Well, i had my first chemo just over 3 weeks ago, and i thought it went quite well, not too many side effects, achy joints and a bit tired but all in all not as bad as i'd expected.
I've been coping quite well emotionally, the cancer had been removed in surgery and the chemo was supposed to be just in case there were any nasty cells left unseen, and so i always thought myself as had cancer, not have cancer.
Just before my first chemo i had a ct scan, just for a base line to compare any future scans against. Anyway, was due to have second chemo last Thursday and on my Tuesday clinic appointment had the usual bloods and saw a doctor (not the one i'd seen on my last two appointments). He asked how i'd been etc, and i told him i felt fine and was coping well. My husband asked him if my ct scan was ok, and he said oh i'll go and have a look. We waited and he came back a few minutes later with. We found another couple of small cysts in your pelvis area and with your history we would say they're probably cancer, and also your lymph glands are enlarged.
Well it was the last thing we'd expected to hear, and of course we were caught off guard, we didn't know what questions to ask and to be honest, the doctor wasn't forthcoming with anything other than we will continue with the chemo and then do another scan and see how things are then. Why did we have to ask for the results, if the scan showed a problem, why didnt they tell me straight away???
I had to wait then for the blood results so i could have chemo on thursday, but the nurse then called me in and my platelets are to low to have chemo and so i have to wait to see how my blood is on Tuesday. Is it common for the platelets to be low on the first chemo?
I must say from being optomistic at the start of this journey i'm starting to have horrible thoughts. I think my poor husband is strugling too, he lost his mum to cancer 10 years ago, and his dad to cancer on July 15th this year, i can understand how it must be affecting him and i hate that i've got to put him through seeing me ill. He's just ploughing himself into work, but i could do with him spending more time with me. My family live miles away and he's all i've got here.
I dont know what to do anymore. I've gone from being strong, to being numb.
I think reading all of your blogs and knowing i'm not alone is the only support i have.
Thanks for listening.
FormerMember
Very sorry to hear that a potential bombshell has been dropped so casually - I think that some consultants are extremely poor communicators, and neglect to mention things, either so as not to worry you unnecessarily (upon the presumption that by the time the chemo is completed and another scan done, it may well be that these enlargements have shrunk - which is the purpose of the chemo), or becaue they think that everything is under (their) control and the patient shouldn't be told anything complicated as they may not - poor things - understand (which was how, looking back, I interpret my first oncologist's lack of communication with me).
I'm not suprised you have been dumbfounded by this discovery - your reactions mirrored my own, as during the chemo I was cautiously positive - then felt absolutely gobsmacked when the oncologist casually said, "Oh, we'll start on your neck, next..."
I think that it is a great pity that it is not standard procedure for oncologists to actually offer the patient the chance to sit down at diagnosis time and explain the scan - this is what always happens if Dr Alice Roberts is there on the telly! I asked to see my scan when I was diagnosed, and the chap just pointed to the empty x-ray clips, and said that in the old days they could have shown me, but as they have no computer in the consulting room.... About time they DID in my opinion, and there would be fewer mistakes and more comprehension.
However, generalities aside, this is YOU who have been knocked sideways. Can I ask whether you have a Cancer MacMillan nurse supporting you? It may be a very apposite time for her (or am I being sexist?) to come out and see BOTH of you. They are not just for the patient but for the family members affected, as well. I know that men sometimes find it harder to admit that they could do with some emotional help - my partner tends to clam up, but he did find my Cancer MacMillan nurse very helpful, and was reassured at the fact that she does actually hold a clinic for partners (not that he's been yet, but just knowing that other men struggle I think normalised his own feelings).
I'm sending hugs and best wishes. Let's hope that the swellings are all just your lymph nodes fighting this wretched thing, and the cysts could well be benign and absolutely nothing to do with this. I hope that you can have a talk with someone about this. Do you have a good gp, as they are usually sent all the details, and I found mine less intimidating, and also more willing to spend the time explaining things to me.
Lots of love - and hoping this turns out to have been needlessly alarming. Yes, I think from what I saw, that chemo is so powerful that just one can actually mess up blood counts, so hopefully a slight delay will just give you time and space to build up your energies with some healthy food to get back on track.
Lots of love xxxx Penny PS We're always here to listen so shout again if you are struggling!
Yes, it is so worrying to be handed something like this at the last minute. You need to think of Chemo as something they will only give you if you are well enough. It is really fierce stuff designed to kill cancer cells, and it can damage you as well, so they have to make sure that you are OK.
I had to ask about the x-ray they took for the anaesthetic. It was after my chemo, seven months later that I was finally told that my heart was a little enlarged. I asked my GP and he sent me for an ECG and that was OK, but my lungs could have been full of tumours and I would never have known without asking. I like to think that if there had been anything to be concerned about, they would have told me.
Usually, I found the staff to be very helpful. They did have computers in the consulting rooms, and my consultant and his team were all very good about swinging the screen around and showing me what they were talking about. My consultant kindly marked one of my blood test sheets to show me what I needed to pay attention to. So yes, I was very lucky, but as your husband no doubt had discovered for himself, it does no harm to ask. Often they don't tell you things unless you do. Some people prefer to remain ignorant, and others like to know the whole scale of things, if not all the details.
It is so tough for your husband having lost both parents to cancer and one so recently. Of course he is going to be concerned for you, but it is a huge mountain for him to climb as well. If he needs to bury himself in work so that he can cope, you are going to be on your own a bit, but there is always us.
Just don't let him do too much. He needs rest as well as oblivion.
Hi Rachael - and first off, you have one chemotherapy cycle over and done with, and you experienced no major "baddies" in the side effect department, which is definitely very promising.
Going to the bit where your husband asked about your CT scan, I agree with you, why is it that so many of us have experiences like that? So, had your husband not asked about the results of that scan, when would you have learnt of the couple of cysts and the fact that your lymph glands were enlarged? If anyone undergoes a test/scan, and an abnormality shows up, why can't we be informed of this as a matter of urgency? These "teams" meet up to discuss cases and if they know you are due to come in for a consultation, the results of your latest test/scan should be there in your file, in front of the doctor, who can then inform you of the findings. Maybe doctors believe (mistakenly I think) that we can not deal with the complexities of a disease such as cancer. I would prefer to be told thank you very much, as I like to know the nature of the beast I'm fighting.
The word PROBABLY spoken by a doctor in conjunction with any cancer can be scary, but it does NOT mean POSITIVELY, OR DEFINITELY!
Once more, like a good few us, you are back playing the "waiting game". This time when you are due to see the oncologist or one of the team of doctors; make sure you have your questions written down! When they're telling you something that you don't understand, ask them to repeat it all until you DO understand. Regarding the low platelets; the exact same thing happened to me, and I'm sure it's happened to lots of people on this site.
I know Rachael that what you are going through is truly horrendous, but your husband must be living his own worst nightmare. He lost his Mum and also his Dad to this cowardly disease. Both of you must still be going through the grieving process for your father in law. He must be so very frightened for you, knowing that you are suffering from the very disease which took both his parents from him. It must be akin to a kind of torture for him, so I can understand why he would feel the need to plough himself into his work. You've both been given news which has really shaken you, and when that happens, I think we all need time to adapt and adjust.
Now your challenge is; get out of NUMB as quickly as you can, and make a speedy return to STRONG!! Keep fighting Rachael cause you're most definitely not alone. with love and hugs and xxxxxxx's kate
What a blow this has been. As you said in your blog, it was the last thing you expected to hear. The only thing I can say is that the scan was done as a base for comparison and it was done BEFORE you started chemo. The important scan will be the one they do after you have had several cycles when they can see how your body is responding to the chemo and whether the tumours have shrunk. Like you I have ovarian cancer, and every time I ask a question, my oncologist tells me that he just doesn't know. My primary tumour was removed at the time of my operation, but I still have several small tumours remaining in the omentum, bowel, liver and kidneys. And until my next scan I won't know definitely how I'm responding to chemo. It's such a pity that your next cycle has had to be delayed, but it will give you a chance to build your strength back up again. Hang in there, Rachael - it's a setback but that's all - you have no reason yet to believe your chemo won't work and your tumours will disappear. If you feel like chatting at any time, just send me a PM. Lots of love, Kate xxxx
PS: What chemo are you having - I'm on carboplatin and paclitaxel
Thank you for all your kind words, they really do mean a lot x
Things are settling down after the bombshell and i must say i'm feeling a lot stronger and more positive with a bit of time. Kevin is still in his own little world, but i think with a little TLC he'll be fine. With regard to the macmillan nurses, i'm not sure wether anyone at the hospital has ever mentioned them to me. Or they have and with everything else to take in its just gone in one ear and out the other. What exactly do they do? One lady in chemo told me that they can help with any benefits you may be entitled to, i dont think i'll be entitled to anything. Are they also like counsellors?
One thing i did see on a notice board at my hospital is something called look good feel good where you can take a beauty workshop, they show you how to do make up etc and they give you a big bag of beauty products, all free. So i think i may call them today and book an appointment.
My platelets are back to normal and they couldn't fit me in for chemo til next week, but on tuesday afternoon i got a telephone call and they had a cancellation, so i had my chemo yesterday. Dont feel too bad at the mo, but i didn't sleep very well last night, felt a bit sick. Ok now though, so fingers crossed.
Well, thats all from me for today, I hope you are all doing well with everything. Lots of love and huggs to you all, Rachael xxxxxxxxxx
