Hiya, spent some time on this site over the last few monthes picking up valuable hints & tips for my totally tecnnophobe wife,who also does not want to read about this thing she “picked up” 3 monthes ago…“I’ve not been to my GP for 26 years !!!”
Anyway, I’ve got 7 weeks to spare after a hip resurfacing op last friday so I thought I could keep a diary of my wife’s 20 weeks of hell while on arm 4 (her words !!)
I cant promise to be on here every day/week but I WILL finish the “course”, hopefully it will help somebody because i’m hoping it will help me (selfish male ;o))
Anyway,a bit of background info. John & Sue,working class,mid 50’s,pretty private,2 great kids who have settled up north after Uni (neither married)…errrrrrrrrr…youthful outlook and love the simple life (walking,real ale,music,cinema)
So, 3 invasive lumps removed by mastectomy and lymph nodes clear (we’re still not convinced that this is brilliant news !!??) Sue has chosen the trial becaue she hoped to get arm 4 because she’s gonna be a mother of the bride next March and she needs her hair. Like I said we’re both quite private people and we have kept this very much within the family (who all live many miles away) and ,personally,i am not into (((hugs))) because I feel we can get through this s**t with the help of the nurses.
Speak soon and best wishes. Oh yes, chemo starts tomorrow and our daughter is down to see her mum through the first 5 days.
Hi Wockey,
Its good to hear from you although I wish it wasn’t under these circumstances.
I agree with you this site is good for tips and advice. My husband are of a similar age, have the same interests and quiet private too. I hate sharing the experiences with work colleagues, bar one who is male and a really good listener. I get sick of people telling me how good I look ‘considering’. Still I expect its hard to know what else to say to someone who doesn’t share the finer details.
Chemo is one more move towards keeping on top of this ‘inconvenience’ as I call it, I hope Sue gets over the side effects quickly. Take care the both of you.
Regards
Carol
I am on arm 3 of the same trial so am taking the same drugs without the ‘speeding up’ process. So far I have got through it okay without too many side effects and am about the
same age as your wife. I also am not normally an ill person in fact this is my first sick note in 35yrs and really is more of an inconvenience to me than anything else. There is a posting on Tact 2 arm 3 started by people on this trial which you may find useful.
Hi Wockey, i am nearly at the end of arm4 for the tact 2 trial. It cannot come fast enough. However, I have liked the lack of needles and hanging around the chemo unit for ages with having xeloda tablets. They are certainly less rough than the epi which i found hard. They do have side effects of their own such as dry hands and feet and sore mouth but everyone reacts differently to chemos. My last one is due 28th July and have had no delays for treatment so far. Wishing you and your wife well and good luck
Rach
Day One. Sue and our angel of a daughter (she’s a nurse) have been back a few hours. PICC line inserted,Xray and chemo administered and daughter will give the follow up injection herself at home. Sue informed that she can give herself the “booster” injections …or i can do them !!! Anyway, thats 4 less visits.
They also arrived back with a large bag of medical (goodies) for use by the GP’s practice nurse for changing PICC dressing and doing bloods. Most important, Sue has returned with a new found confidence…i hope it lasts and i wish our dear angel wasn’t going home at the weekend ;o( Seeya soon.
Day Two. Sue took herself off to bed at 10pm on day one feeling “fuzzy and nauseous”. She had approx 2 hrs sleep. Day 2 spent curled up either in bed or on the sofa feeling poorly. Ate very little but drank orange squash and lucozade because water didn’t taste very good. Took herself off to bed at 6pm but did not sleep. She asked me how I would feel if she decided to stop the treatment . My Sue is no Jane Tomlinson!!! I still feel that she no longer has cancer, the breast has been removed and the nodes were clear and that this chemo is a precaution thing. Maybe i have my head in the sand, anyway I told her to give it a few days then make a decision.
Day 3. Sue spent all day curled up on the sofa or bed. She cant be bothered to read,watch TV (which she doesn’t usually anyway !!) My attempts at conversation are wasted on her. Late afternoon she starts wretching but nothing coming out because she hasn’t hasn’t ate anything. Hope this isn’t going to put people off having chemo,surely they can “up” her meds because i think she will jack in. Truly awful night,sue cant sleep and I,only on my back because of my hip operation. We are going to laugh about this one day !!!
Day 4. Wretching early morning only but still no sleep AND sue tells me that she has lost a further 7lbs. Sue has been a fighting fit 9 stone for years but lost a stone over the 6 weeks of her finding out she had it and having a mastectomy. Not going to much time to “strengthen her up” before the next session (if she has it !!)
Accelerated may not have been good news,but she is going to see the team/oncologist next week. So, S ate some crisps,biscuits ans toast and a bottle of lucazade during the day,got up and watched a bit of telly then took 2 diazipan and had a decent nights sleep.
Day 5. S up bright and early after her sleep. Ate well plus loads of crisps,wine gums,fruit cake and lucozade (she doesn’t usually eat rubbish and I’m a weak person who doesn’t need to put on weight !!) Still feels weak but i get a feeling she will be going out tomorrow. Dont think I’ll be back on her until the end of the month. Take care of yourselves one and all.
Day 11. had a quiet relaxed week which included a visit to the oncologist. Explained about the “burning head " experienced during her fist session,meds have been altered so hopefully the 2nd session will be easier for Sue. Anyway, today we both went to get a wig for Sue. She didn’t seen enthuiastic and let the nice lady take control but came away with a really nice job that was so like her own hair (before she has it cut short) I think the wig session reminded her of her illness and the tears started to flow at 6ish. We had a bad night,her crying and asking why " cant I be stronger” etc etc. I foolishly lost the plot and told her to stop being so wimpish and to get a bit of “fight”. She took herself off to the spare room so that I could have some sleep !!! One of our bad days.
Hiya Ann, many thanks for the advise. We have both spoke to one of the BC nurses today and she was very helpful. We are certainly going through something new at the moment and we are learning from our mistakes (my mistakes!!) Main thing is we are going to get through this thing with the help of our families (albeit they are a long way away) and the great hospital staff…and yourselves of course ;o) Both our kids have settled “up north” after Uni but have been as good as gold alternating visits. We dont have the benifit of family coming around,which never really bothered us until now !! Luckily I am on 6 wks sick leave following a hip replacement so dont have the bother of work at a time when Sue needs me. I will visit the other forums and will download the booklet. Thanks again.
Day 16. 2nd lot of chemo administered plus stronger painkillers for the “burning head” (hopefully!!) BC nurse told us that the fitter you are the worse the affects of chemo can be, something to do with the body not being used to dealing with drugs ???!!! Anyway,we shall just have to wait and see what the next 3 days bring. If affects are the same she will probably come off epi and steroids.
I hope things improve for her, I don’t think it would be a good idea to come off the epi as I was told by the oncologist on tuesday that this was the important part of my treatment. Thankfully my 4 sessions are now over and I had my 1st CMF on tuesday and feeling a bit better so far (only 2 days in though). I had 2 tumours (grade 3) removed with no lymph nodes involved, I was told the chemo was a mopping up process for any stray cells. I lost my mum to cancer (not breast) last year and my sister 5 years ago, both diadnosed too late for chemo. I watched both my mum and sister die through this dreadful disease …they had no choice! at my lowest times I try to remind myself how fortunate I am that my cancer has been removed and that what i’m going through is temporary.
I do hope and pray she will manage to see this through. I really feel for you too Wockey, my husband has shared some of his thoughts with me, I can see he is really worn out with worry for me and still trying to keep his ordinary day to day life together. I’m sure you must be struggling yourself with your hip operation and could be doing with a little care too. I hope you make the most of the times your family stay for a little respite.
Take care
Lizx
Day 17. Seems quite OK. fuzzy head started after the steroids but burning sensation in head not yet arrived, hopefully stronger painkillers will help. She has ordered some Christmas stuff so good to see her looking ahead. Praying for a good night.
Day 18. Tired but no major head pain after a good sleep… Stayed in bed until 5pm when she noticed hair falling out. Gave Sue a haircut down to a No. 1,no fuss,she actually doesn’t look so bad and now able to utilise her selection of turbans,bandanas and her wig.
Day 19. Anther day mainly in bed,tired but eating ok. Felt a little nauseous for a few hours but meds sorted things out. Peaceful day until evening when she became incresingly anxious about the PICC line in her arm…“sick of this”…“getting on my nerves” etc. was preparing for bed when she lost the plot !! She took a diazipan then I took her to the hospital were the line was removed by a nice nurse on the cancer ward. back home for tea & toast and bit of a yap then a good nights sleep. Problem solved !!
Day 20. Sue up early,showered and had breakfast (2 rounds of toast instead of one !!) Concerned about her anxiety/negativity especially now that our son is staying…they get on so well and usually yap endlessly. I so wish we had lots of peeps coming through our door,it may just help. She seems so “within herself”
and unable to concentrate/read/watch TV. Anyway,Paul took his mum to the seafront while I cooked dinner,she looked so smart with her new french turban and little fringe piece. Difficult to deal with things going on in the head !!
Day 21. BC nurse has made an appointment with the psychologist. Told us its a regular request and a couple of sessions may just help. Spent a few hours down the sea front and then spent rest of day chatting and watching rubbish TV. I take my hat off to those who cope with this s~~t and have a family to look after.
Day 24. Depression !!! Sue now wont go out,hates wearing turbans etc and wants to be uncovered BUT doesn’t want people staring at her so she stays in !!
Called out GP who checked her over then prescribed anti depressants which wont really kick in for 3 weeks BUT he says she may be ok by then.
Coming from the “fresh air,exercise and keep whistling” school of How to deal with depression,I am now going to have to re- educate myself…HELP !!!
PS hospital psychologist cant see her for 2 to 3 weeks (she needs help now!!) so have booked her in with a private councellor for next week…how do i get her down there !!
Hi Wookey
I think its still all early days yet. I dont go out for about 2 weeks after my chemo. Poor dog has OH to drag him around and the kids have to rely on lifts from my mum. Then I have 2 weeks good and do lots.
Its such a lot to take on board. Horrible side effects from chemo. No hair. I reckon by next week she’l fel a bit better and you’l get her to the councellor ok. If not try the week after. No harm.
Its not forever and there will be end to the treatment although at the time you dont think there is. Ive just finished my last one on Wednesday and thinking back 3,4,5 were my worst.
Lots of rest.
Lyn x