Busy couple of weeks coming up

Yup all done, , and already I’m in less pain. Long may it last! Next up is the immunotherapy with blood tests and medical review tomorrow. I am beginning to feel as if the end if this long run of hospital appointments might be in sight and that normal life might resume. Now wouldn’t that be nice? 

Thank you all for your thoughts and best wishes. It’s really buoyed me up. And thanks for sending the snatch squad, @gragon. I knew I recognised that foreman and that it couldn’t have been Santa at his day job. 

xx

Aaaaargh Daloni

I'm hiding under the covers, cringeing. Hi hope you are asleep now, you deserve to be.  See you tomorrow.

Tvman xx

Ooh Daloni, that made my eyes water. You are brave indeed. Hope everything goes smoothly from now on and the end of your list of appointments is near. Lynn 2.xx

Dear Friends 

I have been meaning to bring you up to date for days but I keep getting side tracked. There have been so many interesting conversations going on in the community and I’ve been so busy with one thing and another. 

Thank you all so much for your concern and encouragement during the last month of my hospital marathon. You really helped keep me going. I can now tell you I’m considerably improved.

The removal of the stent combined with the anticoagulant therapy has seen the oedema in my belly and legs reduce considerably. I’ve lost 4kg (approaching 3/4 of a stone) in weight and the clothes I bought to accommodate my swollen belly are now hanging loose. I’m not complaining.

I had a useful meeting with the consultant haematologist who explained what exactly is going on with the tumour that’s invading the inferior vena cava - the ruddy great blood vessel running up my torso. The cancer has eaten through the wall of the IVC so my blood system is recognising cancer cell surface proteins and laying down clots as a result. This brings a risk of a lump of clot breaking off and travelling to the heart or lung. The anticoagulant is dissolving the clot. I asked what kind of a knife edge I’m on and she was reassuring. I shouldn’t feel the sword of Damocles is hanging over me, she said (she was so posh it hurt) and that’s really helped my state of mind. 

I’ve given in to the mobility issues and started using a walking stick. It’s made a big difference to the distance I’m able to cover and something to lean on when I run out of steam. It’s making life easier when I have to travel to hospital appointments too - the seas part and I get to board the train first. It’s quite complicated walking a puppy with a stick. I keep having to perform a little pirouette to  untangle us. Yesterday I found a dog walking field at the nearby play park and plucked up the courage to let her off the lead. She had such fun running with the other dogs, it was a joy to see. She’s only three months and her back legs go faster than her front legs resulting in regular falls - she runs, rolls over, uses the momentum to get upright and carries right on going. 

I am in less pain. The right flank pain from the stent has reduced although it’s allowed the co existing hip pain to come to the fore. My brain is taking me down the rabbit hole labelled “spine met manifesting itself” although there was no reason to think from the scan in October that it’s large enough yet to have this kind of impact. My GP has asked me to pop by in the next couple of weeks to review where I am with pain so I’ll talk to him.

My daughter is home for a few days from university. She rang on Saturday in tears saying she was homesick and arrived home Sunday. She’ll go back tomorrow. It’s been wonderful having her back and it’s only a few weeks until the end of term now. 

Tomorrow is the last of the immunotherapy infusions. I have a scan booked on November 27 and we will review the results and talk about what’s next after that. They have another trial in mind.

It’s been a tough few weeks and I’m so glad that right here, right now, I’m feeling better after than I did at the start. 

My love to you all xxx

Hi Daloni,

you are so good at writing it all down. I find it difficult.

little things  do help like walking the puppy. He sounds lovely.

inwalk my Labrador across the fields every morning and twice a week every Wednesday and Thursday we go lunchtime and walk my daughters 2 young long hair d dachshunds they are so loving and friendly and want to say hello to all the other dogs whatever size they are. The other dogs all seem to like them.

Annette and Daloni,

I am on a break from my new drug lenvatinib until my oncologist comes back from holiday then will start again on the 2nd December. The same day there is completion on Mums house and I will get the big money to divide up between me my brother and sister. Complicated as my sister lives in Florida !

my birthday on December 5th never thought I’d make 10 years with this disease but now know the spread is such I cannot have more years left. I did ask my prognosis. We are celebrating the birthday

With husband Roger and daughter at a restaurant eating lobster.

and my son is coming home at the weekend and we will have another meal out.

i have now added Roger to my bank account to make things easier when I’m am gone . I had a joint account with my mother and it made things a lot easier paying bills etc.

sorry to ramble this is not like me 

love Ruth xx

Hi Daloni, i'm so glad your feeling better and i hope they find another trial that suits you. I will keep my fingers crossed that your scan results are good. All the best. Lynn 2 xxxx

Hi Daloni, Well, I feel much better knowing you are feeling better (if that makes sense to you!) I'm sure your team will find you the best Trial available when it's time to continue with treatment but I hope that won't be until after you've enjoyed a treatment free Christmas! Your scan next Wednesday just has to be a good positive result! Roughly how long will you have to wait for the results, do you know?

As you know, when you are having your scan, I will be having my op and biopsy. The consultant said normally the biopsy results will take a few weeks or even more but he will try to "gee them up" his words! However as we go to Manchester on 5th Dec, I don't expect to get them until after we get home on the 10th Dec!

I was so pleased to hear you have started using a stick and especially that it helps you! I do know, from personal experience, you feel quite self conscious at first but you will soon get used to it! The way I look at it is, if you can't read a book, you get reading glasses to help, so why not use a stick if it helps, it's just common sense! It must have been good having both daughters around. Just think in a few weeks you will have them both for longer than a couple of days! Now that's something to look forward to!

Now what I am very concerned about is your little dog Noodle! You haven't said what happened but if he now also uses a stick, of course it is not easy!! Quote "It's quite complicated walking a dog with a stick"!!! LOL!!! Poor wee thing! Oh sorry, I couldn't resist it!

Hope everyone has a fantastic Thursday and Friday and an even better weekend!

Hi Ruth, It's good to read things are coming to an end with the selling of your mum's house etc. It is a lot of work clearing a loved ones house and getting it ready for the property market but you are nearly there! Your lawyer, or you, shouldn't have any trouble transferring funds to your sister in Florida, these things are done world wide every day!  was wondering when I read about you getting a joint account with Roger, have you also sorted out a Power of Attorney for your health with either your husband or son named to look after your wellbeing? That was one of the first things I did after my dx as it gives me peace of mind! You will be looking forward to having your son home. Will he be able to stay for the whole Festive Season?

Your birthday celebrations sound terrific! Although I'm not overly fond of lobster! Try to go out for lunch and dinner as often as you can as a birthday is an ideal reason for eating out! By the way, it's lovely to see you ramble! Take Care 

.

Hi and anndanv

Do you mind if I weigh in with my tuppence worth regarding the dog with a stick theme? Annette, you and I have the same comical look at dog with a stick thoughts lol.

Daloni, it may seem awkward at first, but you will get used to it and it'll be second nature in no time. Stick at it . Noodle will love the walk, stick or no stick. It's good for his and your mental health. There's a cosy, satisfying, immersive feeling when you walk a dog. Don't you think?

My dog and I have mastered walking using my motorised scooter. If the weather is fine Conan and I will head out on the country road using the motorised scooter! I don't have a choice, it's nigh impossible to use the manual wheelchair although Conan, (he's a fairly big dog, a Soft-coated Irish Wheaten Terrier) can pull me along to a certain extent.

We live in a country area and the 3 mile road isn't that busy so t have never had any issues with drivers. I wave at every driver, up to a dozen both ways by way of acknowledging that they slow down, and they wave back. As soon as Conan sees me putting on the hi viz jacket he knows that it's walkies time. 

I travel at a fairly slow speed so that gives him plenty of sniff time and he has learned to stay left or he'll get nudged by the scooter.

So, using a topical word, keeeeep walking!

Tvman xx

Crikey Daloni u dont do things by half. Eyes r watering & legs r wedged tight 2gether at the description of the tube removal...

Everyone has so much encouragement 4 each other here, its brill.

Now on hols 4 a long weekend. Off 2 c Priscilla Queen of the Desert at the theatre 2morrow. Already seen it a few years back but my chum hasn't. Also gonna have a meal at a posher than normal restaurant 4 us #superexcited #muchgossip #alldaytrip

Enjoy ur weekend guys

WB xx