying up-front for an earlier one. I agree with the pounding thing - there is no doubt (which is disgraceful) that the louder your voice is, the more likely you are to get heard, but, as we all know, it can work the other way. So ... if you feel the need and can rustle up the 'readies' I would try to secure an earlier private scan.

[Juliana]

Hiya both,

Thanks for the replies.

I forsee a phonecall to my oncologist's secretary tomorrow....will let you know how I've got on.

Juliana

[Juliana]

Just called my oncologists secretary.

She is going to see if there is anything that can be done with regards the late scan, but she doesn't seem hopeful and also my oncologist is not around, he is off for 1 month. He is also now semi-retired (hence maybe the late scan request?), so if I wanted to see him I couldn't until the 17th of November. bearing in mind that my treatment finished 8th October and the last time I saw him was 10th of August.

Starting to get stressed out.

Juliana

[Juliana]

Ok.....so apparently I wasn't supposed to finish chemo just yet.

Even though my oncologist told me in August I would have 7 sessions of chemo then a scan, apparently I'm due another 3 sessions before my scan - so I've missed a cycle or two. The registrar has now booked me in for another 3 sessions and postponed my scan to compensate for the gap in treatment.

If I hadn't had rung today, I would have just turned up for my scan - then waited for an appointment, being none the wiser. Nobody noticed I hadn't been for my chemo, it was me questioning the long gap that brought it to their attention.

Juliana

[Nardobd]

My jaw is still open! Such an important treatment and they "didn't notice"!!! That is truly appalling incompetence. I'm so glad now that I encouraged you to speak up. I can't think of anything more to say (you'll appreciate that's almost unheard of for me!) save that I'd be really decisive and assertive with them from now on.

Nicki x

[Juliana]

Feeling a bit depressed about the whole treatment side, I contacted another oncologist at xx to see if he would consider me as a patient and he advised that Pancreatic was not his speciality, and to stick with the one I have to receive the 'continuity of care'. Almost laughed out loud reading that. Then a friend of mine advised that apparently nobody at xx actually specialises or has any research interest in Pancreatic, not just in xx - but in Wales. Don't know what to do.

Juliana

[Nardobd]

Hi Juliana and I'm sorry you don't seem to be having much luck at the moment. Singleton is named as one of the specialist pancreatic cancer treatment centres, so I'd be surprised if there's no one on staff with an interest. Don't forget that pancreatic cancer is often lumped together with "GI cancers" and it may just be that the descriptions used are more general.

Partly in response to this post and partly due to your other message regarding clinical trials, I thought you might be interested in a group I've found called the "Wales Cancer Trials Network", whose website address is www.wales.nhs.uk/sites3/home.cfm?orgid=464

The group cover all cancer trials including pancreatic cancer and issue newsletters every three months - the May newsletter mentions a trial relating to pancreatic cancer which was just starting in Wales at that time: www.wales.nhs.uk/sites3/Documents/464/May%202009.pdf

Kind regards

Nicki x

[Juliana]

Hi all,

My head is swimming at the moment....information overload.

I've got chemo tomorrow morning, but I really don't want to go. Sounds selfish doesn't it. It's not that I don't want to fight this thing, I just want to try something different. Only problem is, I don't know what.

Anybody heard of Cimetidine used as an anti-cancer drug?

http://www.second-opinions.co.uk/cimetidine.html

or anything else on the site?

That Coley's Toxins story is an interesting read.

Juliana

p.s. got in contact with friends of mine who treated their father with Novodalin (B17) for prostate cancer, he is still alive and well....

[Nardobd]

Hi Juliana

Yes, overload is a problem, mainly because everyone wants to promote their own idea/concept/product. It ends up with not being able to see the wood for the trees and becomes counter-productive after a while. Research techniques are vital and I would recommend (a) restricting the time you spend researching, whether by reference to time or by limiting the number of subjects/tangents you're reading up on. If you do this, you need to be really self-disciplined because it's easy for one subject or tanget to lead on to another; or (b) as you read, make bullet-point notes. Restrict yourself to a number, say 10 bullet points per internet page. If you're trying to decide whether to pursue something then you could fall back on the old "pros and cons" system where you write positive points on one side of the page and negatives on the other. If nothing else, it will give you some documentation to rely on when you discuss it with the medical team.

As to chemo, no I don't think you're being selfish at all. However, and forgive me for being a bit blunt here, your messages seem to read as if chemo is something that is being done TO you and not a therapy in which you are a willing participant. If that's the case then you need to start talking about this, not only with the medical team but with your friends and family. Remember: your body, your illness, YOUR (informed)decision. Please don't think I'm advocating that you should stop chemo, that's not the case at all, but I'm firmly convinced that everyone should have the right to decide provided, of course, that the decision is made in full knowledge of all of the facts. That's why I won't push Ted into an op. I've told him that he will never hear me say any more about it if he decides no. Of course, I think he should - mainly because of the proven options at the moment the op is the only one to have any documented success albeit only in some cases - but the decision is his to make and I won't second-guess him.

The website you found is interesting and there are a number of seemingly well researched ideas both in relation to cancer and general health. Don't forget though the phrase "lies, damned lies and statistics": you can make the numbers say anything if you juggle enough. There are also some opinions on there which I've read have been subsequently disproved. If you're going to follow any advice given on this website or any other please discuss it first - if not with the oncology team then with your GP, just to get a medical opinion. As mentioned already, the final decision is yours to make but it can't hurt to have another opinion on the subject.

Take care

Nicki x

[Juliana]

Hi Nicki,

Well....I went for chemo - tried it without the sedative this time in the hope I could manage, and not be wiped out for the day. I took my anti-sickness too, and walking into the CDU wasn't as bad as the last few times. The cannula went in first time and without pain. The rate had to be slowed down though as it was burning, and it took about 1hr 45mins to complete. By that time I was on the edge of my seat, biting the bit to leave. I had struggled all the way through with feelings of wanting to pull it out and run away....I even asked if I could have the minimal amount of flush after the chemo as I needed to leave asap.

The whole experience left me exhausted, and after eating some lunch my husband took me home and I went straight to bed for about 4hrs.

You're right about how I feel this time with regards chemo. I'm just not 'seeing' it as an aid this time around, probably because it hasn't been 'sold' to me this way unlike first time around. I don't know how to get past this. It is such a strong feeling it frightens me, how can I even consider not doing chemo? I would feel guilty and a coward if I said I didn't want it anymore, especially if the decision shortened the time I have left with my children. And for a treatment that is causing me minimal side-effects physically, it seems to be torturing me mentally and I can't seem to change the mindset.

Last year there was that slim chance it may work, so it's easy to take that chance. This time I am on single dose not combined, a weaker regime and this is basically because they know it's not going to cure, at best it may slow things down.

It hasn't helped with any pain or symptoms, because the pain in my back went on it's own accord whilst on holiday in the sunshine....Infact since chemo I have had mild 'new' symptoms of discomfort in the chest area - different to what I had before, but not painful enough to take any pain killers for.

I really don't know what to do. I know my GP and oncologist are not supportive of any unorthodox treatment so I don't know how to discuss this with them, yet I don't want to be taken advantage of by someone selling a snake oil and wasting my time even further.

It is on my mind constantly, and is totally wearing me out.

Juliana

[Nardobd]

Hi Juliana and well done for tolerating the chemo - you deserve a big pat on the back.

I completely understand the dilemma. Ted is suffering the same thing right now, knowing that he may be offered an op, and started to get very low because of the constant internal battle.

Medical doctors who dismiss complementary therapies are, in my opinion, very short-sighted. Many formerly natural therapies have led to drugs we use as conventional therapy today. Take, for example, Digoxin (a heart drug) which emanates from the Foxglove plant and Warfarin (blood thinner) is a synthetic derivative of coumarin, a chemical found naturally in many plants. As a child I got stung by nettles and the leaves from a nearby Dock plant soothed the area.

Luckily, though, not all doctors think that way and in your hospital you have a doctor who is keen to promote evidenced-based CAMS (complementary and alternative medicine). Her name is Anona Blackwell and there is an article about her on the website of the former Abertawe Bro Morgannwg NHS Trust, which you can read here: http://www.abm.university-trust.wales.nhs.uk/news.cfm?orgid=743&contentid=9533

If she's unable to assist, you might want to contact the Royal College of Physicians Integrated Health Committee, which is a committee looking into CAMs. The contact given on the RCP website for the Integrated Health Committee is catharine.perry@rcplondon.ac.uk

Hope that helps

Nicki x

[clair2305]

Yes, like others here, I had to pick my jaw up....I couldn't believe the wait for a CT scan for you and then, oops by the way you are meant to be still having chemo.

I seriously think you should "complain". I say complain in "" because I think maybe you should write a feedback letter, letting them know the emotional impact of their errors, obviously it seems as though the wait for a CT scan wasn't really long, because you were meant to be having chemo still.

And how can you have a part-time/semi-retired oncologist, cancer isn't part-time. Surely there must be another oncologist at the hospital. Maybe speak to your GP about your concerns regarding the failings at the hospital or your local Mac nurse, you don't need that added stress, you just need to know what happens on what day and it should all happen seemlessly in the background without you having to chase secretaries, etc.

Glad to hear you tolerated chemo, I also think all the problems with the systems have contributed to you feeling mentally tortured when going for chemo. I don't know anything about the hospital you attend and it's probably a hell of a lot different to Addenbookes (where we go) but I think you should raise your concerns, maybe speak to the mac team/palliative care team at the hospital (or get your hubby to)

Best wishes

Clair

[Ellie]

Hi Juliana

Just want you to know that I feel for you so much. You're not having an easy time of it, not just emotionally, but practically.

I really hope you can get someting sorted out, so at least the practical side of things improves. Do you have any local cancer charities near you? Our hospital put us in touch with one and they were really good at offering complimentary therapies, such as hypnotherapy and massages, both for relaxation purposes. Also, we are lucky to be near a hospice and Brian goes there sometimes, again for the relaxation side of things, but the doctors are exceptionally good. They seem to be a lot more focused on improving quality of life and getting the right balance of drugs etc, whereas the hospital only really focus on "treating" the cancer with chemo.

Anyway, just wanted to say that I am thinking about you and send you hugs and strength to keep up the fight. I really do hope you will feel calmer and more positive very soon.

You take care of yourself

Love

Ellie

xx

[Juliana]

Thanks guys x

I didn't sleep very well lastnight which is soooooo unlike me. Throught this all I have always been able to sleep and only the odd occasion have I suffered loss of sleep through stress (after leaving the hospital post Whipples and Diagnosis I couldn't sleep and was too scared to switch the lights off in the bedroom).

I think on Monday I will ring up and ask to speak to the Registrar, try and explain how I feel. I'm also concerned that I have to wait until December for my CT scan, that's 5 months since my last one. It's a long time to wait to see if chemo has done anything, and I am not sure how much difference 2 cycles of chemo will make to that.

It's hard to partake in something you've been told is not going to work long term, it's just a short term fix which may not even work short term....lol....make sense?

I want something long term........very very long thank you!

I may also contact PALS like Nicki suggested. I had never heard of them, and unfortunately there aren't any offices local to me - so may try the Bristol office and see what they suggest.

I have also been looking into:

http://www.oasisofhope.com/ (although this is a long journey, and it costs ALOT)

http://www.germancancerclinics.com/st-george-hospital-german-cancer-treatment.html (closer, and not quite sure of the cost yet)

http://www.drhembry.com/index.html (check the integrated cancer support and specialist diagnostics pages, quite interesting)

and finally:

http://www.pennybrohncancercare.org/page1.asp (no intravenous therapy, but more for emotional and well being etc).

Hi Ellie, yes I think there are some local cancer charities in the area that offer reflexology and meditation - I may look into this even though naturally I am not the 'meditation' type of person.....but as for massage........hell yes.

Basically I know I have to do something. I tell my husband how I feel, he listens....but does not give me any feedback. He doesn't really get involved with any of the medical stuff, does not do any research, does not get cross when I am not being looked after, just doesn't get involved. He does however work full time, is great with the kids and tries to keep everything as normal as possible.

Anyway....I'm still in my jimjams....had better go and get dressed!

Love -

Juliana x

[Juliana]

Hi guys,

Just to keep you updated, I had a conversation with the registrar on the team looking after me, and explained to her my concerns about the postponed scan, the feelings about chemo and the desperate search for something else to try. She was very nice towards the end of the conversation, a little stand off ish at first as we have never met, so she has no connection with me as such. She more or less said that chemo was the only option and not to waste my money on other things that have not had full clinical trials etc and may only work for some people - I explained when the drugs that had been trialled, tested and confirmed to work with some people didn't work for me - that I wasn't left with many options other than to look for something unusual to try.

Anyway, long conversation short and it resulted in me getting a CT scan - this morning I am hoping to get a meeting next week, and so if it is bad news I can have my doomsday session, get it over and done with before Christmas kicks in. And also start taking steps towards something else to try!

I have been taking B17 tablets, only started this week, small dose to see if I had any dodgy side-effects, but nothing so far. Slowly upping my dose daily, and have contacted a physician who may help with information on the maximum dose required for this type of cancer.

Juliana x

[Nardobd]

Hi Juliana and I'm pleased to see that your call did achieve something, at least. Whether the news is good or bad, I think knowing is much easier than living in limbo. At least you're dealing with facts, not "what if"s and "maybe"s.

As to alternative treatments, my opinion is that a balance has to be struck. A lot of our modern medicine has its origins from natural remedies and, although I can see the registrar's argument, I can only agree with her up to a certain degree. Of course, none of us want to waste our money on so-called therapies which are simply a con but if they are reasonably priced, do no harm and may help then why not try them alongside formal medical treatments? Naturally if the alternative remediy interferes in any way with the traditional medical treatment or could cause harm to the patient, then that's a different story.

Keep us up to date with any news.

Nicki x

[Juliana]

Hello all,

Just an update - rang today to see if the results of my scan were in, they were - but of course the secretary could not discuss details over the phone. Then she advised the registrar was away, for a week - and my oncologist is still away....so I asked if there was 'anyone' who could speak to me about the results....she said she will try and get someone to call me tomorrow.

Feeling nervous.......have immersed myself in looking at dogs and puppies online. It's a great distraction, but a dangerous one too! I lost my dog at Easter time, she was 12.5yrs old and a staffy bull, and she died in my arms - I am guessing of a heart attack or stroke. I cried every day for a month, and then just every week or so or at the drop of a hat.....I had her when she was 6 weeks old, and she was my best mate. I swore I would never replace her, but here I am - scanning the net - not sure if it's a knee-jerk reaction or just broodyness, however it does open up some sort of debate:

I had thought at the time, if I were to get another dog, it would be when the kids were a bit older and no longer wanted cuddling as much. This was before I knew the cancer had come back. During this time I had also toyed with the idea of getting chickens and an 'eglu'. When my diagnosis hit 2nd time around I put a stop to the chicken idea as I didn't want to take on something I may not be able to see through to the end. Also, at the time I was in a lot of discomfort and pain in my back (which went on it's own accord whilst in the sun in Menorca) and thought that life was just going to get worse.

My turmoil is this, do I live life as normally as possible and try to do things I would like to do in the future, a little bit sooner. Or, do I keep important decisions like doggies on a back burner or a not going to happen burner because if things do take a turn for the worse I may:

Not be well enough to walk and look after the dog

Leave my husband with not only 3 kids, but a dog to boot (not literally!)

It's hard. I don't know whether the 'wanting' a dog is just a hormonal episode, or if I am just panicking over the fact I may never have a chance to have a dog again, or just blind panic and needing a distraction to keep me focused.

My health is good, I do get mild discomfort in my back/torso and I dread to think what causes it - but I do not have to take painkillers, so it's not unbearable. When I feel like this I just can't see how I have only got 2-8months left out of my 6-12months deadline.

Feedback plz!

Juliana x